Quality Account 2023

Annual Quality Account
1 April 2022 to 31 March 2023
Registered Charity No. 1003314 Company No. 02620879 (England and Wales)

Contents
Part 1:
Introduction,
our purpose and
our core values 1
Introduction .......................................1
Our purpose,
vision and ethos ................................2
Our core values
and behaviours..................................2
Part 2:
The difference we
make; meet some
of our children 3
Little Harbour ....................................3
Little Bridge House ..........................4
Charlton Farm ...................................5
Part 3:
Statement of reassurance
from the Board and
review of our services6
Overview of our care .......................8
Priorities for improvement .............9
What we said we were going
to do in 2022 to 2023 -
quality priorities ............................. 10
Where are we going in
2023 to 2024 - objectives
and priorities................................... 12
What we want to achieve
in 2023 to 2024 and our
plan for success .............................. 13
Part 4:
Review of
our services16
Where our funding
comes from ..................................... 16
Our unique care............................. 17
CHSW hospice
activity levels .................................. 19
Reports from Hospice
Registered Managers .................... 24
How our 3 hospices
support the whole family............ 33
Part 5:
Compliance and
quality metrics 44
Participation in
clinical audits .................................. 44
Regulation and external
quality assurance........................... 45
Internal audit
and compliance.............................. 45
Children and young people
safeguarding review ...................... 53
Medicines management
and controlled drugs ..................... 56
Education and development....... 60
Commitment to research
and education................................. 62
Care developments ....................... 63
Service user experience ............... 67
Part 6:
Statements from
Integrated Care
Boards72
Statement from NHS Bristol,
North Somerset and South
Gloucestershire ICB ...................... 72
Statement from
NHS Devon ICB ..............................74
Statement from NHS Bristol,
North Somerset and South
Gloucestershire ICB ...................... 75
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 1: Introduction, our purpose
and our core values
Introduction
The quality year 2022 to 2023 has
been a period of recovery, reset and
transformation. We have taken time to
review our Care Model, opportunities
and learnings from changes within our
hospices during coronavirus (COVID-19).
This has helped us shape our Care Model
and strategy work as we strengthen and
advance our teams to provide and sustain
skilled, resilient and responsive hospices.
We are proud that we have continued to
keep children, young people and families
at the heart of our decision-making;
planning, care delivery and the safety of
our children, young people, families and
staff has been our central focus. We have
continued to focus on delivering high
quality care during what has been a very
fluid period, ensuring stringent infection
prevention and control measures have
been implemented and maintained in-line
with national guidance throughout.
Organisations are required under the
Health Act 2009 and subsequent Health
and Social Care Act 2012 to produce
Quality Accounts if they deliver services
under an NHS Standard Contract, have
staff numbers of more than 50 and
NHS income greater than £130k per
annum. This annual Quality Account for
Children’s Hospice South West (CHSW)
is compiled from data from 1 April 2022
to 31 March 2023. This report has been
coordinated by the Deputy Director of
Care (Quality) with input and support
from the Senior Care Leadership Team,
the Medical Directors, the Quality,
Education and Digital Team and our care
staff in all 3 hospices. We are proud to
showcase our dedication to delivering
high quality care to our children, young
people and their families. The report
provides a balanced picture of what we
do well, but equally the areas we wish to
do better in, and our improvement plans.
Our improvement work links to our
quality priorities. These are:
Safe: we are committed to
providing the safest care possible
for our children, young people and
their families.
Effective: we seek to provide care that
is among the best in this sector and
work with our children, young people,
families and stakeholders to improve
the effectiveness of our care.
Experience: we aspire to give
our children, young people and their
families the best possible
care experience.
Each of the 3 hospices within CHSW
has contributed to this Quality Account.
This provides each hospice with an
opportunity not only to report against
the CHSW wide quality indicators
and initiatives, but also to describe
the many excellent local achievements
and quality plans that are responsive
to more localised need.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 1

Part 1: Introduction, our purpose and our core values
Our purpose, vision and ethos
Our purpose is to make the most of short and
precious lives and to put children, young people and
their families at the centre of all we do.
Our vision is to provide high quality care to every
child and young person in the South West who may
not live to their 18th birthday.
Our ethos is to ensure that everyone (Trustees, staff
and volunteers) places children, young people and
their families at the centre of the organisation.
To achieve this, everyone will be expected to
promote a strong, caring, community environment,
characterised by a culture of sensitivity, trust,
consideration and respect for others.
Our core values and behaviours
Everyone working for, or on behalf of, CHSW will act to or with:
C H
are and respect
onesty, openness
for each other:
and accountability:
Recognising and
Behaving with
accepting our
openness, integrity
responsibility
and honesty
for safeguarding
children and adults,
protecting them
from harm
Acting fairly and
with consideration,
treating others as
we would wish to be
treated ourselves
Finding out what
other colleagues do,
encouraging them
and recognising
the value that
each brings to
the organisation
Embracing and
recognising
the importance
of difference
and diversity.
Communicating
swiftly and openly
and listening
to the views of
others respectfully
Taking responsibility
for your own
actions and being
accountable for them
Sorting out mistakes
and concerns swiftly
and without fuss.
Strive for
excellence:
Seeking to
continuously develop
and improve for
your own benefit
and the charity
Always protecting
the reputation of
the charity
Celebrating success.
Work
together:
Ensuring dynamic
and harmonious
team working to
achieve success
Working with
and involving our
families, supporters
and volunteers,
understanding who
they are and what
their needs might be
Making the best use
of organisational
resources; having
regard for
sustainability,
efficiency and
respect for the
environment.
Page 2 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 2: The difference we make;
meet some of our children
Permission has been sought and obtained by
the parents to tell their child’s story
Alex and his family have been visiting
Little Harbour since he was 4
The Care Team tell
Alex’s story
Alex has been coming
to Little Harbour since
he was 4 with his mum
Lucie, dad Sean and little
sister Faye.
Alex is now 10 and has
Infantile Neuroaxonal
Dystrophy, which is a
rare inherited disorder
affecting the nerves in
the brain, and elsewhere
in the body, causing
deterioration of many
functions. Alex has
epilepsy, central apnoea
and relies on oxygen
24/7 for breathing and
a gastrostomy (a tube
straight into his stomach)
for feeding.
Alex enjoys coming
to Little Harbour for
resilience stays with his
family, he particularly
enjoys the hydrotherapy
pool. Faye enjoys spending
time with the Sibling Team
and making friends with
the other children.
In 2022 Alex had a
deterioration in his health
and discussions around
end of life care were
started and an advanced
care plan was completed.
Lucie and Sean spent
time thinking about what
they wanted for Alex
and his future, taking
into consideration his
healthcare needs. Their
main priority was for Alex
to be comfortable and
enjoy his life regardless
of how long that may be.
The family utilised support
from Little Harbour in a
variety of ways.
Due to his health, Alex
had a period where he
wasn’t able to go to
school. As part of our
new ways of working,
we were able to offer
home, hospice and virtual
support. This flexibility
helped us to support Alex
in the best way possible.
We were able to provide
community shifts in the
home knowing family
time was a priority for
Lucie and Sean. This
enabled them to have time
together, knowing they
had help to support Alex’s
medical needs.
We also continued to offer
resilience stays in-hospice,
so the family could come
in regularly for some rest
and TLC. The family had
regular visits which gave
them something to look
forward to, knowing they
could have some well
earned rest and enjoy the
facilities at Little Harbour
with Alex and Faye.
Alex has also enjoyed
Music Therapy sessions
during his years at Little
Harbour and more
recently he has had some
virtual sessions via Zoom.
Alex and his family
continue to be supported
by Little Harbour and
dad Sean is running the
London Marathon to
raise money for CHSW.
At the time of writing
this, the family are in
for a resilience stay and
we are getting the staff
and children to make a
banner for Sean to show
our support while he is
running the marathon.
Good Luck Sean!
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 3

Part 2: The difference we make; meet some of our children
George and his family have been
visiting Little Bridge House since 2015
The Care Team tell
George’s story
George was referred
in March 2015; he has
Cerebral Palsy and Spastic
Quadriplegia, he was born
prematurely at 28 weeks
and is the surviving twin of
a twin-to-twin transfusion.
He is now 17.
Initially, George and his
family visited for regular
resilience stays to get to
know him and his family.
George is non-verbal but
quickly showed he could
communicate his likes and
wishes, and be very clear
when he did not want to
do something!
In July 2022 George was in
hospital very unwell with
concern that he was at the
end of his life. Mum was
clear in her wish for George
to be at Little Bridge House
for his care. We began
planning George’s transfer
while sending members of
our team to the hospital to
support George and Mum.
During this in-reach, one of
our team was able to use
her knowledge and skills
to understand the cause of
George’s distress. She was
then able to support the
hospital in their care.
George was transferred to
Little Bridge House for end
of life care on the 28 July
2022 and we made him and
Mum comfortable. After
careful assessment, George
was put on a syringe driver
to optimise his comfort.
The family spent time
together making memories.
We supported Mum and she
talked about George’s twin,
who had sadly died at 3 days
old, and we empowered her
to include him too.
COVID-19 was ongoing so
we had to consider infection
control while keeping
George and his family at the
centre of our care. We were
able to safely support visits
from his wider family.
Despite being so unwell,
George was able to express
how he felt. We carefully
communicated with him to
allay his fears and empower
him to make decisions. We
noted a reduction in his
anxiety levels; George, for
the first time showed us who
he was, his voice was heard.
He is very funny, extremely
cheeky and can tease staff
without them realising. He is
strong willed but sensitive,
he enjoys the quiet but
loves being sociable, being
outside, listening to stories
and pyjama days!
George’s seizures continued
to be medically managed
by us. Slowly we saw an
improvement in his condition.
After 9 days he was receiving
symptom management
rather than end of life
care and his syringe driver
was gradually withdrawn.
We then spoke with the
Community Team to explore
options as he stabilised.
We participated in
MultiDisciplinary Team
(MDT) meetings and made
plans for George to return
home. We trained Mum
in the care and use of
nasogastric tubes and made
home visits to support her
and assess his progress. He
returned to us in September
2022 for an emergency
resilience stay to further
support Mum and allow
her some needed rest.
Unfortunately, Mum’s health
deteriorated and she was
admitted to hospital. This
meant George went into
hospital. A solution was
needed to meet George’s
care needs and we again
helped with in-reach hospital
visits and community visits
to his placement. We also
attended regular MDT
meetings and supported
them with feeding advice.
In November Mum remained
in hospital and George in his
placement but he continued
to be fragile and have health
complications. We offered
them a Christmas stay so
they could be together and
make memories. Christmas
is George’s favourite time of
year and the snow machine
in the garden was a highlight
for him and the staff.
We have continued to
support George and Mum.
The team is now looking to
transition George into adult
services as he begins his
next chapter.
Page 4 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 2: The difference we make; meet some of our children
Jacob has been visiting
Charlton Farm since 2019
The Care Team tell
Jacob’s story
Jacob was referred to
Charlton Farm in 2019.
Initially, Jacob was very
shy and reserved but,
within a short time, Jacob
found his witty side and
has an excellent repertoire
of 1 liners.
Jacob loves coming to
stay with us and uses
all of the facilities we
have here, especially the
hydrotherapy pool. Jacob
loves the opportunity to
be independent and to
allow his parents time to
be together and to relax,
either here or at home.
Jacob really enjoys his
Sunday roast, especially a
bowl of gravy.
During a conversation
with Dad, it came up that
Jacob really likes football
and his favourite team is
Bristol Rovers. At Charlton
Farm, we try to find
activities both in-hospice
and in the community
that enable our children,
young people and families
to make memories and the
most of the opportunities
available to them.
We are fortunate to
have really good links
with several of our local
football and rugby teams
and other neighbouring
activity providers.
As Jacob is a fan of Bristol
Rovers, we were able to
secretly (or so we thought)
facilitate a once-in-alifetime
opportunity for
Jacob to attend the club
ground and to watch the
game. Unbeknown to us
all, Jacob was well aware
of this as he had read his
mum’s emails. This really
sums up Jacob’s ability to
surprise us. Although he
was aware he was going to
the game, what he didn’t
know was that he was also
going to meet the team
and management, and was
especially thrilled to meet
Aaron Collins who is his
favourite player. Purely by
coincidence, and to Dad’s
amazement, in the same
box was Chris Sanigar, a
former world champion
boxer who shares the
same passion for football
and was also able to make
Dad’s day.
Jacob had a brilliant day
and was totally exhausted;
we believe he came home
with the contents of the
gift shop in his chair!!
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 5

Part 3: Statement of reassurance from
the Board and review of our services
In this Quality Account we look back on 2022
to 2023 when the Government had just removed
the domestic legal restrictions for COVID-19.
However we still had to follow the NHS guidance
for quite some time into the year.
By the end of the year we were welcoming
increased numbers of children, young
people and their families back into the
3 hospices as well as continuing to
deliver care virtually and in their home.
This is now our established Care Model
offering different choices to families of
how they receive support. We are caring
for children and young people with very
complex conditions that require greater
levels of expertise and we have also
seen an increase in the number of babies
referred for end of life care.
Throughout the year we have continued
to experience the impact of staff or
their close contacts testing positive
for COVID-19. Coupled with the impact
of the national shortage of qualified
nurses with the skills and experience we
require to deliver complex care
to children and young people with
life-limiting illnesses it is fair to say
the year has been challenging. In spite
of this I am pleased to report that we
consistently deliver care and support to
a high standard, often over and above
those required by regulation.
This report illustrates what can be
achieved in difficult circumstances;
safety and quality can be maintained
and enhanced and further financial
investment can be made in our service.
On behalf of the Board of Trustees I want
to say thank you to every member of staff
and the volunteers who contribute to the
success of Children’s Hospice South West.
Tricia Morris
Chair of Trustees
Page 6
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 3: Statement of reassurance from the Board and review of our services
The families we care for have the right to
expect the highest quality of care and support.
The Quality Account is full of testimonials
about the care received. It demonstrates the
high level of commitment and professionalism
of our Care Teams in ensuring the highest
standards of safety and compliance in the
very challenging circumstances described
by our Chair in her remarks. It is also pleasing
to note that we did what we set out to achieve
during the year.
It is most valuable to have qualitative information
backed up by quantitative information to share in
this immense portfolio of good practice evidence
drawn from audits, policy and practice reviews,
research and collaboration. We appreciate the
endorsement of this report by Integrated Care
Boards (ICBs) confirming the professionalism of
CHSW and providing outside assurance of a job
well done.
To the best of my knowledge, the information
reported in this Quality Account is accurate and a
fair representation of the quality of care and support
provided by our hospices and has been approved by
the Care Assurance Committee who will recommend
its approval to the Full Board of Trustees on
Thursday 13 July 2023.
Finally, thanks are due to the Director of Care and
her team for all they have done during the course
of 2022 to 2023.
Eddie Farwell MBE
Co-Founder and
Chief Executive
As Director of Care, I like to feel I am connected
with the teams and enjoy hearing all of the stories
while sharing the daily challenges we face
throughout the year. Yet I am always absolutely
amazed when I read the achievements of the
year in the Quality Account, just how much is
achieved and this year is no different.
The teams have faced difficult times with enthusiasm,
professionalism and dedication with a shared vision
and ethos to provide the very best care, when the
children, young people and families need it most.
The stories shared are heart-warming and remind
me of the busy year it has been. We see many more
children and young people with a shorter journey
from referral to death, demonstrating we are working
with families who previously may not have accessed
children’s hospice care.
It is a privilege to be Director of Care at CHSW, a
role I take very seriously, this Quality Account shares
transparently, how we prioritise safety and standards
while delivering family centred care and a sense of
fun. As we end this year we say goodbye to a key care
leader Debs Hounsome, Deputy Director of Care for
Quality, who has led effectively ensuring standards
and compliance are in the centre of everything we
do. I want to personally thank Debs for her hard work
and the wonderful legacy of standards she leaves us
with. She has been influential in improving the care for
children, young people and their families and made a
real difference.
There is still so much work to do for the year ahead
taking forward the building blocks described in this
report with end of life care, implementing digital care
records and reaching more children, young people and
families. The team at CHSW, I know will embrace this
challenge and use this report to help steer us forward.
This report is in my view a record of excellence and a
tool for growth and I look forward to 2023/2024.
Allison Ryder
Director of Care
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 7

Part 3: Statement of reassurance from the Board and review of our services
Overview of our care
CHSW is a regional charity that provides hospice care to children,
young people and their families who live in the South West of England.
This includes Cornwall and the Isles of Scilly; Devon, Plymouth and
Torbay; Somerset; North Somerset; Bristol; Bath and North East
Somerset; South Gloucestershire and West Wiltshire.
We have 3 hospices; Little Bridge House
in North Devon, Charlton Farm in
North Somerset and Little Harbour
in Cornwall. We provide hospice care
for children and young people
living with life-threatening or
life-limiting conditions and their
whole family across the South
West. Our care and support is
offered following referrals from
the NHS, Social Services, other
organisations and direct from families.
Each hospice has been located in a
tranquil setting with quiet reflective space,
sensory gardens and specialist play equipment.
Most of our families will receive support from
us for up to 10 years, although as we reach
out to more families, we are increasingly able
to offer our care and support to children,
young people and their families who have
a much shorter journey. When
children and young people need
it, we offer emergency care,
symptom control and end of
life care in a peaceful and
comfortable setting.
Our support
for families
is ongoing,
including care
of their child
after death
and ongoing bereavement
support for parents and siblings.
What is a life-limiting condition?
Nationally, there are estimated to be 99,000 children and young people (under 18) living with a life-limiting
or life-threatening condition. Life-limiting conditions are those for which there is no reasonable hope of cure
and from which children and young people will die. Some of these conditions cause slow deterioration over
time, rendering the child or young person increasingly dependent on parents and carers. Life-threatening
conditions are those for which curative treatment may be feasible but can fail, such as cancer.
Together for Short Lives data March 2023
Page 8
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 3: Statement of reassurance from the Board and review of our services
Priorities for improvement
In the Quality Account for 1 April 2021 to
31 March 2022, we made a commitment
to several quality priorities for the
coming year. This part of the report
sets out how well we performed against
our 2021 to 2022 quality priorities.
The term ‘quality’ can mean different
things to different people, so it is
important that when we talk about quality
there is a shared understanding.
Quality care is defined as care that
is effective, safe and provides as
positive an experience as possible,
by being caring, responsive and
person-centred.
Care should also be well-led,
sustainable and equitable.
The Health Foundation April 2021
Our priorities are focused on
achieving quality in all that we do.
Effective
Safe
Experience
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 9

Part 3: Statement of reassurance from the Board and review of our services
What we said we were going to do in 2022 to 2023 - quality priorities
Priority area: Safe
Aim 1: To implement a Clinical Information System (CIS) to support safe practice.
Outcome: We have fully implemented Vantage as the governance system throughout care and are on track
to deliver and implement the care records element of the project in the next quality year.
What we did:
Recruited additional digital resource
Further development and roll out of further modules on Vantage governance system
Developed a bespoke end of life care plan on Vantage to facilitate collaborative working with partner
providers for the Bristol, North Somerset and South Gloucestershire End of Life Care (BNSSG EoLC) project
Worked ICB regional digital leads on options for access to NHS records such as Orion
Completed data mapping of all electronic and paper records
Commenced record retention programme in preparation for data migration to a new system
Are in the final stages of the procurement process of the new system
See Part 5 for further details on the CIS project.
The difference this has made:
Care Team have transitioned from paper to digital systems, building confidence, ability and capacity
We have a robust governance system for items such as risk management, incident reporting and learning,
equipment maintenance, training records and Information Governance (IG)
Registered Managers and the Senior Care Leadership Team have easy and quick access to centralised,
live data and reports
Increased accountability
Facilitated good record keeping, excellence reporting and learning.
What is Vantage?
Vantage Technologies is a data management
software developer which specialises in hospice data
management software. The software provides a range
of modules to manage governance data and supports
Care Quality Commission (CQC) compliance.
Page 10
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 3: Statement of reassurance from the Board and review of our services
Priority area: Effective
Aim: To increase our reach, provision and activity, in-line with a new Care Model and Strategy by increasing
the care staffing resource and through enhancing and expanding the Care Team’s skills and knowledge.
Outcome: We achieved this target.
What we did:
Established new positions and recruited a Deputy Medical Director at each of the 3 hospices to strengthen
the Medical Team, providing greater resilience, expertise and cover
Established a new position and recruited a third Deputy Director of Care (children and families)
Established new roles and recruited 2 Senior Team Leaders (Band 7) for education and quality
Established new roles and recruited an Operations Lead at each of the 3 hospices to support the day-to-day
running of the hospices and free the Head of Care from some administrative duties
Continue to train nurses as Non-Medical Prescribers
Review and relaunch of nurse recruitment campaign
Positive changes to pay and terms and conditions as part of our recruitment and retention strategy
Supporting 3 members of care staff to undertake the Paediatric Palliative Care (PPC) course at the University
of the West of England (UWE Bristol)
CHSW has provided bespoke training to other providers on symptom control and end of life care
Created a new team leader (Band 6) outreach post at Taunton for a CHSW Nurse to work collaboratively with
local NHS services to support CHSW in the locality
Appointed to the nurse post joint working with Bristol Children’s Hospital
2 days a week clinical facing appointment at CHSW (Little Bridge House) of the Lead Nurse for the
South West Children’s Palliative Care Strategic Clinical Network or Children and Young People Palliative Care
Lead Nurse in Devon to provide increased collaboration with Devon partners and to engage with external
teams to develop end of life care wherever the child, young person or family wishes
Commenced engagement work with local university links to scope opportunities for professional
development and support for CHSW staff.
The difference this has made:
Positive recruitment - increase in enquiries and applicants across all vacant positions
Vacancy rate has improved
Improved staff engagement and feedback about career and professional development opportunities at CHSW
Better engagement, collaboration and understanding of CHSW with partner agencies and wider teams,
evidenced by earlier (in the child’s journey) referral times
Reached children and families in geographical hard to reach areas.
What is a Care Model?
The Care Model is the term we use
to describe how we deliver care,
who is needed to deliver it and
where care is provided.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 11

