2017 Conference Review Report final

#HNCCONF2017
November 2017
Chris Curtis
WORLD H&N CANCER AMBASSADOR

Head and Neck Cancer Conference 2017 Review
THE CONFERENCE
Head & Neck Cancer five-year survivorship in the UK is currently on the increase and this is
fantastic news. Health Professionals, aided by new drugs, technology, and awareness projects,
help continue this trend.
However, we must not get complacent about the great work being carried out in the UK, but
must continue to strive to increase the five year survivorship rate by learning from other
countries, and collaborate as patients, survivors, carers, health professionals, drug companies
and stakeholders in sharing ideas.
Future Directions
Our belief and ambitions are that Head & Neck Patients, Carers, Health Professional Teams and
organisations would benefit from a European and ultimately global wide support organisation,
and it is now our intention to drive that strategy forwards at pace.
The main purpose would be to connect Head and Neck Cancer patients/ carers and agencies
from around Europe under one umbrella. Such a European Foundation would be a hub of
creating awareness of the disease, information, support, and networking of European
connections all with the same aim:
“With early diagnosis of Head and Neck Cancer, help eliminate the link with end of life, create
high quality outcomes in the recovery and survivorship, and improve quality of life”
Conferences such as is reported on in this review help us to gain reputation and traction to
deliver on our European-wide and then global ambitions.
The Head and Neck Cancer Conference 2017 offered an invaluable opportunity for patients,
carers, health professionals, voluntary organisations, and other key stakeholders to discuss the
issues of retaining and improving ‘Quality of Life,’ and how the latest services and treatments
and developing innovations can transform Head & Neck Cancer Quality of Life experiences
during and beyond five year Survivorship.
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WELCOME TO OUR 2017 CONFERENCE REVIEW REPORT
“Living With & Beyond Cancer”
After a very successful one day conference for patients and carers held in November 2016, in
Liverpool, The Head & Neck Cancer Conference moved to Blackpool this year. We organised, for
7 th and 8 th November 2017, a two-day conference that brought together Health Professionals on
the first day and Patients and Carers on Day Two.
As our testimonials reproduced later in this report evidence, the
Head and Neck Cancer Conference 2017 was an inspiring and
memorable experience for delegates, exhibitors, speakers and
supporters alike.
The conference posed questions about Awareness, Support and
Knowledge and the challenges of five year survivorship. Inspired and attended by leading
national and international thinkers, the conference explored how, by introducing greater passion
and understanding into the system, patients, carers and the people who work with them, make
informed choices, continue learning and aspire to world-class performance.
At a time when Health Professionals are under ever more severe pressures, the conference
examined opportunities for everyone involved to help improve the Quality of Life. We explored
potential ways of enabling all of us to think differently about how we learn and what we can
achieve.
The programme delivered an exciting mix of keynote speakers, exhibitions and fringe activities
themed around the strands of Awareness, Support and Knowledge, and invited delegates to
Think Differently as a result. Speakers were invited either to build their presentation around this
triple-pronged approach or to concentrate on one aspect. Anecdotal and personal experience
sharing were encouraged. Wherever possible, speakers were grouped to explore counter or
complementary positions within a strand to further engage the audience. The participation and
engagement of patients and carers in all aspects formed an integral part of the conference.
Prevalence of Head and Neck Cancers
Cancers that start in the head and neck area (for example, the tongue, the nose or the ear) are
often grouped together under a general heading of head and neck cancer.
Most head and neck cancers are squamous cell cancers. Squamous cell head and neck cancers
don't usually spread to other body organs. But they can spread to lymph nodes (also called
lymph glands) in the neck.
Sometimes, the first sign of cancer that a person notices is a swollen (enlarged) lymph node in
the neck.
Some of the most common head and neck cancers include:
mouth and oropharynx
voice box (larynx)
food pipe (oesophagus or gullet)
thyroid gland
Credit: Cancer Research UK
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Credit: Graphic from Cancer Research UK http://www.cancerresearchuk.org/health-professional/cancerstatistics/statistics-by-cancer-type/head-and-neck-cancers/survival
Credit: Graphic from Cancer Research UK http://www.cancerresearchuk.org/health-professional/cancer-
statistics/statistics-by-cancer-type/oral-cancer/incidence?_ga=2.120252811.228999457.1513070991-
1000849572.1513070991&_gac=1.254004796.1513070996.EAIaIQobChMI46euz5SE2AIVS5PtCh25HQd
vEAAYASAAEgKvhPD_BwE
Credit: Graphic from Macmillan Local Cancer Intelligence tool (England),
https://lci.macmillan.org.uk/england/all/head-and-neck
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Anticipated benefits
Over the course of the conference, whether those attending were sponsors, speakers,
exhibitors, patients, carers or organisers, we anticipated that they would gain a greater
awareness of ways to improve the quality of life of patients in survivorship.
This would be done by:
Hearing from Inspirational Speakers, including from Australia, America, the Czech Republic
and the UK. Whether they were Cancer Survivors or World-Renowned Health Professionals
all would be sharing their Head & Neck cancer journey;
Enhancing knowledge – learning from a room full of
people, whether patients, carers or health professionals, who
are passionate about making a difference and improving the
Head & Neck Cancer journey... there really would be something
for everyone!;
Facilitating the making of connections - Networking activities provided the perfect
opportunity for everyone to meet both friends old and new, strengthen existing
relationships and catch up with like-minded people in a relaxed environment. For health
professional organisations connecting and renewing acquaintances may also offer potential
commercial opportunities;
Sharing ideas - Discussion forums together with patients, carers, health professionals and
companies in a unique environment, allowing all to share their own journey and see it
within a broader context. The whole conference would provide all attending with
opportunities to step beyond their own experiences and, for organisations, offer continued
professional development.
What did the delegates experience?
The agenda for each day are reproduced at Annex A.
On arrival delegates experienced a traditional Blackpool welcome, with Little Touches Details
providing an event ticket and guest house booking service; and a candy floss cart further gave
visitors that sweet seaside experience.
Very keen that the conference did not promote a negative atmosphere about illness, trauma and
fatalities, two clowns were on hand throughout both days to engage delegates with balloons,
fun and laughter as an antidote.
“Laughter is the best medicine”
Hazel Roddam, University of Central Lancashire
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A range of thought provoking Quality of Life Challenges were posed during networking and lunch
breaks to help delegates understand some of the real-life issues that Head and Neck Cancer
Patients experience daily.
These challenges included:
Smell Challenge
Aloneathon
Cream Cracker Challenge
Lunch Bowl Challenge
Deconstructed Lunch Bowl
Oral Screening
Fuller explanations of each of these challenges are included in graphical form at Annex B
Also in the breaks musician and Head and Neck Cancer patient Mo McCarthy played an array of
songs, with guitar and voice.
“There just aren’t enough of these conferences around”
Maurice McCarthy
Art Students from Blackpool and Fylde College set up station for
the entire two days to design their own visual representations of
the conference.
At the end of Day One a speaker’s evening dinner included a meal,
rotating networking opportunities, a card magician and a roulette table.
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For Carers attending on Day Two we introduced a session just for them.
A summary of responses during the Carers’ Session is included at Annex C.
During the second day of the event it became apparent that some patients would not sustain the
entire day, due to ill health. The agenda was therefore shortened by approximately two hours,
with agenda items from Dr Ghazali and Dr Vasudev removed from the agenda.
As the delegates departed, so local MP Paul Maynard arrived for a post conference discussion
with the conference organisers (see policy section for more details).
Our Global Speakers
We are delighted and proud about the high quality of speakers we were able to attract from
across the globe.
Six years Head and Neck Cancer Survivorship and now our World Head and Neck Cancer Patient
Ambassador and lead conference organiser:
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Our Conference President:
We welcomed three expert speakers from the United States of America:
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Our other International Speakers visited from Australia…..
…..and the Czech Republic
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And we welcomed expert academics
And from Derby University our academic brought some of her research students
We also welcomed a Biopsy Histopathologist…..
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……an Oral and Maxillofacial surgeon…..
…..and a Psycho-oncologist.
We were delighted a TV Doctor could join to facilitate the Carers Support session, partnered by
Blackpool Carers Centre.
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And last but by no means least yet another Head and Neck Cancer survivor turned entrepreneur.
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Conference exhibitors
We are grateful to all our exhibitors for providing a richness of content and of course their financial
and time support without which this conference would not have been possible.
Bristol-Myers Squibb
Clinigen
ATOS Medical
Society of British Dental Nurses
Severn Healthcare
SpiroTect
Oralieve
Village Hotels
Attain Digital
CCMedical
The Swallows Charity
Beaverbrooks
