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#HNCCONF<strong>2017</strong><br />

November <strong>2017</strong><br />

Chris Curtis<br />

WORLD H&N CANCER AMBASSADOR


Head and Neck Cancer <strong>Conference</strong> <strong>2017</strong> <strong>Review</strong><br />

THE CONFERENCE<br />

Head & Neck Cancer five-year survivorship in the UK is currently on the increase and this is<br />

fantastic news. Health Professionals, aided by new drugs, technology, and awareness projects,<br />

help continue this trend.<br />

However, we must not get complacent about the great work being carried out in the UK, but<br />

must continue to strive to increase the five year survivorship rate by learning from other<br />

countries, and collaborate as patients, survivors, carers, health professionals, drug companies<br />

and stakeholders in sharing ideas.<br />

Future Directions<br />

Our belief and ambitions are that Head & Neck Patients, Carers, Health Professional Teams and<br />

organisations would benefit from a European and ultimately global wide support organisation,<br />

and it is now our intention to drive that strategy forwards at pace.<br />

The main purpose would be to connect Head and Neck Cancer patients/ carers and agencies<br />

from around Europe under one umbrella. Such a European Foundation would be a hub of<br />

creating awareness of the disease, information, support, and networking of European<br />

connections all with the same aim:<br />

“With early diagnosis of Head and Neck Cancer, help eliminate the link with end of life, create<br />

high quality outcomes in the recovery and survivorship, and improve quality of life”<br />

<strong>Conference</strong>s such as is reported on in this review help us to gain reputation and traction to<br />

deliver on our European-wide and then global ambitions.<br />

The Head and Neck Cancer <strong>Conference</strong> <strong>2017</strong> offered an invaluable opportunity for patients,<br />

carers, health professionals, voluntary organisations, and other key stakeholders to discuss the<br />

issues of retaining and improving ‘Quality of Life,’ and how the latest services and treatments<br />

and developing innovations can transform Head & Neck Cancer Quality of Life experiences<br />

during and beyond five year Survivorship.<br />

Page 1 of 43


WELCOME TO OUR <strong>2017</strong> CONFERENCE REVIEW REPORT<br />

“Living With & Beyond Cancer”<br />

After a very successful one day conference for patients and carers held in November 2016, in<br />

Liverpool, The Head & Neck Cancer <strong>Conference</strong> moved to Blackpool this year. We organised, for<br />

7 th and 8 th November <strong>2017</strong>, a two-day conference that brought together Health Professionals on<br />

the first day and Patients and Carers on Day Two.<br />

As our testimonials reproduced later in this report evidence, the<br />

Head and Neck Cancer <strong>Conference</strong> <strong>2017</strong> was an inspiring and<br />

memorable experience for delegates, exhibitors, speakers and<br />

supporters alike.<br />

The conference posed questions about Awareness, Support and<br />

Knowledge and the challenges of five year survivorship. Inspired and attended by leading<br />

national and international thinkers, the conference explored how, by introducing greater passion<br />

and understanding into the system, patients, carers and the people who work with them, make<br />

informed choices, continue learning and aspire to world-class performance.<br />

At a time when Health Professionals are under ever more severe pressures, the conference<br />

examined opportunities for everyone involved to help improve the Quality of Life. We explored<br />

potential ways of enabling all of us to think differently about how we learn and what we can<br />

achieve.<br />

The programme delivered an exciting mix of keynote speakers, exhibitions and fringe activities<br />

themed around the strands of Awareness, Support and Knowledge, and invited delegates to<br />

Think Differently as a result. Speakers were invited either to build their presentation around this<br />

triple-pronged approach or to concentrate on one aspect. Anecdotal and personal experience<br />

sharing were encouraged. Wherever possible, speakers were grouped to explore counter or<br />

complementary positions within a strand to further engage the audience. The participation and<br />

engagement of patients and carers in all aspects formed an integral part of the conference.<br />

Prevalence of Head and Neck Cancers<br />

Cancers that start in the head and neck area (for example, the tongue, the nose or the ear) are<br />

often grouped together under a general heading of head and neck cancer.<br />

Most head and neck cancers are squamous cell cancers. Squamous cell head and neck cancers<br />

don't usually spread to other body organs. But they can spread to lymph nodes (also called<br />

lymph glands) in the neck.<br />

Sometimes, the first sign of cancer that a person notices is a swollen (enlarged) lymph node in<br />

the neck.<br />

Some of the most common head and neck cancers include:<br />

mouth and oropharynx<br />

voice box (larynx)<br />

food pipe (oesophagus or gullet)<br />

thyroid gland<br />

Credit: Cancer Research UK<br />

Page 2 of 43


Credit: Graphic from Cancer Research UK http://www.cancerresearchuk.org/health-professional/cancerstatistics/statistics-by-cancer-type/head-and-neck-cancers/survival<br />

Credit: Graphic from Cancer Research UK http://www.cancerresearchuk.org/health-professional/cancer-<br />

statistics/statistics-by-cancer-type/oral-cancer/incidence?_ga=2.120252811.228999457.1513070991-<br />

1000849572.1513070991&_gac=1.254004796.1513070996.EAIaIQobChMI46euz5SE2AIVS5PtCh25HQd<br />

vEAAYASAAEgKvhPD_BwE<br />

Credit: Graphic from Macmillan Local Cancer Intelligence tool (England),<br />

https://lci.macmillan.org.uk/england/all/head-and-neck<br />

Page 3 of 43


Anticipated benefits<br />

Over the course of the conference, whether those attending were sponsors, speakers,<br />

exhibitors, patients, carers or organisers, we anticipated that they would gain a greater<br />

awareness of ways to improve the quality of life of patients in survivorship.<br />

This would be done by:<br />

<br />

Hearing from Inspirational Speakers, including from Australia, America, the Czech Republic<br />

and the UK. Whether they were Cancer Survivors or World-Renowned Health Professionals<br />

all would be sharing their Head & Neck cancer journey;<br />

Enhancing knowledge – learning from a room full of<br />

people, whether patients, carers or health professionals, who<br />

are passionate about making a difference and improving the<br />

Head & Neck Cancer journey... there really would be something<br />

for everyone!;<br />

<br />

<br />

Facilitating the making of connections - Networking activities provided the perfect<br />

opportunity for everyone to meet both friends old and new, strengthen existing<br />

relationships and catch up with like-minded people in a relaxed environment. For health<br />

professional organisations connecting and renewing acquaintances may also offer potential<br />

commercial opportunities;<br />

Sharing ideas - Discussion forums together with patients, carers, health professionals and<br />

companies in a unique environment, allowing all to share their own journey and see it<br />

within a broader context. The whole conference would provide all attending with<br />

opportunities to step beyond their own experiences and, for organisations, offer continued<br />

professional development.<br />

What did the delegates experience?<br />

The agenda for each day are reproduced at Annex A.<br />

On arrival delegates experienced a traditional Blackpool welcome, with Little Touches Details<br />

providing an event ticket and guest house booking service; and a candy floss cart further gave<br />

visitors that sweet seaside experience.<br />

Very keen that the conference did not promote a negative atmosphere about illness, trauma and<br />

fatalities, two clowns were on hand throughout both days to engage delegates with balloons,<br />

fun and laughter as an antidote.<br />

“Laughter is the best medicine”<br />

Hazel Roddam, University of Central Lancashire<br />

Page 4 of 43


A range of thought provoking Quality of Life Challenges were posed during networking and lunch<br />

breaks to help delegates understand some of the real-life issues that Head and Neck Cancer<br />