Part 3: Statement of reassurance from the Board and review of our services
Priority area: Experience
Aim: To continue to engage with children, young people and their families to ensure we meet their needs.
Outcome: We achieved this target.
What we did:
Appointed a Deputy Director of Care (children and families) to lead the family support arm of care and the
focus will be on holistic and therapeutic support
Reintroduced face-to-face support groups and sessions
Employed some different mechanisms to gain feedback in the hospices such as monitoring compliments,
complaints and concerns
Listened and responded to in the moment feedback
Communicated by letter with every family on our caseload to describe our different ways of working
(compared to pre-COVID-19) and invited feedback and comment
Listened to and responded to feedback from other professionals about the need to support children
diagnosed with life-limiting illnesses but who do not meet our eligibility criteria as they are expected to
survive into early adulthood.
The difference this has made:
Feedback has allowed us to understand what is working well and what needs improving, how we could do
things better or differently, and what families want more of
Where we have been unable to meet family’s needs, clear and candid communication has provided them with
an explanation and what viable alternatives are available to them
Teams have increasingly utilised the hospices for day visits - gardens, hydrotherapy pool and Music Therapy
Care Teams have recognised from feedback that care planning is complex and have considered home visits or
sessions over Zoom prior to stays to help lessen the time on arrival and stress for families
Liaised and signposted to other agencies where families can gain support that is outside of the hospice remit,
for example referring to local food banks.
Where are we going in 2023 to 2024 - objectives and priorities
The following section provides detail of quality
improvement projects CHSW will undertake in 2023
to 2024. The CHSW values run through every aspect
of our work and they govern the way we think but,
most importantly, the way we deliver our care to our
children, young people and their families.
CHSW exists to make the most of short and precious
lives and puts children, young people and their families
at the centre of all it does. The quality improvement
priorities below are in-line with the priorities set out in
the Strategic Plan and a continuation of last year’s:
To develop and grow our clinical expertise and
resilience to respond when families need us most
To offer families choices with flexibility about how
they access our care and where they wish to be at
the end of life.
Page 12
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 3: Statement of reassurance from the Board and review of our services
What we want to achieve in 2023 to 2024 and our plan for success
Priority area: Safe
Aim: To implement a digital clinical records system as part of the Care CIS programme.
Why have we chosen this?
We wish to continue to build on the success of the digitalisation within care. Care have been progressing digital
transformation across all areas of care delivery during the past 3 years and includes a digital governance system
(Vantage); a digital skills learning platform, clinicalskills.net; the implementation of a digital care records system,
and access to NHS records is the final part of this transformation programme.
Successfully implementing the digital system, to replace the current care database and paper care records and
documentation, will ensure full compliance with the commitment set out in the NHS Long Term Plan of achieving
paperless care records and:
Provide access to NHS Shared Care Records (SCRs), such as medications and hospital communication across
all our 3 hospices using regional and/or national digital systems
Enable a partnership approach around care, particularly end of life care planning
Provide access to care records in the community
Facilitating regulatory compliance
Strengthened communication
Free up of vital resource allowing more ‘patient’ contact
Robust record keeping and reporting
Provide real time live data.
How will this be achieved?
Progressing the purchase of the new system through to implementation and go live by the end 1 April 2024.
Next steps:
Staff engagement and communications
Review of all clinical forms and paperwork
System build and data migration
Staff training
Pilot stage and review
Go live 1 April 2024.
How will progress be monitored?
Regular project progress reports to Quality Governance, Care Assurance, Senior Management Team (SMT)
and the Board
The CIS Project Team meet weekly to plan and review actions listed
The CIS Project Team report through Deputy Director of Care to the SMT and IG Steering Group.
Thank you all so much for taking such amazing care of
us. You have managed to take us from dark places at
times and made us laugh, smile and feel happy again.
Starting to come here was one of the best decisions
ever! It really has been our ‘Happy Place’.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 13

Part 3: Statement of reassurance from the Board and review of our services
Priority area: Effective
Aim: Develop and grow our clinical expertise and resilience to meet the changed nature of demand and therefore
improve our response when children, young people and families need us most.
How will this be achieved?
Strengthen the Senior Care Leadership Team to provide increased resilience, 24/7 cover and visibility across
all 3 hospices to ensure care is safe and well-led
Continue to ensure the hospice teams work collaboratively to build durability and achieve safe staffing
throughout the hospices
Continued financial investment in increasing the Care Team workforce establishment in-line with the
recruitment and retention strategy
Continue to standardise and professionalise internal training programmes, including induction and core
competencies
Evolve the strategic links with local universities
Continued investment in external and post registration training
Review of new shared/joint roles with partner providers, providing geographical reach and expand to other
areas if successful
Deliver the caseload review to provide each family with an individual hospice offer within a framework that
provides equitability and equality of access, and provision that is linked to needs based outcomes rather than
the same offer for all.
How will progress be monitored?
Regular progress reports to Care Assurance, SMT and the Board
Through recruitment and retention figures
Monitoring of vacancy rates
Activity tracker
Monitor complaints and concerns for themes
Family feedback
Staff feedback
Training data and metrics.
It is difficult to express my gratitude to everyone at
Charlton Farm for the care you gave to my beloved
grandson and our family. For him to enjoy his life right
to the end and to die peacefully in a safe environment
was reassuring to us all. Our lives have changed
forever, but the kindness, the skill and respect and
experience from every individual, whatever their role,
gives us strength to move forward.
Page 14
Annual Quality Account - 1 April 2022 to 31 March 2023

Part 3: Statement of reassurance from the Board and review of our services
Priority area: Experience
Aim: To continue to develop and increase the ways we engage with families and increase mechanisms to gather
service user feedback.
How will this be achieved?
Improvement of digital engagement with children, young people and families
Development of different ways of seeking feedback from children, young people and families
Increase use of digital tools for feedback
Continue to evolve the transition work including a new post with transition as a focus
Draw on this year’s feedback which confirms that families like the choice of in-hospice, at home or virtual, and
that through the prioritisation approach, families’ urgent needs are supported and are able to access hospice
care at very short notice
We wish to undertake a quality improvement project in the next quality year which will focus on improving
the child and family experience of arrival at the hospice site, as this is an area which families repeatedly tell us
can take too long and there are too many competing demands at the same time.
How will progress be monitored?
Listening and responding to all feedback, irrespective of how it is provided
Analysis of experience data
Reviewing and learning from all complaints, concerns and compliments
Evaluation of support groups, such as bereavement groups
Review of Quality Improvement Project.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 15

Part 4: Review of our services
Where our funding comes from
In the financial year from
2022 to 2023, the funding
contribution from NHS
sources for the provision
of care was £2.2 million,
and comprised funds
from contracts with
Integrated Care Boards
(ICBs) and the NHS
England Children’s
Hospice Grant. This
constituted 25% of our
charitable expenditure
and 14.5% of our total
expenditure. In 2022 to
2023, the remaining 75%
was generated through
donations, legacies,
voluntary fundraising
and trading. From the
income generated from
contracts with the NHS
in 2022 to 2023, 100%
of this was spent by
CHSW in providing care.
The normal day-to-day
running costs of care for
children, young people
and their families was
£8.8 million, with ongoing
running costs for the
whole organisation being
£15.1 million.
Integrated Care Boards
Total number of
children and young
people supported
during the whole year
Number of children
and young people
supported as at
31 March 2023
NHS Bath and North East Somerset
(BANES)
NHS Bath and North East Somerset,
Swindon and Wiltshire (BSW)
NHS Bristol, North Somerset and South
Gloucestershire (BNSSG)
28 0* (26)
0 54 (0)
150 153 (136)
NHS Wiltshire 20 0* (19)
NHS Cornwall and Isles of Scilly 112 112 (102)
NHS Devon 184 178 (159)
NHS Somerset 69 56 (56)
NHS Local Commissioning groups
where there is currently no agreement
in place and children and young people
are out of the area
Total number of children and
young people supported
The number in brackets is last year’s total
2 0 (1)
565 553 (499)
*Merger of ICB areas during the year
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Annual Quality Account - 1 April 2022 to 31 March 2023

Part 4: Review of our services
Goals agreed with Commissioners
Use of Commissioning for
Quality and Innovation payment
framework. CHSW’s income is not
conditional on achieving quality
improvement and innovation goals
through the Commissioning for
Quality and Innovation payment
framework. However, CHSW
works closely with Commissioners
and although not always a
contractual requirement, we
produce quarterly activity reports
and a quality dashboard to enable
us to share details and give an
overview of the work undertaken
by our Care Teams.
Our unique care
Time to care
At CHSW we believe
in ‘Time to Care’ and,
as a standard, provide every child
or young person with one-to-one
care; giving families confidence to
take a break from care duties and
concentrate on being a family.
We have several children or young
people who require 2 Care Team
members (and a small number
benefit from 3 Care Team
members) allocated to them to
ensure their needs are met safely
and effectively. These children
and young people may have
behaviour challenges, require
ventilation or are susceptible to
a high number of seizures.
Types of care
Hospice stay. Many
of our children and
young people come with family
members, usually parents and
siblings. We offer a supportive
and relaxed environment where
children and young people living
with life-limiting conditions and
their families can take a short
break away from home to recharge
their batteries in a homely, warm
and welcoming setting.
Many of the children and young
people who receive our care are
medically extremely complex (for
example, including: tracheostomy
ventilated; complex seizures and
complex feeding regimes). It is
paramount that both their nursing
and medical needs are met to a
meticulously high standard and
they are supported, in a less
clinical environment, to have fun
and make the most of the hospice
facilities and opportunities. These
stays give our team moments
to build supportive and trusting
relationships with the family.
It is often during these hospice
stays that opportunities arise for
key conversations; for example,
sitting down with a family during
lunch or in the garden can often
result in conversations that are
much more challenging. We have
continued to support our children,
young people and their families
in many ways, including resilience
support in-hospice and at home.
Step-down stays from hospital.
This is when a child or young
person has had a significant
hospital stay, such as, where the
child or young person’s medical or
care needs on leaving hospital are
significantly different from those
when admitted, or/if they have
never been home before and/
or if there has been a significant
reorientation of direction of
care. We then do our best to
accommodate step-down stays
for families to regain their
confidence in providing care
before returning home.
Day care. This is either used to
introduce children, young people
and their families to our hospices
or to support children, young
people and their families with
discrete needs, such as specialist
equipment for bathing, access
to specialist activities, (such as
hydrotherapy and Music Therapy),
on an outpatient basis for specific
care, such as administration of
intravenous medication, or simply
for social support.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 4: Review of our services
Types of care (continued)
Medical care. From
a medical perspective,
our team are increasingly involved
in the care of children and young
people on our caseload, wherever
their care is being delivered (such
as in reach to hospital, advice
regarding symptom control during
hospital stays, attendance at
key care planning discussions
and leadership of advance care
planning discussions when
required). We are also increasingly
contacted by local Neonatal and
Paediatric Teams from around the
region for advice about symptom
management and advance care
planning for antenatal referrals,
babies, children and young people.
For children and young people
known to us who are dying in
hospital or at home (and who
do not wish to transfer to the
hospice at that time), we provide
medical advice to the hospital or
Community Teams.
Symptom control. These
admissions are to support
specialist medical and nursing
provision to help manage a child
or young person’s symptoms.
Frequently, these admissions
support acute hospital discharge
or facilitate admission avoidance.
This alleviates pressure on acute
services and allows the child or
young person and family to be
cared for in an out of hospital
environment. Our Medical Team
liaise with hospital and community
speciality teams as required, to
ensure care remains as ‘joined up’
as possible.
End of life care. For children
and young people living with
life-limiting or life-threatening
conditions, there are important
decisions to be made along the
way. Our teams work closely with
Hospital Teams, participate in
multi-disciplinary meetings and
meet individually with families
to support key discussions,
including symptom planning and
advance care planning. Families
known to us (including those
referred urgently) can stay at the
hospice for the duration of their
child’s end of life care. They may
come to us from home or from
an acute setting, either via their
own transport or via a medical
transport team if they are less
stable or receiving ongoing
intensive treatment (for example,
ventilation) at the point of transfer.
The length of end of life provision
varies hugely, from a few hours
to several weeks. Average length
of end of life care during recent
years has been 2 weeks. Our team
work holistically with the child or
young person and family during
that time to make the most of
memory making opportunities, to
ensure the child or young person
remains comfortable and to meet
the communication needs of the
whole family.
Bereavement care. After a child or
young person has died, we can, if
the family wish, care for the child
or young person and the family in
the hospice for up to 7 days. We
call this Starborn care, describing
the special room where this care is
provided. This can be for families
where the child or young person
has died in the hospice and also
for families known to us, when
their child has died elsewhere.
During these stays, our team
support the family in registering
the death and arranging a funeral,
as well as emotional support for
parents and siblings.
The majority of our children,
young people and their families
receive our care for between
8 to 10 years, and the value of the
care received during this period
is well documented. For some of
our children, young people and
their families, the pathway is
short but nevertheless equally
as important and beneficial.
Time in Starborn for families and
siblings enables us to support
memory making and starting
their bereavement journey.
Our teams are also increasingly
contacted by healthcare
professionals for advice about
care after death and processes
(for example, Child Death review
processes; Coroner’s referrals
and care of the body) related
to children and young people
who have not been known to
the hospice.
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Annual Quality Account - 1 April 2022 to 31 March 2023

Part 4: Review of our services
CHSW hospice activity levels
The following data is a summary of
our activity during 2022 to 2023.
There is no national minimum data
set for children’s hospices.
CHSW has been able to sustain
a region wide presence, allowing
children, young people and their
families to access our care and
support close to home. This
benefits the family, particularly
at the end of life, as they are still
close enough to receive support
from family and friends in the
area, while we support all those
close to the child or young
person at such a difficult time
in their lives.
Care activity; who we are supporting?
560
children and young people
were supported by CHSW
in 2022/2023, a decrease
of 5 from the previous year.
991
parents or carers were supported
by CHSW in 2022/2023, a decrease
of 132 from the previous year.
927
siblings were supported
by CHSW in 2022/2023,
no change from the
previous year.
Age range
CHSW cares for children and
young people of all ages, from
neonates to teenagers, and can
continue to care for some very
poorly young adults who are
in the end stages of their life.
The largest group of children
who receive our care are
primary school age.
15.9%
are pre-school (age
4 years or under),
decrease of 0.4%.
40.5%
are primary school
(age 5 to 11 years),
decrease of 1.5%.
29.3%
are secondary school
(age 12 to 17 years),
increase of 1.7%.
14.3%
are young adults
(over 18 years),
increase of 0.3%.
These figures demonstrate that the age ranges have broadly remained static during this past year.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 19

Part 4: Review of our services
How many referrals have there been?
CHSW accepted 57 new referrals
from April 2022 to March 2023.
13 urgent referrals
9 at Charlton Farm,
3 at Little Harbour and
1 at Little Bridge House
10 of these were same day
acceptance and 3 accepted
following day
They all met the CHSW quality
indicator of responding within
48 hours.
44 routine referrals
20 at Charlton Farm,
14 at Little Harbour and
10 at Little Bridge House
The average time from referral
to acceptance is 12 days (11.95)
1 sat outside of process due to
anomalous referral route
6 referrals took more than 28
days from initial paperwork to
decision at Clinical Decisions
Group; 2 due to delay in
parental consent, 3 due to
delay in receiving medical
information from the external
professional and 1 due to
awaiting specialist discussion.
10 declined referrals
2 were withdrawn by the
referrer and 8 did not meet the
eligibility criteria.
What type of activity have we seen?
6,715
total bed nights in 2022/2023. This is an
increase of 1,170 more bed nights than the
previous year, which reflects the increased
level of activity across the 3 hospices as
COVID-19 restrictions have lifted.
4,094
family member night
stays in the hospices
in 2022/2023,
an increase of
1,250 from the
previous year*.
2,102
children or young
people bed nights
in 2022/2023,
an increase of
399 from the
previous year*.
396
day visits in 2022/2023,
a decrease of 530
from the previous year
but is explained by the
corresponding increase
of bed nights.
123
Starborn**
nights in
2022/2023,
an increase of
51 from the
previous year*.
2,477
parent or carer
nights stayed in
2022/2023, an
increase of 514 from
the previous year*.
1,617
sibling night stays
in 2022/2023, an
increase of 514
nights from the
previous year*.
1,235
hospice resilience
bed nights in
2022/2023, an
increase of 927 from
the previous year*.
867
emergency bed
nights in 2022/2023,
an increase of
528 from the
previous year*.
*In addition to this, our Care and Medical Teams provide support and advice to other professionals caring for children and young people at
their end of life who are not at the hospice.
**Starborn is the name given to the temperature controlled room in CHSW hospices that the children or young people stay in after death.
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Annual Quality Account - 1 April 2022 to 31 March 2023

Part 4: Review of our services
This table shows the additional activity that has been undertaken and reflects all the different ways CHSW has
supported children, young people and families during the past year.
Quarter 1
April to
June 2022
Quarter 2
July to
September 2022
Quarter 3
October to
December 2022
Quarter 4
January to
March 2023
Total
Number of children seen in-hospice 554 757 753 798 2,862
Number of siblings seen in-hospice 447 517 614 635 2,213
Number of parents, carers or family
members in-hospice
Number of children seen (for any
reason) in community
Number of targeted siblings seen in
the community
Number of family based contacts
activity in the community
Number of Zoom or visual media
contacts
Number of telephone or email
contacts with families
Number of telephone or email
contacts with professionals about a
child, young person or family
546 996 1,314 1,117 3,973
103 96 90 58 347
34 29 25 13 101
283 86 134 12 515
699 577 477 550 2,303
12,082 12,120 13,368 12,216 49,786
4,044 5,548 5,954 4,207 19,753
In addition to the number of in-hospice care and support
Community or home visits 241
Community shifts 39
In-reach hospital 82
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 21

Part 4: Review of our services
End of life care
Throughout COVID-19 we have
continued to provide care for
children and young people at the
end of life. Through our new ways
of working, we have been able to
support children and young people
to stay home for longer and,
positively, we were able to assess
children and young people at
home and start treatment quickly
without delay in keeping them
comfortable, whereas previously
there would have been a delay
while they were transferred to
a hospice. We are continuing to
work on end of life care at home
so we can offer families a choice
on the place of death and end
of life care.
Bereavement data, 1 April 2022 to 31 March 2023
Total
Number of deaths in
the hospice
Number of deaths out
of the hospice
Number of
starborn days
Bereavement
visits/support
Number of bereaved
families in contact with
4 12 5 21
2 15 9 26
8 65 50 123
68 58 152 278
123 213 73 409
There has been an increase in
in-hospice death; in 2021 to 2022
17 children or young people
received end of life care at one
of our hospices, this year (2022
to 2023) we provided in-hospice
end of life care for 22 children
or young people.
Out of hospice deaths has
remained the same for the
previous 2 years.
The Little Bridge House Care
Team have provided support for
6 children or young people on our
caseload receiving end of life care
in the period 1 April 2022 to
31 March 2023.
4 children or young people
received end of life care at Little
Bridge House, 2 received end of
life care in hospital. Starborn was
used at Little Bridge House for
all children who died in-hospice
to allow holistic bereavement
support. All the families have been
offered bereavement support by
the Little Bridge House Care Team.
Memory making such as hand
or foot casting, ‘Heart in their
Hands’ keepsakes and facilitating
activities for families to spend
quality time with their loved ones
have been a focus of the care
given at the end of life.
The Little Bridge House Care
Team have worked to increase the
provision of specialist palliative
care for our caseload, which has
involved enhanced collaborative
working with Hospital and
Community Teams. We strive to
build relationships with families
and professionals to give a choice
of location for end of life care,
becoming involved earlier in the
child’s journey to assist in advance
care planning and optimising
symptom control during the last
phases of the child or young
person’s life.
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Annual Quality Account - 1 April 2022 to 31 March 2023

