2017 Conference Review Report final
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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 />
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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 />
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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 />
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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 />
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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 />
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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 />
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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 />
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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 />
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