Patients experience daily.<br />

These challenges included:<br />

<br />

<br />

<br />

<br />

<br />

<br />

Smell Challenge<br />

Aloneathon<br />

Cream Cracker Challenge<br />

Lunch Bowl Challenge<br />

Deconstructed Lunch Bowl<br />

Oral Screening<br />

Fuller explanations of each of these challenges are included in graphical form at Annex B<br />

Also in the breaks musician and Head and Neck Cancer patient Mo McCarthy played an array of<br />

songs, with guitar and voice.<br />

“There just aren’t enough of these conferences around”<br />

Maurice McCarthy<br />

Art Students from Blackpool and Fylde College set up station for<br />

the entire two days to design their own visual representations of<br />

the conference.<br />

At the end of Day One a speaker’s evening dinner included a meal,<br />

rotating networking opportunities, a card magician and a roulette table.<br />

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For Carers attending on Day Two we introduced a session just for them.<br />

A summary of responses during the Carers’ Session is included at Annex C.<br />

During the second day of the event it became apparent that some patients would not sustain the<br />

entire day, due to ill health. The agenda was therefore shortened by approximately two hours,<br />

with agenda items from Dr Ghazali and Dr Vasudev removed from the agenda.<br />

As the delegates departed, so local MP Paul Maynard arrived for a post conference discussion<br />

with the conference organisers (see policy section for more details).<br />

Our Global Speakers<br />

We are delighted and proud about the high quality of speakers we were able to attract from<br />

across the globe.<br />

Six years Head and Neck Cancer Survivorship and now our World Head and Neck Cancer Patient<br />

Ambassador and lead conference organiser:<br />

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Our <strong>Conference</strong> President:<br />

We welcomed three expert speakers from the United States of America:<br />

Page 7 of 43


Our other International Speakers visited from Australia…..<br />

…..and the Czech Republic<br />

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And we welcomed expert academics<br />

And from Derby University our academic brought some of her research students<br />

We also welcomed a Biopsy Histopathologist…..<br />

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……an Oral and Maxillofacial surgeon…..<br />

…..and a Psycho-oncologist.<br />

We were delighted a TV Doctor could join to facilitate the Carers Support session, partnered by<br />

Blackpool Carers Centre.<br />

Page 10 of 43


And last but by no means least yet another Head and Neck Cancer survivor turned entrepreneur.<br />

Page 11 of 43


<strong>Conference</strong> exhibitors<br />

We are grateful to all our exhibitors for providing a richness of content and of course their financial<br />

and time support without which this conference would not have been possible.<br />

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Bristol-Myers Squibb<br />

Clinigen<br />

ATOS Medical<br />

Society of British Dental Nurses<br />

Severn Healthcare<br />

SpiroTect<br />

Oralieve<br />

Village Hotels<br />

Attain Digital<br />

CCMedical<br />

The Swallows Charity<br />

Beaverbrooks<br />

Royal College of Speech and Language Therapists<br />

Aspen Medical<br />

GuideDotYou Leadership Development<br />

Dental Sky Wholesaler Ltd.<br />

Insight Medical Products<br />

Lune Valley Physiotherapy<br />

Simon Goldsworthy<br />

Newcastle University<br />

Derby University<br />

Mask Art Project<br />

Your Cancer Journey<br />

Little Touches Details Club<br />

Marsden Rawsthorn Solicitors<br />

Blackpool Carers Centre<br />

Rosemere Cancer Foundation<br />

Spire Healthcare<br />

The Grove Hotel, Bournemouth<br />

SimPal<br />

Indivisual Fresh New Media and Events<br />

Proton Therapy UK Ltd.<br />

Macmillan Information<br />

Oral Screening<br />

Cancer Care<br />

Countrywide Supplies<br />

A Graphical illustration of all our supporters is included at Annex D.<br />

Page 12 of 43


Quality of Life Capture Wall<br />

On both conference days, Community Ambassador, The Swallows<br />

Volunteer and Social Entrepreneur Phil Parramore facilitated a short<br />

workshop that encouraged historical, current and future storytelling<br />

about Quality of Life. We called it the Quality of Life Capture Wall.<br />

On Day 1 Phil engaged with the Health Professional audience, encouraging them to answer three<br />

questions:<br />

1) “What are your greatest achievements supporting patients and carers with their quality of<br />

life?”<br />

2) “What are you working on now?”<br />

3) “What would you like to see if you had an open cheque book?<br />

On Day 2 Phil engaged with the Patient and Carer audience, encouraging them to answer three<br />

questions:<br />

1) “What are your successes / achievements that are helping you improve your quality of life?”<br />

2) “What further support is required to further improve your quality of life?”<br />

3) “Who would you like to thank for improving your cancer journey?”<br />

The responses to the workshop questions were both high in volume and of rich quality. Many were<br />

enormously proud of their achievements, successes and progress.<br />

For healthcare professionals, their successes and achievements have often been ground-breaking,<br />

helping to extend survivorship rates and reduce treatment and recovery time.<br />

Page 13 of 43


For patients some of their successes were what the general public would see as very basic and<br />

trivial; but for a Head and Neck Cancer patient learning to swallow again, learning to eat again and<br />

say thank you to their carers are massive steps.<br />

The full set of responses to the questions posed are reproduced at Annex E<br />

Video Highlights<br />

A three minute video, produced by Red Dot Digital, containing highlights of the <strong>2017</strong> conference and<br />

the 2018 conference announcement is available here.<br />

The ‘H&N Conf <strong>2017</strong>’ speaker highlights video, lasting less than 10 minutes is available here.<br />

Audience Feedback<br />

We asked that those attending the conference, whether they were sponsors, exhibitors, patients,<br />

carers or volunteers, provide feedback, to help us evaluate the conference. Focusing on what went<br />

well, which we may wish to keep; and what can be improved, that we will look at for future<br />

improvement.<br />

A good deal of the feedback came from email testimonials. We received more limited response<br />

rates to the short electronic surveys sent in the days following the event. In some instances we<br />

know that was caused by security firewalls within the NHS system. We also believe the absence of<br />

responses to the patient and carers’ survey may be due to lack of digital skills amongst our target<br />

audience. This is something we will consider for future conferences, providing different options for<br />

completion, yet also ensuring the audience has the opportunity to build up their digital skills, so they<br />

are confident of being able to access online support for their needs.<br />

What Went Well<br />

Don’t take our word how good this was. Here are the thoughts of some of our visitors, including<br />

some of their specific testimonials and some of the common themes.<br />

We have received many, many communications since the conference.<br />

“It was an informative and inspiring conference, aimed at creating more holistic and<br />

multidisciplinary care and services for patients, survivors, and their carers.”<br />

Miryah Morris, Global Manager<br />

Bristol-Myers Squibb<br />

So, what did go well<br />

<br />

<br />

VIP Visits to Blackpool Victoria and Royal Preston Hospitals, including the Rosemere Cancer<br />

Centre;<br />

The galaxy of speakers assembled was phenomenal;<br />

<br />

The very interesting and incredibly well put together content;<br />

Page 14 of 43


Putting the patients and carers where they should be “in the middle of their care”;<br />

The continuity into next year’s annual conference in Nottingham;<br />

The opportunity to connect, for example:<br />

o<br />

o<br />

o<br />

To help set up additional support mechanisms. Already post conference work has been<br />

done to help initiate support groups in Milton Keynes;<br />

To consider future uses of motion pillows in areas other than radiotherapy;<br />

