2021 Head & Neck Cancer Conference

CELEBRATING 6 YEARS 

OFFICIAL DELEGATE E-BOOK 

CARDIFF // WALES 

2ND, 3RD & 4TH NOVEMBER 

#HNCCONF2021 

STREAMING ONLINE 

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10104611315 v1.0 Oct 21 

VIRTUAL HEAD & NECK CANCER CONFERENCE 2021

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CELEBRATING 6 YEARS 

A warm welcome to the 2021 

Head & Neck Cancer Conference 

Welcome to everyone who has joined this year’s 6th Annual International Head & Neck 

Cancer Conference. Due to the Covid pandemic we are once again broadcasting virtually to 

a PC near you. We thought long and hard about what to do this year and decided that with 

the uncertainty of Covid-19 and the success of last years virtual conference, we would again 

go virtual in order to allow as many people as possible to view. 

The Covid-19 pandemic has continued to have an impact on the NHS, patients and people 

being referred for diagnosis. Mark Lawler from DATA-CAN: The Health Data Research Hub 

for Cancer, has told us that the NHS will need to work at 130% just to catch up and that it will 

take 10 years to get back to where we were prior to pandemic. In 2022 we all need to come 

up with innovative ways to get on top of this problem. 

This years conference is different to others based on the feedback we received last year. 

We have introduced seminars that will allow more interaction between speakers. We’ve 

kept our traditional key note speakers who are always so informative, and our hope is that 

the mixture of the two styles will work well. A lot of 2020 participants also commented that 

they don’t normally get to listen to such high profile speakers, so we were keen to keep the 

speaker quality and mix into 2021. 

Caregivers: on day 2 and 3 our wonderful Caregivers are highlighted in two seminars. It is 

important that we raise the profile of Caregivers and discuss two of the common themes 

that are apparent on a majority of the 24/7 calls we receive; ‘The Psychological Side of 

Caregiving’ and ‘Psychological Perspectives on Disease Impact and Coping.’ We hope that 

these seminars will shine a light on some of the issues they face. 

A big thank you to David Owen, our 2021 Conference President. The fantastic city of Cardiff 

and Vale University Health Board are our location hosts. David has been instrumental in the 

design and content of the programme, and he also introduced some of the great speakers 

and panellists we have on the programme this year. 

I wish you an enjoyable conference, and please don’t forget to feedback as your thoughts 

and comments are so valuable in shaping the conference for 2022. Feel free to email me 

directly with your suggestions. 

CHRIS CURTIS 

World Head & Neck Cancer Ambassador 

chris@theswallows.org.uk 

HEADLINE SPONSORS 

4 


IS THE BEST 

LAUGHTER 

MEDICINE 

5

David Owens 

MBCHB, FRCS(ED), MPHIL, PGDME, FFST(ED) 

CONSULTANT OTOLARYNGOLOGIST, UNIVERSITY HOSPITAL OF 

WALES. HONORARY SENIOR LECTURER, CARDIFF UNIVERSITY 

>> A note from your 

conference host 

It is our pleasure to welcome you to the 6th Virtual International Head and Neck Cancer 

Conference, organised as always by the Swallows Head and Neck cancer charity and this 

year hosted by The NHS University Health Board in Cardiff, in association with their sister 

University Health Boards throughout Wales. We had all hoped to see you in person in Cardiff 

this year but, owing to the ongoing global situation in relation to the COVID pandemic, the 

organisers, and the Welsh team, could not see a way to make that possible. 

2021 has been another difficult year due to the ongoing COVID-19 pandemic. Its effects 

on services, the restricted movement of people and the safety precautions required to 

help reduce its spread throughout the population have had a major impact not only on 

the medical, psychological and rehabilitative care that people have received, but also, and 

importantly, on patient and carer support groups. I hope with the ongoing vaccination 

program and the additional boosters being delivered, as well as a greater understanding 

of the need for a real international solution, that next year’s conference can be face-to-face, 

and we can all finally meet. Although the problems with accessing health care have been 

widely reported nationally, I am pleased that, even during the heights of the pandemic, 

Head and Neck services in Wales, including assessment, diagnostics, treatments and all 

supportive follow-up care have continued without significant delay. This is a testament to 

the determination and conviction of the multidisciplinary teams involved and demonstrates 

the importance of head and neck cancer to NHS Wales. 

I am sure you will find this year’s meeting as interesting and engaging as all the previous 

events, and that you will receive an insight into advances in head and neck cancer care, in 

all its medical, surgical, psychological and allied health aspects. The programme, the range 

of topics and the speakers involved promise to deliver a fantastic experience for all. I also 

hope the meeting gives participants a perspective on head and neck care in Wales and the 

journeys of some of the patients and carers. 

Enjoy the conference and everything it entails, and hopefully, in the future, come and see 

the beautiful city of Cardiff in real life. If you feel you could help the Swallows or indeed have 

something to add to future conferences, please do let us know. 

6 


A VIRTUAL WELCOME 

FROM 

CARDIFF 

7

TUES 2-NOV 

09:00 

- 10:00 Lobby opens 

10:00 

- 10:30 

Conference Opening Address 

David Owens Conference President 

10:30 

- 11:15 

11:15 

- 12:45 

Importance of Data in the fight against Head & Neck Cancer 

Professor Mark Lawler (Northern Ireland) Keynote Speaker 

Impact on Quality of Life 

CHAIR: Chris Curtis, Survivor and CEO of The Swallows Charity (England) 

Paul Schneider, Survivor (England) 

Ben Sheard, Survivor (England) 

Freya Sparks, Clinical Doctoral Research Fellow (England) 

12:45 

- 13:30 

The World of the Biopsy 

Dr Ali Khurram (England) Keynote Speaker 

13:30 

- 15:00 

I am Voiceless but not Speechless 

CHAIR: Jane Thornton, Speech and Language Therapy (England) 

Marianne Kooijman, Survivor (Holland) 