Part 4: Review of our services
This year the Charlton Farm Care
Team have provided support for
27 children or young people on
our caseload who died.
12 children or young people
received end of life care in-hospice
at Charlton Farm. These children
or young people had been on the
caseload from 3 days to 11 years,
with the majority known less than
2 years. The length of the end of
life stay ranged from 1 to 14 days
with an average of 7 days. The
Hospice Team managed a range of
symptoms, sometimes complex,
in partnership with the referring
Medical Teams, and provided
close symptom management
planning. All made use of the
Starborn bereavement facilities,
for at least a few hours and up to
5 days. Some of the children or
young people cared for at the end
of life had more unusual medical
presentations, requiring the
Medical and Care Team to skill up
and carefully anticipate the range
of symptoms which may present
in the final illness, in order to
ensure the child or young person
was comfortable and the family
felt reassured and in good hands.
A small number were transferred
from Paediatric Intensive Care
Unit for extubation when parents
were keen for their end of life to
be outside a hospital environment,
and we were pleased to be able to
help fulfil these wishes.
Of the 15 children or young
people who died elsewhere,
12 were in hospital, 2 died at
home and 1 died at an unknown
place. For some, the Charlton Farm
Care Team were closely involved
in the end of life care, with
outreach visits and close working
between the MultiDisciplinary
Teams (MDT). 5 of these families
chose to use Starborn after death.
All the families have been
offered bereavement support
by the Charlton Farm Care
Team as well as sibling support
where appropriate.
Some of the above children
were referred antenatally, which
is increasing due to the close
collaboration with the fetal
medicine team, with the aim of
enabling families to expand their
choices following the distressing
news of an antenatal diagnosis of
a life-limiting condition.
Symptom control episodes of
care are offered, and aim to
observe closely and introduce
new interventions to manage
troublesome symptoms, such
as pain, poor sleep, respiratory
symptoms, dystonia, and agitation.
These stays are highly valued by
families and other professionals as
a unique service. This year there
were 17 symptom control stays
provided for 9 different children or
young people. 7 of these episodes
of care were delivered remotely
to children or young people who
remained at home. 7 children
or young people were admitted
from home and 5 from a hospital,
potentially reducing use of a
hospital bed. Detailed symptom
management plans were authored
by hospice doctors, for some
of these children, young people
and others, with the support of
hospital pharmacists, and these
are becoming valued documents
by hospital and community
teams as a point of reference for
managing emerging symptoms
across settings.
Increasingly, the Charlton Farm
Care Team contribute to children
and young people’s ongoing care
between, as well as during,
in-hospice stays, and this includes
attending MDT meetings, home
visits and bespoke meetings
with families to plan care and
help with advance care planning.
This underlines our priority to be
responsive and family focused,
respected by other local teams in
the highly skilled and specialised
approach we can bring.
The Little Harbour Care Team
have provided support for
14 children or young people on
our caseload receiving end of life
care in the period 1 April 2022
to 31 March 2023. 5 children or
young people received end of life
care at Little Harbour, 8 received
end of life care in hospital and
1 received end of life care at
home. 2 children whose care had
been reorientated to palliative
comfort care required complex
symptom control stays at Little
Harbour, that enabled further
precious time to be spent at
home in-line with the families’
wishes prior to end of life. 6 of
the families, where the child
had died elsewhere (hospital or
home), chose to use Starborn at
Little Harbour. All the families
have been offered bereavement
support by the Little Harbour
Care Team. During the last year,
the Little Harbour Care Team
have strengthened collaborative
working with hospital and
community teams in and out of
the county to support choice of
location for end of life care and
symptom control; delivering care
that is coordinated, planned and
safe, that meets the child or young
person’s needs in a timely way.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 23

Part 4: Review of our services
Reports from Hospice Registered Managers
Each of the 3 hospices within
CHSW has contributed to this
Annual Quality Account. This
provides each hospice with an
opportunity not only to report
against the CHSW wide quality
indicators and initiatives, but also
to describe the many excellent
local achievements and quality
plans that are responsive to more
local needs.
Vicky Stuckey, Head of Care and Registered Manager at Little Bridge House
As we continue to progress out of COVID-19 conditions of the last few years,
it is so positive to have the opportunity to look back over the year and celebrate
where we are and what has been achieved. The team here at Little Bridge House
have been working hard to ensure that the families are supported in the best way.
Caring for children, young people and their families in the hospice
During the last year, we have
seen a rebuilding of the families’
understanding of how to access
our care and support as we
progress out of COVID-19; the
relaxing of some restrictions
has encouraged some to return
to the hospice. Something as
fundamental as being able to
enjoy a meal together around the
table has been welcomed by all.
The support gained from the Care
Team and other families during
this time is invaluable, so to see
it back is wonderful.
We have continued to provide
emergency resilience and
symptom management stays
this year and are additionally
able to discuss our suitability for
step-down care to children and
young people following a stay in
hospital. This has been a welcome
development as the impact on
children, young people and their
families of long stays in hospital
can be marked, so offering support
before they go home is reassuring.
The variety of stays is tailored to
meet the individual’s needs and
continues to be appreciated and
enjoyed by the families. The team
have maintained contact with the
families and can be responsive by
discussing the most appropriate
way we can support them. It has
been lovely to see how, for some,
a day visit to use the facilities
has acted almost as a gentle
introduction to the hospice and
the team, leading them onto their
first overnight stays. We know
that using a hospice can bring
mixed feelings, so being able to
test the waters a little has helped
some with this journey. The team
are on hand to support all family
members during these visits
which has helped to show what is
available to them.
During this period we have
supported families in the hospice
at the end of life, on occasion,
for several weeks. The team
demonstrated such care in each
of these cases and responded
excellently to the needs each
family presented. At times,
these episodes of care were
being undertaken within tight
COVID-19 restrictions; the team
did an incredible job of safely
supporting the families and
each other in some potentially
isolating situations.
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Annual Quality Account - 1 April 2022 to 31 March 2023