To ask questions about where future funding might be available to support current and<br />

future innovations.<br />

<br />

<br />

<br />

Providing opportunities for medical research students to connect with a wide range of health<br />

professionals, patients, carers and wider networks;<br />

The opportunity for exhibitors to test the water at these conferences and develop the thoughts<br />

about whether exhibiting adds value for their business. Some have already expressed an<br />

interest in exhibiting at the 2018 national conference;<br />

The exposure of the conference to European audiences, for example initiating discussions for a<br />

full plan for Spain.<br />

“It was such a great pleasure and honour to speak at #HNCCONF<strong>2017</strong>. You, Sharon and the rest of<br />

your team must be commended for your tireless and selfless work to make it a big success. It was a<br />

privilege to meet other Head & Neck cancer patients, such as Norman, who continue to, heroically,<br />

carry on despite enormous physical difficulties”.<br />

Sajjad Iqbal, USA Speaker and cancer survivor<br />

“Wasn’t it wonderful! The room was full of #Inspiration #Strength #Dedication & #Love<br />

Remarkable human beings #HNCCONF<strong>2017</strong>”<br />

https://twitter.com/BlairPapworth<br />

What Could Be Improved<br />

Observations from visitors included:<br />

<br />

<br />

<br />

There was a disappointing lack of engagement from healthcare professionals about what<br />

physiotherapy can do (for cancer patients);<br />

There were insufficient opportunities for exhibitors to engage with the audience and there<br />

needs to be improved lunch arrangements to allow exhibitors more time with audiences;<br />

There needs to be more local expertise and innovation particularly from the Cancer Centre and<br />

local universities;<br />

Page 15 of 43


Timing/scheduling on the second day could have been improved so that speakers were not<br />

removed from agenda;<br />

Consider a nutritionist or cooking expert for next year;<br />

A need to include new, innovative treatments (and/or classes of therapies) for head and neck<br />

cancer;<br />

Include in future an oncologist’s talk to bring us up to date on the latest cancer treatments;<br />

Include a facial plastic surgeon to talk about the reconstructive and restorative surgeries;<br />

There wasn’t enough time for Questions and Answers during some individual sessions;<br />

Breaks are very important for socialising and it felt they weren't relaxed enough. Maybe finish<br />

earlier? Include Questions and Answers for each speaker, even if only one question?<br />

Wider impact outside the conference room<br />

Local radio<br />

A series of four radio clips were broadcast by local station Radio Wave 96.5 during the conference,<br />

including interviews with Chris Curtis and Arthur Lauretano. These mainly focused on Health<br />

Professionals needing to walk the shoes of Head and Neck Cancer patients (see section on Quality of<br />

Life Challenges) and on the policy issue of vaccinating against the HPV virus in both boys and girls.<br />

Although it is not possible to estimate how many listeners heard one or more of the broadcasts,<br />

Radio Wave 96.5’s latest published audience figures are 56,000 listeners per week, listening for an<br />

average of 7.2 hours each. (Source media.info – Survey period November 2016 to September <strong>2017</strong>).<br />

Listen to “An Introduction to the <strong>Conference</strong>”<br />

Listen to “Arthur Lauretano’s views”<br />

Listen to “Chris Curtis – Health Professionals need to walk patients’ shoes”<br />

Listen to “Arthur Lauretano – vaccinating against the HPV virus”<br />

Short Film<br />

Derby University Students came to the conference to speak about their research into Human<br />

Papilloma Virus (HPV) and their short film aimed at raising awareness was launched at the<br />

conference and can be viewed on YouTube.<br />

Social Media<br />

Throughout the conference visitors and other audiences were encouraged to use Twitter extensively<br />

to help engage worldwide audiences in the conference activity. Using the Twitter hashtag<br />

#HNCConf<strong>2017</strong> we achieved a social media reach of over one million.<br />

Page 16 of 43


We engaged with expanded audiences, including throughout the UK, and in the United States,<br />

Europe, South Africa, India, Australia and New Zealand.<br />

Photography<br />

Our professional photographer Peter Jefferson has produced a portfolio of over 800 images from the<br />

conference, which can be viewed here.<br />

How the conference can influence policy and change<br />

As a consequence of holding the conference in the local area, Paul Maynard, MP for Blackpool North<br />

and Cleveleys visited. He engaged with Chris Curtis, conference organiser and Jo Ashton, Clinical<br />

Nurse Specialist at Blackpool Teaching Hospitals, in particular focusing on the debate about HPV<br />

Vaccination.<br />

Subsequent to the conference Paul has agreed to write to the Health Minister to raise awareness of<br />

the issue and to seek a discussion between Government and Head and Neck Cancer advocates.<br />

Plans for a European Head and Neck Cancer Foundation<br />

We believe the 2016 and <strong>2017</strong> conferences have started an important conversation, gaining traction<br />

and support for a European collaboration for Head and Neck patients, carers, health professionals<br />

and organisations to ensure the best possible treatment, care and support for those affected by<br />

Head and Neck Cancer across Europe.<br />

The European Head and Neck Cancer Voice Foundation would be developed aligned to a range of<br />

themes including:<br />

1. Awareness<br />

2. Early Diagnosis<br />

3. The Cancer Journey (Pathway)<br />

4. Side Effects<br />

5. Survivorship ‘Living with and beyond Head and Neck Cancer’<br />

6. Quality of Life<br />

7. ‘No one should be alone’<br />

8. Improving and accessible services for carers<br />

9. Research & Science<br />

10. Access to Medicines and Treatment for all<br />

11. Patient Advocacy awareness, knowledge & training<br />

Head and Neck Cancers are approximately 6% of diagnosed cancers worldwide. There are several<br />

organisations in different countries working to support those people affected by Head and Neck<br />

Cancers. However, there is not a single European or Global organisation enhancing collaboration for<br />

Page 17 of 43


the points noted above. Utilising the great energy, goodwill and desire of a wide network of people<br />

it is our ambition to put that right.<br />

Ultimate goals include delivering an active head and neck cancer support service in every European<br />

country and networked support services through an organisational hub.<br />

Our Current Milestones<br />

To maintain and increase the momentum developed from the conferences in Liverpool and<br />

Blackpool so far, our plans for 2018 include:<br />

<br />

<br />

<br />

<br />

<br />

<br />

In January 2018 presenting this conference review at the Lancashire and Cumbria NHS Trust<br />

<strong>Conference</strong><br />

By April 2018 having the bases in place for a pan-European and global support Foundation,<br />

including the target social outcomes and the services that support these.<br />

By June 2018 attracting Funding for the Foundation, including from sponsor organisations and<br />

from health and wellbeing related funding streams<br />

In November 2018 delivering the national conference in Nottingham “Understanding Your Head<br />

and Neck Cancer Journey”<br />

Delivering other supporting regional conferences during the year, including in Scotland and<br />