Steven Cooper, Survivor (USA) 

Tanja Bage, Survivor (England) 

Daniela Esteves, Head of Nursing Team at ATOS 

15:00 

- 15:30 

Living and learning: a cancer journey through a global pandemic 

Niki Shaw, Patient (England) Keynote Speaker 

15:30 

- 16:30 

Showcase: Head & Neck Services (Wales) 

CHAIR: David Owens, Conference President 

Luke Maxwell 

Roger Maggs, 3D printing for dental prosthetics and for surgical precision 

Peter Llewelyn 

16:30 

- 17:15 

Reducing the Incidence and Severity of Oral Mucositis with Photobiomodulation 

James Carroll, Renowned expert on Photoboimodulation (UK) Keynote Speaker 

17:15 

- 17:30 

Day 1 Closing Address 


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WEDS 3-NOV 

08:00 

- 09:00 

Lobby opens 

09:00 

- 09:15 

Day 2 Opening Address 


09:15 

- 10:45 

10:45 

- 11:30 

11:30 

- 13:00 

New Drugs in the fight against Head & Neck Cancer 

CHAIR: Arthur Lauretano (USA) 

Dr Lauren V. Wood, Chief Medical Officer PDS Biotechnology (USA) 

Dr Ali Khurram (England) 

The gap between dietitians and your home kitchen 

Yvonne McClaren, H&N Cancer Survivor (Australia) Keynote Speaker 

Latest Technology in the fight against H&N Cancer 

CHAIR: Derek Lewthwaite (England) 

Naseem Ghazali, Head & Neck Oncology, and Reconstructive Surgery, (England) 

Mr Sandeep Berry, Consultant Otolaryngologist and Head & Neck Surgeon (Wales) 

Brian Pikkula PhD, CSO Forward Science (USA) 

13:00 

- 13:30 

Just one journey amongst millions 

Paul Schneider, H&N Cancer Survivor (England) Keynote Speaker 

13:30 

- 15:00 

Quality of Life after Hemiglossectomy 

CHAIR: Ben Sheard, Survivor (England) 

Laura Marsden, Survivor (England) 

Barbara Reed, Survivor (England) 

Stef Gayhart, Survivor (USA) 

15:00 

- 16:00 

Caregiver (Pt 1) Psychological Perspectives on Caregiving 

CHAIR: Derek Lewthwaite (England) 

Dr John Donohue, Senior Clinical Psychologist 

Debbie Eason, Caregiver (Spain) 

Andrew Hyde, Caregiver (England) 

16:00 

- 17:30 

Research Projects in Head & Neck Cancer 

CHAIR: Dr Elaine Emmerson, The University of Edinburgh (Scotland) 

Arutha Kulasinghe, Spatial Biology and Liquid Biopsy Group Leader & Winner 

of our Research Award last years conference (Australia) 

Miss Kate Hulse, ENT registrar (ST3) (Scotland) 

Miss Catriona M Douglas, Consultant ENT/Head and Neck Surgeon (Scotland) 

17:30 

- 17:45 

Day 2 Closing Address 


9

THURS 4-NOV 

08:00 

- 09:00 

Lobby opens 

09:00 

- 09:15 

Day 3 Opening Address 


09:15 

- 10:00 

Saved… the jaws that are wrecked by radiotherapy - Osteoradionecrosis (ORN) 

Mr Vinod Patel, Consultant, Oral Surgery Keynote Speaker 

10:00 

- 11:30 

Proton Therapy in the battle against Head & Neck Cancer 

CHAIR: Laura Marsden, Survivor (England) 

Dr Russell Banner, Consultant Clinical Oncologist at NHS Wales (Wales) 

Arthur M. Lauretano, Chief Medical Officer (USA) 

Sue Acreman, Consulting Oncology Dietitian Case study 

11:30 

- 12:00 

The Young Tongues - empowering peer support for uncommon cancers (When 

the average age of your waiting room is 70+, but you are 31) 

Barbara Reed, Survivor (England) Keynote Speaker 

12:00 

- 13:30 

Preventing and treating side effects of Head & Neck Cancer 

CHAIR: Ben Sheard (England) 

Emma Hallam, Consultant Radiographer (England) 

Paul Burns, THOR Photomedicine, (England) 

Dr Jane Mathlin, Therapeutic Radiographer Head & Neck Cancer (Wales) 

13:30 

- 14:30 

Caregiver (Pt 2) Psychological Perspectives on Disease Impact & Coping 

CHAIR: Andrew Hyde (England) 

Dr John Donohue, Senior Clinical Psychologist 

Isabel Hill, Caregiver 

Emily Stuart RD, Nutritionist/Specialist 

14:30 

- 16:00 

New Medicine & Techniques for Head & Neck Cancer 

CHAIR: Andrew Osafo or Chris Barrow 

Mahesh Kumar, Consultant | Dr Tripat K Mahajan, Dental Training 

Dr Anthony Kong, Reader & Honorary Consultant Clinical Oncologist (England) 

Abdul Ahmed (Consultant in Oral & Maxillofacial Surgery) 

Kevin Chiu (Consultant Head and Neck Clinical Oncologist) 

16:00 

- 16:30 

2022 Conference Hosts and location announcement 

Chris Curtis, Survivor and CEO of The Swallows Charity (England) 

David Owens, 2021 Conference President 

16:30 

- 17:00 

Day 3 and Conference Closing Address 


10 


Friends of 

The Swallows 

Thank you to all our friends 

for your ongoing support 

11

The conference that 

was out of this world... 

The start of the Covid-19 pandemic seems a long 

time ago now, and it’s safe to say a lot has changed 

in the world, both bad and good! We’ve learned to 

adapt to things in new ways, developed new skills 

during numerous lockdowns and above all found a 

new admiration for those working in emergency and 

medical services. 