Part 4: Review of our services
Caring for children, young people and their families in their home
We would like to offer more
care in the home for children
and young people but staffing
has had an impact on our ability
to regularly offer this. However,
we have made the most of every
opportunity to visit families at
home. The team have undertaken
care shifts that have supported
the parents to take some time for
themselves and also the team to
build and maintain relationships.
Completing care plans and
medicine charts is a timeconsuming
activity for families
when they arrive for a stay and
is reflected in the feedback we
receive, home visits have meant
we can undertake these tasks at a
suitable time for parents and in a
place where they can demonstrate
the finest details of their child’s
needs. Additionally, it gives the
team an insight into the family’s
life that aids in understanding
individual needs and supporting
us to be responsive.
The team are taking enormous
positives from visiting people
in their homes and it has added
another layer to our offer.
Being there when families need us most
Each family’s need is different and
I am very proud of how the team
respond and adapt to this. The
need for our care is not always
recognised by the whole family in
the same way or at the same time.
This year, for example, we worked
with a young person who was
resistant to coming to the hospice,
including for end of life care.
It was evident her feelings were
complex. Her mum was supporting
her wishes and was providing
round-the-clock care for her while
also looking after her teenage
sister. The team from Little Bridge
House visited the family home on
several occasions and began to
build a relationship. Mum was able
to have some time to talk with
the Care Team and expressed her
fears about what was to come and
her ability to manage things, she
wanted to support her daughter’s
wishes but she wanted time at the
hospice. The team started having
discussions with the young person
about what would need to be in
place for her to consider coming
to the hospice, even for the day
as a start. This approach seemed
to empower her to be involved
in a solution. The family visited
the hospice with the agreement
of all and went on to stay for
her end of life care. During this
time she discussed wanting to
go home and arrangements were
made to support this, but when
the day approached she changed
her mind and said she felt safer
at Little Bridge House and knew
it was the better option for all of
them. Recognising each of the
individual’s needs, place on their
journey and ways of expressing
this enabled the team to support
the family as a whole when they
needed us most.
Going the extra mile
Here at Little Bridge House,
we have been experiencing
some staffing challenges both
in recruitment and sickness
absence. The response that has
been demonstrated by the team
has been incredible; when the
families have needed support at
short notice, there has been huge
flexibility from the team to ensure
needs are met. Rota changes
have been managed to ensure
we can provide our families with
safe, sustainable care, but that
we think of the team’s needs too.
Team members have gone out
to see the children at home or in
the hospital and in doing so have
maintained those supportive links
when there is an increased need.
The team at Little Bridge House
provided training to a family for
new clinical care to support the
child’s discharge home, they also
provided on-call troubleshooting
advice to not only Mum but also
the carer in the residential setting
for this young person as this was
a new skill for them. Additionally,
when the need arises the team will
plan regular supportive calls to
families and attend MDT meetings
to ensure shared care and
awareness are maintained.
Also, we have provided emergency
on-call cover to families in times of
particular need, which in one case
went alongside the Community
Teams cover to support a family to
remain at home for longer during
their child’s deterioration leading
to her end of life care stay.
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Part 4: Review of our services
Helping to make a difference
Working hard to understand the
needs of all of our families, how
they may have changed in the
last few years and how we as a
team need to adapt to meet those
needs. The bereavement support
has been working hard to progress
from virtual to face-to-face
contact again as restrictions have
allowed, while making sure we
understand what exactly it is that
families need from us. The last
few years have been isolating for
many and we weren’t able to be
there for our bereaved families
as we would have wished, but we
did maintain contact. This last
year has been about shaping that
support moving forward as we
know what it means to people.
Opening the hospice to them
again for remembering events and
bereavement stays has been a
wonderful progression.
I take great pride in the family
centred basis of our work, and the
ongoing work of the Sibling Team
and the Music Therapist is integral
to this. Both in Little Bridge House
and in family’s homes, these
support teams have reached out
and reassured families that all of
them are seen and heard. Their
journey is important to us too.
Making memories
Christmas is a joyful time of year
for most but we know it can
be challenging for our families.
Therefore as a team, we decided
to understand what would support
families at this time of year.
Going to see Father Christmas
or enjoying a Christmas movie is
an activity enjoyed by children
and young people everywhere,
but may be difficult for children
with complex needs whether it
be because of access problems,
having to undertake care when
there isn’t a suitable place or
managing the level of sensory
stimulation involved. We decided
to make the whole of December
Christmas month and held a
variety of activities for our families
to enjoy. Father Christmas visited
several times during the month
despite his very busy schedule and
was prepared for the individual
needs of the children coming to
see him. There were Christmas
movies, craft activities, food and
drink and lots of music. This was
well attended and the feedback
was good, both from families and
our Care Team.
We also knew we had 2 families
for who Christmas presented some
specific challenges; the fragility
of their children meant this was
likely to be their last Christmas as
a family. For one mum she wasn’t
able to have her son at home so
wouldn’t be able to spend the
whole day with him. We felt it
important to offer both families
stays. They both readily accepted
and were supported by the team
to have the Christmas they wished
for. The team ensured that the bed
of the little girl was wheeled into
the room with her family so they
could all be together for lunch and
present opening.
In these ways, the team supported
a wide range of families to make
Christmas memories to cherish.
What am I most proud of
How through the many changes
and demands of the last few
years, the core ethos has been
maintained and our families have
been kept at the front of our
efforts. The team has adapted
wonderfully and has been so
flexible and understanding of
what is asked of them. Despite
some pressures with staffing, the
families have continued to receive
responsive care that accounts
for all their needs. This year has
felt like an opportunity to build
on past successes, learn from
challenges and shape our future.
There is an energy within the
team and I am excited about
what is to come.
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Part 4: Review of our services
Karen Greaves, Head of Care and Registered Manager at Charlton Farm
The team at Charlton Farm are very proud of our achievements during the last
year and want to share a handful of them. We continue to open the hospice more
and have recently stopped wearing face covering, unless requested to do so by
families. We are also delighted to be able to again share meals with the children,
young people and families, which is a much-loved time for all of us.
Caring for children, young people and their families in the hospice
During the last year, we have
seen a significant number of our
children and young people either
have frequent stays or spend
prolonged periods in hospital
for a variety of reasons. We are
proud to say we have been able
to support these children, young
people and their families with
in-reach visits to the hospital and
care shifts to enable families to
have some much needed time
away from the hospital and the
responsibilities of caring for their
child 24/7. We have also been
able to bring some children and
young people to the hospice for a
short stay, even though they are
not yet ready to leave the hospital
permanently. For example, 1
family spent Christmas at Charlton
Farm after having had their son in
hospital for almost a year.
We are also supporting families
following hospital admissions with
a step-down stay if they feel this
would be beneficial, to recover
from the hospital admission and
bridge the gap between hospital
and home.
1 young person has been receiving
care from Charlton Farm since
May 2008 and we celebrated
his last stay at Charlton Farm in
April 2022; he has now reached
adulthood and has transitioned
into adult services. The stay was
packed full of memory making,
ensuring his send-off reflected the
fun and favourite aspects he had
experienced during his stays at
Charlton Farm. He liked nothing
more than making a mess and
achieved it this time with paint
filled balloons and syringes; this
glorious colourful mess resulted
in smiles all around.
He also enjoyed male company
and regularly spent time with
the Maintenance Team during
his stays, discussing plans for the
day over a brew and cake. As his
final stay fell over the weekend
when our Maintenance Team
don’t usually work, our Head
of Maintenance popped in and
shared a catch-up over just one
more brew and cake!
Finally, he visited a local pub to
share a celebratory farewell drink,
the pub had been prewarned
of the visit and came up trumps
presenting him with some
merchandise to complete a truly
memorable farewell to Charlton
Farm for an extraordinary young
person with a contagious smile.
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Part 4: Review of our services
Caring for children, young people and their families in their home
We have not been able to offer
this as much as we would have
liked to this year due to in-hospice
needs. However, we continue to
try to offer video calls for care
plan updates and medication
checks to reduce the time a family
has to spend checking in their
child on arrival. This has received
valuable feedback from families,
as we understand the frustrations
after a long car journey and the
impact this has on their stay. We
aim to increase this offer in the
coming year to reduce the impact
on families on arrival and to
mitigate any potential issues
by hopefully picking these up
before their stay.
In addition, we continue to
progress with end of life care
at home, providing choices for
children, young people and their
families around end of life care
and where they would like this
to be. We are delighted we will
be launching a pilot of this in
summer 2023.
Being there when families need us most
This has been a challenging
year for Charlton Farm as sadly
a significant number of our
long-term children and young
people have died, as well as
supporting an increase in urgent
referrals. We have seen an
increase in home visits from both
the Care Team and the Medical
Team to assess and support
children and young people nearing
the end of life at home, as well as
those struggling with symptom
management. This has enabled
families to stay at home for as long
as possible and helps to prevent
unnecessary hospital admissions.
Going the extra mile
Jacob’s elves, Star and Rainbow,
took him on a magical adventure
to Bristol Rovers FC. The elves
went above and beyond and
organised for him to meet Santa,
his reindeer and Jacob’s favourite
football player, Aaron Collins.
Big thank you to Bristol Rovers FC
for giving Jacob a special day to
remember.
Helping to make a difference
This year we tried to do something
different around Christmas
and New Year to enable more
families to experience Christmas
at Charlton Farm. Throughout
December we arranged several
activity days such as Lego,
flamingo chicks, arts and crafts,
to name but a few. Our amazing
Kitchen Team put on 3 Christmas
lunches in addition to Christmas
Day so we could invite many more
families in to share this with others.
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Part 4: Review of our services
Making memories
This year saw the much awaited
return of a very special guest.
Father Christmas arrived in a
helicopter kindly flown by RNAS
Yeovilton and accompanied by
a bereaved Dad. He was able to
land and come into the hospice
to visit our children and young
people and share gifts. The smiles
on their faces says it all, and these
memories will be cherished for
many years to come, and not just
by the children!!
What I am most proud of
It is hard to narrow down specific
things that I am proud of. My
team continue to amaze me
with their dedication and high
standards of care, often changing
their rota at short notice. They
strive to provide the best possible
experience for the children,
young people and their families,
frequently thinking outside the
box to be creative with activities
and special celebrations for the
children and young people. The
high levels of end of life care and
bereavement care have impacted
the team, but we all remain proud
and privileged to play even a
small part in providing support to
families at such a difficult time.
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Part 4: Review of our services
Sam Hurse, Head of Care and Registered Manager at Little Harbour
I’d like to use this opportunity to share with you all the wonderful work we have
been doing at Little Harbour during the past year. Showcasing how throughout
COVID-19 we have adapted our ways of working to help children, young people
and families who need us the most, wherever they may be, in-hospice or at home.
Caring for children, young people and their families in the hospice
This year we have continued
using our hospice, home and
virtual Care Model. This includes
having children in the hospice
for resilience stays, symptom
management and end of life care.
We have also tried to utilise our
hospice to offer family day visits
to experience Music Therapy,
hydrotherapy and use of the
sensory room; incorporating these
with lunch or dinner so the whole
family get some TLC while visiting
the hospice.
We offer stays to families who
need it most by encouraging our
Care Team to talk regularly to
families and see what support they
have and what they may need.
We are then able to offer families
support, working with them
whether they need to come in
for some rest and in-hospice
support or community shifts
to enable families to attend
appointments or spend some
quality time with siblings.
Despite the challenges we have
had with COVID-19 impacting
our staffing levels, we have still
managed to offer families more
than 700 bed nights this year.
Plus more than 150 day visits,
approximately 200 community
visits and almost 200 Zoom
sessions, which may include
sibling support, Music Therapy
and psychology support.
In December, due to COVID-19
restrictions, we were unable to
hold our annual Christmas party,
so we had to get creative in
how we could still give families
a Christmas experience. We
decided that twice a week
throughout December we would
make it Christmas Day. Some
families were able to come to
the hospice to experience a Little
Harbour Christmas Day, which
included a reindeer hunt, creating
a Christmas party bag with lots
of treats, making reindeer food,
making a Christmas decoration,
a Christmas lunch, games,
presents and Christmas carols
around the Christmas tree.
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Part 4: Review of our services
Caring for children, young people and their families in their home
We have continued to care for
children, young people and
families in a variety of ways, this
includes within their own home.
We have continued community
shifts with children and young
people to help support families
who may only need a few hours of
support to catch up on odd jobs
or spend time with siblings. We
have also helped other agencies
when care packages have been
struggling due to staffing.
We have visited children in
hospital to spend time with them
so that their parents can go off the
ward and go home to get some
belongings, or simply have a break
from being at their child’s bedside
during challenging times.
Being there when families need us most
As a charity, we always try to
ensure we remain responsive
when families need us the most.
Our goal is to create memories
knowing the children and young
people we care for have short and
precious lives, but it is important
we can respond to families when
they may need emergency or end
of life care. We have supported
14 children, young people
and families at the end of life
throughout the past year. This
includes end of life care in the
hospice and the use of Starborn
to allow families some time with
their child after death. We have
also been able to offer individual
bereavement support to families,
which includes supporting siblings
and working with their schools to
ensure bereavement support is
consistent from all agencies.
Going the extra mile
I find it difficult to pinpoint
examples of going the extra mile
as we thrive in always giving
children, young people and
families outstanding support.
Despite the challenges we have
faced throughout the past year
with staffing, we have always
delivered a high standard of
care with no compromise. We
always aim to go above and
beyond to give our families an
individual approach to support.
For example, we had a family
come to Little Harbour for a day
visit and a parent expressed how
it is sometimes difficult to go out
for a day with the sibling due to
their child’s healthcare needs. We
then liaised with The Lost Gardens
of Heligan to allow Mum and
the sibling to go out for the day
while we looked after their child
in-hospice. This gave Mum some
precious time with the sibling.
The Christmas Day experience
days were a fantastic opportunity
to bring families together in a safe,
fun and friendly environment.
The families had a lovely time and
it gave them the opportunity to
spend time with other families,
which has been rare in the past
few years due to COVID-19
restrictions. Our Music Therapist
saw a need for bereavement
support for dads. He came up
with the idea of ‘Dads in the
Loop’; bereaved dads can attend
and enjoy a local circular walk to
allow them to share their stories
and meet other dads in the same
situation, so they could be a
support to each other.
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Part 4: Review of our services
Helping to make a difference
We have helped make a difference
to children, young people and
families by being adaptive and
responsive. Our new Care Model
allows much more flexibility
in what support we can offer
families. We are developing our
knowledge, skills and collaboration
to build on being able to provide
end of life care in the home.
This will help families have more
choices around where they may
prefer end of life care to be. We
have built strong links with other
professionals throughout Devon
and Cornwall. This has also helped
us provide resilience stays when
families need us the most.
We have continued to offer
in-hospice stays to provide
resilience to families. We have also
continued to offer in-hospice day
visits, community shifts and visits
in the home. Most importantly,
this flexibility has allowed us to
support families when their child
is in hospital. This may just be to
sit with a child to allow parents a
break. Or it could be to collaborate
with the hospitals to transfer care
of a child from hospital to hospice.
We have continued to run our
bereavement support groups;
‘Harbour Waves’ supports
bereaved mums and ‘Dads in the
Loop’ is a group for bereaved
dads. We have also had bushcraft
events for bereaved siblings.
All of these have been a huge
success in supporting families at
a time they need it most.
During the past year, we have
developed our family support
meetings. These are held weekly
with our Psychologist, Medical
Team, Sibling and Care Team.
This group discusses any referrals
that have come in for additional
support. We then talk about who
is best to provide this support,
such as our psychologist meeting
with the family, some bespoke
sibling support or support from
the Care Team within their contact
role. This has been beneficial to
families who have highlighted
they need some extra support
for their wellbeing.
Making memories
As always we keep our ethos of
making the most out of short and
precious lives. With this in mind,
we always try to make precious
memories for our children, young
people and families. Last summer
we gave some families the
opportunity to have a boat ride in
collaboration with ‘Wet Wheels’.
Wet Wheels is a charity that
provides sea boat trips for disabled
people and people with complex
needs in a safe, fully accessible
motor boat. In collaboration with
Wet Wheels, we were able to send
96 family members on this safe
boat trip. This is an opportunity
that sadly lots of people in
wheelchairs or who have mobility
issues don’t get to experience, so it
was fantastic and very rewarding
to see the families enjoying such a
special day.
What I am most proud of
It is hard to pinpoint what I am
most proud of as I am incredibly
proud of the team at Little
Harbour and the team ethic we
have. I feel we always go above
and beyond to help support our
families. This has been challenging
at times with COVID-19 and
the effect it has had on our
care provisions. However, I feel
the team have been incredibly
adaptable and flexible; always
working extremely hard to give
families much needed support.
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Part 4: Review of our services
How our 3 hospice teams support the whole family
Sibling support
Consistent with priorities set last
year around engaging families,
the Sibling Teams have provided
flexible, responsive, adaptable and
needs-led support.
Community resources have been
sourced to enable face-to-face
contact across the region, ensuring
that the individual and additional
needs of siblings are carefully
considered in their engagement
with CHSW. Joint working with
the psychologist has resulted
in securing additional mental
health support for siblings where
necessary. Moving towards,
face-to-face work brings exciting
opportunities, while teams
embrace the virtual connections
across our large, rural region, that
are now considered something of
a COVID-19 legacy, in the form
of Zoom Bingo! Enabling children
to have access to the hospice and
Sibling Teams this way and feel
‘held in mind’ is known to have
therapeutic value.
The teams skilfully draw on their
resources, be it a whole toolkit,
1 pencil, or simply imagination,
to provide children and young
people with the means by which
they can communicate, express,
reflect on and understand
their experiences. Underlying
the work is the foundation of
trusting relationships, developed
carefully and respectfully by
way of having fun, meeting with
other siblings and engaging in age
appropriate activities. As with
all relationships, these take time
and the teams work to ensure
contact levels are adequate to get
to know each other. An underlying
premise is always that the Sibling
Team member takes the lead
from the child or young person,
providing honesty in responding
to questions and quests for
knowledge. When arriving at each
of the hospices, it is usual to hear
the sound of siblings engaging in
one activity or another, and it is
prudent to watch out for flying
nerf bullets!
1 young person has
reflected this in their
message of gratitude
at the retirement of
a much-loved and
long-standing member
of the Sibling Team at
Little Bridge House:
Thank you for giving me a lifetime of memories that
I will never forget. You have always made my stay at
Little Bridge brighter, and always welcomed me with
open arms. I have always enjoyed hanging out with you,
and your company has always been fab! I can not state
enough how thankful and grateful I am of you. You have
been amazing every step of the way.
Further to focus group feedback
from siblings requesting
‘non-bereavement focused’
bereavement support, the
teams across CHSW have been
innovative in offering support
to bereaved siblings. It was
eloquently voiced that if they
felt at ease (around a fire pit
and drinking hot chocolate with
marshmallows was mentioned) to
share their thoughts, that would
happen naturally. In response, the
Little Harbour Team organised a
bushcraft event, designed around
the principles of empowerment,
trust and shared experience of
having been bereaved. During
lunch, it was noticed that the older
children took the opportunity
to talk to their peers and
share stories and experiences,
supporting the notion that the
‘non-bereavement focused’
approach would suffice!
Continued overleaf
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Part 4: Review of our services
Sibling support (continued)
While having fun is often the
name of the game with the
Sibling Teams, there is always
an underlying aim to provide
children and young people with
opportunities to express, process
and understand their loss:
Thank you for providing
a safe space for me
to talk about my brother.
It has been so valuable
to have people in my
life who have met
and known him so
well, which always
made sharing my
thoughts and feelings
that bit easier.
One-to-one work is ongoing with
siblings, including specific and
targeted interventions around
grief, as well as managing fears,
worries and anxieties about
their brother or sister. Emotion
first aid toolkits continue to be
used and valued by parents and
siblings. Supporting children
and young people who have
complex emotional experiences
as a result of their siblings’ health
needs requires a sensitive and
considered approach to support.
This balance is struck by our
Sibling Teams who offer needs
led support, in a timely fashion,
and liaising with those around
them, such as parents, schools and
other agencies, as appropriate.
For example, Charlton Farm’s
Sibling Team have supported a
child with a programme of anxiety
management and desensitisation.
Initial sessions commenced in
the safety of the family home,
gradually ending in a session with
the family in the hospice, enabling
the child to feel safe being there.
Parental feedback indicated
that this had been a successful
intervention, empowering their
child to return to enjoying time
at the hospice, and managing
difficult feelings regarding their
sibling, especially when they were
separated at times of particularly
poor health.
Little Bridge House provided
bereaved teenagers with the
opportunity to hang out together
for a weekend at the hospice,
with the hospice made available
exclusively to them! They started
with team building and generating
aims for the weekend, along with
a fish and chip supper! After much
enjoyment at a local adventure
park, the gang got together to
talk. Their discussions took them
all over the place, from family to
school, friends, and what it was
like being a bereaved sibling.
This generating opportunities for
discussing strategies for dealing
with difficult questions and talking
about their experiences with
others in their lives. The weekend
continued with friendship, talking
and enjoying a meal at a local
hotel, as well as a dip in the
hydrotherapy pool and more fun.
The feedback from parents reflects the positive changes in their young person’s life:
She had a lovely
weekend, it did her
the world of good
talking to other teens
that have lost a brother
or a sister. She said she
doesn’t feel so alone
in how she feels.
She enjoyed the teen
weekend, I think it was
really good for her.
It’s the first time she’s
been brave enough to
branch out on her own
to do something. She
was just like ‘well I’ve
known them all my life,
they’re like family’.
Oh my goodness, my son had the best time at the sibling
weekend, and he just loved that he got to stay over at the
hospice again. He got the memory box out for the first time
in a while on the Tuesday after, and looked through all the
bits he has put in there. He also put the paintings he did on
[sibling’s] shelf when he got home. I don’t think being the
only boy phased him in the slightest. He gets so much from
being around other siblings who have been through similar
to him. I feel it comforts him.
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Part 4: Review of our services
And young people reflected the value in such time together:
I enjoyed
everything.
Everything went well
during the weekend,
I made new friends.
It would be nice if
we could do something
like this again.
Lots of activities and
games, nice rooms,
I spoke openly and
made friends.
Everybody got along,
the days out were really
fun, I would like it if we
could meet up again.
I made good memories
and spoke about my
sibling.
I made friends, we were
able to speak openly
about our siblings who
had died, we always had
something to do, I would
like to attend another
teen weekend.
Other special events for siblings
during the past year include a
small group of bereaved siblings
engaging in a session with Julia
Samuel, Psychotherapist and
author, talking about Coping with
Grief. This was a good insight into
looking at the wider picture and
helped to enhance the support
we offer to bereaved children,
young people and their families.
Our Sibling Teams are actively
involved in contributing to the
learning of others, as evidenced
by the work of 2 staff members
from Charlton Farm, who
delivered teaching around
supporting siblings of children
and young people with life-limiting
conditions to student nurses at
UWE Bristol. This training was
really well received:
It was good to get a
different perspective.
Although not directly
linked to caring
for those receiving
palliative care, it was
useful to hear how
important caring for the
sibling is as well, in terms
of the right terminology
to use. I loved seeing
the video of Charlton
Farm and the resources
they use with the
children.
Undertaking their own continued
learning and development is
key to our Sibling Teams who
maintain mandatory training as
well as additional development
and training, such as mental
health first aid, bereavement
training (provided by children’s
bereavement charities), and
involvement with a national Sibling
Support Special Interest Group.
And this message from a parent
sums up how families feel about
our Sibling Teams:
Thank you so much for
giving us as parents
piece of mind and for
being such a great
influence and friend to
[our children]. You were
there during some of our
most challenging times
as a family, offered our
kids an outlet and let
them know they were as
important to the hospice
as [their brother] was.
Thank you for joining in
[our son’s] celebration
of life and being an
absolute rock to our
children and to us.
Moving forward:
Further embracing face-to-face
working and opportunities for
more group work
Evaluate training needs
in development of the
Care Model.
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 4: Review of our services
Music Therapy
Our 3 Music Therapists across
CHSW continue to offer a much
valued provision to our families,
augmenting physical, mental,
emotional and spiritual wellbeing.
Music Therapy is offered at many
levels, often in partnership with
others, including the children and
young people who visit CHSW,
their siblings, parents and the
staff who work in the hospices.
All are benefiting from the return
to face-to-face working, enabling
the co-creation of music in person.
Our therapists continue to be
innovative and responsive in the
provision of their care, considering
carefully the place and mode of
engagement, depending on the
needs of the individual or family.
By being led by the child, their
body rhythms and response to
sensory stimuli, their attunement
to the non-verbal cues of the child,
the Music Therapists establish
and provide a powerful means
of communication. The varied
therapeutic benefits of Music
Therapy are experienced by many
of the children, young people and
family members who use CHSW,
and include the modulation of
emotions, thoughts, behaviours
and communication. Our
therapists skilfully use sessions
to reduce anxiety, distract from
fearful thoughts and enable a
connection between 2 people
that goes far beyond verbal
communication.
Music Therapy enables parents
to witness aspects of their child’s
life that they would otherwise
not have access to. Witnessing
their child reaching out to touch,
express emotion and joining the
dance of the music might offer a
glimpse into a different dimension
of the child or young person’s
potential, never previously
experienced by those around the
child or young person. This can
bring peace and joy to the hearts
of parents and family members
in moments of darkness and loss.
Often, these sessions are video
recorded to enable families to
have lasting memories of these
precious moments. Even when
recording the session has not
been possible, parents appreciate
the difference the music makes
to their children, and the respect
afforded to them:
I’m glad you didn’t video
it. We so often fail to live
for now and be in the
moment nowadays. Just
to hear about what he
chose to do and how
he chose, in his time, to
make that music, it’s just
wonderful to hear. Thank
you so much for giving
him that opportunity and
for taking the time to
just listen to him and let
him take the lead.
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Part 4: Review of our services
The collaborative creation of
music and lyrics, is 1 part of the
work of the Music Therapists.
They have often been invited to
play and sing at funerals, reflecting
on, and representing their
previous engagement with the
child or young person.
The Music Therapy Team continue
to host students on placement
and provide teaching to local
universities. Indeed, 1 student has
remained on as Bank Staff with
the Sibling Team at Little Harbour,
such was his enjoyment while a
student, and his commitment to
working in a children’s hospice.
As integral members of the
care and family support teams,
our Music Therapists join with
activities such as Remembering
Days. For this event at Little
Bridge House in October, the
Music Therapist composed a song
inspired by the way she engages
with children and young people
around colour, in-line with the
theme of rainbows. She recorded
the song that she sang along with
the Care Team, for the families.
The first of 4 verses is below.
My Seven Colours of You
How shall I paint in every shade and hue,
My seven colours of you?
I’ll start with petals red, a giant rose bed,
And that’s my first colour of you.
So let the rainclouds gather now,
‘Welcome’- skies of grey;
Even in the darkest hour there dawns a brighter day:
When the raindrops start to fade, the sun comes shining through,
Then I see up in the sky my one colour of you.
Our Care Teams also benefit
enormously from the therapeutic
qualities of music. When the
Music Therapist is in a room
with a child, young person or
family, the Care Team can often
be seen loitering outside the
door to vicariously engage with
the session. Team meetings and
annual review week training often
includes an element of Music
Therapy as a holistic staff support
intervention and staff are always
willing to take part!
To the right is a collaboration
across the Care Team at Little
Bridge House, including Carers,
Nurses, Admin, Housekeeping,
Kitchen and Sibling Teams. They
combined handbell skills with
some Makaton signing to make
a Christmas video for families.
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 4: Review of our services
We helped make a real difference through bereavement support
At CHSW we understand that
grief and loss do not only occur
when a child or young person dies.
We accompany families along
their journey, providing support,
information, time out, memory
making opportunities, space for
anticipation and reflection and of
course, continued companioning
after a child or young person has
died. Families are informed that
they can telephone the hospice
at any time of day or night to
talk to someone.
In summary, bereavement support
takes many forms:
Individual sessions - telephone
calls, video calls and in person
A reflective session with the
Psychologist and Doctor
Sibling groups, parent groups
and couples’ groups
Out-reach in the community
Whole family and sibling
groups, groups according
to relationship type and
groups according to age
Groups for parents recently
bereaved and groups for
parents less recently bereaved
Groups for dads and male
caregivers and groups for
mums and female carers
Individual adult sibling support
Liaising with other services
Walking, talking, making
and crafting
Listening, guiding,
companioning, encouraging,
expressing, tolerating and
embracing grief
All that is messy, dark and
muddled, giving it a place, some
coherence and clarity
Permission to grieve,
permission to remember and
permission to contemplate
Cry, express and laugh
Permission to join with others
or have privacy to grieve alone
Opportunity to share, reflect
and be curious
Space to create, make music
and recite stories.
Teams across all 3 hospices
continue to generate creative
ways to support families in their
grief, being responsive
to expressions of need.
Since COVID-19 restrictions
have been eased, teams across
CHSW have been engaging in
increased face-to-face support
of families. Families particularly
value the opportunity to return
to the hospice where their child
has died, or through which they
have felt supported and therefore
have a sense of connection to
their child, offering a place where
they can safely be together in their
memories and grief:
The spirits of all our
children are here.
It’s the only place we
are a family of 5.
Coming to Little Bridge
House is like a gift
from their child.
Returning to a more normal
service has enabled the hospices
to provide face-to-face group
support and has been much
appreciated by families who value
attending the hospices in person:
It was so good to be
back on ‘home’ turf of
the hospice again.
Each hospice has developed
a programme of bereavement
support for parents, couples,
and siblings. Despite the large
geographical region covered by
CHSW, such is the enthusiasm
for these sessions that some
parents have gone to great
efforts to attend:
Spending time here
is worth more than all
the therapy I could get
in a year.
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Part 4: Review of our services
Bringing families together again
to remember their children has
been welcomed by everyone.
At Christmas, the Charlton Farm
Care Team invited families to
decorate a star in memory of their
children. They then came together
at a Christmas tree decorating
event in the hospice where the
stars were hung on the tree.
Siblings got stuck in with various
crafting activities in memory of
their brothers and sisters and took
these keepsakes home with them.
More than 20 families attended
and expressed their gratitude
at being able to return to such
activities in person and share
these special events with other
bereaved families:
We always feel loved
and nurtured here.
Remembering Days have made a
comeback during recent months
as families have been enabled to
mix again. Little Bridge House
provided 2 days for bereaved
families; October’s was for
recently bereaved families, and
November’s was for long-term
bereaved families. These days
provided an opportunity for family
members to engage in activities,
contemplation, conversation and
revisiting the hospice in memory
of their children:
Thank you for inviting
us to the Remembering
Day in November. It was
so special to be reunited
with the house, friends
and memories.
It was noted that, for 1 family
in particular, this provided the
opportunity for grandparents
to visit the place where their
granddaughter died, share in the
remembering and meet staff who
had met her. In so doing, this
enabled them to join the missing
pieces together and create a
coherent story around her very
short life.
Areas in Development:
Gaps in support continue
to focus on access to
targeted bereavement
counselling beyond the
support of the hospices
Regular debriefing and
supervision forms a regular
aspect of staff support for
Hospice Teams
Bereavement related
documentation has been
reviewed and updated, with
a clear pathway devised in
conjunction with NHS services
in the South West. This
work is ongoing and will be
implemented and evaluated in
the coming year
It is planned that the workforce
skills will be evaluated and
training needs identified
in relation to bereavement
support. In particular, a focus
will consider the needs of
non-birth families (including
blended family members, foster
carers and so on)
During the past year we have
reflected on the experiences
of non-birth carers and family
members who have had a
significant role in caring for
children and young people.
Going forward, we want to
develop our understanding
of the experiences for stepfamily
members, foster carers
and others in the role of legal
guardians. These relationships
can often be complex in the
wider family context, but have
real significance for the child
or young person throughout
their life, providing safety and
reassurance when life can feel
uncertain and scary
For the forthcoming year, the
focus will be on evaluating
and reviewing bereavement
support with a view to develop
to ensure that the experience
of families is consistent with
the offer made by CHSW
Leaflet development with
the bereavement teams.
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 4: Review of our services
Supporting dads - a special mention!
Dads in the Loop is a walking
group for bereaved dads and
male carers run by our Music
Therapist at Little Harbour. It
takes in footpaths with sea and
countryside vistas, immersed in
nature, in-line with the evidenced
mental and emotional health
benefits of outdoor blue and
green spaces. All group members
reported that the sessions were
relevant and helpful, enabled
them to share their thoughts and
feelings in a way that felt safe and
comfortable, and that they would
be keen to continue coming.
Some fabulous feedback from the group members further supports the efficacy of such approaches:
Thanks very much for organising our walk today, which was
really good. You definitely achieved the aim, which was to
get the Dad’s talking!
Well done for organising the walks, it really helps to be with
dads with shared experiences.
I really got a lot out of our last walk and must say it is the
best thing CHSW has done for me personally since we lost
our daughter.
It’s not easy being a
bereaved Dad, but
sometimes a bit of a
chat with other Dads in
a similar situation, might
just help a little. Thanks
go to Richard, the music
guy from Little Harbour,
for kindly making all of
the arrangements and
coming along with us.
In particular, being able to remember their child publicly was important to the participants:
Any person who has lost someone wants
their memory to carry on so any chance
to speak that person’s name or chat about
the person they were with others brings it
all back to life.
Peer support from other Dads who were in
the same situation and to be able to talk
about the child that I had lost using her
name, without getting too emotional.
And they acknowledged the protective nature of sharing their stories with each other:
For me not to feel isolated and gain an
understanding that other people are
going through similar losses.
Yes it was good to know I was not the
only one.
So many other friends and family are
scared to talk about the child you have
lost, for fear of upsetting you. Nobody
knows what to say. I was hopeful these
dads would be different and indeed, these
walks gave us all the opportunity to talk.
While valuing the opportunity to get to know each other’s stories and other aspects of their lives:
Everyone participated
in their own way and
chatted about their
experiences, lost one
and their current lives.
This is maybe not
something that would
have happened so
freely for some of the
dads outside of this
group walk.
The walks actually felt
quite natural and the
conversation chopped
and changed and
flowed really well. It
wasn’t all about losing
a child, but sharing
happy memories,
achievements and
situations that had a
funny ending.
The talking almost
became incidental
to the walk… and the
reward of cake. Richard
was a brilliant facilitator,
and knowing he was
there was part of the
safety net.
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Part 4: Review of our services
Having the freedom to talk about whatever arose:
The chance to discuss other people’s experiences of
treatment, care and death. This needs to be an organic
conversation rather than something to structure, aim
or set out to do. I believe the group has started this
and if the walks continue this will further form and be
beneficial to all.
Perhaps the informal nature
and unstructured approach
was the key to it feeling
natural, like a bunch of
blokes out for a walk,
having a chat?
The added benefit of refreshments
after the walk from the famous
Little Harbour kitchen was much
appreciated, further evidence of
the multiple ways which families
receive nurturing form CHSW:
Kerry’s cakes resonated
with time spent at Little
Harbour! Yummy.
Psychological support
A Clinical Psychologist has
continued to be an integral Care
Team member at Little Harbour.
Referrals are managed by way of
a weekly in-hospice, MDT family
support meeting. As with many
other areas of CHSW care, and
in-line with objectives set last
year around digital management,
these meetings are supported
by the digital system, Vantage.
The Clinical Admin Team are
involved in the agenda-setting and
recording of discussions, which are
then disseminated to necessary
personnel within the charity. Not
only has Vantage enabled a more
efficient in-hospice management
of, and response to, referrals for
additional family support, but it
has demonstrated its usefulness
in inter-agency meetings, enabling
CHSW staff to readily identify
family interventions and identified
areas of need.
During the past year, there has
been a total of 68 referrals to the
meeting. All of these referrals
and subsequent discussions are
undertaken with full consent
of the relevant family member
or parent. The majority of
these referrals have resulted in
involvement with the Psychologist,
either by way of individual
sessions with family members,
consultation and supervision with
the Sibling Team or Care Team in
support of the family, or identified
need for social work support.
These discussions also provide
an opportunity for identifying
training needs within the Care
Team, as well as highlighting
potential safeguarding needs, as
a result of enhanced information
sharing between team members.
The appointment of a Psychologist
at Little Harbour has enhanced the
care provision by working in
a number of ways, including:
Direct therapeutic work with
family members:
Assessment of need
One-to-one
Couple work
Systemic family work
Working with siblings
Consultation to the team on
enhanced understanding of
child, young person and family
experiences and mental
health needs
Consultation to external teams
and other professionals
Liaising with, and referral
to, mental health and other
external services for family
members
Supervision of discrete pieces
of work undertaken by the
Care Team and Sibling Team
Training around psychological
needs of the families at
CHSW and enhancing the
understanding and experience
of the team working in a
children’s hospice
Debriefing
One-to-one staff support,
as reported elsewhere.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 4: Review of our services
Psychological support (continued)
Referrals to the Psychologist often
focus around times of change,
adaptation, decision-making,
transition, diagnosis, end of life,
loss and bereavement. Feedback
from families indicates that the
support from the Psychologist
is valued and helpful, enabling
a deeper understanding of their
emotional experiences and
providing space for the processing
of difficult experiences, leading to
a safer sense of relationship with
grief, at whatever stage in their
journey they find themselves.
Being able to let all the thoughts out, from the small ones
to the big ones without the fear of having to deal with
someone else’s emotional reaction to my stuff.
[The Psychologist]
is amazing. I always
look forward to
talking to her.
[The Psychologist]
understands why I get
the thoughts I get.
The Psychologist is kind,
well informed and very
easy to talk to.
[The Psychologist]
listened without
judgement and with
understanding.
Different perspectives. Looking at the social constructs
and value systems in the wider context. Normalising
paradoxically by recognising how not normal our
experience is. Connecting me to others.
Priorities for the coming year
include:
Recruitment of Clinical
Psychologists across CHSW to
meet the needs of each hospice
Evaluation of the wider
need for provision of
psychologically-informed
working across CHSW
Gaining a deeper
understanding of the training
needs to support psychological
understanding of the
experiences of children,
young people and families
who use CHSW.
Making a difference through professional networking and working collaboratively
Networking ensures we share
experience and knowledge with
other providers, learn from other
providers and importantly, ensures
that we keep pace with new
initiatives and best practice.
All of our Care Teams meet on a
regular basis; weekly or monthly
with local teams from other
providers in their respective
regions. Examples of this include
the Bristol, North Somerset and
South Gloucestershire End of Life
Care (BNSSG EoLC) project and
the regional and national work our
Psychologist is involved with.
Starling Service
BNSSG EoLC project
This integrated Care Model,
bringing existing resources
together across the system within
BNSSG to provide babies, children,
young people and their families
access to 24/7 end of life care in
the community, has developed
during the last year.
The findings of the virtual pilot
held from March 2022 to April
2022 concluded that, as well
as the extra clinical capacity
needed, having nurses recruited
into the services as part of their
core role would enable these
providers to release core staff
to deliver the Starling Service.
The clinical pathway also needed
further development, with more
detail in how the service would
operationally run and further
development on the bereavement
and psychology pathway. We also
needed to ensure there were clear
processes for escalation, incidents
and managing medication in the
community, and ensure training
and education was delivered
across the system to ensure
nurses were up-skilled clinically
and able to work collaboratively
using shared systems.
The full service pilot is aiming
to be commenced mid-June
2023 to March 2024. This will
have a robust evaluation plan
to understand the impact on
outcomes for babies, children,
young people and their families.
These outcomes are hoping
to provide a greater equality
of access to end of life care at
home for babies, children and
young people in BNSSG, allowing
more choice and provide more
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Part 4: Review of our services
personalised and responsive
support which meets the National
Institute for Health and Care
Excellence (NICE) guidance that
will also offer the opportunity
to develop clinical skills and
education of professionals across
the system.
Prior to the launch of the Starling
Service, development continues
on policies and procedures to
ensure the processes and the
collaborations are as effective
as possible. It is opening
exciting career opportunities to
professionals across the system,
including the development of
care records that can be accessed
collaboratively.
We share updates about the
children, young people and
families that the different Health
and Social Care Teams support,
and from this we are able to
discover if there are any families
in need of an immediate increase
in support from us and vice versa.
The Care Teams have worked
closely with acute Hospital
Teams recently when transferring
children and young people to
us for end of life care. They
regularly attend MDT meetings
and child death reviews, working
collaboratively with a wider team
to share information and develop
and enhance the quality of the
support given to the families,
including bereavement care.
The Care Teams also liaise with
schools and other agencies and
professionals, such as Speech
and Language Therapists and
Hearing and Visual Support
Teams regarding communication
and behavioural support plans
to ensure that the plans are used
consistently across the different
settings looking after the child or
young person.
Psychologist’s regional and
national collaboration
In November 2022 our
Psychologist was invited to
talk at a national meeting
of Psychologists working in
Paediatric Palliative Care (PPC)
in London. Our psychologist
is the only one of a handful of
Psychologists employed in a
children’s hospice nationally.
Our Psychologist has set up a
regional group of Psychologists
looking at measuring outcomes
in PPC psychological (and wider
psychosocial) interventions.
Our Psychologist meets regularly
with the Paediatric Psychologists
at Royal Cornwall Hospital
(Treliske) for peer supervision
and shared learning.
Our Psychologist attended
‘Research in Hospices’ meetings
as well as the Collaborative
Paediatric Palliative Care Research
(CoPPAR) research meetings.
Communities of practice
Many Care Teams are participants
of various specialist groups and
communities of practice, such as:
Children’s Hospice Business
Development Group - Senior
Management Team (SMT)
all engage with a group,
CEO, Fundraising, HR,
Finance and Care
NHS England and NHS
Improvement - South West
weekly call with Medical
Directors and Directors of
Care (acute trusts, community
trusts, mental health trusts
and hospices)
Hospice UK, Project ECHO,
set up during COVID-19 to
share best practice
BNSSG Children’s Palliative
and End of Life Care
Strategy Group
South West Palliative Care
Network (Charlton Farm
Medical Director is Co-Chair)
Regional South West
Quality Forum
Sharing Good Governance
(national group for hospices)
Leaders of Care (a specialist
interest group for Clinical
Leads, Heads of Care and
Directors working in PPC
Infection, Prevention and
Control (IPC) Group
(hospices, national)
Together for Short Lives
Education Forum
South West Neonatal Group.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 43