South West England<br />

In 2019 taking our conference experiences to Europe<br />

Page 18 of 43


Annex A<br />

Timed Agendas<br />

Timed Agenda<br />

Day One – 7 th November<br />

Day 1 (Health Professionals Only)<br />

Morning<br />

08.45 09.45 <strong>Conference</strong> Room and Exhibition open<br />

Registration, Refreshments and Networking<br />

09.45 10.00 <strong>Conference</strong> Welcome<br />

Chris Curtis (<strong>Conference</strong> Organiser)<br />

Head & Neck Cancer Survivor and World H&N Ambassador<br />

Ajay Nigam (<strong>Conference</strong> President)<br />

H&N Surgeon<br />

10.00<br />

10.30<br />

10.45<br />

11.15<br />

11.30<br />

12.00<br />

12.30<br />

Afternoon<br />

10:30<br />

10.45<br />

11.15<br />

11.30<br />

12.00<br />

12.30<br />

13.15<br />

Arthur Lauretano (USA)<br />

Medical Director at Lowell Cancer Centre, H&N Surgeon<br />

Phil Parramore<br />

Business Advisor and H&N Cancer Volunteer<br />

Dr K Vasudev<br />

Histopathologist Rtd<br />

Break<br />

Claire Burke (USA)<br />

Oncology Nurse<br />

Sajjad Iqbal (USA)<br />

Rare Cancer Patient Survivor<br />

Lunch & Networking Opportunity<br />

Exhibition Halls open throughout lunch<br />

13.15<br />

14.00<br />

Julie McCrossin (Australia) H&N Survivor<br />

International patient speaker<br />

14.00<br />

14:30<br />

Jo Patterson<br />

Honorary Senior Clinical Lecturer & Speech & Language Therapist in<br />

ENT<br />

14:30<br />

15.00<br />

Quality of Life Challenges<br />

15.00<br />

15.30<br />

Networking and Exhibition (Refreshments)<br />

15.30<br />

16.00<br />

16.00<br />

16.30<br />

Chris Lewis (UK)<br />

Long term cancer survivor<br />

Dr Gillian Knight and Students from Derby University<br />

HPV Education Film launch<br />

Page 19 of 43


16.30<br />

17.00<br />

Naseem Ghazali (UK)<br />

Robotic Surgeon<br />

17.00<br />

17.30<br />

Dr Jiri Kubes, (Prague)<br />

PhD, Medical Director Pencil Beam Scanning (PBS)<br />

17.30<br />

17.45<br />

Q&A Session<br />

Hosted by Chris Curtis and Ajay Nigam<br />

Speakers will be invited to join<br />

17.45<br />

18.00<br />

Networking and Exhibition Hall<br />

7.30pm for 8pm<br />

Speakers Dinner<br />

The Village Hotel<br />

Inspirational Room<br />

Page 20 of 43


Annex A<br />

Timed Agendas<br />

Timed Agenda<br />

Day Two – 8 th November<br />

Day 2 (Patients, Carers, Volunteers and Support Groups only)<br />

Morning<br />

09.00 09.45 Exhibition Open<br />

Registration, Networking and Refreshments<br />

09.45 10.00 <strong>Conference</strong> Welcome<br />

Chris Curtis (<strong>Conference</strong> Organiser)<br />

Head & Neck Cancer Survivor and World H&N Ambassador<br />

Ajay Nigam (<strong>Conference</strong> President)<br />

H&N Surgeon<br />

10:00<br />

10.30<br />

10.45<br />

11.15<br />

11.30<br />

11.50<br />

12.20<br />

12.50<br />

10:30<br />

10.45<br />

11.15<br />

11.30<br />

11.50<br />

12.20<br />

12.50<br />

13.45<br />

Arthur Lauretano (USA)<br />

Medical Director at Lowell Cancer Centre, H&N Surgeon<br />

Phil Parramore<br />

Business Advisor and H&N Cancer Volunteer<br />

Dr K Vasudev<br />

Histopathologist Rtd<br />

Break<br />

Dr Gillian Knight and Students from Derby University<br />

HPV Education Film launch<br />

Claire Burke (USA)<br />

Oncology Nurse<br />

Sajjad Iqbal (USA)<br />

Rare Cancer Patient Survivor<br />

Lunch & Networking Opportunity<br />

Exhibition Halls open throughout lunch<br />

Afternoon<br />

13.45<br />

13.50<br />

Presentation of Donation to The Swallows Charity<br />

13.50<br />

14:40<br />

or<br />

14.50<br />

14.30<br />

15:10<br />

No planned end time<br />

Julie McCrossin (Australia) H&N Survivor<br />

International patient speaker<br />

Jo Patterson<br />

Honorary Senior Clinical Lecturer & Speech & Language Therapist in<br />

ENT<br />

Dr Rob Hicks (TV Doctor) & Dawn Maher (Blackpool Carers)<br />

The Role of Carers (breakout session)<br />

Sponsored by Beaverbrooks Jewellers<br />

Page 21 of 43


15:10<br />

15:40<br />

Networking and Exhibition (Refreshments)<br />

15.40<br />

16.10<br />

16:40<br />

17.10<br />

17.40<br />

16.10<br />

16.40<br />

17.10<br />

17.40<br />

18.00<br />

Dr Alex Mitchell (UK)<br />

Honorary Senior Lecturer in psycho-oncology of liaison psychiatry<br />

Chris Lewis (UK)<br />

Long term cancer survivor<br />

Naseem Ghazali (UK)<br />

Robotic Surgeon<br />

Q&A Session<br />

Hosted by Chris Curtis and Ajay Nigam<br />

Speakers will be invited to join<br />

Networking and Exhibition Hall<br />

Page 22 of 43


Annex B<br />

Quality of Life Challenges<br />

Head and Neck Cancer patients smell things differently to other people.<br />

Head and Neck Cancer have a range of difficulties in eating and swallowing and often choose to eat<br />

alone to avoid embarrassment in company dining.<br />

Page 23 of 43


The killing of saliva glands in surgery means experiencing Dry Mouth is common to Head and Neck<br />

Cancer patients. This is similar to trying to eat a mouth full of cream crackers.<br />

Liquid food is commonplace, often the only thing that can be eaten soon after surgery and high in<br />

protein and calories<br />

Page 24 of 43


Seasonings and spices are to be avoided, but this can make food taste bland<br />

Regular dental screening helps identify whether you are at risk of Head and Neck Cancers developing<br />

Page 25 of 43


Annex C<br />

Summary of Carers’ Session held on Day Two<br />

Question<br />

1. What challenges do you face when<br />

looking after someone?<br />

2. What would make your caring role<br />

easier?<br />

3. What can services do to help, what<br />

changes would you like to see?<br />

Responses<br />

Fitting it in - i.e. time<br />

Own health both physical and emotional<br />

Priority<br />

Information - lack of understanding/training<br />

Personal Wellbeing - Not looking after<br />

self/getting breaks<br />

‘Juggling Act’- Different roles; mother,<br />

daughter, carer, employee<br />

Patients need change ‘up and down’<br />

Struggling to open up - a chance to speak to<br />

other carers would be good<br />

Depended on/ relied on<br />

Group support/chat<br />

More communication from GP Surgeries -<br />

regarding carers. This could be through screens<br />

in surgeries or via PPG<br />

More info available<br />

More volunteers to help raise awareness in GP<br />

surgeries<br />

Sharing ‘best practice’ across services and<br />

different carers<br />

More info at bus stops/in supermarkets<br />

FY1 Directory and other info<br />

DWP - Awareness of carers - more joined up<br />

work between health-related benefits and<br />

social related benefits<br />

4. Which of the following feelings (slides<br />

of these were provided) have you<br />

experienced?<br />

1.Pride-2<br />

2. Guilt (helpless or angry)-3<br />

3.Fulfilment -1<br />

4. Resentment-4<br />

5. Fit Health-0<br />

6. Unhealthy-7<br />

7. Energised- 0<br />

8.Exhausted- 9<br />

9. Happy- 2<br />

10. Sad- 8<br />

11. Obligation- 8<br />

Other suggested feelings:<br />

12. Frustration<br />

13. Angry<br />

14. Uneducated<br />

15. Unprepared<br />

16. Learning on job<br />

17. Alone<br />

18. Courage and inner strength<br />

Page 26 of 43


Annex D<br />

<strong>Conference</strong> Supporters<br />

Page 27 of 43


Annex E<br />

Quality of Life Wall Capture<br />

Health Professionals were asked:<br />

Question 1 “What are your greatest achievements supporting patients and carers with their<br />