Royal College of Speech and Language Therapists
Aspen Medical
GuideDotYou Leadership Development
Dental Sky Wholesaler Ltd.
Insight Medical Products
Lune Valley Physiotherapy
Simon Goldsworthy
Newcastle University
Derby University
Mask Art Project
Your Cancer Journey
Little Touches Details Club
Marsden Rawsthorn Solicitors
Blackpool Carers Centre
Rosemere Cancer Foundation
Spire Healthcare
The Grove Hotel, Bournemouth
SimPal
Indivisual Fresh New Media and Events
Proton Therapy UK Ltd.
Macmillan Information
Oral Screening
Cancer Care
Countrywide Supplies
A Graphical illustration of all our supporters is included at Annex D.
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Quality of Life Capture Wall
On both conference days, Community Ambassador, The Swallows
Volunteer and Social Entrepreneur Phil Parramore facilitated a short
workshop that encouraged historical, current and future storytelling
about Quality of Life. We called it the Quality of Life Capture Wall.
On Day 1 Phil engaged with the Health Professional audience, encouraging them to answer three
questions:
1) “What are your greatest achievements supporting patients and carers with their quality of
life?”
2) “What are you working on now?”
3) “What would you like to see if you had an open cheque book?
On Day 2 Phil engaged with the Patient and Carer audience, encouraging them to answer three
questions:
1) “What are your successes / achievements that are helping you improve your quality of life?”
2) “What further support is required to further improve your quality of life?”
3) “Who would you like to thank for improving your cancer journey?”
The responses to the workshop questions were both high in volume and of rich quality. Many were
enormously proud of their achievements, successes and progress.
For healthcare professionals, their successes and achievements have often been ground-breaking,
helping to extend survivorship rates and reduce treatment and recovery time.
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For patients some of their successes were what the general public would see as very basic and
trivial; but for a Head and Neck Cancer patient learning to swallow again, learning to eat again and
say thank you to their carers are massive steps.
The full set of responses to the questions posed are reproduced at Annex E
Video Highlights
A three minute video, produced by Red Dot Digital, containing highlights of the 2017 conference and
the 2018 conference announcement is available here.
The ‘H&N Conf 2017’ speaker highlights video, lasting less than 10 minutes is available here.
Audience Feedback
We asked that those attending the conference, whether they were sponsors, exhibitors, patients,
carers or volunteers, provide feedback, to help us evaluate the conference. Focusing on what went
well, which we may wish to keep; and what can be improved, that we will look at for future
improvement.
A good deal of the feedback came from email testimonials. We received more limited response
rates to the short electronic surveys sent in the days following the event. In some instances we
know that was caused by security firewalls within the NHS system. We also believe the absence of
responses to the patient and carers’ survey may be due to lack of digital skills amongst our target
audience. This is something we will consider for future conferences, providing different options for
completion, yet also ensuring the audience has the opportunity to build up their digital skills, so they
are confident of being able to access online support for their needs.
What Went Well
Don’t take our word how good this was. Here are the thoughts of some of our visitors, including
some of their specific testimonials and some of the common themes.
We have received many, many communications since the conference.
“It was an informative and inspiring conference, aimed at creating more holistic and
multidisciplinary care and services for patients, survivors, and their carers.”
Miryah Morris, Global Manager
Bristol-Myers Squibb
So, what did go well
VIP Visits to Blackpool Victoria and Royal Preston Hospitals, including the Rosemere Cancer
Centre;
The galaxy of speakers assembled was phenomenal;
The very interesting and incredibly well put together content;
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Putting the patients and carers where they should be “in the middle of their care”;
The continuity into next year’s annual conference in Nottingham;
The opportunity to connect, for example:
o
o
o
To help set up additional support mechanisms. Already post conference work has been
done to help initiate support groups in Milton Keynes;
To consider future uses of motion pillows in areas other than radiotherapy;
To ask questions about where future funding might be available to support current and
future innovations.
Providing opportunities for medical research students to connect with a wide range of health
professionals, patients, carers and wider networks;
The opportunity for exhibitors to test the water at these conferences and develop the thoughts
about whether exhibiting adds value for their business. Some have already expressed an
interest in exhibiting at the 2018 national conference;
The exposure of the conference to European audiences, for example initiating discussions for a
full plan for Spain.
“It was such a great pleasure and honour to speak at #HNCCONF2017. You, Sharon and the rest of
your team must be commended for your tireless and selfless work to make it a big success. It was a
privilege to meet other Head & Neck cancer patients, such as Norman, who continue to, heroically,
carry on despite enormous physical difficulties”.
Sajjad Iqbal, USA Speaker and cancer survivor
“Wasn’t it wonderful! The room was full of #Inspiration #Strength #Dedication & #Love
Remarkable human beings #HNCCONF2017”
https://twitter.com/BlairPapworth
What Could Be Improved
Observations from visitors included:
There was a disappointing lack of engagement from healthcare professionals about what
physiotherapy can do (for cancer patients);
There were insufficient opportunities for exhibitors to engage with the audience and there
needs to be improved lunch arrangements to allow exhibitors more time with audiences;
There needs to be more local expertise and innovation particularly from the Cancer Centre and
local universities;
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Timing/scheduling on the second day could have been improved so that speakers were not
removed from agenda;
Consider a nutritionist or cooking expert for next year;
A need to include new, innovative treatments (and/or classes of therapies) for head and neck
cancer;
Include in future an oncologist’s talk to bring us up to date on the latest cancer treatments;
Include a facial plastic surgeon to talk about the reconstructive and restorative surgeries;
There wasn’t enough time for Questions and Answers during some individual sessions;
Breaks are very important for socialising and it felt they weren't relaxed enough. Maybe finish
earlier? Include Questions and Answers for each speaker, even if only one question?
Wider impact outside the conference room
Local radio
A series of four radio clips were broadcast by local station Radio Wave 96.5 during the conference,
including interviews with Chris Curtis and Arthur Lauretano. These mainly focused on Health
Professionals needing to walk the shoes of Head and Neck Cancer patients (see section on Quality of
Life Challenges) and on the policy issue of vaccinating against the HPV virus in both boys and girls.
Although it is not possible to estimate how many listeners heard one or more of the broadcasts,
Radio Wave 96.5’s latest published audience figures are 56,000 listeners per week, listening for an
average of 7.2 hours each. (Source media.info – Survey period November 2016 to September 2017).
Listen to “An Introduction to the Conference”
Listen to “Arthur Lauretano’s views”
Listen to “Chris Curtis – Health Professionals need to walk patients’ shoes”
Listen to “Arthur Lauretano – vaccinating against the HPV virus”
Short Film
Derby University Students came to the conference to speak about their research into Human
Papilloma Virus (HPV) and their short film aimed at raising awareness was launched at the
conference and can be viewed on YouTube.
Social Media
Throughout the conference visitors and other audiences were encouraged to use Twitter extensively
to help engage worldwide audiences in the conference activity. Using the Twitter hashtag
#HNCConf2017 we achieved a social media reach of over one million.
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We engaged with expanded audiences, including throughout the UK, and in the United States,
Europe, South Africa, India, Australia and New Zealand.
Photography
Our professional photographer Peter Jefferson has produced a portfolio of over 800 images from the
conference, which can be viewed here.
How the conference can influence policy and change
As a consequence of holding the conference in the local area, Paul Maynard, MP for Blackpool North
and Cleveleys visited. He engaged with Chris Curtis, conference organiser and Jo Ashton, Clinical
Nurse Specialist at Blackpool Teaching Hospitals, in particular focusing on the debate about HPV
Vaccination.
Subsequent to the conference Paul has agreed to write to the Health Minister to raise awareness of
the issue and to seek a discussion between Government and Head and Neck Cancer advocates.
Plans for a European Head and Neck Cancer Foundation
We believe the 2016 and 2017 conferences have started an important conversation, gaining traction
and support for a European collaboration for Head and Neck patients, carers, health professionals
and organisations to ensure the best possible treatment, care and support for those affected by
Head and Neck Cancer across Europe.
The European Head and Neck Cancer Voice Foundation would be developed aligned to a range of
themes including:
1. Awareness
2. Early Diagnosis
3. The Cancer Journey (Pathway)
4. Side Effects
5. Survivorship ‘Living with and beyond Head and Neck Cancer’
6. Quality of Life
7. ‘No one should be alone’
8. Improving and accessible services for carers
9. Research & Science
10. Access to Medicines and Treatment for all
11. Patient Advocacy awareness, knowledge & training
Head and Neck Cancers are approximately 6% of diagnosed cancers worldwide. There are several
organisations in different countries working to support those people affected by Head and Neck
Cancers. However, there is not a single European or Global organisation enhancing collaboration for
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the points noted above. Utilising the great energy, goodwill and desire of a wide network of people