Part 5: Compliance and quality metrics
Participation in clinical audits
Clinical coding error rate
CHSW was not subject to the Payment
by Results clinical coding scheme and
therefore was excluded from audit
processes during the 2022 to 2023
financial year by the Audit Commission.
National audit
During the 2022 to 2023 financial year,
CHSW did not meet the criteria to
participate in the National Clinical Audit
and National Confidential Enquiries.
Data quality
CHSW is not eligible to participate in the
Secondary Users Service for inclusion in
the hospital episode statistics, included
in the latest published data scheme.
Learning from deaths
Whenever a child or young person dies,
it is important to reflect and learn if
anything could be done differently in
the future. CHSW staff participate, and
sometimes chair the local Child Death
Review meetings which in turn report
in to the Child Death Overview Panel
(CDOP) in their local region. For every
child or young person death that CHSW
has been involved in, whether in-hospice
or not, the CHSW staff contribute to the
Child Death E-Reporting system.
What is the Child Death
Overview Panel?
The CDOP is a statutory body who
review the deaths of all children and
young people who die in the UK.
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Part 5: Compliance and quality metrics
Regulation and external quality assurance
Care Quality Commission
CHSW is required to register
all 3 hospices with the Care
Quality Commission (CQC) and
our current registration status is
unconditional. The CQC has not
taken enforcement action against
the hospice during 2022 to 2023.
Care Quality Commission inspection outcome (last formal inspections in 2016/17)
Overall Safe Effective Caring Responsive Well-led
Good Good Good Outstanding Good Good
Good Good Good Good Good Good
Good Good Good Good Good Good
As part of the CQC’s monitoring
approach during 2022 to 2023,
a CQC inspector conducted a
review of the areas of safety,
access and leadership at Little
Harbour on 6 September 2022
and concluded that no further
regulatory activity was indicated.
As part of the CQC’s monitoring
approach during 2022 to 2023, a
CQC inspector conducted a review
of the areas of safety, access
and leadership at Little Bridge
House on 30 November 2022
and concluded that no further
regulatory activity was indicated.
Charlton Farm had received the
same outcome of their monitoring
approach inspection in March
2022 (previous quality year).
CHSW will continue to be
monitored by the CQC.
Trustee visits
The Trustees did not undertake
visits to the hospices this past
year due prioritising patient safety
do to COVID-19 restrictions.
However, the Trustees were kept
informed of care practices through
the Care Assurance Group and
also joined in on regular CHSW
site meetings over Zoom and have
planned some visits for the next
quality year.
Internal audit and compliance
CHSW is required to report
to NHS Commissioners on the
quality of the service via the NHS
Standard Contract. This varies
between each Integrated Care
Board (ICB), so a range of quality
metrics are in place to satisfy the
requirements of the ICBs and help
CHSW develop and improve.
We have systems in place
to monitor safety, clinical
effectiveness and experience.
These are monitored through:
Trustee and Board Level
Assurance Committee
Director and Senior Care
Leadership Team
Governance Committee
Incident Review Group
Medicines Safety Group (MSG)
Infection, Prevention and
Control (IPC) Group
Risk Management Groups (care
and organisation level).
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 45

Part 5: Compliance and quality metrics
Incidents (not including good practice events)
The Senior Care Team meet weekly to review all
incidents and identify themes and trends to ensure we
learn and implement actions. As part of our Clinical
Information System (CIS) Project, we implemented the
Vantage Incident Module on 1 April 2021. The Care
Digital Team have worked with Vantage to customise
the template to ensure we can report, review and learn
from incidents. As part of the national programme
of Patient Safety Incident Response Framework
(PSIRF), CHSW is undertaking the preparatory work to
implement PSIRF later in the year. This work includes
attendance at ICB workshops, NHS England webinars,
completing Health Safety Investigation Branch
investigative interviewing training, revising our digital
template and networking locally to share experience
and practice. The boxes below explain some of the
terminology used in healthcare incident reporting:
Serious
Incidents
(SIs)
RIDDOR
Never
Events
Duty of
Candour
In healthcare, these are
adverse events where
the consequences
to patients, families
and carers, staff or
organisations are
so significant or the
potential for learning
is so great, that a
heightened level of
response is justified.
NHS England provides
a framework for how
SIs are managed.
Reporting of Injuries,
Diseases and Dangerous
Occurrences Regulations
(RIDDOR) is the law
that requires employers
to report and keep
records of: work-related
accidents that cause
deaths, work- related
accidents that cause
certain injuries.
These are defined as
SIs that are wholly
preventable, because
guidance or safety
recommendations that
provide strong systemic
protective barriers are
available at a national
level and should have
been implemented by all
healthcare providers.
Informing people
(patient and family)
about the incident,
providing reasonable
support, providing
truthful information
and an apology when
things go wrong.
Page 46 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Total number of incidents (of any category) recorded
104
108
87
CHSW total 299
Total number of incidents by event type
Occurrence Near miss incident Actual incident Accidents
28 3 52 21
20 7 61 20
15 8 34 30
CHSW total 63 18 147 71
Occurence: An unexpected or unplanned event in care that is worthy of reporting in order to identify learning
but does not meet the NHS definition of a patient safety incident.
Near miss incident: Error originated by CHSW but action taken by CHSW staff to avoid harm such as a
transcribing error made on admission to the hospice, identified and corrected prior to administration.
Actual incident: Meets the NHS definition of patient safety incident.
Accident: Meets the Health and Safety Executive (HSE) definition of an accident.
Externally reportable incidents
UKHSA* RIDDOR ICB CQC/Police MHRA**
0 1 1 1 0
0 0 0 1 1
1 2 0 0 0
CHSW total 1 3 1 2 1
*UK Health Security Agency **Medicines and Healthcare products Regulatory Agency
Number of incidents by incident type
Clinical H&S* IG** Security IT Finance Safeguarding
66 30 4 0 2 1 1
50 41 6 3 6 0 2
40 42 3 0 1 0 1
CHSW total 156 113 13 3 9 1 4
*Health and Safety **Information Governance
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 47

Part 5: Compliance and quality metrics
Incidents (not including good practice events) (continued)
Harm level (for all incidents)
No harm
Low/minor
harm
Moderate
harm
Severe harm
Death
76 26 2 0 0
58 50 0 0 0
43 44 0 0 0
CHSW total 177 120 2 0 0
Moderate incidents: There were 2 incidents graded as moderate harm. A health and safety accident by a family
member was graded moderate as hospital treatment was required. There was a further safeguarding incident
(related to family member) graded moderate due to concerns identified by staff which required escalation.
Number of clinical incidents by category
Nutrition 6
Documentation and communication 14
Ventilation/respiratory 2
IPC 4
Medicine 93
Medical equipment 8
Behaviour that challenges 6
Deteriorating condition 1
Tissue viability 5
Fall 1
Patient safety 2
Care plan not followed 4
Medicine incidents detail
Medicine incidents 2022/2023
Occurrence 24
Actual 60
Near miss 9
Total medicine incidents 93
Medicine incidents harm level
Medicine incidents 2022/2023
No harm 79
Low 14
Moderate 0
Severe/death 0
Total medicine incidents 93
Compliance breach 2
Staffing 4
Other 4
Total client incidents 156
Page 48 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Good practice events
We also capture and record good practice incidents
as we consider it as important to learn and share from
what went well as it is from what didn’t go so well.
Recording these incidents as good practice highlights
that CHSW policies and practices are effective as
these ‘external’ errors are identified and rectified
through our processes. We define good practice as
an error originated externally to CHSW (such as by
another provider) but was identified and appropriate
actions taken by CHSW staff to prevent harm, such as,
a dispensing labelling error by a community pharmacy
identified and rectified by CHSW staff on admission
to the hospice. As an example, there were 22 good
practice medicines incidents this last year. 2 incidents
were good practice as although moderate harm was
evident (due to non CHSW actions) staff were vigilant
to the respective clinical situations and took all
appropriate and timely actions to address and treat.
Both with good outcomes. One of these incidents was
also raised as a moderate safeguarding incident so that
all relevant agencies could be engaged.
Incident analysis key findings
✔ 98.3% in-hospice stays were harm free
✔ 98.7% harm free episodes of care
✔ 1.7% of in-hospice stays incurred low harm
✔ 1.3% low harm episodes of care
We continue to have a positive culture of reporting
and our threshold for capturing events is low.
Benchmarking against similar providers and the
NHS, CHSW report all incidents which would not
be classed and recorded as incidents elsewhere.
An example of this is some of our medicines
incidents. As part of PSIRF implementation we
plan to differentiate between true patient safety
incidents and other learning events such as
compliance breaches
We treat all Controlled Drugs (CDs) schedules the
same and therefore the CD incident rate will be
higher than most other providers who are likely to
report the high schedules only. From 1 April 2023
we will be running a pilot study to treat CDs in
accordance with the statutory requirements, rather
than exceeding the measures required
All our medicine incidents are reviewed by the
Service Level Agreement (SLA) Pharmacists on
a quarterly basis as part of the standing agenda
for the MSG
We externally report our CD incidents via the NHS
England CD Quarterly Occurrence Return and we
take an active role in the South West Controlled
Drugs Local Intelligence Networks, working closely
with the Controlled Drug Accountable Officer
(CDAO) for the region
We record all incidents in which family members
are involved in as they are residents in the hospices;
this is a variance from most other providers where
families would be classed as visitors
We record all incidents that involve siblings, for
example a fall off a bike in the grounds of the
hospice, supervised by a parent or a trip in soft play.
While this artificially elevates our overall incident
numbers, we consider it important to record the
event as there may be leaning and an ability to
prevent a repeat or reduce potential harm level
We record events that are out of the ordinary in
terms of our day-to-day care activity, for example a
deteriorating clinical presentation or a resuscitation
situation as a way of reviewing the practice and
identifying any learning, both positive and negative.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 49

Part 5: Compliance and quality metrics
Clinical incident themes and notable incidents
The Senior Team Leaders for
Quality and Education have been
identifying themes each month
from the Accident, Incident and
Near Misses (AINMs) that are
reported. These themes are
highlighted to the wider Care
Teams using a newsletter ‘Learning
Incident Themes’ which is on
display in each of the Care team
offices and discussed at monthly
team meetings. This facilitates a
culture of openness and honesty
about our incidents as well as
aiding the learning of staff at all
3 hospices.
Health and safety. There have
been multiple occurrences of
health and safety incidents within
the cohort of sibling visitors at
each site. We have looked at the
reasons behind these accidents
and most are unavoidable small
accidents causing minimal or
no harm. We have removed
equipment or added warning
signs where needed. Due to the
unavoidable nature of a large
proportion of the accidents,
we have looked at other ways
to address this issue and put
in measures to ensure that the
injuries sustained are kept to a
minimum. We have therefore
decided that all of the Sibling Team
members will receive first aid
training whereas previously only
the Sibling Team Leader was first
aid trained. We have a member of
the Care Team who is attending
a ‘train the trainer’ to become a
first aid trainer, and who will be
able to ensure all the Sibling Team
members are trained and kept up
to date with yearly refreshers.
Medicine management. The
table clearly shows that medicine
management is our most
significant theme for incidents and
occurrences. 24 were occurrences
(so do not meet the definition
of patient safety incident and
were around compliance and
governance) and 9 were near
misses, so action was taken before
harm could occur. For the 60
reports that were classified as an
incident, 80% were no harm and
20% were low harm. So despite
the high incident report rate, this
demonstrates a positive reporting
culture where staff are able to
report when something did not
go quite right, even though no
harm occurred, and then take the
opportunity to understand why.
Balance discrepancies. There
has been a recurring theme of
liquid drug volume discrepancies
for CDs across all 3 hospices.
On no occasion has there been
any concern regarding diversion.
Following discussion and
investigation it has been found
that there is a lack of consistency
across the 3 hospices as to
how liquid controlled drugs are
measured as well as dispensing
issues relating to the amount
provided in each bottle. Speaking
to the pharmacists who we work
in conjunction with as part of our
SLAs and other organisations
as to how they measure their
liquid CDs, it has been decided
by MSG to pilot a scheme where
we handle the lower schedule of
CDs in a different way while still
in accordance with legislation.
The aim of this is to keep the
safety around the controlled drugs
while reducing the number of
calculation errors due to not being
able to measure the contents
accurately without causing losses
of medications in decanting.
Daily CD stock checks
(compliance breach). CHSW
policy is to conduct CD stock level
checks every day to account for
all CDs (of all schedules) for both
stock drugs and children’s and
young people’s own. The purpose
of this is to check for unaccounted
losses or balance discrepancies.
There is no statutory requirement
to check CDs daily; it is
individual organisational policy
to set the frequency to meet
the statutory requirement of
regular stock checks. CHSW
has set the requirement as daily,
to enable early identification
and rectification of errors. On
all occasions that CDs were
not checked in accordance
with our own CD governance
arrangements, these were
identified the following day during
the next scheduled routine check.
These were all recorded as no
harm incidents as there were no
discrepancies, irregularities or
unaccounted losses.
Page 50 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Nutrition. 2 of the 6 incidents
were reported for dislodgement
of gastrostomy buttons (feeding
tubes) by children and young
people themselves at Charlton
Farm. The CHSW staff believed
the process for insertion required
transfer to acute services.
The Deputy Director for Care
(Clinical) reviewed best practice
and National Institute for Health
and Care Excellence (NICE)
and Royal College of Nursing
guidelines and there was no
evidence recommending insertion
of gastrostomy tubes had to
be carried out in hospitals. All
guidelines recommend a trained
healthcare professional can
perform this. Great Ormond
Street Hospital guidelines for
gastrostomy tube care, discuss
parents and community nurses
being trained for routine changes
and emergency replacement for
example, if they fall out. Generally
most of our children and young
people have a MIC-KEY or MINI
button which is easily inserted and
does not need any type of X-ray to
confirm placement and placement
is confirmed by aspirating the
tube once inserted and the pH
checked. This means replacements
can happen wherever the child or
young person is. Educationally the
team have a competency around
this and should only be inserting
gastrostomy tubes if this has
been completed. Therefore it
was assessed that providing
hospice staff have achieved the
required competency it is safe
practice and in the best interest
of the child or young person
(prevents an unnecessary transfer
to hospital) to offer this clinical
service in the hospice.
Transcribing. We have seen a
slight rise in the number of errors
that have occurred around the
transcribing of medications.
In nearly all of these cases the
errors were picked up before any
medication was administered. In
response to this we have set up
a Medicine Policy Sub Working
Group in order to efficiently and
promptly address any concerns
around the Medicine Management
Policy, particularly in regards to
transcribing and prescribing. In the
interim, individual hospices have
been offering further training to
nurses within team meetings and
at Little Bridge House they have
implemented a new system of
Medicine Administration Record
(MAR) clinics whereby a doctor
and nurse video call the family
prior to their stay in order to write
the MAR. We feel that these steps
will greatly decrease the number
of these types of reports.
Tissue viability. There has been
an increase of reports regarding
tissue viability concerns this year
(from 2 to 9). Due to the rise in
incidents we looked closely at the
circumstances of these reports;
4 of these 9 reports of tissue
viability concerns were good
practice incidents as the pressure
area damage was observed
on arrival to the hospice and
therefore documented in order
to assess any healing or further
damage and as a record for
safeguarding information.
1 report was relating to a child
with behaviour that challenges
and 1 further report referred to
What is Grade 2
pressure damage?
a child at the end of life; these
factors most certainly affected the
predisposition of those children
to develop pressure areas and we
see this as a learning opportunity
for our Care Teams in relation
to vulnerability of individuals
to develop pressure areas. This
is being discussed within the
Education Team as to how best
to develop a package of learning
in relation to tissue viability
issues. All pressure areas that
were developed were grade 2
or below. As set out in the 2022
Quality Report, a team at CHSW
has developed the Tissue Viability
Assessment and Action Policy
and the Tissue Viability Risk
Assessment which has now been
disseminated and implemented
across all 3 hospices. This is to
set out to all Care Teams the
importance of risk assessing
tissue viability problems in the
vulnerable group of children and
young people who receive our
care and to update and educate
staff of the CHSW standards
for the assessment, monitoring
and management of any areas of
concern of potential skin damage,
actual skin damage or pressure
ulceration while the child or
young person is in CHSW’s care.
While the number of incidents is
higher this year since the tool has
been released, we are confident
that staff are now better able to
identify, monitor, treat and report
tissue viability concerns, and
this is perhaps the reason for the
increase to the reporting system.
Have not yet broken through the skin or
have a break in the top 2 layers of skin.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 51