quality of life?”<br />

Here’s what they said:<br />

Supporting teams across<br />

centres to ensure<br />

smooth handover and<br />

transfer of care between<br />

two MDTs / hospitals<br />

Improving information,<br />

advice and support for<br />

people affected by Head<br />

and Neck Cancer<br />

through the MacMillan<br />

information centre and<br />

health and wellbeing<br />

events<br />

Always being there at<br />

the end of a phone<br />

Supporting patients who<br />

have no next of kin or friends<br />

/ family their treatment and<br />

recovery<br />

Listening<br />

Being there to talk to<br />

whenever needed<br />

Support<br />

Product advice, provide good<br />

quality products to nurses /<br />

laryngectomy patients<br />

Sharing their experience Education Empowerment Funding initiative to advance<br />

Head and Neck surgery for<br />

patients in Lancashire and<br />

South Cumbria (written by<br />

Rosemere Cancer<br />

Foundation)<br />

Effective symptom<br />

management for dry<br />

mouth and receiving<br />

positive feedback from<br />

the patients<br />

Supporting patients with<br />

quality of life and<br />

nutrition<br />

Supporting patients to<br />

get back to work and<br />

discharge at five years<br />

Helping Laryngectomy<br />

patients learn to voice<br />

Working with Your<br />

Cancer Journey (Chris<br />

Curtis) – developing<br />

website for knowledge<br />

Signposting patients to<br />

appropriate services<br />

after acute episodes of<br />

care<br />

Compassion, listening,<br />

empathy, offering<br />

support<br />

Showing I care and listening<br />

well.<br />

Giving time and comfort<br />

Building relationships<br />

with patients / carers.<br />

Some I will never forget<br />

Patients with Head and<br />

Neck Cancer literally<br />

lose communication<br />

overnight. Actually<br />

sitting down and<br />

teaching them to<br />

communicate again is<br />

an achievement in itself<br />

Enable them to fulfil a<br />

meaningful life. Feel a<br />

valued member of their<br />

family<br />

Page 28 of 43


We created a Head and<br />

Neck Cancer support<br />

website<br />

www.nottshncs.nhs.uk<br />

(written by @nottshncs)<br />

Providing regular follow<br />

ups and giving<br />

reassurance<br />

Introduce valve speech<br />

to Blackpool Hospital in<br />

1996<br />

Education about swallowing<br />

and taking patients lead for<br />

rehabilitation<br />

Gaining insight of patient<br />

experience; of comfort<br />

during radiotherapy<br />

treatment<br />

Being able to assess<br />

efficiently so I am able<br />

to help and support as<br />

best I can and, if not,<br />

refer on – and seeing<br />

them coming back for<br />

the next fixed review<br />

Positive thinking and<br />

happy patients<br />

Supporting Laryngectomy<br />

patients to change their own<br />

speaking valves at home.<br />

Managing to have a<br />

family Christmas Dinner<br />

together<br />

Helping patients to be<br />

safely discharged with a<br />

Laryngectomy<br />

The honour of caring for<br />

and supporting (as<br />

much as is possible) my<br />

wonderful mum who<br />

had a brain tumour<br />

Facilitating choice<br />

Giving back<br />

independence<br />

Allowing someone that<br />

first cup of tea<br />

25 years of nursing this<br />

group of patients<br />

Helping survivors come to<br />

term with long term<br />

difficulties with eating, while<br />

encouraging progress and<br />

helping them enjoy food<br />

again as much as possible<br />

Supported both patients<br />

and family through the<br />

treatment, by listening<br />

and being empathetic<br />

Encouraging someone<br />

to consider trying a<br />

speech valve<br />

Supporting patient not<br />

wanting treatment after<br />

he had all information<br />

Respite and memories for<br />

patients and carers<br />

Setting up The Swallows<br />

Setting up an award<br />

winning<br />

(Nottinghamshire) late<br />

effects service for<br />

MacMillan that helps<br />

H&N patients tell their<br />

story and give them the<br />

ability and tools to carry<br />

on<br />

Post treatment support<br />

clinic<br />

Ward based support for staff<br />

and patients<br />

Quality of life screening<br />

Aided in good postoperative<br />

care to<br />

ensure timely discharge<br />

home<br />

Setting up a combined<br />

AHP post treatment and<br />

survivorship clinic<br />

- Radiotherapy<br />

- SALT<br />

- Dietetics<br />

Practical support<br />

Page 29 of 43


Delighted to have been<br />

able to help Chris and<br />

The Swallows with the<br />

imminent! International<br />

survey of patient<br />

experience of dry mouth<br />

Running Swallows<br />

patients and carers<br />

meetings<br />

Providing a place to go<br />

when in need of a<br />

holiday or break<br />

Being there to listen and<br />

support<br />

Setting up our<br />

multidisciplinary centre<br />

Increasing awareness<br />

of the treatment options<br />

available to improve<br />

Quality of Life<br />

Listen and ask what’s<br />

wanted/ needed and<br />

then be a dynamic,<br />

tenacious, loyal, honest,<br />

open professional<br />

prepared to talk<br />

Encouraging someone to eat<br />

out socially after 9 years<br />

isolation<br />

In last six months I have<br />

set up a MDT clinic –<br />

seeing patients pre / mid<br />

/ post treatment. Patient<br />

feedback has been<br />

excellent. Bonus of skill<br />

sharing<br />

Establishing multidisciplinary<br />

clinics to<br />

reduce gastrostomy<br />

placement times<br />

significantly. Improved<br />

swallowing = improved<br />

quality of life.<br />

Teamwork /<br />

communication<br />

Staff training<br />

- Team talks<br />

- Raising awareness<br />

Raising the profile in<br />

toxicity management to<br />

improve quality of life<br />

Working towards a<br />

patient centric<br />

commissioned pathway<br />

Diagnosing Head and<br />

Neck Cancer as a<br />

pathologist<br />

Providing education and<br />

healthcare professionals<br />

about the long term effects of<br />

Xerostomia<br />

Interviewing 60+ patients<br />

Organising two patient<br />

events<br />

Being able to provide<br />

communication via<br />

mobile SIM Cards<br />

bespoke to people living<br />

with Head and Neck<br />

Cancer<br />

Launching our charity,<br />

SIMPAL. We provide free<br />

calls, texts, data and mobiles<br />

to those living with cancer<br />

I have set up an annual<br />

Christmas Dinner with a<br />

difference, for patients<br />

with swallowing<br />

difficulties in a supportive<br />

environment. For many<br />

it’s the first time they<br />

have eaten out since<br />

completing treatment<br />

Providing emotional<br />

support<br />

Developing and getting<br />

approval in the UK for a<br />

new type of therapy for<br />

Head & Neck cancer<br />

patients<br />

Providing nutrition via<br />

feeding tubes<br />

Page 30 of 43


Health Professionals were asked:<br />

Question 2<br />

What are you working on now?<br />

Here’s what they said:<br />

Access and<br />

information to<br />

appropriate support<br />

(raising awareness of<br />

the condition and<br />