When planning started for the 2020 conference, we 

chose Edinburgh as our host city and looked forward to 

spending a few days in a historical city. Fast forward a few 

months and we had to make the hard decision to turn 

the conference virtual for the first time in our history. 

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New technology, plans flipped 

upside down and all hands on deck 

resulted in a smooth delivery of our 

5th consecutive conference, despite 

the challenges of covid. 

Supported by our ever-willing 

Conference President Iain Nixon 

and NHS Lothian, we were able to 

stream the conference globally on 

YouTube to an existing and totally 

new audience. 

The format of the virtual conference 

meant we were able to host a live 

in-depth panel Q&A discussion 

at the end of each day, hosted by 

Arthur Lauretano all the way from 

Boston, USA. 

Not to be scuppered by the 

covid restrictions, Chris Curtis still 

managed to produce the now 

infamous comedy sketch that 

opens each day of the conference. 

Once again we had speakers from 

various countries, and tackled 

subjects such as ‘Living with and 

beyond Head & Neck Cancer’ and 

‘The importance of collaboration 

between the patient, caregiver and 

health professionals’ amongst other 

important areas. 

Here’s to another successful 

conference in 2021. 

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2021 SPEAKERS 

The International Head & Neck Cancer Conference is delighted to welcome 

a range of health professionals, patients and carers from around the world 

to take part in seminars and keynote sessions to dive into the latest and 

most interesting topics from the last 12 months. 

Your 2021 

Conference Host 

David Owens MBCHB, FRCS(ED), MPHIL, PGDME, FFST(ED) 

CONSULTANT OTOLARYNGOLOGIST, UNIVERSITY HOSPITAL OF WALES. 

HONORARY SENIOR LECTURER, CARDIFF UNIVERSITY 

David is a Consultant ENT surgeon and has been working at 

the University Hospital of Wales and as part of the South East 

Wales Head and Neck Cancer Network since 2011. He has a 

research interest and is involved in a number of trials aimed at 

improving treatment and have been involved in studies evaluating 

survivorship issue in people following treatment for head and Neck 

Cancer. He is immensely proud that Cardiff has been chosen as 

host for the event in 2021. 

CATCH DAVID ON: DAY 1 // DAY 2 // DAY 3 

Your Conference 

President 

Chris Curtis 

HEAD & NECK CANCER SURVIVOR 

AND CEO OF THE SWALLOWS HEAD & NECK CANCER CHARITY 

“How three small words, changed my life forever.” I’m the 

founder of The Swallows Head & Neck Cancer Support Group. 

My life changed for the better after my diagnosis of Head & Neck 

Cancer. On Friday 13th May 2011 at 11am my life fell apart with my 

diagnosis. I spiralled into a depression so it was suggested I could 

get involved with the cancer support network so in November 2011 

I joined the group. Fast forward to 2021 and the Swallows Head & 

Neck Cancer Charity is thriving and supporting people around the 

world, every day. 

CATCH CHRIS ON: DAY 1 // DAY 2 // DAY 3 

Dr. Arutha Kulasinghe 

PHD (CANCER BIOLOGY). BSC HONS (MEDICAL MICROBIOLOGY) 

Dr Arutha Kulasinghe is a Peter Doherty NHMRC early career research 

fellow at the Queensland University of Technology (QUT) and the 

Translational Research Institute. Dr Kulasinghe completed his Bsc 

(Hons) in medical microbiology at the University of Pretoria (South 

Africa) in 2013 and his PhD in 2017 in the study of micro-metastatic 

disease in lung cancer. He now leads the “Spatial biology and liquid 

biopsy” group in the Cancer and Ageing Research Program (CARP) 

at QUT. 

CATCH ARUTHA ON: DAY 2 

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Barbara Reed-Fountain EVENT CONCEPT DESIGNER 

Barbara unexpectedly got diagnosed with Squamous Cell Carcinoma 

of the Tongue in early 2019 aged 31 at the Norfolk and Norwich 

University Hospital. Following a partial hemiglossectomy with partial 

neck dissection it was discovered that her stage 1 tumour had spread 

in to one lymph node. She took the decision not to proceed with 

radiotherapy, but instead opted for a watch and wait approach. After 

over two years there is no sign of disease, but regular check ups 

continue. Barbara will share her experience of the surgery, what impact 

it has had on her physical and mental wellbeing. 

CATCH BARBARA ON: DAY 2 // DAY 3 

Dr. Ali Khurram BDS, MSC, PHD, MFDS-RCS (EDINBURGH), CILT, FHEA, FDS-RCS (ENGLAND), FRCPATH 

SENIOR CLINICAL LECTURER AND CONSULTANT PATHOLOGIST 

AT THE UNIVERSITY OF SHEFFIELD 

Dr Khurram is involved in the diagnosis of Head and neck cancers on 

a daily basis and is the clinical lead for the oral pathology diagnostic 

service covering most of South Yorkshire. Prior to his training as a 

pathologist, he worked as a junior doctor in Oral and Maxillofacial 

Surgery and is aware first hand of the devastating nature of these 

cancers. He is extremely passionate about raising awareness to aid early 

detection and treatment. 

CATCH ALI ON: DAY 1 

Dr Elaine Emmerson B.SC. (HONS), PH.D. 

Elaine graduated from The University of Liverpool in 2004 with a B.Sc. 

(Hons) in Genetics, then became a research technician at the University 

of Manchester, before beginning a Ph.D. in wound healing in 2006, 

receiving her doctorate in 2010. In 2013 Elaine moved to the University 

of California San Francisco to begin a Postdoctoral Research Fellow 

position. She investigated the interaction between nerves and stem 

cells during organ development, using the mouse and human salivary 

gland as a model organ. 

CATCH ELAINE ON: DAY 2 

James Carroll FOUNDER CEO OF THOR PHOTOMEDICINE 

James Carroll is an engineer, founder CEO of THOR Photomedicine. 