Part 5: Compliance and quality metrics
Clinical incident themes and notable incidents (continued)
Hydrotherapy pool. There was
1 reported incident following lone
use of the hydrotherapy pool by
an adult sibling, and while the
injury was minor, it was discussed
within our AINMs meeting and
felt that a response needed to be
given. Since then, hydrotherapy
pool policy has been updated and
teams made aware of the strict
safety guidance around its use.
Bed risk assessments. In response
to an incident outside of CHSW
and unrelated to our care, we are
currently working on risk assessing
the different types of beds we
use in order to ensure we are
providing the most appropriate
and safest bed and mattress for
them during their stay.
Ventilation paperwork. In
response to a concern raised by a
parent regarding filter changes of a
child’s ventilator, we have adjusted
the documentation to prompt
staff to change the filters on the
ventilators daily.
Information Governance
There is a CHSW wide organisation
IG group to ensure that all staff
and systems are compliant with
regulatory standards. CHSW has
achieved Level 2 in the NHS Data
Security and Protection Tool
Kit. We have all the key roles in
place including a Data Protection
Officer, Senior Information Risk
Officer and Caldicott Guardian.
All post holders have completed
the requisite training. The Head
of IT is an integral member of the
weekly Risk and Incident Group
and this has helped strengthen our
understanding and approach to IG.
There were 15 IG incidents in
this last year. 2 incidents were
recorded as good practice
as CHSW staff recognised
information had been shared
with them in error and took the
appropriate actions to maintain
the security of the information and
liaised with the relevant senders.
None of the CHSW incidents met
the threshold for reporting to
the Information Commissioner’s
Officer. All incidents were
graded no or minor harm. The
predominant theme (4 incidents)
related to sending information
by email to the wrong recipient;
with the exception of 1 incident,
all unintended recipients were
CHSW staff or other healthcare
professionals. In the 4th incident,
information about CHSW child
1 was sent to CHSW child 2’s
family. The families knew each
other and were aware that they
both received our care. An internal
investigation identified where the
error had occurred. Both families
received apologies and actions
were implemented to prevent any
future error.
Health and safety accidents and incidents
We continue to monitor health
and safety incidents in the weekly
risk meeting and work closely
with the CHSW Health and Safety
Advisor, who attends this meeting.
Each incident is analysed to ensure
correct reporting, implementation
and follow up on an appropriately
robust action plan, and to trigger
further investigation or reporting
where required.
Total health and safety incidents
and accident numbers during 2022
to 2023 show consistency when
compared to the previous period,
and analysis of the incident types
and severity also shows similar
findings. All incidents reported
were graded low, minor or no
harm with the majority being slips,
trips and falls or struck by/stuck
against incidents. This is consistent
with our support provision
to siblings, who are the most
common group affected by the
incidents, with 36 being attributed
to them. Referred children or
young people by comparison only
accounted for 22 incidents.
There were 3 incidents in the
time period that met the criteria
for reporting to the HSE under
RIDDOR. These were reported
at the earliest opportunity and
internal investigations were
completed for each one. 2 of the
reportable incidents involved
members of staff who required
more than 7 days off work as a
result of their injury. 1 involved
a sibling who required attendance
at hospital. All were classed as
low harm despite meeting the
RIDDOR criteria.
Page 52 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Internal audit process
CHSW has a comprehensive
internal audit cycle and monitoring
of the clinical audit calendar takes
place at the Quality Governance
Group meetings. We have
completed 34 clinical audits this
past year on the following areas
of practice:
IPC
CDs
End of life care
Safeguarding
Referral process and data
review
Documentation (including
MAR)
Departure letter content and
process
Moving and handling
Behaviour that challenges (for
safety intervention monitoring)
Health and safety.
In conjunction with spot check
audits, the Vantage system
provides a continuous means of
monitoring compliance by
live dashboards and alerts,
which means that areas of
non-compliance can be addressed
immediately rather than being
identified on a retrospective audit.
For example, identifying a member
of staff has gone out of date for
a statutory training requirement
is highlighted by the system, an
alert is then sent to the individual,
the Education Team and the line
manager. The Senior Care Leaders
also have live oversight of this.
Children and young people safeguarding review
CHSW teams continue to work effectively with local
authority teams in support of children and young
people with known safeguarding concerns or needs.
Staff are trained to work sensitively and responsively
within legal parameters and their professional
boundaries and scope of practice, to support families
in their journey to the end of life and beyond, in close
and appropriate liaison with external service and
agency partners. There are many examples of staff
working with significant safeguarding complexities
around legal guardianship, ongoing court proceedings
and the like, in the best interest of the child, while
maintaining positive, supportive and healthy
relationships with the child, their primary caregivers
(whoever is legally designated as such) and wider
family, including family of birth. Our teams are familiar
with working sensitively with highly confidential
information on a regular basis, while navigating
different local authority reporting procedures and
pathways across the South West. Legislation can be
complex, and the teams work hard to achieve good
relationships with our partners to ensure the care
given to children and young people with complex
needs is executed within the moral, ethical and legal
parameters of safeguarding.
Adhering to the 10 core safeguarding standards,
informed by legislation and statutory guidance
including Safeguarding Children and Young People:
Roles and Competencies for Healthcare Staff
(Intercollegiate Document 4th Edition 2019) enables
us to be robust in our comprehensive approach to
safeguarding all at CHSW.
Regular family support meetings across CHSW
hospices have continued to provide a platform for
conversations around the holistic needs of a child
or young person and their family, closing gaps of
knowledge and sharing concerns that enable a clear
picture of family need and potential safeguarding
matters to be identified and preventive action and
sharing of information with other services and
agencies to take place as necessary.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 53

Part 5: Compliance and quality metrics
Safeguarding data
Of a total of 8 cases (concern, event, occurrence,
good practice or disclosure) reported during the
past year at CHSW, 62.5% (5 cases) were reported
to be no harm, in 12.5% cases (1 case) the level of
harm was considered to be low or minor, and in 25%
cases (2 cases) the level of harm was considered to
be moderate. Staff responses to all cases indicate
compliance with CHSW policy and procedure, with
documented evidence of appropriate discussion
with senior colleagues, reporting, both within CHSW
and to external agencies, as is our duty. Half of the
report cases were incidents, while the remaining
half were considered examples of good practice. As
noted above, there were no cases of SIs or significant
harm. CHSW is always cognisant of safeguarding
responsibilities towards staff too, and 1 reported
incident below refers to such an event.
Safeguarding 2020/2021 2021/2022 2022/2023
Young person 18+ safeguarding incidents occurring
on hospice site, concern relates to family care.
CHSW staff not involved in incident
Young person 18+ safeguarding incidents occurring
in-hospice.
CHSW staff involved in concerns raised
Young person 18+ safeguarding concerns disclosed
to CHSW staff not occurring in-hospice.
CHSW staff not involved in incident
Child safeguarding incidents occurring in-hospice,
concern relates to family care.
CHSW staff not involved in incident
Child safeguarding incidents occurring in-hospice.
CHSW staff involved in concerns raised
Child safeguarding incidents disclosed to CHSW staff
not occurring in-hospice.
CHSW staff not involved in incident
0 0 0
0 0 0
1 0 0
0 0 3
0 0 1
1 1 2
Other 1 0 2
Total 3 1 8
When comparing 1 year’s data to the next, it is not
entirely clear how to interpret this. It might be that
as staff have become more familiar with the digital
reporting platform (Vantage), there has been an
increase of confidence in reporting, both in terms of
recognition of need and familiarity with use of the
system. The weekly incident review meeting which
includes membership from all clinical and support
services provides opportunity for ongoing monitoring
and evaluation of the safeguarding reporting system,
the nature of incidents reported and resulting learning
agendas. The increase in cases reported is not a
cause for concern, but highlights the vigilance within
the culture at CHSW and the efficacious use of the
digital system for capturing data. Recognising the
safeguarding nature of situations enables us to seek
guidance and reassurance from external agencies
and governing bodies (such as Local Authorities
and the CQC), while demonstrating transparency and
candour in our practice.
Holding regular family support meetings in each of
the hospices, whereby staff can respectfully and
carefully share information they might have about
a family, enables the ‘piecing together’ of the jigsaw
to generate a more holistic picture of the situation a
family is in, thus ensuring that safeguarding is always
a consideration. As such, the teams are well placed to
work collaboratively with families to empower them
and prevent harm where possible, in partnership with
other agencies, and follow the guidelines for referrals
to local authority teams as appropriate.
Page 54 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Safeguarding training
Considerable work has been undertaken during the
past 7 months to review the training structure and
external provision of Level 3 Safeguarding training for
relevant staff. There was a delay in the roll out of some
planned training due to trainer sickness at the start
of 2023 (13 members of staff needed to postpone
their training until later dates) and this is reflected in
the data in the table below. It is anticipated that full
training compliance will be achieved within the next
2 to 3 months with more sessions planned. There
is further Level 4 and 5 training booked for staff at
Heads of Care, Leads and Deputy or Director level in
the coming months to comply with recommendations
made in last year’s report.
2022/2023 training figures
Clinical (Nurses, Care Teams, Doctors, Physiotherapist)
Clinical staff
Bank clinical staff
Safeguarding adults level2 100% 81%
Safeguarding adults level 3
(Senior Care Management Team only)
94% n/a
Safeguarding children level 3 92% 100%
Safeguarding children level 2 99% 77%
Safeguarding children level 3 86% 76%
Safeguarding children level 4
(Senior Team only)
33% n/a
2022/2023 training figures
Non-clinical (Sibling Team, Housekeeping and
Kitchen Team, Psychologist, Admin Team)
Non-clinical staff
Bank non-clinical staff
Safeguarding adults level 1 97% n/a
Safeguarding adults level2 88% 75%
Safeguarding adults level 3
(Senior Sibling Team and Psychologist)
100% n/a
Safeguarding children level 1 96% n/a
Safeguarding children level 2 90% 75%
Safeguarding children level 3 100% 50%
Implementation of the Liberty Protection Safeguards
(LPS) has been further delayed until the next general
election (anticipated autumn 2024). As such, and
following recommendations from last year’s report,
all Senior Team Leaders and Heads of Care across all
hospices have attended Mental Capacity Act (MCA)
and Deprivation of Liberty Safeguards (DoLS) training,
as a refresher until the new guidance is published.
Moving forward, the plan is for key personnel within
CHSW to undertake relevant training, provided by
an external agency and develop a programme of
cascading the training to CHSW staff, as appropriate. It
is anticipated that this training pathway will be in place
by the end of 2023, and resulting MCA and DoLS (LPS
when being used) training statistics will be placed on
all staff training profiles for subsequent reports.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 55

Part 5: Compliance and quality metrics
Care and support developments and moving forward
A new Deputy Director of Care for Children and
Families has been appointed from April 2023,
with responsibility for overseeing safeguarding
responsibilities. A family support lead role within
the central management care structure will work
with the Deputy Director to ensure adherence to
safeguarding policies and procedures across CHSW,
liaising with Heads of Care, Educators, Clinical and
Health and Safety Audits
During this reporting period the CHSW Health and
Safety Advisor also completed comprehensive Health
and Safety Audits. The purpose of these was to assess
the 3 hospices’ policies, systems and procedures to
gauge levels of compliance with agreed standards.
This was the first audit following extensive reopening
of the hospices and activities that were restricted
during the height of COVID-19. All hospices achieved
good levels of compliance with percentage scores
of more than 87%. Areas of non-compliance were
Care Teams, as well as other members of the Central
and Senior Leadership Teams, to guarantee that
training, knowledge, practice and reporting is up to
date. During the coming months, CHSW Safeguarding
Policies for Children and Adults and CHSW Child
Protection Procedure will be reviewed and updated
as a priority.
mainly down to gaps in administration requirements
such as displaying the necessary health and safety
poster. There were no items found at any hospices that
required immediate escalation and response due to
being high risk. All items necessary were added onto
an action plan and assigned to an appropriate member
of staff with a target date for completion. This will be
reviewed by the Health and Safety Advisor and Head
of Care to ensure actions are completed and recorded
within the set timeframe.
Health and safety
audit results
Care 87.92% 88.37% 91.81%
I just wanted to say a big thank you for all the things
you did during our stay at Charlton Farm. The love and
care we all felt from each and everyone of you was
so much appreciated and we will never forget all the
lovely little touches that made our stay so special.
Medicines management and controlled drugs
Medicine administration is a significant role for our
Care Teams, and we invest time to ensure we practise
safely by regularly conducting audits and reviewing
incidents. We have a healthy reporting culture and we
elect to record and report to external agencies all CD
incidents across all schedules of drugs, including the
lower schedules and no harm incidents. We recognise
that this results in a higher number of incidents being
reported and causes our figures to be higher than
other organisations, but we believe the knowledge,
understanding and opportunity to link learning is a
position we continue to support and advocate.
The MSG, which was established in 2020, continues
to meet on a quarterly basis and is chaired by the
Charlton Farm Medical Director. The membership of
this group includes the CDAO, registered managers,
Non-Medical Prescribers and the pharmacists (under
SLA) from the local acute trusts. This group provides
a focal point for medicine management policy
development and review of medicine incidents
and audit findings. The professional support and
guidance from the pharmacists is central to this group
and overall safe medicine management across CHSW.
During the past year we have increased our pharmacy
support at Little Harbour and Charlton Farm.
Page 56 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Medicines audit activity
Several audits are conducted
during the year reviewing different
aspects of medicine administration
including:
Standards of record keeping
of MAR (see table opposite)
External visits by pharmacists
(through SLAs)
6 monthly CDAO audit
(see table below).
Medicine Administration Record audit
Completed as part of the documentation audit.
MAR score
Consolidated result (last year’s result) 91.5% (92%)
While good practice was observed across most of the audit areas, the
main areas for improvement are to ensure consistency with essential
standards such as:
Missing allergy documentation
Pages not identified correctly for children or young people,
such as missing sticker or name, date of birth or NHS number
MAR not discontinued or scored through
MAR signatures missing (transcription/prescription,
nurse and/or doctor).
Controlled Drugs Accountable Officer 6 monthly audit
It is a statutory requirement for the CDAO to undertake a 6 monthly compliance check of the safe storage,
recording and disposal of CDs.
August/September 2022 February/March 2023 Total annual score
92.9% 94.1% 93.5%
97.6%* 96.7% 97.1%
94.1% 97.6% 95.8%
Consolidated result 94.8% (92.5%) 96.1% (93.3%) 95.4% (93%)
The main areas of improvement:
Approved signature list - the completion of this has greatly improved on previous years
Record keeping - there was clear improvement in attention to detail with entries in the CD register.
Areas to continue to work on:
Entering the signing in information in the correct columns in the CD Register
Providing a clear audit trail from ordering to receipt of CDs. There are inconsistencies
in some records and while there are no discrepancies in stock balances, in a couple
of entries the audit trail is difficult to follow at first look. There is an outstanding
piece of work from this past quality year to review the end-to-end process of signing
in CDs as the current policy and practice has more steps than is required and this may
be contributing to the inconsistencies.
Annual Quality Account - 1 April 2022 to 31 March 2023
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Part 5: Compliance and quality metrics
CHSW improvement activity:
Controlled Drug Management Pilot 1 April 2023 to 30 June 2023
Children’s hospices, like other healthcare settings, are
regulated and must comply with legal requirements
for the safe storage, prescribing, administration and
destruction of CDs. This includes the legal requirement
of having Standard Operating Procedures (SOPs) in
place around the management of CDs. CHSW practice
has been to treat all children’s or young people’s CDs
the same, regardless of the schedule of the CD. There
are legal requirements that are required for schedule 2
and 3 CDs that are not necessary for schedule 4 and 5.
Current practice was creating an additional workload
that was not necessary to demonstrate compliance
with legal legislation. The CD management pilot is an
improvement activity across CHSW, adopting current
legislation in that CDs are treated according to their
schedule for safe storage, prescribing, administration
and destruction. The only exception to this, for the
pilot, is that it was decided that morphine sulphate
oral solution 10mg/5mls should be treated the same
as a schedule 2 and 3 CD rather than the schedule 5
group in which it falls. There was a consultation period
across the 3 hospices, before the pilot commenced, to
discuss and agree the new process as it was a change
in practice. Following the pilot, the results will be
reviewed, and a decision made about ratifying the
updated simplified process into CHSW SOP for CDs.
Thank you so much for our wonderful stay, we
all enjoyed ourselves so much and feel very
refreshed. We thought the 4 night stay is brilliant,
just the right amount of time. The pre-meeting
visit to do our child’s meds worked really well,
much less of a rush when we first got there.
Medicines reconciliation
Little Harbour Medicines Reconciliation Audit 1
January 2023 to 31 March 2023.
Background: Medicine reconciliation is a process
fundamental to improving patient safety and is
designed to prevent medication errors at transition
points (WHO, 2007). It is defined by the Institute for
Healthcare Improvement as the process of identifying
an accurate list of a person’s current medicines and
comparing this with the list that is being administered,
recognising any discrepancies, and documenting any
changes, resulting in a complete and accurate list of
medicines. The term medicine includes complementary
and over the counter medicines, and any discrepancies
should be resolved.
For children and young people receiving medication,
medicine reconciliation and transcribing of their
medication is an important part of their care. This
can only be achieved when healthcare professionals
have the most accurate and reliable information
about the child or young person’s medication.
Paediatric Palliative Care (PPC) settings should have
systems in place for medicine reconciliation to make
sure that children and young people admitted to a
hospice receive safe care and treatment.
Little Harbour Medical Director conducted an audit
during 3 months from January to March to assess how
successful the pre-stay check list medication request
process is by reviewing how many risk assessments
were completed.
During this 3 month period:
Total number of medications transcribed on the
MARs = 243
Total number of risk assessments for medications
required = 58 (54 non-CD and 4 CD) which is 24%
of the total number of medications
22% of risk assessments were for laxatives
Other reasons for risk assessments were dose
changes, no labels on medication boxes or bottles,
over the counter medications, and unlabelled
supplements.
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Part 5: Compliance and quality metrics
Conclusion: Almost a quarter of medications
transcribed on the child or young person’s MARs
required a risk assessment as the medication did not
have the current instructions.
CHSW is developing collaborative working with the
linked pharmacists to help improve this process by:
Increase capacity to think about polypharmacy or
medicines optimisation (relevant for many of our
children)
Increase capacity to think about opioid stewardship
+/- to develop hospice formulary guidance
Help ensure families receive adequate and reliable
information about the medications we prescribe
(including pharmacy consultations if needed)
Provide regular medication teaching for the
Medical and Care Team
Provide an informed approach regarding novel
approaches to medicines delivery such as mucosal
atomisation devices and Computerised Ambulatory
Delivery Device (CADD) pumps
Optimise learning from medicines incidents and
optimise the safety and effectiveness of hospice
medicines management
Provide more opportunities for specific case
discussions between the Medical and Pharmacy
Teams
Ensure all Symptom Management Plans have
specialist pharmacy input
Provide opportunities for joint publications related
to cases, case series or medicinal observations.
Non-Medical Prescribing
CHSW continues to recognise the value of the
development of Non-Medical Prescribing (NMP) within
the organisation to enhance the high quality care to
children, young people and their families.
We have now supported 3 candidates to complete
NMP training and to then enter into practice. They are
each developing their practice, becoming competent
at prescribing drug charts and prescriptions, as well as
starting to become involved with symptom planning
and prescribing for symptom control and end of
life care. One of the candidates is currently being
supervised to expand her knowledge and skills by
undertaking a clinical assessment course, which will
complement her NMP qualification well.
The NMP provision is proving a really helpful adjunct
to our medical provision, expanding for the Care
Teams and families to support with medications and
prescriptions, both in-hospice and in the community.
Our medical supervisors continue to meet regularly
with the NMP graduates after qualification to support
their ongoing learning and development. They are
also supervising them to undertake some really
important medicine-related project work (such as
Medicines Policy Review, development of Community
Medicines Policy, development of SOP reuse of
intranasal fentanyl in-hospice setting). These projects
are related to medicines safety and optimisation. They
are informed by best practice developments and/or
learning from incidents and are overseen and ratified
by the MSG.
CHSW plan to further expand the NMP provision
during the next few years. This will be really helpful
in providing nursing leadership for our most clinically
vulnerable children, young people and also those who
require opioid stewardship.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 59