it is our ambition to put that right.
Ultimate goals include delivering an active head and neck cancer support service in every European
country and networked support services through an organisational hub.
Our Current Milestones
To maintain and increase the momentum developed from the conferences in Liverpool and
Blackpool so far, our plans for 2018 include:
In January 2018 presenting this conference review at the Lancashire and Cumbria NHS Trust
Conference
By April 2018 having the bases in place for a pan-European and global support Foundation,
including the target social outcomes and the services that support these.
By June 2018 attracting Funding for the Foundation, including from sponsor organisations and
from health and wellbeing related funding streams
In November 2018 delivering the national conference in Nottingham “Understanding Your Head
and Neck Cancer Journey”
Delivering other supporting regional conferences during the year, including in Scotland and
South West England
In 2019 taking our conference experiences to Europe
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Annex A
Timed Agendas
Timed Agenda
Day One – 7 th November
Day 1 (Health Professionals Only)
Morning
08.45 09.45 Conference Room and Exhibition open
Registration, Refreshments and Networking
09.45 10.00 Conference Welcome
Chris Curtis (Conference Organiser)
Head & Neck Cancer Survivor and World H&N Ambassador
Ajay Nigam (Conference President)
H&N Surgeon
10.00
10.30
10.45
11.15
11.30
12.00
12.30
Afternoon
10:30
10.45
11.15
11.30
12.00
12.30
13.15
Arthur Lauretano (USA)
Medical Director at Lowell Cancer Centre, H&N Surgeon
Phil Parramore
Business Advisor and H&N Cancer Volunteer
Dr K Vasudev
Histopathologist Rtd
Break
Claire Burke (USA)
Oncology Nurse
Sajjad Iqbal (USA)
Rare Cancer Patient Survivor
Lunch & Networking Opportunity
Exhibition Halls open throughout lunch
13.15
14.00
Julie McCrossin (Australia) H&N Survivor
International patient speaker
14.00
14:30
Jo Patterson
Honorary Senior Clinical Lecturer & Speech & Language Therapist in
ENT
14:30
15.00
Quality of Life Challenges
15.00
15.30
Networking and Exhibition (Refreshments)
15.30
16.00
16.00
16.30
Chris Lewis (UK)
Long term cancer survivor
Dr Gillian Knight and Students from Derby University
HPV Education Film launch
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16.30
17.00
Naseem Ghazali (UK)
Robotic Surgeon
17.00
17.30
Dr Jiri Kubes, (Prague)
PhD, Medical Director Pencil Beam Scanning (PBS)
17.30
17.45
Q&A Session
Hosted by Chris Curtis and Ajay Nigam
Speakers will be invited to join
17.45
18.00
Networking and Exhibition Hall
7.30pm for 8pm
Speakers Dinner
The Village Hotel
Inspirational Room
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Annex A
Timed Agendas
Timed Agenda
Day Two – 8 th November
Day 2 (Patients, Carers, Volunteers and Support Groups only)
Morning
09.00 09.45 Exhibition Open
Registration, Networking and Refreshments
09.45 10.00 Conference Welcome
Chris Curtis (Conference Organiser)
Head & Neck Cancer Survivor and World H&N Ambassador
Ajay Nigam (Conference President)
H&N Surgeon
10:00
10.30
10.45
11.15
11.30
11.50
12.20
12.50
10:30
10.45
11.15
11.30
11.50
12.20
12.50
13.45
Arthur Lauretano (USA)
Medical Director at Lowell Cancer Centre, H&N Surgeon
Phil Parramore
Business Advisor and H&N Cancer Volunteer
Dr K Vasudev
Histopathologist Rtd
Break
Dr Gillian Knight and Students from Derby University
HPV Education Film launch
Claire Burke (USA)
Oncology Nurse
Sajjad Iqbal (USA)
Rare Cancer Patient Survivor
Lunch & Networking Opportunity
Exhibition Halls open throughout lunch
Afternoon
13.45
13.50
Presentation of Donation to The Swallows Charity
13.50
14:40
or
14.50
14.30
15:10
No planned end time
Julie McCrossin (Australia) H&N Survivor
International patient speaker
Jo Patterson
Honorary Senior Clinical Lecturer & Speech & Language Therapist in
ENT
Dr Rob Hicks (TV Doctor) & Dawn Maher (Blackpool Carers)
The Role of Carers (breakout session)
Sponsored by Beaverbrooks Jewellers
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15:10
15:40
Networking and Exhibition (Refreshments)
15.40
16.10
16:40
17.10
17.40
16.10
16.40
17.10
17.40
18.00
Dr Alex Mitchell (UK)
Honorary Senior Lecturer in psycho-oncology of liaison psychiatry
Chris Lewis (UK)
Long term cancer survivor
Naseem Ghazali (UK)
Robotic Surgeon
Q&A Session
Hosted by Chris Curtis and Ajay Nigam
Speakers will be invited to join
Networking and Exhibition Hall
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Annex B
Quality of Life Challenges
Head and Neck Cancer patients smell things differently to other people.
Head and Neck Cancer have a range of difficulties in eating and swallowing and often choose to eat
alone to avoid embarrassment in company dining.
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The killing of saliva glands in surgery means experiencing Dry Mouth is common to Head and Neck
Cancer patients. This is similar to trying to eat a mouth full of cream crackers.
Liquid food is commonplace, often the only thing that can be eaten soon after surgery and high in
protein and calories
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Seasonings and spices are to be avoided, but this can make food taste bland
Regular dental screening helps identify whether you are at risk of Head and Neck Cancers developing
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Annex C
Summary of Carers’ Session held on Day Two
Question
1. What challenges do you face when
looking after someone?
2. What would make your caring role
easier?
3. What can services do to help, what
changes would you like to see?
Responses
Fitting it in - i.e. time
Own health both physical and emotional
Priority
Information - lack of understanding/training
Personal Wellbeing - Not looking after
self/getting breaks
‘Juggling Act’- Different roles; mother,
daughter, carer, employee
Patients need change ‘up and down’
Struggling to open up - a chance to speak to
other carers would be good
Depended on/ relied on
Group support/chat
More communication from GP Surgeries -
regarding carers. This could be through screens
in surgeries or via PPG
More info available
More volunteers to help raise awareness in GP
surgeries
Sharing ‘best practice’ across services and
different carers
More info at bus stops/in supermarkets
FY1 Directory and other info
DWP - Awareness of carers - more joined up
work between health-related benefits and
social related benefits
4. Which of the following feelings (slides
of these were provided) have you
experienced?
1.Pride-2
2. Guilt (helpless or angry)-3
3.Fulfilment -1
4. Resentment-4
5. Fit Health-0
6. Unhealthy-7
7. Energised- 0
8.Exhausted- 9
9. Happy- 2
10. Sad- 8
11. Obligation- 8
Other suggested feelings:
12. Frustration
13. Angry
14. Uneducated
15. Unprepared
16. Learning on job
17. Alone
18. Courage and inner strength
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Annex D
Conference Supporters
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Annex E
Quality of Life Wall Capture
Health Professionals were asked:
Question 1 “What are your greatest achievements supporting patients and carers with their
quality of life?”
Here’s what they said:
Supporting teams across
centres to ensure
smooth handover and
transfer of care between
two MDTs / hospitals
Improving information,
advice and support for
people affected by Head
and Neck Cancer
through the MacMillan
information centre and
health and wellbeing
events
Always being there at
the end of a phone
Supporting patients who
have no next of kin or friends
/ family their treatment and
recovery
Listening
Being there to talk to
whenever needed
Support
Product advice, provide good
quality products to nurses /
laryngectomy patients
Sharing their experience Education Empowerment Funding initiative to advance
Head and Neck surgery for
patients in Lancashire and
South Cumbria (written by
Rosemere Cancer
Foundation)
Effective symptom
management for dry
mouth and receiving
positive feedback from
the patients
Supporting patients with
quality of life and
nutrition
Supporting patients to
get back to work and
discharge at five years
Helping Laryngectomy
patients learn to voice
Working with Your
Cancer Journey (Chris
Curtis) – developing
website for knowledge
Signposting patients to
appropriate services
after acute episodes of
care
Compassion, listening,
empathy, offering
support
Showing I care and listening
well.
Giving time and comfort
Building relationships
with patients / carers.
Some I will never forget
Patients with Head and
Neck Cancer literally
lose communication
overnight. Actually
sitting down and
teaching them to
communicate again is
an achievement in itself
Enable them to fulfil a
meaningful life. Feel a
valued member of their
family
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We created a Head and
Neck Cancer support
website
www.nottshncs.nhs.uk
(written by @nottshncs)
Providing regular follow
ups and giving
reassurance
Introduce valve speech
to Blackpool Hospital in
1996
Education about swallowing
and taking patients lead for
rehabilitation
Gaining insight of patient
experience; of comfort
during radiotherapy
treatment
Being able to assess
efficiently so I am able
to help and support as
best I can and, if not,
refer on – and seeing
them coming back for
the next fixed review
Positive thinking and
happy patients
Supporting Laryngectomy
patients to change their own
speaking valves at home.
Managing to have a
family Christmas Dinner
together
Helping patients to be
safely discharged with a
Laryngectomy
The honour of caring for
and supporting (as
much as is possible) my
wonderful mum who
had a brain tumour
Facilitating choice
Giving back
independence
Allowing someone that
first cup of tea
25 years of nursing this
group of patients
Helping survivors come to
term with long term
difficulties with eating, while
encouraging progress and
helping them enjoy food
again as much as possible
Supported both patients
and family through the
treatment, by listening
and being empathetic
Encouraging someone
to consider trying a
speech valve
Supporting patient not
wanting treatment after
he had all information
Respite and memories for
patients and carers
Setting up The Swallows
Setting up an award
winning
(Nottinghamshire) late
effects service for
MacMillan that helps
H&N patients tell their
story and give them the
ability and tools to carry
on
Post treatment support
clinic
Ward based support for staff
and patients
Quality of life screening
Aided in good postoperative
care to
ensure timely discharge
home
Setting up a combined
AHP post treatment and
survivorship clinic
- Radiotherapy
- SALT
- Dietetics
Practical support
Page 29 of 43