THOR develops Laser and LED Photobiomodulation devices (PBM) 

that heal wounds, reduce inflammation and relieve pain. James has coauthored 

24 academic papers on PBM, 6 of them with Harvard Medical 

School and has co-authored 4 books. He has presented on PBM at the 

United Nations Global Health Impact Forum, US Congress on solutions 

to the opioid crisis and to policy advisors at the White House. 

James took PBM through the NICE guidance process and PBM is now 

recommended for preventing or treating oral mucositis. 

CATCH JAMES ON: DAY 1


Emma Hallam BSC MSC PGCERTNMP 

Emma is a Macmillan Consultant Radiographer at The Nottingham 

Radiotherapy Centre. After qualifying in 1998 she specialised in 

information and support and in 2013 dedicated her role to support 

head and neck cancer patients throughout the treatment pathway. 

In 2013 she developed and now leads the Award winning Macmillan 

Nottingham Radiotherapy Late Effects Service which has been a truly 

humbling experience. Education on late effects and the impact that 

such consequences have on a patient’s quality of life is a key element of 

Emma’s work. 

CATCH EMMA ON: DAY 3 

Miss Kate Hulse BSC MBCHB MRCS (ENT) 

Kate is an ENT registrar working in the West of Scotland. Kate was 

an undergraduate at the University of Glasgow and has since trained 

in Manchester, Inverness and Edinburgh. She has recently started a 

part-time PhD with the University of Strathclyde alongside full-time 

clinical work at the Queen Elizabeth Hospital, Glasgow. Her research is 

around health technology in the care of head and neck cancer patients. 

Her aim is to create an app which can monitor patients’ physical and 

mental well-being and feed back to the appropriate clinical teams, so 

patients get the right support at the right time. 

CATCH KATE ON: DAY 2 

Paul Schneider 2X CANCER SURVIVOR 

I’m a 45 year old dad of a beautiful 11 year old daughter, step dad to two 

great girls and now fiancee to the most incredible girl I’ve ever met. I 

have been working since I was 17 and currently work in a great role for 

a UK Telecoms engineering business. I beat Thyroid cancer at 21 and a 

parotid cancer diagnosis in December 2020 which lead to emergency 

major surgery in January, followed by 6 weeks of radiotherapy. 

Nowadays I’ve reignited my DJ hobby and regularly DJ online on the 

radio and soon to be playing in nightclubs and other venues again. I 

am a house music lover with a strong sense of family values. 

CATCH PAUL ON: DAY 1 // DAY 2 

Dr Jane Mathlin DAHP, MSC, DCR(T),IP 

CONSULTANT RADIOGRAPHER – HEAD &NECK CANCER 

I’ve been consultant radiographer for head and neck patients at Velindre 

Cancer Centre for 3 years. One of the objectives of the role was to introduce 

a late side effects clinic for patients treated for head and neck cancers. 

I have many years’ experience in the management of side effects of 

radiotherapy during after treatment and am an independent prescriber. 

I have recently completed a Professional Doctorate looking at the 

experience of taste changes during radiotherapy for head & neck cancer. 

CATCH JANE ON: DAY 3 

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Niki Shaw LIVED EXPERIENCE OF THROAT CANCER 

KEYNOTE SPEAKER, STRATEGIC MANAGER WITHIN ADULT SOCIAL CARE 

Born in Zimbabwe, she moved to England as a child and now lives in 

Scotland with her husband. In September 2020, after many months of 

tests, investigations, scans and biopsies, Niki was formally diagnosed 

with a T3 hypo-pharyngeal squamous cell carcinoma at 38 years old. 

She subsequently underwent an intensive six week course of radical 

chemo-radiotherapy as an inpatient within the renowned Beatson 

Cancer Centre (Glasgow) during the COVID-19 pandemic. Niki returned 

to work in February 2021 and, in April, a scan revealed a complete 

metabolic response to treatment. 

CATCH NIKI ON: DAY 1 

Mr Sandeep Berry MBBS;MS;DLO(RCS ENG); MRCS(ED); FRCS (ORL-HNS); MPHIL 

CONSULTANT ENT HEAD NECK SURGEON 

I am a consultant ENT head neck surgeon based at the University 

Hospital of Wales, Cardiff and Clinical director for ENT and OMFS and 

Cancer Lead for Surgical Board. I undertook my head and neck surgery 

fellowship in Melbourne, Australia and training for Trans-oral Robotic 

surgery in head neck surgery. I was instrumental in setting of the 

regional service for Transoral robotic (TORS) for head neck at University 

hospital of Wales, Cardiff and am one of the members of the team who 

deliver this service. 

CATCH SANDEEP ON: DAY 2 

Vinod Patel BDS (HONS), MORALSURG RCS ENG, PHD 

Mr Patel is a consultant oral surgeon at Guy’s & St Thomas’ Hospital 

with a specialist interest in the oral and dental management of cancer 

patients. He currently leads the Bone & Jaw Necrosis clinic which has 

managed over 450 established osteonecrosis of the jaw cases. Mr 

Patel has over 100 peer reviewed publications and completed his PhD 

assessing the impact and effect of radiotherapy in oropharyngeal cancer. 

CATCH VINOD ON: DAY 3 

Steven Cooper LARYNGECTOMEE SURVIVOR 

I am a lifelong resident of the state of Maryland, USA. I had my 

laryngectomy in February 2019 and a secondary puncture with 

Tracheoesophageal Voice Prosthesis (TEP) placement in September 

2019. Because of the early help I received from many of the wonderful 

members of the Laryngectomee community, I have been instilled 

with a heartfelt desire to assist other Laryngectomees in any way 

that I can. I’m a board member of the International Association of 

Laryngectomees (IAL), the Laryngectomee Club of Montgomery 

County Maryland (LCMC) and the Governor’s Advisory Board for 

Telecommunications Relay in Maryland, plus much more! 