Part 5: Compliance and quality metrics
Education and development
Development and training highlights
Introduction of Senior Team Leaders for Education
and Quality. This year we have introduced and
appointed to the role of Senior Team Leader
(Education and Quality). Their focus is to lead the
education programme across the 3 hospices to
ensure collaboration and standardisation.
Reintroducing face-to-face team meetings. This has
been hugely beneficial to the whole team. Some of
the training days our team have attended include:
Safeguarding (all levels)
MCA and DoLS training
Children’s Community Nursing Clinical Skills day
(Little Harbour)
South West Epilepsy Nurses Group
Assessor Training for Plymouth University
First aid course and assessors course
UCB Epilepsy Futures Meeting
Safety Intervention Trainer Update
UWE Bristol Enhancing Practice in Palliative Care
for Children and Young People
South West Palliative Care Learning and Sharing
Forum
NMP course
Winston’s Wish Bereavement course.
Being part of these various training opportunities has
widened the knowledge of our team members who
have then been able to share their learning through
team meetings, group learning or displays in-hospice.
We have also had Care Team members speaking
at a recent Association for Paediatric Palliative
Medicine (APPM) event in Birmingham sharing our
new Care Model for end of life care at home as well
as teaching as part of a module on palliative care
at Plymouth University.
While we have enjoyed the in-person element of such
training we have also taken the opportunity to utilise
the online and virtual training that is still going ahead,
some of these include:
Safeguarding (all levels)
MCA and DoLS training
APPM webinars and lectures
Rowcroft Hospice Online Training
PSIRF meetings
Food Hygiene and Allergy Awareness training.
End to end education and training review. The
Education Team have reviewed the existing
education and training, including induction
programmes, statutory and mandatory training
and core care skills and competencies to develop
these to ensure they are standardised, fit for
current and future needs and provide continuous
professional development opportunities.
Safety intervention training. We have increased the
number of our own staff trained to deliver safety
intervention training to our staff members; this
provides resilience and standardisation.
Simulation training. We are excited to have really
embraced the use of simulation in our education this
year with our educators working together with their
Medical Teams to provide scenario based simulation
examples for the teams to interact with and gain
further knowledge from; these scenarios have included
scenarios around anaphylaxis and deterioration
management. Charlton Farm have also developed a
dedicated space solely used for the Care Team to be
able to use equipment and mannequins and refresh
practical skills.
Clinical Skills platform. This year we have introduced
a new digital skills learning platform, clinicalskills.net.
This will be used by our clinical staff in conjunction
with face-to-face learning in order to ensure that all
the care being delivered follows the most up to date
guidance, legislation and best practice relating to our
clinical care. It offers staff the opportunity to access
training and guidance both on and off site at any
time meaning that staff can always be prepared for
the wide range of clinical skills we encounter daily.
A further benefit of the Clinical Skills platform is the
ability to embed these procedures into our policies as
we update them, again meaning that our practice is
current, relevant and of the highest standard. We have
already found that the platform has been successful in
aiding learning before study sessions as well as being
used as a fantastic tool when a child or young person
is coming in with a
specific clinical need.
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Part 5: Compliance and quality metrics
Vantage training log. The training compliance of staff
has been collated and now sits as a whole organisation
within the Vantage system. This enables individual
hospices to see their training requirements as well
as there being access for senior team to view the
compliance of the entire organisation. This is essential
in understanding the training needs of the workforce
and where there are areas for improvement, it is also
beneficial to staff as they have control over their own
training logs and the learning they feel they need.
Priorities for the year ahead, 2023 to 2024
We were very excited to launch our annual
Education Conference Week in May 2023 where
we spent 6 days focusing on training and updating
our Care Team in statutory, mandatory, clinical
and therapeutic skills. Each hospice spent
4 days as a team receiving tailored learning
according to the clinical needs of their caseload,
the training needs of the staff and responsive
training from incidents that had occurred. The
remaining 2 days were spent as a whole CHSW
team, where the 3 hospices joined together for
1 day of conference speakers and 1 day of
workshops for practical training updates
We have an exciting opportunity where a Care
Team member is undergoing training to become a
first aid assessor, this will enable CHSW to have
a designated member of the team who can train
the wider team
We plan to really expand the already fantastic
Clinical Skills resource that we have by building
many of our own bespoke modules which will
be completely unique to CHSW. We also hope
to develop these modules into a palliative care
package for our team and something we can offer
out to other professionals as an education package
Implementation of a new team meeting structure
alongside training days
specifically for our
bank staff members in
order to ensure they
are also compliant in
their training and also
receiving high quality
education and training
from CHSW.
Mandatory and statutory training compliance (permanent Care Team)
Training Subject Clinical staff Non-clinical staff
Resuscitation 96% 89%
IPC 94% 95%
Safeguarding (level 1, 2 and 3) 94% 95%
Moving and handling (level 1, 2 and practical) 92% 88%
Equality and diversity 100% 98%
Data security 96% 91%
Conflict resolution 100% 95%
Our training compliance continues to be at a high
level across the 3 hospices with the clinical staff
particularly achieving good levels of training and
compliance. The resuscitation training in particular is
near full compliance for all clinical staff. We are making
changes within moving and handling training with all
trainers across the 3 hospices being retrained this
year in order to standardise the education of staff
and ensure full compliance with a full team of trainers
and assessors. Equality and diversity, data security
and conflict resolution have good or perfect
compliance across clinical and non-clinical staff and
we will continue to strive to offer this valuable training
to all teams.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 61

Part 5: Compliance and quality metrics
Commitment to research and education
We now have an established CHSW Research Group,
meeting quarterly, coordinating requests for research
input and proactively considering how best to use our
expertise and resource to further PPC evidence base.
All the research leads have up to date, good, clinical
practice qualifications and research backgrounds.
CHSW demonstrates a strong commitment to research
and innovation and has engaged in and collaborated
with several projects:
1 Blended diet study, ‘Your Tube’, is a national study
led by Martin House Research Centre looking at
tube feeding with blended versus non-blended
diet. We have completed recruitment (to the
expected quotas) from all 3 hospices for this study.
We continue to submit data at intervals as required.
The research team were delighted to have hospice
engagement with this study and it has both helped
CHSW become more ‘research ready’ but also
paved the way for increasing children’s hospice
involvement in research by generating a wider
conversation nationally (we presented our
pathway to becoming involved with this at a
national webinar)
2 ‘My Quality Study’. A member of the Medical
Team has undertaken a study evaluating this
online symptom assessment tool. All 3 hospices
recruited children, young people and families.
Data collection was completed in 2021 and the
PhD was submitted in 2022
3 ‘Vicarious Trauma, sliming on and supporting
our colleagues’. This project on staff wellbeing
and support was completed by a doctor during
an elective at Little Harbour, as well as the Little
Harbour Clinical Psychologist and Medical Director.
It was presented at the South West Paediatric
Palliative Care Network meeting and awarded
the 1st prize. We plan to roll this study out across
CHSW in-line with a review of staff support
4 CHSW staff have participated previously in a
research study regarding staff wellbeing conducted
by The Martin House Research Centre in
conjunction with the University of York. The aim
of the study is to increase understanding about the
work-related stressors and rewards experienced
by children’s hospice staff; and identify staff
support systems and organisational practices that
offer the most potential to enhance staff wellbeing
at work. Following on from the involvement
of CHSW and 4 other hospices, the study was
developed and has now been rolled out nationally
5 One of our Medical Directors has joined the
APPM Guidelines Group to be involved in the
development of a Dystonia in PPC guideline
(work will begin on this in September 2023)
6 CHSW is a key partner in the Collaborative
Paediatric Palliative Care Research (CoPPAR)
network (a national initiative to support Paediatric
Palliative Medicine (PPM) Teams to be as ‘research
ready’ as possible and also to coordinate research
bids relating to nationally agreed PPM priorities,
which participating teams are then key in leading
or participating). Charlton Farm’s Medical Director,
together with a representative from the South
West Clinical Research Network (CRN), led a recent
Vicarious Trauma – ‘
‘ on and
supporting our colleagues
Background
Vicarious trauma (VT), sometimes referred to as
secondary traumatic stress, is the effect of
indirect exposure to a traumatic event.
Caring for dying patients in a hospice setting has
been shown to be protective for staff in
experiencing VT (1). However, other literature
shows that VT can can still be prevalent in
hospice staff through their work supporting
patients who are dying. Sometimes experiencing
these symptoms can result in staff ‘sliming on’
others; sharing the distressing information with
colleagues without warning, which can negatively
impact staff relationships as well as their mental
health. It is important these symptoms from VT
are addressed, to prevent staff dissociating from
their work completely and creating the potential
for post-traumatic stress disorder (2).
Most of the recent literature on VT focuses on
either nursing staff or doctors, mostly based in
either oncology or palliative care settings (3).
Therefore, we we wanted to collect responses
from all teams working within the hospice (e.g.
care teams, sibling support teams) to see if their
experiences of VT differed.
Following feedback received from staff after a
teaching session based on trauma informed
approaches to care, we wanted to investigate
their thoughts and feelings around VT they may
have experienced and how they feel they are
supported at work. In doing so, we hoped to
understand staff’s needs further and encourage
them to come forward in the future with their
feelings/experiences of VT.
Aim
To gain a better understanding of staff’s
experiences of vicarious trauma in their work
with children, young people and families, and any
support or additional teaching that they thought
might be helpful.
K.Macdonald 1 , A.Stephens 1 , B.Stewart 1
1 Little Harbour, Children’s Hospice South West
Method
We conducted an anonymous, voluntary survey
open to all staff members at Little Harbour
Children’s Hospice South West. Staff were asked
to rank answers on a Likert Scale from ‘Very
Frequently’ to “Not at all’.
Results
• 31 staff members completed the survey
• 35.5% often find themselves frequently
thinking about particular families they have
worked with
• 9.7% often feel very upset when something
reminded them of a stressful experience
with a family at work
• 19.4% feel that families and 16% feel that
colleagues have ‘slimed on’ them whilst at
work
Conclusions
• The majority of the respondents felt that
they have at some time or another
experienced VT, but overall felt quite
supported by their teams
• Suggestions for how staff can feel more
supported at work included:
• More regular reviews from senior
staff
• Daily hugs/debriefs with colleagues
• ‘Schwartz rounds’ to discuss
emotional aspects of people’s days
with others
References
1. Goodrich J, Harrison T, Cornwell J, Cooper M, Richardson H.
Resilience: a framework supporting hospice staff to flourish in
stressful times. London: Hospice UK. 2015.
2. Samson T, Shvartzman P. Secondary traumatization and proneness
to dissociation among palliative care workers: A cross-sectional
study. Journal of pain and symptom management. 2018 Aug
1;56(2):245-51.
3. Powell MJ, Froggatt K, Giga S. Resilience in inpatient palliative care
nursing: a qualitative systematic review. BMJ supportive & palliative
care. 2020 Mar 1;10(1):79-90.
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Part 5: Compliance and quality metrics
CoPPAR webinar relating to hospice participation
in Research. We continue to meet regularly with
the CoPPAR group and are benefiting from the
research expertise that the group is able to share,
plus the opportunities that it brings for us to be
involved in both shaping the PPC research agenda
and also actively contributing to the design and
delivery of relevant studies
7 We are actively building our links with our local
CRNs and National Institute for Health and Care
Research (NIHR) Applied Research Collaborations
8 We are developing a range of resources to teach
our teams about research in hospices
9 We are maintaining and developing links with our
academic partners
10 We are looking to formalise our research leadership
structure and have described a research nurse
development post which we hope to second one
of our nurses to within the coming year. We hope
that these developments will be key to ensuring
we can achieve our ambitions to become more
involved with research initiatives.
CHSW is involved nationally through multi-centre
large scale studies looking at key areas of interest
in PPC including:
Supporting recruitment for Children’s Palliative
Care Outcome Scale study (UK wide collaboration
led by King’s College London regarding an
outcomes scale for PPM)
Supporting recruitment for ENHANCE Study NIHR
project, a national study regarding what constitutes
good end of life care. The support for recruitment
is ongoing and we have offered to join professional
focus groups.
CHSW is also supporting recruitment to a number of
local studies including:
Bath University (Doctorate in Clinical Psychology
Training Programme) Neuromuscular Study
(regarding fatigue in young people with
neuromuscular conditions)
Bristol University PhD project regarding Quality
of Life (14 to 25 years, young people or families
quality of life with serious illness)
University Hospitals Bristol and Weston study in
Prophylactic antibiotics to prevent chest infections
in children with neurological impairment (PARROT).
Care developments
This year has been a period of COVID-19 recovery
and building the foundations to move forward with
our new Care Model and Strategy: skilled, resilient
and responsive hospices.
The principles of our care to children, young people
and families in the new Care Model are:
To build on the therapeutic and holistic care
on offer
To strengthen transition for young people from
the age of 14 years adjusting our approach and
ensuring they are prepared and supported for the
transition to adult services
To work with children, young people and their
families who are expected to die before their
18th birthday
To be a flexible and responsive Care Model when
families need us most, giving real choices
To recognise different
needs of the caseload;
proactively support these
with different approaches
To offer outcomes based
intervention based on needs
To provide care and support
that is deliverable
To build on what we
do best and have a
clear framework to
provide clarity and
shared vision.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 63

Part 5: Compliance and quality metrics
Care developments (continued)
During the first year of the strategy work we:
Engaged staff and listened
Defined the vision and shared understanding
Expanded the nurses’ and carers’ establishments
Launched a Recruitment and Retention Strategy
in November 2022
Started to build the framework to deliver
Strengthened the Medical Teams and cover,
appointing 3 new Deputy Medical Directors
Appointed 2 Senior Team Leaders for Quality
and Education
Worked collaboratively with the ICB and
partner agencies on the BNSSG EoLC project
Started a 100% review of all care policies to better
reflect the changes in how we now deliver and
support care
Procured and implemented clinicalSkills.net (digital
skills learning platform)
Expanded the Care Digital Team, appointed
2 carers to help take forward care digital initiatives
Launched several new modules on Vantage
Established nursing posts in local trust in the hard
to reach areas (Somerset Team Leader Role)
Transition
There has been a significant amount of work carried
out by the Care Teams to develop the pathways to
support young people to move from children’s hospice
care to adult services. Optimising CHSW support
with transition has been a priority area for us in the
last 3 years and we have made significant progress in
developing our pathways and processes; these include:
Nominating an overall Transition Lead for CHSW
and Transition Leads at each of our 3 hospices
Our Medical and Nursing Teams are working hard
to optimise our transition links across the South
West, both specifically palliative care transitions
but also supporting our young people and their
families with the wider transitions that happen
while families are under our care
We have strong links now with several of our local
adult hospices and adult palliative care teams
We have developed a transition pathway and
checklist which will be embedded in our practice
We have developed a programme of webinars for
families and young people to attend (these have
worked well at Charlton Farm and are likely to be
replicated at our other 2 hospices)
Procured new uniforms for all the Care Teams
Revised all the care job descriptions
Implemented Senior Care Leadership Team
Strategy planning and away days.
This coming quality year the focus is on delivering the
priorities as set out in section 3:
To implement a digital clinical records system as
part of the Care CIS programme
Develop and grow our clinical expertise and
resilience to meet the changed nature of demand
and therefore respond when children, young
people and families need us most
To continue to develop and increase the ways we
engage with families and increase mechanisms to
gather service user feedback.
The strategy workstreams will provide flexible,
individualised and responsive care through:
Providing resilient leadership across all portfolios;
clinical delivery, quality governance, holistic and
therapeutic care
Strengthening digital ways of working across all
areas of care
Growing a skilled, resourceful and resilient
workforce.
We have developed a written transition information
pack for families and young people (this has worked
well at Charlton Farm and is likely to be replicated
at our other 2 hospices)
We are considering best practice in relation to
‘All About Me’ and ‘All About My Condition’
supporting paperwork for young people
transitioning from our care
Our teams offer to attend Education, Health and
Care Plans or other Transition meetings to support
a joined up transition process
We encourage feedback from young people
and their families about all aspects of our work,
including transition. We have had good engagement
(written input and one-to-one conversations) from
young people in relation to development of the
transition pathway and supporting paperwork. One
of our young people was also kind enough to speak
at one of our PPC Network Days about transition.
His reflections were powerful and helpful, and have
really helped to shape our practice
Our governance processes include oversight of our
transition pathway and processes.
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Part 5: Compliance and quality metrics
Digital Clinical Information System and Shared Care Record
To meet statutory requirements and be in-line with
the commitment set out in the NHS Long Term Plan
of paperless care records with patients having full
access to these records by 2024, CHSW has this year
continued ongoing work to scope out, review and
identify a new CIS which replaces the current care
database, paper care records and documentation.
We appointed a Care Digital and Operations Lead in
June 2021 and a supporting Digital Team consisting
of 2 Digital Support Coordinators in September 2022,
to support the ongoing due diligence and scoping of
the CIS as well as support the strengthening build
and maintenance within our existing and successful
Governance system, Vantage. Further CIS work has
been ongoing around the Shared Care Record (SCR)
access for CHSW Clinical and Medical Teams. We
have continued to engage with NHS England, NHS
Devon ICB and NHS Cornwall and Isles of Scilly ICB
Digital Transformation Teams to understand, apply
and procure SCR access in order to revolutionise every
aspect of how we continue to deliver and document
the outstanding care we provide. SCR access, will also
ensure we have access to relevant child and young
person information at any time, in turn, freeing up
valuable time for children, young people and families
rather than the unnecessary chasing of information
externally. The overall care experience will improve as
will staff time management, patient safety, medication
management, communication and partnership
working. The Digital Team are due to commence
the implementation stage of the Devon and Cornwall
SCR project in May 2023 with wider training and roll
out through quarter 1 and quarter 2 of 2023.
The following further development and scoping work
has taken place:
Review further essential specification criteria and
MoSCoW method (Must have, Should have, Could
have and Will not have)
Engagement and scoping work of numerous digital
systems on the market as new ones have emerged
as digital transformation continues to evolve and
demand for clinical systems grows
Arranged demonstrations of a number of systems
for various members of the Care Team and with
valuable IT input
Met with NHS Digital to gain insight and
understanding of further developments and
pathway with SCRs
Continued to meet, engage and share ideas
with our external regional partners for digital
transformation through the Devon Digital and
Technology Strategy Forum
Worked collaboratively with Senior Leadership and
Senior Management Team (SMT) representatives
in order to further analyse, identify and agree our
preferred CIS
Developed, reviewed and agreed a robust project
mobilisation plan in order to frame and implement
a realistic and visible pathway for CIS transition,
build, data merge, training and roll out.
Identified within this plan, where further work
around the key areas of our CHSW policies and
process which include:
Clear understanding of the Care Digital Strategy
Reviewing and updating CHSW Records Policies
and SOPs
Weekly data meetings around data cleanse,
deciding what data is to be migrated, retained
and archived or destroyed. This is in accordance
with the Records Management Code of Practice
for Health and Social Care 2021 and ensuring
this is aligned to our policies and NHS records
retention guidance
Robust and detailed data mapping exercise
to provide a comprehensive list of all data
records held
Reviewing of all clinical forms and paperwork.
The next steps of the CIS Project and our aims for
summer 2023 once a system has been procured are:
Engagement and communications - staff, children,
young people, families and external professionals
System build with a target commencement for
July 2023
Develop staff training
plans and sessions
Data transfer with a
target commencement
for October 2023
Pilot stage and
review
Full roll out and
launch to go live,
April 2024.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 65