services)<br />

Working towards a<br />

local valve clinic<br />

Better communication<br />

Health promotion<br />

awareness<br />

Education of dental<br />

nurses in order for<br />

them to widen the net<br />

of diagnosis<br />

Raising awareness<br />

there is support<br />

To provide more<br />

support in more health<br />

professionals, etc.<br />

more hours to gain a<br />

better patient journey<br />

locally<br />

Talking to<br />

commissioners about<br />

increased funding<br />

A motion capture<br />

pillow aiming to<br />

replace thermoplastic<br />

masks when dosing<br />

radiotherapy and<br />

beyond<br />

Helping improve<br />

surgical training with<br />

simulation.<br />

Ensure patients who<br />

are on five year<br />

surveillance post<br />

treatment continue to<br />

receive appropriate<br />

support<br />

Project on targeting<br />

screening for Head and<br />

Neck Cancer patients in<br />

areas of Blackpool with<br />

lower socioeconomic<br />

status<br />

Patient support group<br />

The relicensing of<br />

support drugs to<br />

improve toxicity<br />

management in<br />

cancer care<br />

More support for<br />

carers<br />

Bringing health<br />

professionals from all<br />

over the world to share<br />

information (data) to<br />

impact research and<br />

quality of life<br />

General tracheostomy<br />

care<br />

Improving patient care<br />

on the wards for head<br />

and neck patients<br />

Robotic surgery<br />

Reduction of XRT<br />

dosage<br />

Patient experience of<br />

spirituality, especially<br />

in end of life care<br />

Introduce screening<br />

for Head and Neck<br />

Cancer in Lancashire<br />

and South Cumbria<br />

Recognising Quality of<br />

Life and its importance<br />

by education<br />

Working on improving<br />

discharges for Head<br />

and Neck Cancer<br />

patients from hospital<br />

Proton radiotherapy<br />

New product<br />

development from<br />

patient feedback<br />

Making people aware<br />

of the role of<br />

pathologists in<br />

management of Head<br />

and Neck Cancer<br />

Future<br />

Steering group for<br />

national Head and Neck<br />

Cancer Oncology<br />

meeting to discuss and<br />

inform UK clinical<br />

practice<br />

Page 31 of 43


Patient led reviews -<br />

survivorship<br />

Publicity of late effects<br />

service and teaching<br />

our models to other<br />

hospitals<br />

Screening tools for<br />

late effects /<br />

consequences of<br />

treatment<br />

Annual survivorship site<br />

special events<br />

Remodelling the Head<br />

and Neck Cancer<br />

service in Nottingham<br />

Supporting Blackpool<br />

Carers Centre to help<br />

anyone caring for<br />

someone with Head<br />

and Neck Cancer<br />

Bringing the latest<br />

robotic surgical<br />

equipment to the<br />

North West (written by<br />

Rosemere Cancer<br />

Foundation)<br />

Setting up a local<br />

support group for Head<br />

and Neck Cancer<br />

Patients<br />

Using E-HNA to<br />

ensure patients needs<br />

are met<br />

Ensuring people are<br />

aware of support<br />

available – getting out<br />

into communities<br />

Holistic needs<br />

assessments and<br />

treatment summaries<br />

for people affected by<br />

Head and Neck<br />

Cancer<br />

Working very hard on a<br />

business case for more<br />

SLT / Follow up clinics<br />

for equity of service<br />

within the region<br />

(Fingers crossed!)<br />

Here today!<br />

Re-licence of drugs in<br />

the UK to help quality<br />

of life<br />

Developing FEES<br />

service for swallowing<br />

investigation/ therapy<br />

post treatment<br />

Holistic Needs<br />

Assessment<br />

Quiet Room<br />

completed<br />

Buddy System<br />

Improving facilities to<br />

encourage people to<br />

feel that they can<br />

socialise again<br />

Improving facilities,<br />

service and funding<br />

Psychological<br />

assessment and<br />

support for all patients<br />

Physical activity<br />

programme<br />

Living with and<br />

beyond cancer<br />

initiatives. Providing<br />

One Stop clinics for<br />

speed of diagnosis<br />

We are setting up a<br />

Head and Neck Cancer<br />

choir for all survivors<br />

including<br />

Laryngectomees.<br />

These sessions focus<br />

on breath support in a<br />

fun and sociable setting<br />

Charity growth – new<br />

partnerships,<br />

investment, growth in<br />

general, national<br />

fundraising campaign<br />

Immuno-Oncology<br />

treatments<br />

Access to innovative<br />

medicines<br />

Reduce social isolation<br />

and financial pressures<br />

through Your SIMPAL<br />

Improving the Quality<br />

of Care<br />

Creating a Charity<br />

Developing a new<br />

form of<br />

Immunotherapy for<br />

Head and Neck<br />

patients that has fewer<br />

side effects than<br />

current therapies<br />

Hub and spoke model<br />

More screening in<br />

primary care<br />

A bespoke living and<br />

Cancer Head and<br />

Neck Programme<br />

Establishing nonmedical<br />

follow-up for<br />

years 3/4/5 post<br />

treatment<br />

(survivorship clinic)<br />

Reducing patients and<br />

healthcare delay<br />

Page 32 of 43


To get more involved<br />

with Head and Neck<br />

Cancer Support Group<br />

to provide support and<br />

care of patients in<br />

need<br />

Treatment / SLT<br />

support for<br />

radiotherapy patients<br />

Better treatments<br />

Reducing smoking<br />

Health promotion Survivorship clinics New ways of MDT<br />

working<br />

Outreach airways Nse<br />

Post.<br />

Working in<br />

collaboration!! Call to<br />

achieve patient centric<br />

care<br />

Page 33 of 43


Health Professionals were asked:<br />

Question 3<br />

What would you like to see if you had an open cheque book?<br />

Here’s what they said:<br />

More therapy staff More staff in team Ability to set up<br />

different types of<br />

support groups<br />

More time<br />

More staff<br />

Improved facilities for<br />

all<br />

Improve counselling<br />

patients after major<br />

surgeries<br />

Increased access to<br />

good quality services<br />

across the UK for all<br />

Head and Neck<br />

Cancer patients<br />

Equity<br />

One stop neck lump /<br />

CT scanning in same<br />

appointment<br />

More support for those<br />

with Head and Neck<br />

Cancer<br />

Screening and<br />

vaccination in Primary<br />

Care<br />

More support in the<br />

community<br />

More specialist units<br />

for Head and Neck<br />

Cancer<br />

Unrestricted access to<br />

new, better tolerated<br />

treatments for Head<br />

and Neck Cancer<br />

patients<br />

More education and<br />

money spent on<br />

prevention<br />

Earlier diagnosis of<br />

Head and Neck<br />

Cancer<br />

Easy and free of<br />

charge access to the<br />

best treatment<br />

available<br />

Better financial support Improved<br />

psychological support<br />

To pay for all people to<br />

enjoy a holiday at our<br />

hotel<br />

All patients would<br />

receive top quality<br />

care before during and<br />

after treatment for<br />

Head and Neck<br />

Cancer<br />

Robotic surgery<br />

HPV Vaccination for<br />

boys<br />