CATCH STEVEN ON: DAY 1 

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Dizzy Marston FOOD WRITER AND TONGUE CANCER THRIVER 

In 2019 I was diagnosed with stage 4 advanced oral cancer. I had a 

5.5cm tumour invading my tongue. He had to go, but with it he also 

took my tongue. I was told that I would never eat or speak again, 

unless I used a machine to speak and a tube into my stomach for liquid 

nutrition to be pumped through. I refused to accept that my life would 

be that drastic, so I pushed myself to learn to swallow, speak and then 

finally eat. After many long months of tears, frustration, anger, grit 

and determination, I did it - I achieved my objective! In 2021 I launched 

‘Eating with Confidence’, a dedicated cook book to help others like me. 

CATCH LAURA ON: DAY 2 // DAY 3 

Dr Tripat K Mahajan 

Tripat studied dentistry at King’s College London and graduated 

in 2018. She is currently in a Dental Core Training pathway, gaining 

further experience in oral and maxillofacial surgery, restorative and 

orthodontic dental specialties. She enjoys keeping up to date with the 

latest research and has regularly presented at and attended a variety 

of dental conferences. Whilst working in maxillofacial surgery, she saw 

how mouth cancer can have a huge effect on oral wellbeing and the 

impact it can have on quality of life. She was appointed as a clinical 

ambassador for the Mouth Cancer Foundation in January 2021. 

CATCH TRIPAT ON: DAY 3 

Tanja Båge 

On March 16th 2020 I was diagnosed with laryngeal cancer. My 

cancer journey really began approximately 2 years before I was 

eventually diagnosed when I first started to notice subtle symptoms 

of breathlessness and wheezing. After 2 years of mis-diagnosis I 

eventually received my diagnosis – adenoid cystic carcinoma in my sub 

glottis and trachea. 1 week later I was heading into major life changing 

surgery. During surgery they did a total laryngectomy and neck 

dissection. I lost the connection between my nose, mouth and lungs 

and gained a permanent stoma to breathe through on my neck. I lost 

my natural voice. Losing my voice has felt like losing a limb. It is a part 

of me that’s gone forever now. I’m here today though, living life and 

thankful for every single day. 

CATCH TANJA ON: DAY 1 

BDS (HONS), MFDS RCSENG, MCGDENT, 

PGCERT DENTED 

Andrew Hyde BSC, PGCE, LPSH 

HEAD & NECK CANCER PATIENT CAREGIVER 

Andrew has direct experience of being a caregiver for a Head and Neck 

Cancer patient. His wife underwent surgery in 2015, 2017 and then a 

major operation in 2019. She relied upon him and he had to learn quickly. 

He has, through The Swallows Head and Neck Cancer Charity, become 

an advocate for caregivers. Head & Neck Cancer patients depend upon 

Caregivers looking after ourselves so that they are able to care for them! 

CATCH ANDREW ON: DAY 2 

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Daniela Esteves HEAD OF NURSING AT ATOS CARE – HEAD 

AND NECK SPECIALIST NURSE, CRITICAL CARE NURSE BACKGROUND 

Daniela has been an Intensive Care Nurse within the NHS for several 

years before setting up a community service with Atos Care for patients 

with laryngectomy and tracheostomy stomas. Daniela has worked 

as a field Nurse in London and the southeast. She has supported 

patients at home following surgical treatment of laryngeal cancer 

(laryngectomy) and patients who required a tracheostomy tube as part 

of their treatment and recovery. Daniela now leads a team of specialist 

Head and Neck Nurses who care for patients with a neck stoma in the 

community, covering most of England and Wales. Daniela’s team works 

closely with NHS clinicians to support each patient’s transition from 

hospital to home with managing their neck airway. 

CATCH DANIELA ON: DAY 1 

Dr John Donohue CHARTERED CLINICAL PSYCHOLOGIST 

Dr Donohue gained his Undergraduate Degree in 1998 from University 

College Worcester, UK and Montclair State University, New Jersey, 

USA. Following posts in forensic, learning disabilities and child mental 

health, he gained his master’s degree in Counselling Psychology with 

family therapy and primary care mental health settings experience. 

In 2004, he was successful in his application to the clinical psychology 

course offered by the University of Coventry, and gained his doctoral 

accreditation as a clinical psychologist in 2007. Upon qualification, he 

secured a post in Russells Hall Hospital UK, working primarily in the 

oncology and clinical haematology wards in the hospital. In 2018 he 

returned to his native Ireland and following a short phase in private 

practice, became employed as senior clinical psychologist and centre 

lead for Cancer Care Wests’ satellite service in Co. Donegal. Dr Donohue 

is an avid explorer having travelled as far as Antarctica, Kilimanjaro, 

Base Camp Everest and Peru. 

CATCH JOHN ON: DAY 2 // DAY 3 

Dr Russell Banner 

CONSULTANT CLINICAL ONCOLOGIST BASED IN SOUTH WALES 

Russell’s undergraduate training was at Christ’s College, Cambridge 

and then at Guy’s, Kings and St. Thomas’ Medical School in London, 

qualifying in 2002. He started his speciality training in Canterbury in 

2007 and then transferred to complete his training in South Wales 

gaining Fellowship of the Royal College of Radiologists in 2010. Russell 

took up his post as a Consultant Clinical Oncologist in the South West 

Wales Cancer Centre in 2013. 

He is enthusiastically research active with Principal Investigator roles 

in Swansea for a number of UK-wide randomised clinical research 

radiotherapy trials. Russell currently specialises in tumour sites for head & 

neck and non-melanoma skin cancers. He is trained in the use of proton 

beam therapy, treating patients in the Rutherford Cancer Centre, South 

Wales since it opened in 2018 and looks forward to further developing 

the evidence base for this, including within the ‘TORPEdO’ randomised 

clinical trial. Russell was born in London, though his mother ensured that 

his first rugby shirt was Welsh! 