Delighted to have been
able to help Chris and
The Swallows with the
imminent! International
survey of patient
experience of dry mouth
Running Swallows
patients and carers
meetings
Providing a place to go
when in need of a
holiday or break
Being there to listen and
support
Setting up our
multidisciplinary centre
Increasing awareness
of the treatment options
available to improve
Quality of Life
Listen and ask what’s
wanted/ needed and
then be a dynamic,
tenacious, loyal, honest,
open professional
prepared to talk
Encouraging someone to eat
out socially after 9 years
isolation
In last six months I have
set up a MDT clinic –
seeing patients pre / mid
/ post treatment. Patient
feedback has been
excellent. Bonus of skill
sharing
Establishing multidisciplinary
clinics to
reduce gastrostomy
placement times
significantly. Improved
swallowing = improved
quality of life.
Teamwork /
communication
Staff training
- Team talks
- Raising awareness
Raising the profile in
toxicity management to
improve quality of life
Working towards a
patient centric
commissioned pathway
Diagnosing Head and
Neck Cancer as a
pathologist
Providing education and
healthcare professionals
about the long term effects of
Xerostomia
Interviewing 60+ patients
Organising two patient
events
Being able to provide
communication via
mobile SIM Cards
bespoke to people living
with Head and Neck
Cancer
Launching our charity,
SIMPAL. We provide free
calls, texts, data and mobiles
to those living with cancer
I have set up an annual
Christmas Dinner with a
difference, for patients
with swallowing
difficulties in a supportive
environment. For many
it’s the first time they
have eaten out since
completing treatment
Providing emotional
support
Developing and getting
approval in the UK for a
new type of therapy for
Head & Neck cancer
patients
Providing nutrition via
feeding tubes
Page 30 of 43