New Laser Machine<br />

More NBI endoscopes Staff in hospital Health equality for all –<br />

equal access to<br />

healthcare<br />

New robot<br />

Completely funded<br />

nutritional and dental<br />

support<br />

Head and Neck<br />

Research<br />

Being able to run the<br />

“HOPE” MacMillan<br />

Course more often<br />

Psychological support<br />

services!<br />

Page 34 of 43


A cheque for the gift of<br />

good health<br />

Access to therapies<br />

and drugs with clinical<br />

relevance to help cure<br />

cancer or prevent it<br />

The best care for all<br />

patients, no matter<br />

where they live / what<br />

they can afford<br />

Better , quicker access<br />

for patient access to<br />

treatments<br />

Disease free HPV Vaccine for boys Fully functioning local<br />

Head and Neck<br />

Cancer team – that coworks<br />

effectively with<br />

primary treatment<br />

centre<br />

Elimination of cancer<br />

More clinic rooms so<br />

we can see more<br />

patients<br />

Services at local<br />

hospital leading to<br />

major Head and Neck<br />

operations<br />

Davina Robot<br />

Modern wards with<br />

internet and relaxing<br />

areas for patients<br />

Head and Neck<br />

Cancer screening for<br />

children and all adults<br />

Greater emphasis on<br />

preventative<br />

management of Head<br />

and Neck Cancer<br />

Better screening in<br />

targeted areas to<br />

increase the detection<br />

of earlier, less<br />

advanced cancers<br />

Holistic support for<br />

Head and Neck<br />

patients<br />

Make Head and Neck<br />

Cancer a leader in<br />

healthcare<br />

HPV screening and<br />

vaccination of young<br />

people<br />

More volunteer 24/7<br />

support for patients +<br />

CNS<br />

More theatre capacity<br />

and unlimited<br />

equipment<br />

A designated team to<br />

include dietician,<br />

speech and language<br />

therapist, solely<br />

focusing on Head and<br />

Neck Cancer patient<br />

care<br />

Purpose built Head<br />

and Neck Cancer<br />

centre with all<br />

services and support<br />

in one area<br />

Centralised centre with<br />

all professionals<br />

together<br />

HPV Vaccination for<br />

boys<br />

A larger network<br />

- Dieticians<br />

- SALT<br />

- CNS<br />

- Oncologists<br />

- Everything<br />

please <br />

-<br />

All testing treatment<br />

offered available<br />

Free respite care for<br />

patients and family<br />

Rapid treatment<br />

HPV vaccine for all!!<br />

New technology used<br />

to prevent cancer<br />

Support services for all<br />

patients<br />

Multidisciplinary care<br />

for all patients<br />

Investment in<br />

communities and<br />

support groups<br />

Vertical XRT<br />

treatment room so<br />

patients will have less<br />

problems with<br />

secretions (than lying<br />

flat)<br />

Free dental care for<br />

Head and Neck<br />

patients following<br />

treatment<br />

Specialised treatment<br />

nearer to home for all<br />

patients<br />

Page 35 of 43


Research into surgical<br />

treatment for those<br />

with Xerostomia<br />

Free dental treatment<br />

for Head and Neck<br />

Patients<br />

Awareness and<br />

investing in<br />

communities<br />

Cure for Xerostomia<br />

Surgery –DXT /<br />

chemo, etc.<br />

More support More time Awareness,<br />

collaboration,<br />

communities working<br />

together on many<br />

levels<br />

All boys to have HPV<br />

injection<br />

More Multi-Disciplinary<br />

Teams<br />

More Physiotherapy<br />

Ask the person/ their<br />

relatives what they<br />

need<br />

Endless product trials<br />

and availability<br />

More equipment More staff More education<br />

More help for patients<br />

Unlimited budget for<br />

communication aids<br />

A complete MDT pre<br />

and post treatment<br />

clinic<br />

Funding for research<br />

into methodologies for<br />

research quality, in self<br />

report patient<br />

experience, not only<br />

big pharma trials<br />

Teaching /<br />

encouraging juniors to<br />

apply to ENT / H&N as<br />

the future generation<br />

TNFLO – improve<br />

patient flow /<br />

diagnostics<br />

Page 36 of 43


Patients and Carers were asked:<br />

Question 1<br />

What are your successes / achievements that are helping you improve<br />

your quality of life?<br />

Here’s what they said:<br />

Good health<br />

Recognising the value<br />

and importance of<br />

family support<br />

Set up Head and Neck<br />

Cancer Support Group<br />

(written by GR)<br />

Having had 4 different<br />

cancers, my<br />

achievement are still<br />

being here<br />

Support from family<br />

and friends<br />

My great family and<br />

surviving cancer<br />

against all the odds<br />

(written by Sajjad<br />

Iqbal)<br />

Good health<br />

Restarting my career<br />

after losing my<br />

husband<br />

Support from family<br />

and friends<br />

Accepting the situation Surviving 17 years so<br />

far<br />

Resilience – having<br />

had to relocate twice in<br />

2 years during<br />

treatment and coping<br />

just! (written by Sue)<br />

Trying to stay positive<br />

Not forgetting that my<br />

loved one is who they<br />

were BEFORE their<br />

cancer. Remember<br />

that and the<br />

relationship returned<br />

as it was<br />

Looking after myself<br />

so I can care for others<br />

Mental support of the<br />

family member<br />

Optimism Can now swallow Allowing time and<br />

listening<br />

Making time for<br />

yourself and others<br />

My family<br />

Do less to achieve<br />

more<br />

Understanding the<br />

disease<br />

Family support and<br />

working together<br />

Practicing mindfulness Hands free after 18<br />

months (written by<br />

Alex)<br />

Seeing more of my<br />

patients cured and<br />

functional<br />

Creating links between<br />

support groups in<br />

Fylde, Wyre and<br />

Blackpool<br />

Page 37 of 43


Do not look back if you<br />

can<br />

Do a lot of travelling in<br />

Summer around The<br />

Lakes<br />

Now retired, I’m<br />

getting and hope<br />

giving, great fun<br />

volunteering (written<br />

by Peter Moore)<br />

Survived 21 years<br />

(written by Duncan<br />

Waddington)<br />

Working Fantastic patients Listening to patients<br />

and facilitating change<br />

I got back into exercise<br />

and sport (written by<br />

Mark)<br />

I started The Swallows<br />

Support Group in<br />

Jan.2010 (written by<br />

Wendy Hepworth)<br />

Learning to swallow<br />

again (sort of!) and<br />

have my feeding tube<br />

out.<br />

Work / life balance<br />

Being understanding<br />

Support patients<br />

Compassion for<br />

families<br />

Page 38 of 43


Patients and Carers were asked:<br />

Question 2<br />

What further support is required to further improve your quality of life?<br />

Here’s what they said:<br />

My wife gives me all<br />

the support I need,<br />

and I have a full life<br />

(written by Alex)<br />

Knowing there is<br />

support always<br />

available<br />

Carers Support Group<br />

Continuing support<br />

groups with ongoing<br />

information (written by<br />

Lynne Webster)<br />

More help with dry<br />

mouth to improve my<br />