CATCH RUSSELL ON: DAY 3 

19


Abdul Ahmed 

After completing both Medical and Dental degrees, Mr Ahmed 

completed his surgical training at The Royal London, University college, 

Great Ormond Street, and Northwick Park hospitals. Mr Ahmed has a 

very innovative practice using the latest technologies in head and neck 

reconstructive planning, the use of sentinel node surgery in oral cancer 

and Trans Oral Robotic Surgery. He has a strong interest in teaching 

and training. He is an Honorary Senior Clinical Lecturer at Queen Mary 

University of London. Educational supervisor for the London School of 

Surgery, and runs regular courses in Reconstructive Surgery, ATLS, and 

Microvascular surgical techniques. Mr Ahmed is part of the faculty for 

the Griffin institute for medical research, they provide a wide variety of 

course, all aimed at improving the skills and experience of healthcare 

professionals to advance patient care. As a clinical researcher, he is 

involved in several clinical trials in oncology, and regularly presents in 

international meetings. 

CATCH ABDUL ON: DAY 3 

CONSULTANT IN ORAL & MAXILLOFACIAL SURGERY SPECIALISING 

IN RECONSTRUCTIVE HEAD AND NECK SURGERY 

Naseem Ghazali BDS, MBBS, MSC, MD, DOHNS, FDSRCS, FRCS(OMFS) 

Miss Naseem Ghazali is a Consultant Oral & Maxillofacial Surgeon, 

sub-specialsing in Head and Neck Oncology & Reconstruction, at Royal 

Blackburn Teaching Hospital. Miss Ghazali is a credentialed da Vinci 

Robot surgeon, and has pioneered minimally invasive surgery on the 

robotic platform for H&N Cancer at her hospital. She has successfully 

established the Transoral Robotic Head & Neck Surgery (TORS) Service 

for East Lancashire NHS Trust within the first year of her appointment 

in 2016. This service is currently the only TORS service for the North- 

West of England. During this time, she has developed a novel approach 

for scarless, benign salivary gland surgery on the robotic platform. 

CATCH NASEEM ON: DAY 2 

Dr Kevin Chiu 

CONSULTANT HEAD AND NECK CLINICAL ONCOLOGIST AT MOUNT VERNON 

CANCER CENTRE 

Kevin specialises specifically in complex radiotherapy, immunotherapy 

and chemotherapy in the management of head and neck cancer. 

Dr Chiu obtained his medical degree at the University of Manchester 

in 2005. He gained his FRCR qualification in clinical oncology in 2014 

and went on to complete a senior head and neck clinical and research 

fellowship at Princess Margaret Cancer Centre in Toronto in 2017. Since 

2019 he has been the Clinical Lead for all Radiation Services at Mount 

Vernon Cancer Centre, working and collaborating with the London 

Radiotherapy Network to improve radiotherapy services. Dr Chiu’s own 

clinical practice covers a big geographical area with patients referred 

from Hertfordshire, Bedfordshire and Northwest London. Dr Chiu is 

the Research Lead for head and neck research at Mount Vernon. His 

interests include optimising radiotherapy techniques to improve patients’ 

outcomes and quality of life, Artificial Intelligence and Clinical Trials. 

CATCH KEVIN ON: DAY 3 

20 


21 

Miss Catriona M Douglas BSC (MED SCI), MBCHB, MD, FRCS 

I am a Consultant Head and Neck Surgeon based at the Queen Elisabeth 

University Hospital, Glasgow, UK. I undertook my clinical training in 

Glasgow and the West of Scotland before completing a 1 year fellowship 

in Head and Neck Surgical Oncology at the University of Toronto/Princess 

Margaret Oncology Hospital, in Toronto, Canada. I have a research 

interest in Head and Neck cancer and completed my MD in “Biomarkers 

that predict treatment response in Head and Neck Cancer” at the 

University of Manchester. I have a strong research interest in Head and 

Neck cancer, and have ongoing projects in translational research and 

quality of life. I feel very privileged to work with and treat H&N Cancer 

patients, and by doing clinical research I hope that it will improve the 

quality of care and life that these patients have. 

CATCH CATRIONA ON: DAY 2 

Isabell Hill CERTIFICATE OF PRIMARY EDUCATION 

HEAD & NECK CANCER PATIENT CAREGIVER 

Isabell worked in the education sector as a primary school teacher and 

later as an Adult Literacy Tutor. She also spent some years in the Civil 

Service but has since retired. She has been a caregiver for my husband 

since 2013, and she is a valuable member of The Swallows Head & Neck 

Charity Caregiver Project Group. 

CATCH ISABELL ON: DAY 3 

Yvonne McClaren 

AUTHOR, COACH AND FOUNDER OF THE NO FEEDING TUBES MOVEMENT & 

THE MIND FOOD BODY PROGRAM 

The program is specifically designed to assist others with dysphagia and 

a peg feed tube transition back to oral eating. Working as an executive 

in the not-for-profit sector and with a love for travel, Yvonne has lived in 

Sydney, Melbourne, Bangkok, Kuala Lumpur and for a few months in 

Vietnam when she was diagnosed with Oropharyngeal Cancer (Tonsil 

Cancer) in November 2018. Yvonne went on to have a third of her tongue 

removed, both tonsils, 30 lymph nodes and 30 chemoradiotherapy 

sessions. Yvonne also had a PEG tube feed for 15 months. Yvonne is a 

passionate advocate for using real food to transition back to oral eating. 

CATCH YVONNE ON: DAY 2 

Andrew Osafo BDS DIP SED FIADFE 

Andrew graduated from Barts and the London School of Medicine 

and Dentistry in 2003 and works in primary and secondary care. He 

has a special interest in Minimally Invasive Dentistry, Facial Aesthetics, 

Pain free dentistry and Orthodontics. Andrew is also passionate about 

health & aesthetics and enjoys helping people get a confidence 

boost. Dr Osafo tests products, lectures and writes articles for various 

organisations. Andrew is an ambassador for the Mouth Cancer 

Foundation. Dr Andrew received the International Academy for Dental 

Facial Esthetics Fellowship. Fellowship in the Academy for Dental Facial 

Esthetics is by invitation to those members of the dental industry who 

have distinguished themselves. 