Health Professionals were asked:
Question 2
What are you working on now?
Here’s what they said:
Access and
information to
appropriate support
(raising awareness of
the condition and
services)
Working towards a
local valve clinic
Better communication
Health promotion
awareness
Education of dental
nurses in order for
them to widen the net
of diagnosis
Raising awareness
there is support
To provide more
support in more health
professionals, etc.
more hours to gain a
better patient journey
locally
Talking to
commissioners about
increased funding
A motion capture
pillow aiming to
replace thermoplastic
masks when dosing
radiotherapy and
beyond
Helping improve
surgical training with
simulation.
Ensure patients who
are on five year
surveillance post
treatment continue to
receive appropriate
support
Project on targeting
screening for Head and
Neck Cancer patients in
areas of Blackpool with
lower socioeconomic
status
Patient support group
The relicensing of
support drugs to
improve toxicity
management in
cancer care
More support for
carers
Bringing health
professionals from all
over the world to share
information (data) to
impact research and
quality of life
General tracheostomy
care
Improving patient care
on the wards for head
and neck patients
Robotic surgery
Reduction of XRT
dosage
Patient experience of
spirituality, especially
in end of life care
Introduce screening
for Head and Neck
Cancer in Lancashire
and South Cumbria
Recognising Quality of
Life and its importance
by education
Working on improving
discharges for Head
and Neck Cancer
patients from hospital
Proton radiotherapy
New product
development from
patient feedback
Making people aware
of the role of
pathologists in
management of Head
and Neck Cancer
Future
Steering group for
national Head and Neck
Cancer Oncology
meeting to discuss and
inform UK clinical
practice
Page 31 of 43

