2017 Conference Review Report final

printloft

#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

Page 3 of 43


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

Page 25 of 43


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

Page 27 of 43


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

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