CATCH ANDREW ON: DAY 3 

21


Stephanie Gayhart REGISTERED NURSE (CRITICAL CARE/ICU) 

In August 2019, Stephanie was 37 years old and working as an RN 

when she found the lump on her tongue. After being told a few 

times she was too young and healthy for the worst, an ENT ordered 

a CT scan and referred her the next day to a specialist at University 

of Maryland in Baltimore, MD, USA. She was diagnosed with Stage III 

oral tongue cancer with no predisposing risk factors and underwent 

a hemiglossectomy with radial free-flap reconstruction (using cow 

collagen, Integra, in a two-step healing process for the flap donation 

site), partial neck dissection, and temporary tracheostomy placement. 

About two months later she completed 6 weeks of IMRT. She’ll speak 

about how the diagnosis and treatment side effects have affected her 

quality of life, including her mental and physical well-being and ability 

to work. 

CATCH STEPHANIE ON: DAY 2 

Mark Lawler 

ASSOCIATE PRO-VICE CHANCELLOR, PROFESSOR OF DIGITAL HEALTH & CHAIR 

IN TRANSLATIONAL CANCER GENOMICS AT QUEEN’S UNIVERSITY BELFAST 

His patient centred research and policy work has had international 

impact, recognised by a number of national and international awards. 

He is Scientific Director of DATA-CAN, the UK’s Health Data Research 

Hub for Cancer. DATA-CAN’s work on Covid-19 and cancer first 

highlighted the significant impact of the pandemic on cancer services 

and cancer patients. He co-chairs the European Cancer Organisation’s 

Special Network on Covid-19 and Cancer and leads their TimeToAct 

Campaign to ensure that Cancer doesn’t become the Forgotten C in 

the Fight against Cancer. 

CATCH MARK ON: DAY 1 

Lauren V. Wood, M.D. 

CHIEF MEDICAL OFFICER 

Dr. Wood joined PDS Biotech as Chief Medical Officer in February 2019. 

She has overall responsibility for clinical development of the novel, 

immune activating Versamune® platform product pipeline targeting 

HPV-related pre-cancer and advanced cancers as well as a broad 

spectrum of solid tumors. With 30 years of extensive clinical research 

experience at the National Institutes of Health, Dr. Wood most recently 

was the Clinical Director of the Vaccine Branch, Center for Cancer 

Research, National Cancer Institute (NCI), where she oversaw the 

translational development of immune-based therapies for both cancer 

and HIV infection and was a co-inventor of two patented therapeutic 

cancer vaccine platforms targeting the TARP and HER tumor antigens. 

CATCH LAUREN ON: DAY 2 

22 


23 

Sue Acreman 

RD MSC FBDA, DIP DIETETICS, MSC INTERPROFESSIONAL STUDIES(HEALTH), 

POST GRADUATE DIPLOMA IN RESEARCH METHODS, ISM DIP. MANAGEMENT 

Sue has been an HCPC registered Dietitian for 47 years and has worked 

in Oncology dietetics for over 30 years, she is a fellow of the British 

Dietetic Association and a member of its specialist oncology group. 

Sue is the oncology dietitian for Rutherford Cancer treatment centres 

at both Thames Valley and South Wales. Working within the MDT she 

provides nutritional support to patients during their treatment and 

beyond. Her aim is to help patients meet their nutritional requirements 

and maintain their weight which helps improve outcomes and 

minimise their risk of developing nutrition-related complication. 

CATCH SUE ON: DAY 3 

Brian Pikkula 

PHD IN BIO-OPTICS, CHIEF SCIENTIFIC OFFICER AND CO-FOUNDER OF 

FORWARD SCIENCE 

Brian received his bachelor’s degree in biomedical engineering from 

Louisiana Tech University and his Ph.D. in bio-optics/bioengineering 

from Rice University. Brian has more than 15 years of biomedical 

research and medical device development experience. Brian’s career 

began at M.D. Anderson Cancer Center as Co-Director of a multi-center 

clinical study. He went on to work as a Senior Development Scientist 

for Remicalm LLC. He also previously worked as a Manager at Medical 

Metrics before launching Forward Science with fellow engineer Robert 

J. Whitman in 2012, with the goal of changing patients’ lives through 

innovative cancer screening technologies. 

CATCH BRIAN ON: DAY 2 

Arthur M. Lauretano MD, MS, FACS. 

OTOLARYNGOLOGIST HEAD AND NECK SURGEON, 

MEDICAL DIRECTOR OF OTOLARYNGOLOGY MULTIDISCIPLINARY CLINIC 

Arthur is an otolaryngologist head and neck surgeon in Lowell, 

Massachusetts. Board certified in Otolaryngology and in Clinical 

Informatics, he serves as the Medical Director for the Lowell General 

Hospital Multidisciplinary Head and Neck Clinic and is the former Chief 

Medical Officer of Circle Health at Lowell General. He also teaches at 

Harvard Medical School, Boston University School of Medicine, and Tufts 

University School of Medicine. He is dedicated to quality improvement, 

evidence based medicine, and the use of clinical informatics to maximize 

the benefits of the health care system. 

CATCH ARTHUR ON: DAY 2 // DAY 3 

Ben Sheard STAGE 4 CANCER SURVIVOR 

Diagnosed with Stage 4 cancer in Sep 2017, Ben was originally only 

given 50% chance of survival. At the start of treatment his cancer was 

identified in the left tonsil, throat, roof of mouth and lymph nodes. He 

went through the sadly all too familiar route of having a PEG fitted, 

operations, chemotherapy and radiotherapy and all the challenges they 

bring. Despite the challenges Ben’s drive, determination, and inherent 

desire to grab life “firmly by the balls” meant he won a new contract 

and returned to work in January 2018. 