Patient led reviews -
survivorship
Publicity of late effects
service and teaching
our models to other
hospitals
Screening tools for
late effects /
consequences of
treatment
Annual survivorship site
special events
Remodelling the Head
and Neck Cancer
service in Nottingham
Supporting Blackpool
Carers Centre to help
anyone caring for
someone with Head
and Neck Cancer
Bringing the latest
robotic surgical
equipment to the
North West (written by
Rosemere Cancer
Foundation)
Setting up a local
support group for Head
and Neck Cancer
Patients
Using E-HNA to
ensure patients needs
are met
Ensuring people are
aware of support
available – getting out
into communities
Holistic needs
assessments and
treatment summaries
for people affected by
Head and Neck
Cancer
Working very hard on a
business case for more
SLT / Follow up clinics
for equity of service
within the region
(Fingers crossed!)
Here today!
Re-licence of drugs in
the UK to help quality
of life
Developing FEES
service for swallowing
investigation/ therapy
post treatment
Holistic Needs
Assessment
Quiet Room
completed
Buddy System
Improving facilities to
encourage people to
feel that they can
socialise again
Improving facilities,
service and funding
Psychological
assessment and
support for all patients
Physical activity
programme
Living with and
beyond cancer
initiatives. Providing
One Stop clinics for
speed of diagnosis
We are setting up a
Head and Neck Cancer
choir for all survivors
including
Laryngectomees.
These sessions focus
on breath support in a
fun and sociable setting
Charity growth – new
partnerships,
investment, growth in
general, national
fundraising campaign
Immuno-Oncology
treatments
Access to innovative
medicines
Reduce social isolation
and financial pressures
through Your SIMPAL
Improving the Quality
of Care
Creating a Charity
Developing a new
form of
Immunotherapy for
Head and Neck
patients that has fewer
side effects than
current therapies
Hub and spoke model
More screening in
primary care
A bespoke living and
Cancer Head and
Neck Programme
Establishing nonmedical
follow-up for
years 3/4/5 post
treatment
(survivorship clinic)
Reducing patients and
healthcare delay
Page 32 of 43

To get more involved
with Head and Neck
Cancer Support Group
to provide support and
care of patients in
need
Treatment / SLT
support for
radiotherapy patients
Better treatments
Reducing smoking
Health promotion Survivorship clinics New ways of MDT
working
Outreach airways Nse
Post.
Working in
collaboration!! Call to
achieve patient centric
care
Page 33 of 43