Part 5: Compliance and quality metrics
Vantage
Our digital governance system has been developed
to address the historical issues of inefficiency and
productivity in the area of governance and assurance.
In 2020 we purchased the Vantage software system
and started working with the team at Vantage on
prioritisation and build of modules. In April 2021 we
launched the Incident Management module after
working with the team at Vantage on a customised
template for CHSW. On the recruitment of the new
post of Care Digital and Lead in June 2021, the
building and development of our governance system
has been driven and further governance modules
within Vantage has continued at pace. During this past
year, we have successfully implemented and launched
several new modules along with those implemented
the previous year, enabling us to continue to
effectively capture, review, monitor, learn and
continually improve from our internal audits, incidents,
risk and compliance outcomes while continually
focusing on patient safety, regulatory requirement
and framework. Details of our CHSW case study with
Vantage, can be found on LinkedIn.
Our Care and Medical Teams have continued to
work collaboratively with the Care Digital Team
to ensure our system continues to add value,
increase efficiencies, provide accessible evidence
of compliance and achieve statutory requirements.
Our Care Digital and Operations Lead has also
released a new quarterly digital bulletin.
Our stays mean so much to all
of our children who, through
the skilful nurturing of the
Sibling Team are able to
access mental health support
and guidance, though if
asked all they’d say it’s that
they’d played, played and
played more! In their words
Little Harbour is somewhere
they feel loved, and that goes
for all of us. We feel so very
lucky and grateful to have a
place in our lives that makes
our wider situation feel like a
gift and not a burden.
Full list of live Vantage governance framework modules:
Internal audit:
CDAO
IPC environment audit (including COVID-19) (live)
IPC handwashing and sharps (live)
End of life care and symptom control (live)
Departure letter standards
Tissue viability
Documentation
Moving and handling
Head of Care/Registered Manager self-assessment.
External partner working:
End of life care planning (Bristol project).
Quality tools:
Incident management
Hospice risk register
Duty Manager communications and handover
Care medical equipment record and matrix
Family therapy feedback surveys
Patient experience survey
Care policy ratification
Registered manager’s quarterly quality and
business reporting
Contracts and SLA Register
Complaints, concerns and compliments and
central CHSW
Data Protection Impact Assessment
Safety alerts
Training compliance and competency
Digital training guides and training bookings
Project hub.
Testing for Launch (June 2023):
Excellence reporting
Employee feedback, comment and suggestions hub
Safeguarding, including investigations chronology
and evidencing
IG module
Care meeting, minutes and actions
Transfer to hospital
Notice board - internal and external.
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Part 5: Compliance and quality metrics
Service user experience
We delivered high quality care to our children, young people and their families;
what our children, young people and their families think
Feedback from our children, young
people and their families is the
most powerful demonstration
of the impact CHSW is having
on their lives. Throughout this
Quality Account we have provided
examples of the lovely feedback
we receive from our children,
young people and their families.
It is important that we do receive
feedback, good and poor, as it
helps us assess our care and
support from the child or young
person and family perspective.
We use a variety of methods
to gather feedback, including
comment cards, supermarket
token system, verbal feedback,
surveys and suggestion boxes.
Little Harbour asked for feedback
from day visits:
What was the reason for your day visit today?
✔ Chill out and have fun
✔ Hydrotherapy visit, lunch and a rest for us
✔ Initial visit to meet the team and have a look
around.
What are the benefits of your day visit?
✔ To relax and enjoy life at Little Harbour
✔ We had a super time in the hydrotherapy pool,
music room and spending time with the Care
Team. We have been spoiled rotten!
✔ We have been introduced to an incredible
place and feel at ease about coming again.
Do you have any ideas of other activities?
✔ More of them
✔ Had the weather been better we would
have spent some time in the garden, maybe
next time
✔ Not at the moment, at first glance it looks like
you already offer loads! Thank you for making
us feel part of the family.
Little Harbour asked their families, what
3 words best describes the hospice:
✔ Amazing, homely, fun
✔ My happy place
✔ Amazing, organised, relaxing
✔ Safe, friendly, welcoming
✔ Supportive, caring, amazing
✔ Happy, safe, relaxed
✔ A safety net
✔ Fun, helpful, mentally beneficial
✔ Amazing, kind, helpful
✔ Safe, relaxing, comfortable
✔ Fantastic, fun, relaxing
✔ Welcoming, friendly, wonderful
✔ Magical, loving, essential
✔ Fun, happy, friendly
✔ Relaxing, enjoyment, peaceful
✔ Laughter, peaceful, grateful
✔ Fun, understanding, caring
✔ Inclusive, incredible, relaxing.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 67

Part 5: Compliance and quality metrics
We delivered high quality care to our children, young people and their families;
what our children, young people and their families think (continued)
A couple of examples from Little Bridge House include:
Forms in both family accommodation wings and
the family entrance inviting families to ‘Have
their say’ and 1 simple question of ‘You could
make my stay better by:’
In the rooms for children and young people
they are invited to add a CHSW emoji to their
notice board in response to ‘How does it feel
to be here’ and a post-it pad to tell us ‘What do
we need to know’. This is a more in the moment
feedback and can be added to by the child or
young person themselves where able, or with
help from parents or the Care Team
An example of where we made an improvement
following feedback from a family through our
‘We asked… you said’ board:
You said:
Please improve the food choices for children and
young people as they are fussy eaters.
We did:
We discussed this request with our Kitchen
Team and as a result the menu choice at every
meal was increased. We also make sure that
families know that they can speak to the
Kitchen Team direct to request something
different if the menu choices for a certain
meal are still not suitable.
We already checked in advance of stays if
there were any specific dietary requirements.
Time to care, time to listen - children and family engagement and feedback
The monitoring of compliments,
complaints and concerns is also
central to the way CHSW learns
and improves. CHSW prides
itself on very low numbers of
complaints and concerns and
the corresponding high number
of compliments.
We work closely with our children,
young people and their families
over a significant period of time
and encourage a culture whereby
we invite feedback and aim to deal
with issues before they escalate
and cause concern for all involved.
The Director of Care reviews
and provides oversight on every
complaint and concern received.
It is always pleasing to receive so
many compliments and during
this year a total of 138 were
received across the 3 hospices and
a selection of these are included
throughout the Quality Account.
All complaints and concerns were
responded to within the required
timescales. Internal reviews of
the circumstances leading to the
2 complaints were conducted
by the Registered Manager
Number of
compliments
and findings discussed with
the Senior Care Leadership
Team. All improvement actions
were implemented as required.
The 2 concerns related to
communication issues and
following review by the Registered
Mangers, lessons were identified
and actions taken to ensure the
situations are not repeated.
Number of
concerns
Number of
complaints
33 1 0
29 0 0
76 1 2
CHSW total 138 2 2
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Part 5: Compliance and quality metrics
Professionals feedback
Dear Little Harbour staff. Thank you very much for such a lovely placement. I have never met
such a lovely group of people and I have developed a great respect for what you do here. The
way you look after the children, young people and families is very inspiring. This placement
has been an incredible experience for me. I am very grateful for your patience, sharing your
experience and your encouragement.
To the team at Little
Bridge House. Thank
you so much for
providing me with such
a lovely placement. All
of you have been so
welcoming and have
made me feel like one
of the team! Thank you
for all your support. I’ve
had a wonderful time
and you’ve taught me
so much. I am sad to be
going but I wish you all
the best and maybe I’ll
see you all again.
I just want to thank
everyone again for all
your amazing support
and input into making an
intolerable situation the
best it could be for the
little girl and her family.
What we all achieved in
a very short period of
time was outstanding
and great team work.
Thank you.
To all members of staff at Charlton Farm. Thank you all so
much for welcoming me and supporting me during this 8
week placement. Each one of you are amazing and have
helped me in some sort of way during the placement. I
could not have imagined a better team to work with.
Dearest Charlton Farm team. The way each of you care for
the children, young people and their families inspires me
every day. Each of you bring your own special quality to the
team. You are incredible!
It was a real privilege to be part of the team delivering this
service. I hadn’t been to Little Harbour before and was
amazed with the care the child received at the end of her
life. Having nurses who knew her and the family, and experts
in palliative care for children present resulted in exceptional
end of life care that would not have been possible without
Little Harbour. It is an invaluable resource and a truly
wonderful place.
Thank you all at Little Harbour for being so lovely and
welcoming to me during my elective placement. I have
been able to learn so much about all the amazing work
you all do which I will definitely take forward with me in my
career. I couldn’t have asked for a better experience. It
really was too kind of you. Best wishes and thanks again.
Continued overleaf
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 69

Part 5: Compliance and quality metrics
What families say about us
The following comments were received from a selection of families who are, or have been supported by
Little Bridge House, Charlton Farm or Little Harbour.
To everybody at Little Bridge House. Thank you all so much
for taking such amazing care of us. You have managed to
take us from dark places at times and made us laugh, smile
and feel happy again. Starting to come here was one of the
best decisions ever! It really has been our ‘Happy Place’.
We just wanted to say a huge thank you to all of you for what
you did for us while we were at Charlton Farm. You gave us
so much positivity and allowed us to be a normal family. You
all do absolutely amazing things and you should be so proud
of yourselves.
Thank you so much for all of the care and support you have
given our child and family throughout the past 15 years. It
has been a lifeline to us on so many occasions and we will
never forget you all and your kindness.
To all the staff at Little
Bridge House. We
would like to thank you
for all the time and
care you gave to our
granddaughter. I know
the time spent there
by her mum, sister and
not forgetting the dogs
was made to feel at
home. The kindness you
gave to her family and
friends was one of total
compassion. The care
they were all given, was
wonderful and we are
incredibly grateful.
To all the staff at Charlton Farm. I just wanted to say a big thank you for all the things you did
to help make our stay at Charlton Farm more bearable. The love and care we all felt from
each and everyone of you was so much appreciated and we will never forget all the lovely
little touches that made our stay so special. Thank you so much to all the kitchen staff for the
wonderful meals that just made our day. It is a huge a comfort to us that our son spent his final
days in such a lovely place.
Thank you for the best
Christmas EVER!
To all at Charlton Farm,
thank you for making
our Christmas magical.
We will cherish the
memories for many
years to come.
I write this letter to express my sincere thanks
and gratitude for the fantastic care and support
my family have received throughout the short life
of our dear Grandson.
Your work has positive
impact beyond
measure.
To all at Little Harbour,
we can’t thank you
enough for all your care
and support over the
years. You are all angels
and we will miss Little
Harbour so much. It is
truly an amazing place
and every member of
staff are what makes it
so amazing.
Page 70 Annual Quality Account - 1 April 2022 to 31 March 2023

Part 5: Compliance and quality metrics
Staff wellbeing during 2022 to 2023
Support for the Care Teams is an
ongoing focus. Throughout the
past year, the Health Assured
Employee Assistance Programme
has been available to all. All staff
have supervision with their line
manager and can book individual
sessions with the Head of Care
for a catch-up. Staff at Charlton
Farm and Little Harbour have
direct access to a Psychologist
for reflective sessions relating to
the work.
Feedback from staff indicated that
the one-to-one reflective sessions
led by the Psychologist:
Are highly valued,
Psychology at Little
Harbour is a fantastic
service for staff
and families, and
has personally been
invaluable.
Enable staff to feel listened to
and understood,
It’s invaluable. We’re
so privileged to have
access to this support
and the Psychologist just
understands.
Provide a confidential space to talk
about the challenges of the work
and are helpful in supporting their
work in the hospice,
Talking over things
that happened at work
I felt I was listened
to, encouraged and
help was given to
look at other ways
to help myself deal
with issues.
And that they would book further
sessions and would recommend
to colleagues,
Always very friendly and
approachable. Usually
have some humour
which helps put me
at ease when having
sessions.
Having the session led by the
Psychologist who is embedded
within the Care Team is valued
as it is considered that this brings
an inherent understanding of
the nuances of the specific
challenges of working in PPC
and bereavement work.
It was invaluable to me
at a time I needed it
most. The Psychologist is
always responsive so will
make time even if not
within a slot if there is an
urgent need. The fact
she is within our team
means you don’t have to
explain every detail, she
just gets it.
That the Psychologist is
a member of the team
and fully understands
my role and support we
provide for families, this
helps hugely to make
links between the way
I’m feeling and my work
and experiences.
Psychologist has a
personal understanding
of the work, the
challenges, and the
team within I work.
Staff wellbeing priorities for the coming year
Evaluate the provision of staff support across the Care Teams
Identify areas of ongoing good practice and need, along with
appropriate models of support for each locality
Work collaboratively with our service delivery partners to consider
the joint support for virtual teams around families, such as end of life
care at home
Development and delivery of staff support training, such
as debriefing models, for Care Teams.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 71

Part 6: Statements from Integrated Care Boards
Prior to the publication of
the Quality Account for the
financial year 2022 to 2023,
this report was shared with
the Integrated Care Boards
In accordance with NHS England requirements for
the review and scrutiny of Quality Accounts, CHSW
has shared this Quality Account with all the regional
Integrated Care Boards (ICBs) which include:
NHS Bath and North East Somerset, Swindon
and Wiltshire (BSW) ICB
NHS Bristol, North Somerset and
South Gloucestershire (BNSSG) ICB
NHS Cornwall and Isles of Scilly ICB
NHS Devon ICB
NHS Somerset ICB.
We have received the following feedback.
Statement from NHS Bath and North East Somerset,
Swindon and Wiltshire ICB
NHS Bath and North East Somerset, Swindon
and Wiltshire ICB welcome the opportunity
to review and comment on the Children’s
Hospice South West (CHSW) Quality Account
for 2022 to 2023. In so far as the ICB has been
able to check the factual details, the view is
that the Quality Account is materially accurate
in-line with the information presented to the
ICB via contractual monitoring and quality
visits and is presented in the format required
by NHSE/I presentation guidance.
The ICB recognises that 2022 to 2023
has continued to be a difficult year due to
workforce pressures and the continued
recovery of services following COVID-19. The
ICB would like to thank the CHSW for their
continued contribution to supporting the
wider health and social care system during
the COVID-19 recovery phase.
It is the view of the ICB that the Quality
Account reflects CHSW’s ongoing commitment
to quality improvement and addressing
key quality improvements in a focused and
innovative way. Although the achievement
of some priorities during 2022 to 2023 have
continued to be affected by COVID-19, CHSW
has still been able to make achievements
against all their priorities for 2022 to 2023
including:
1 To implement a Clinical Information
System (CIS) to support safe practice.
CHSW has fully implemented Vantage
as the governance system throughout
care and is on track to deliver and
implement the care records element
of the project in the next quality year.
This involved recruiting additional digital
resource into the organisation, completing
data mapping of all electronic and paper
records and starting a record retention
programme in preparation for data
migration to a new system
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Part 6: Statements from Integrated Care Boards
2 To increase service reach, provision and activity,
in-line with a new Care Model and Strategy by
increasing the care staffing resource and through
enhancing and expanding the Care Team’s skills
and knowledge. This was achieved by establishing
and recruiting various roles within the organisation
including Deputy Medical Directors (1 at each of
the 3 hospices), Deputy Director of Care (children,
families and psychological services), Senior Team
Leaders for education and quality and to continue
to train nurses as Non-Medical Prescribers. All of
this was supported by positive changes to pay and
terms and conditions as part of the recruitment
and retention strategy and by engagement work
with local university links to scope opportunities
for professional development and support for
CHSW staff
3 To continue to engage with children, young
people, and their families to ensure we meet
their needs. This was achieved by the appointment
of a Deputy Director of Care (children, families,
and psychological services) to lead the family
support arm of care and the focus will be on
engaging the children and family, reintroducing
face-to-face support groups and sessions,
employing some different mechanisms to
gain feedback in the hospice and listened and
responded to in-the-moment feedback.
The ICB supports CHSW identified Quality Priorities
for 2023 to 2024. It is recognised that several of
the priorities described in this Quality Account align
with the NHS priorities set out in the NHS Long
Term Plan and Operational Planning Guidance with
a crucial focus on reducing inequalities. The ICB
welcomes continued engagement in the agreed
service improvement plan and focus on:
1 To implement a digital clinical records system as
part of the Care CIS programme. This will build
on the success of the digitalisation in care and
embed in point of care work. The digital system
will replace the current care database and paper
care records and documentation to ensure full
compliance with the commitment set out in the
NHS Long Term Plan of achieving paperless
care records
2 Develop and grow our clinical expertise and
resilience to meet the changed nature of demand
and therefore respond when children, young
people and families need us most. This will involve
strengthening the Senior Care Leadership Team to
provide increased resilience, 24/7 cover
and visibility across all 3 hospices to ensure
care is safe and well led as well as continue to
ensure the hospice teams work collaboratively
to build durability and achieve safe staffing
throughout the service. This will be supported
by continued financial investment in increasing
the Care Team workforce establishment in-line
with the recruitment and retention strategy and
work to standardise and professionalise internal
training programmes, including induction and
core competencies
3 To continue to develop and increase the ways we
engage with families and increase mechanisms
to gather service user feedback. This will be
establishing a Patient Safety and Experience Lead
post and development of different ways of seeking
feedback from children, young people and families
to increase the use of digital tools for feedback.
This will also be supported by drawing on this
year’s feedback which confirms that families like
the choice of in-hospice, at home or virtual, and
that through the prioritisation approach, families’
urgent needs are supported and are able to access
hospice services at very short notice. The result
will be a quality improvement project in the next
quality year which will focus on improving the child
and family experience of arrival at the hospice site,
as this is an area which families repeatedly tell us
can take too long and there is too many competing
demands at the same time.
We look forward to seeing progress with quality
priorities identified in this Quality Account in
conjunction with the continued transition to Patient
Safety Incident Response Framework (PSIRF) and
the formulation of the organisation’s Patient Safety
Incident Response Plans. We would encourage
alignment to focus improvement in key areas.
NHS Bath and North East Somerset, Swindon and
Wiltshire ICB are committed to sustaining strong
working relationships with CHSW, and together
with wider stakeholders, will continue to work
collaboratively to achieve our shared priorities as
the Integrated Care System further develops in
2023 to 2024.
Gill May
Chief Nurse Officer
NHS Bath and North East Somerset,
Swindon and Wiltshire ICB
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 73

Part 6: Statements from Integrated Care Boards
Statement from NHS Devon ICB
NHS Devon ICB would like to
thank Children’s Hospice South
West (CHSW) for the opportunity
to comment on the Quality
Account for 2022 to 2023.
CHSW is commissioned by NHS
Devon ICB to provide hospice
care, respite services and support
to children, young people and
their families in 3 hospice facilities
in Devon and Cornwall. Services
described in the Quality Account
highlight the breadth of care
and attention taken to provide
support in planned and emergency
situations. The ICB seeks
assurance that care provided
is safe and of high quality, that
care is effective and that the
experience of that care is a
positive one.
As Commissioners, we have taken
reasonable steps to review the
accuracy of data provided within
this Quality Account and consider
it contains accurate information in
relation to the services provided
and reflects the information
shared with the Commissioner
over the 2022 to 2023 period.
Firstly, the ICB notes the
continued positive and impactful
inclusion of the young person and
family’s voice in the stories and
experiences leading the tone in the
account. These stories illustrate
the value in services provided
During May 2023 the Care Quality Commission (CQC) reviewed
information and data available relating to the 2 sites below which
upheld the existing ratings.
Safe Good Good
Effective Good Good
Caring Outstanding Good
Responsive Good Good
Well-led Good Good
This information was taken from CQC official website.
to children and families on site
but also as part of in-reach. This
insight demonstrates the strong
like between the experience of
service users with CHSW’s core
focus to ‘keep children, young
people and families at the heart’
of care delivery.
This Quality Account has
highlighted a number of positive
results against key objectives
and priority areas for 2022 to
2023. The priorities align to
3 core pillars: Safe, Effective
and Experience.
The ICB is pleased to note the
progress, and would like to
highlight the below achievements:
Priority 1: Safe
The Care Team moving to digital
systems (Vantage) and further
developing robust processes.
Priority 2: Effective
Positive recruitment, enhanced
professional development and
improved vacancy rates to service
reach, provision, and activity.
Priority 3: Experience
Learning and improvements were
established through feedback,
reviewed how care planning
is communicated and working
with families to find alternative
support.
All targets were achieved.
Priorities for 2023 to 2024
The ICB welcomes the 2023 to
2024 priorities outlined by CHSW
and will look forward to seeing
the projected achievements as
they aspire for continuous
quality improvement, as
commissioners we continue
to support their priorities.
Each of these programmes will
continue to evidence and improve
quality and safety for the benefit
of patients, families, carers and
staff building on the lessons
learned from 2022 to 2023.
Objective 1: Implement
digital clinical records
Anticipated benefits to improve
efficiencies, partnership working
and strengthen communication
and robust record keeping and
access to data.
Objective 2: Development of
clinical expertise and resilience
Increase resilience and operational
cover across the week across
all sites, through workforce
recruitment and retention,
establishing learning links and
caseload review.
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Part 6: Statements from Integrated Care Boards
Objective 3: Develop and
increase feedback mechanisms
to engage families
Establish Patient Safety and
Experience Lead, evolve the ways
CHSW receive feedback, increase
digital tools and undertake a
quality improvement project based
on improving the experience when
arriving at the hospice.
The activity levels and service
reviews give an in-depth insight
into the individual strengths
across all 3 locations. The ICB
looks forward to receiving
updates on progress in these
areas through the established
regular quarterly reporting.
The inclusion of internal audit and
information of incident themes
and trends illustrates a positive
culture to learning in-line with
Patient Safety Strategy and feeds
into the work and development of
PSRIF.
The ICB also notes the
comprehensive details under the
following areas:
Funding overview
Service review
Activity levels
Registered manager exerts
Compliance and quality metrics
New ways of working
Internal audit
Participation in clinical audits
Safeguarding review
Medicine’s management
Research and education
Experience.
Gemma Smith
Patient, Safety and Quality
Support Officer
NHS Devon ICB
Statement from NHS Bristol,
North Somerset and South
Gloucestershire ICB
The work of the Children’s Hospice South West makes
a crucial contribution to the care of children and their
families who are facing such extraordinary challenges.
This report shows a team commitment to providing
excellent services for families across BNSSG and
the wider area. It is especially satisfying to see that
commitment reflected in the CQC report.
The ICB would like to congratulate the team on
the work they do and how they have recovered
from the impact of COVID-19. We wish them
well for the year ahead.
Denise Moorhouse
Deputy Chief Nursing Officer
NHS Bristol, North Somerset
and South Gloucestershire ICB
Acknowledgements
Thank you to all our children, young people and families featured in this account for kindly agreeing to share
their stories and to all the Care Team who have contributed to the report.
Finally, huge thanks to the CHSW Graphics and Marketing Team for creating and presenting the Quality
Account in such a professional and engaging style and format.
Annual Quality Account - 1 April 2022 to 31 March 2023
Page 75

www.chsw.org.uk
enquiries@chsw.org.uk
Redlands Road, Fremington, Barnstaple, Devon EX31 2PZ
01271 325 270
Charlton Drive, Wraxall, North Somerset BS48 1PE
01275 866 600
Porthpean Road, Porthpean, St Austell, Cornwall PL26 6AZ
01726 871 800
Please note that no part of this report may
be reproduced without the prior consent of
Children’s Hospice South West.