sleeping<br />

More treatment re:<br />

teeth. Due to dry<br />

mouth and teeth<br />

breaking and loosing<br />

teeth<br />

Decentralisation of<br />

care, so patients don’t<br />

have to travel so much<br />

to get care<br />

Full family support<br />

Full financial support<br />

Accessing support<br />

groups and<br />

understanding within a<br />

new location with<br />

regard to living post<br />

treatment (written by<br />

Sue)<br />

More support on<br />

eating after treatment<br />

Revitalise saliva<br />

glands!<br />

Further expansion of<br />

MDT collaborative<br />

care<br />

Feeling that care is<br />

more joined up<br />

More help for carers<br />

Time<br />

Need therapy to<br />

overcome granulation /<br />

migration of valve<br />

(written by GR)<br />

Education of medical /<br />

dental staff to educate<br />

patients and give them<br />

tools to improve quality<br />

of life<br />

Relationship<br />

counselling<br />

Improved GP support<br />

during cancer<br />

treatment<br />

More physio,<br />

Occupational Therapy,<br />

SALT, Support<br />

Groups.<br />

Professionals need to<br />

listen<br />

Someone to talk things<br />

through with (written<br />

by Mark)<br />

We all need support<br />

down the line (written<br />

by Duncan<br />

Waddington)<br />

Recovered well –<br />

continue enjoying life<br />

Continual check ups<br />

Additional support<br />

should include a more<br />

joined up (multidisciplinary)<br />

approach<br />

Lymphedema<br />

recognition and<br />

support<br />

Page 39 of 43


Try to be independent<br />

Continuation of<br />

support<br />

More joined up of<br />

professionals<br />

treatment<br />

Dietician support<br />

Better links between<br />

health care and home<br />

Regular local group<br />

events<br />

Easy access to<br />

psychological therapist<br />

Physical therapies like<br />

massage, physio,<br />

osteopathy, etc.<br />

Continued support<br />

More frequent Head<br />

and Neck Cancer<br />

Support meetings<br />

Timely information –<br />

post op and post<br />

radiotherapy (written<br />

by Peter Moore)<br />

More awareness of<br />

Head and Neck<br />

Cancer; funding for<br />

research; help for<br />

carers (written by<br />

Dr.Sajjad Iqbal)<br />

Learning from each<br />

other<br />

Speaking to some<br />

people who have<br />

same issues /<br />

challenges (HCP)<br />

Page 40 of 43


Patients and Carers were asked:<br />

Question 3<br />

Who would you like to thank for improving your cancer journey?<br />

Here’s what they said:<br />

Initial GP Dr.Bob Phillips (2) Karen Dykes NHS (2)<br />

Jo Ashton (4)<br />

Nurses at the hospital,<br />

providing support to<br />

patients, family and<br />

new staff<br />

Head and Neck Team<br />

at Blackpool. Jo and<br />

Beth have been<br />

marvellous<br />

With my other cancers<br />

I cannot thank enough<br />

my district nurses who<br />

have helped me. In<br />

fact all the staff have<br />

been really good and<br />

caring<br />

GP for early diagnosis Royal Preston Team St.Catherine’s<br />

Palliative Care<br />

The lay member and<br />

chair of the Patient,<br />

Public Engagement<br />

Group of Fylde and<br />

Wyre CCG<br />

My wife (2)<br />

Mr.Nigam, who saved<br />

my life<br />

Mr.Nigam, for all he<br />

has done for me<br />

Jo, Donna and Beth at<br />

Blackpool<br />

MacMillan<br />

My wife, my children,<br />

my friends, my<br />

doctors, Chris Curtis<br />

(written by Dr.Sajjad<br />

Iqbal)<br />

Our amazing patients<br />

who are sharing during<br />

change!! (HCP)<br />

Nursing staff who<br />

provided extra care –<br />

those who went the<br />

extra mile<br />

The continuing support<br />

from within and<br />

outside the Health<br />

Service during times of<br />

financial pressure<br />

Victoria Hospital ENT<br />

Dept. Joanne,<br />

Mr.NIgam<br />

All the nurses in<br />

cancer unit, who have<br />

a hard job<br />

The surgeon who<br />

saved my daughter’s<br />

life<br />

Specialist Nurse Consultant Nurses Carers<br />

The continuing support<br />

from within and<br />

outside the Health<br />

Service during times of<br />

financial pressure<br />

Victoria Hospital ENT<br />

Dept. Joanne,<br />

Mr.NIgam<br />

All the nurses in<br />

cancer unit, who have<br />

a hard job<br />

The surgeon who<br />

saved my daughter’s<br />

life<br />

Page 41 of 43


Alder Hey Children’s<br />

Hospital<br />

NHS Breast Care Nurse Receptionist<br />

Ronald McDonald<br />

House<br />

Connor Maluchi<br />

Mr.May<br />

Surgeons (written by<br />

Lynne Webster)<br />

Psychotherapist<br />

Doctors and nurses<br />

NHS<br />

Oncologist, Faz<br />

MacMillan Nurse<br />

Margaret Doyle<br />

All the team that<br />

operated on me<br />

Surgeon Nursing Staff Support Group<br />

Swallows<br />

Friends (2) Nurses (Clatterbridge) All the nurses in<br />

cancer unit, who have<br />

a hard job<br />

The surgeon who<br />

saved my daughter’s<br />

life<br />

Head and Neck<br />

Nurses<br />

Surgeon / Oncologist<br />

(2)<br />

Parents<br />

Partner<br />

The medical team The whole family The specialist H&N<br />

MacMillan Nurse<br />

Kindred Spirit<br />

Fellow patients, NHS<br />

for existing<br />

(written by Peter<br />

Moore)<br />

Family (2)<br />

Neighbours (for not<br />

prying but knowing to<br />

“keep an eye out”<br />

when family couldn’t<br />

be there)<br />

Head and Neck<br />

Cancer Support Team<br />

Preston Hospital<br />

Chris and Sharon<br />

Curtis / Swallows<br />

5 th year medical<br />

student who<br />

recognised I was in<br />

cardiac arrest in A&E<br />

on 10/11/15, 4 months<br />

after treatment<br />

My patients from<br />

whom I have learned<br />

so much<br />

The support group<br />

(ongoing)<br />

Page 42 of 43


Local Clinical Staff SLT MacMillan Trinity Hospice in The<br />

Fylde<br />

CNS Specialist<br />

Nursing staff at the<br />

providing hospital<br />

My friend Trish<br />

For convincing<br />

Jo Ashton and all her<br />

support staff (written<br />

by Marilyn Ryde)<br />

Me to work in<br />

Oncology<br />

Kevyan Chris As a physio, it’s<br />

amazing when<br />

someone comes in,<br />

looks me in the eye<br />

and asks how I am.<br />

Thankyou Chris and<br />

Chris.<br />

Now we move on to 2018…. Follow on Twitter #HNCCONF2018<br />

Next years conference will be held in Nottingham on the 6 th & 7 th November 2018.<br />

If you would like to pre-order your conference guide, email chris@ccconsultancy.uk.com this is due<br />

to be distributed in January 2018.<br />

Delegates are pre-registering now, so reserve your tickets ASAP as we are limited to only 200 seats<br />

on both days.<br />

Sponsors/exhibitors are limited and with companies booking now, places are filling quick – don’t<br />

miss this opportunity to be in front of Health Professionals on day one and patients/carers on day<br />

two.<br />

For further information on booking delegate tickets or sponsorship please contact:<br />

Sharon Curtis<br />

Email; sharon@ccconsultancy.uk.com<br />

Telephone<br />

Office; +44 1253 344 091<br />

Mobile; +44 7572 493 874<br />

Page 43 of 43

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