Health Professionals were asked:
Question 3
What would you like to see if you had an open cheque book?
Here’s what they said:
More therapy staff More staff in team Ability to set up
different types of
support groups
More time
More staff
Improved facilities for
all
Improve counselling
patients after major
surgeries
Increased access to
good quality services
across the UK for all
Head and Neck
Cancer patients
Equity
One stop neck lump /
CT scanning in same
appointment
More support for those
with Head and Neck
Cancer
Screening and
vaccination in Primary
Care
More support in the
community
More specialist units
for Head and Neck
Cancer
Unrestricted access to
new, better tolerated
treatments for Head
and Neck Cancer
patients
More education and
money spent on
prevention
Earlier diagnosis of
Head and Neck
Cancer
Easy and free of
charge access to the
best treatment
available
Better financial support Improved
psychological support
To pay for all people to
enjoy a holiday at our
hotel
All patients would
receive top quality
care before during and
after treatment for
Head and Neck
Cancer
Robotic surgery
HPV Vaccination for
boys
New Laser Machine
More NBI endoscopes Staff in hospital Health equality for all –
equal access to
healthcare
New robot
Completely funded
nutritional and dental
support
Head and Neck
Research
Being able to run the
“HOPE” MacMillan
Course more often
Psychological support
services!
Page 34 of 43

A cheque for the gift of
good health
Access to therapies
and drugs with clinical
relevance to help cure
cancer or prevent it
The best care for all
patients, no matter
where they live / what
they can afford
Better , quicker access
for patient access to
treatments
Disease free HPV Vaccine for boys Fully functioning local
Head and Neck
Cancer team – that coworks
effectively with
primary treatment
centre
Elimination of cancer
More clinic rooms so
we can see more
patients
Services at local
hospital leading to
major Head and Neck
operations
Davina Robot
Modern wards with
internet and relaxing
areas for patients
Head and Neck
Cancer screening for
children and all adults
Greater emphasis on
preventative
management of Head
and Neck Cancer
Better screening in
targeted areas to
increase the detection
of earlier, less
advanced cancers
Holistic support for
Head and Neck
patients
Make Head and Neck
Cancer a leader in
healthcare
HPV screening and
vaccination of young
people
More volunteer 24/7
support for patients +
CNS
More theatre capacity
and unlimited
equipment
A designated team to
include dietician,
speech and language
therapist, solely
focusing on Head and
Neck Cancer patient
care
Purpose built Head
and Neck Cancer
centre with all
services and support
in one area
Centralised centre with
all professionals
together
HPV Vaccination for
boys
A larger network
- Dieticians
- SALT
- CNS
- Oncologists
- Everything
please
-
All testing treatment
offered available
Free respite care for
patients and family
Rapid treatment
HPV vaccine for all!!
New technology used
to prevent cancer
Support services for all
patients
Multidisciplinary care
for all patients
Investment in
communities and
support groups
Vertical XRT
treatment room so
patients will have less
problems with
secretions (than lying
flat)
Free dental care for
Head and Neck
patients following
treatment
Specialised treatment
nearer to home for all
patients
Page 35 of 43

Research into surgical
treatment for those
with Xerostomia
Free dental treatment
for Head and Neck
Patients
Awareness and
investing in
communities
Cure for Xerostomia
Surgery –DXT /
chemo, etc.
More support More time Awareness,
collaboration,
communities working
together on many
levels
All boys to have HPV
injection
More Multi-Disciplinary
Teams
More Physiotherapy
Ask the person/ their
relatives what they
need
Endless product trials
and availability
More equipment More staff More education
More help for patients
Unlimited budget for
communication aids
A complete MDT pre
and post treatment
clinic
Funding for research
into methodologies for
research quality, in self
report patient
experience, not only
big pharma trials
Teaching /
encouraging juniors to
apply to ENT / H&N as
the future generation
TNFLO – improve
patient flow /
diagnostics
Page 36 of 43

Patients and Carers were asked:
Question 1
What are your successes / achievements that are helping you improve
your quality of life?
Here’s what they said:
Good health
Recognising the value
and importance of
family support
Set up Head and Neck
Cancer Support Group
(written by GR)
Having had 4 different
cancers, my
achievement are still
being here
Support from family
and friends
My great family and
surviving cancer
against all the odds
(written by Sajjad
Iqbal)
Good health
Restarting my career
after losing my
husband
Support from family
and friends
Accepting the situation Surviving 17 years so
far
Resilience – having
had to relocate twice in
2 years during
treatment and coping
just! (written by Sue)
Trying to stay positive
Not forgetting that my
loved one is who they
were BEFORE their
cancer. Remember
that and the
relationship returned
as it was
Looking after myself
so I can care for others
Mental support of the
family member
Optimism Can now swallow Allowing time and
listening
Making time for
yourself and others
My family
Do less to achieve
more
Understanding the
disease
Family support and
working together
Practicing mindfulness Hands free after 18
months (written by
Alex)
Seeing more of my
patients cured and
functional
Creating links between
support groups in
Fylde, Wyre and
Blackpool
Page 37 of 43

Do not look back if you
can
Do a lot of travelling in
Summer around The
Lakes
Now retired, I’m
getting and hope
giving, great fun
volunteering (written
by Peter Moore)
Survived 21 years
(written by Duncan
Waddington)
Working Fantastic patients Listening to patients
and facilitating change
I got back into exercise
and sport (written by
Mark)
I started The Swallows
Support Group in
Jan.2010 (written by
Wendy Hepworth)
Learning to swallow
again (sort of!) and
have my feeding tube
out.
Work / life balance
Being understanding
Support patients
Compassion for
families
Page 38 of 43

Patients and Carers were asked:
Question 2
What further support is required to further improve your quality of life?
Here’s what they said:
My wife gives me all
the support I need,
and I have a full life
(written by Alex)
Knowing there is
support always
available
Carers Support Group
Continuing support
groups with ongoing
information (written by
Lynne Webster)
More help with dry
mouth to improve my
sleeping
More treatment re:
teeth. Due to dry
mouth and teeth
breaking and loosing
teeth
Decentralisation of
care, so patients don’t
have to travel so much
to get care
Full family support
Full financial support
Accessing support
groups and
understanding within a
new location with
regard to living post
treatment (written by
Sue)
More support on
eating after treatment
Revitalise saliva
glands!
Further expansion of
MDT collaborative
care
Feeling that care is
more joined up
More help for carers
Time
Need therapy to
overcome granulation /
migration of valve
(written by GR)
Education of medical /
dental staff to educate
patients and give them
tools to improve quality
of life
Relationship
counselling
Improved GP support
during cancer
treatment
More physio,
Occupational Therapy,
SALT, Support
Groups.
Professionals need to
listen
Someone to talk things
through with (written
by Mark)
We all need support
down the line (written
by Duncan
Waddington)
Recovered well –
continue enjoying life
Continual check ups
Additional support
should include a more
joined up (multidisciplinary)
approach
Lymphedema
recognition and
support
Page 39 of 43

Try to be independent
Continuation of
support
More joined up of
professionals
treatment
Dietician support
Better links between
health care and home
Regular local group
events
Easy access to
psychological therapist
Physical therapies like
massage, physio,
osteopathy, etc.
Continued support
More frequent Head
and Neck Cancer
Support meetings
Timely information –
post op and post
radiotherapy (written
by Peter Moore)
More awareness of
Head and Neck
Cancer; funding for
research; help for
carers (written by
Dr.Sajjad Iqbal)
Learning from each
other
Speaking to some
people who have
same issues /
challenges (HCP)
Page 40 of 43

Patients and Carers were asked:
Question 3
Who would you like to thank for improving your cancer journey?
Here’s what they said:
Initial GP Dr.Bob Phillips (2) Karen Dykes NHS (2)
Jo Ashton (4)
Nurses at the hospital,
providing support to
patients, family and
new staff
Head and Neck Team
at Blackpool. Jo and
Beth have been
marvellous
With my other cancers
I cannot thank enough
my district nurses who
have helped me. In
fact all the staff have
been really good and
caring
GP for early diagnosis Royal Preston Team St.Catherine’s
Palliative Care
The lay member and
chair of the Patient,
Public Engagement
Group of Fylde and
Wyre CCG
My wife (2)
Mr.Nigam, who saved
my life
Mr.Nigam, for all he
has done for me
Jo, Donna and Beth at
Blackpool
MacMillan
My wife, my children,
my friends, my
doctors, Chris Curtis
(written by Dr.Sajjad
Iqbal)
Our amazing patients
who are sharing during
change!! (HCP)
Nursing staff who
provided extra care –
those who went the
extra mile
The continuing support
from within and
outside the Health
Service during times of
financial pressure
Victoria Hospital ENT
Dept. Joanne,
Mr.NIgam
All the nurses in
cancer unit, who have
a hard job
The surgeon who
saved my daughter’s
life
Specialist Nurse Consultant Nurses Carers
The continuing support
from within and
outside the Health
Service during times of
financial pressure
Victoria Hospital ENT
Dept. Joanne,
Mr.NIgam
All the nurses in
cancer unit, who have
a hard job
The surgeon who
saved my daughter’s
life
Page 41 of 43

Alder Hey Children’s
Hospital
NHS Breast Care Nurse Receptionist
Ronald McDonald
House
Connor Maluchi
Mr.May
Surgeons (written by
Lynne Webster)
Psychotherapist
Doctors and nurses
NHS
Oncologist, Faz
MacMillan Nurse
Margaret Doyle
All the team that
operated on me
Surgeon Nursing Staff Support Group
Swallows
Friends (2) Nurses (Clatterbridge) All the nurses in
cancer unit, who have
a hard job
The surgeon who
saved my daughter’s
life
Head and Neck
Nurses
Surgeon / Oncologist
(2)
Parents
Partner
The medical team The whole family The specialist H&N
MacMillan Nurse
Kindred Spirit
Fellow patients, NHS
for existing
(written by Peter
Moore)
Family (2)
Neighbours (for not
prying but knowing to
“keep an eye out”
when family couldn’t
be there)
Head and Neck
Cancer Support Team
Preston Hospital
Chris and Sharon
Curtis / Swallows
5 th year medical
student who
recognised I was in
cardiac arrest in A&E
on 10/11/15, 4 months
after treatment
My patients from
whom I have learned
so much
The support group
(ongoing)
Page 42 of 43

Local Clinical Staff SLT MacMillan Trinity Hospice in The
Fylde
CNS Specialist
Nursing staff at the
providing hospital
My friend Trish
For convincing
Jo Ashton and all her
support staff (written
by Marilyn Ryde)
Me to work in
Oncology
Kevyan Chris As a physio, it’s
amazing when
someone comes in,
looks me in the eye
and asks how I am.
Thankyou Chris and
Chris.
Now we move on to 2018…. Follow on Twitter #HNCCONF2018
Next years conference will be held in Nottingham on the 6 th & 7 th November 2018.
If you would like to pre-order your conference guide, email chris@ccconsultancy.uk.com this is due
to be distributed in January 2018.
Delegates are pre-registering now, so reserve your tickets ASAP as we are limited to only 200 seats
on both days.
Sponsors/exhibitors are limited and with companies booking now, places are filling quick – don’t
miss this opportunity to be in front of Health Professionals on day one and patients/carers on day
two.
For further information on booking delegate tickets or sponsorship please contact:
Sharon Curtis
Email; sharon@ccconsultancy.uk.com
Telephone
Office; +44 1253 344 091
Mobile; +44 7572 493 874
Page 43 of 43