CATCH BEN ON: DAY 2 // DAY 3 

23


Derek Lewthwaite ADVOCATE FOR HEAD & NECK CANCER CARERS 

Derek is 66 years old and retired, having spent most of my working life 

in sales and marketing roles for various manufacturing and distribution 

companies in the UK. His wife was diagnosed with mouth cancer in 

October 2018 and it was at that time he became aware of The Swallows 

Charity as well as the start of his journey as a carer. 

It was a relatively short journey as his wife lost her fight against the 

cancer in May 2019 but it was packed with ‘highs and lows’ and ‘good 

and bad’ experiences of a typical head and neck cancer carer in the UK. 

It is from those experiences that he decided to become an advocate 

for carers in an effort to try to improve both communication with and 

acceptance of head and neck cancer carers within the treatment 

system. 

CATCH DEREK ON: DAY 2 

Freya Sparks BA(HONS), PGDIP, MRES, MRCSLT 

Freya is a Clinical Specialist Speech and Language Therapist at Barts 

Health, where she has led the speech therapy service for Head and Neck 

Oncology and ENT conditions and provides advanced clinical practice. 

Freya was awarded an NIHR MRes studentship in 2014, and subsequently 

an NIHR pre-doctoral bridging award. She currently holds a Barts Charity 

AHP Doctoral Fellowship and is undertaking a PhD at City, University of 

London. Her research interests are embedded in clinical practice and 

focussed on the rehabilitation of communication and swallowing after 

head and neck cancer treatment. Freya’s doctoral study is the VITAL 

project, which centres on the development and feasibility testing of a 

novel voice therapy approach for people with total laryngectomy. 

CATCH FREYA ON: DAY 1 

Jane Thornton 

BSC (HONS) SPEECH PATHOLOGY AND THERAPY MANCHESTER UNIVERSITY 

Jane has been Clinical Lead Speech and Language Therapist for Head 

& Neck Cancer/Clinical Voice Disorders at Sheffield Teaching Hospital 

NHS Foundation Trust since 1996. In that time she has been involved 

with developing the service to adults across the entire Head and 

Neck cancer patient pathway. In addition to her day job Jane is also a 

Honorary Lecturer at Sheffield University, National Adviser for Royal 

College of Speech and Language Therapist, Expert Adviser for National 

Institute of Clinical Excellence and has contributed to the writing of 

numerous national documents and guidelines including NICE - cancers 

of the UADT, National Cancer Action Team - rehabilitation pathways 

and workforce planning documents. 

CATCH JANE ON: DAY 1 

24 


25 

Marianne Kooijman 

LICENSED LARYNGECTOMEE VOICE TRAINEE AND CANCER SURVIVOR 

My journey started in 1989. I had breathing problems which got worse 

until I had to be hospitalized. They found a T4 tumour under my right 

vocal cord and in November 1989 I had my laryngectomy. 6 weeks after 

surgery I spoke my first words and I never stopped speaking. I have 

served on the board of local clubs, The Dutch Association as first female 

President and for the International Association for Laryngectomees. I 

am a licensed laryngectomee trainee which means I am allowed to give 

voice lessons to other laryngectomees. 

CATCH MARIANNE ON: DAY 1 

Anthony Kong MBBS (LONDON) MRCP (UK) FRCR (CLINICAL ONCOLOGY) PHD 

Anthony read medicine at Barts and The London School of Medicine 

in London and undertook clinical oncology training at Barts and The 

Royal Marsden Hospitals after his general internal medicine training. 

He did his PhD research at CRUK London Research Institute Lincoln’s 

Inn Laboratories, and received a PhD from University College London. 

Following his PhD, he was awarded a clinical scientist fellowship and 

became a group leader at University of Oxford and an honorary NHS 

consultant at Oxford Cancer Centre in 2008. He took up a clinical senior 

lecturer position at the University of Birmingham in January 2015, and 

since July 2019, he has been a clinical reader at King’s College London 

and an honorary NHS Consultant in Clinical Oncology at Guy’s and St 

Thomas’ NHS Foundation Trust. 

CATCH ANTHONY ON: DAY 3 

Debbie Eason 

CAREGIVER CURRENTLY LIVING IN SPAIN 

In 2002 we relocated to Spain and have thoroughly embraced the 

Spanish way of life. In February 2021 Stuart was diagnosed with floor 

of mouth cancer and our lives changed dramatically. He had major 

surgery which was then followed up with 33 sessions of radiotherapy. A 

month after the treatment ended, Stu developed another cancerous 

tumour which then resulted in a second neck dissection and the 

removal of more lymph nodes. His Oncologist recommended 

another course of radiotherapy along with chemotherapy, but having 

researched the benefits and also taking into consideration the side 

effects of both, he decided against the treatment. He is now being 

monitored with regular CT scans and appointments with his Oncologist 

and Surgeon. Our daughter lives locally and has been amazing 

throughout, so strong and supportive. We don’t have any extended 

family here but have received support from our friends and a local 

Cancer Care organisation who have been amazing. It’s been a tough 

year, but we’re getting there and are grateful to our medical team, 

family and friends for all their love and support. 

CATCH DEBBIE ON: DAY 2 

25

Preventing Oral Mucositis 

A debilitating cancer therapy side effect 

Oral Mucositis is a common side effect of chemotherapy and radiotherapy 

for cancer. Rapidly divided epithelial cells lining the gastrointestinal tract 

break down, leaving the mucosal tissue open to ulceration and infection. 

These symptoms usually begin 1–2 weeks after starting cancer treatment. 

Oral mucositis is debilitating. It can lead to several problems, including pain 

and increased risk of infection due to open sores in the mucosa. It has a 

significant effect on the patient’s quality of life and can be dose-limiting 

(i.e., requiring a reduction in subsequent chemotherapy doses, or a delay in 

radiotherapy treatments). 

Signs and symptoms of mucositis include 

- Mouth sores on the gums or tongue 

- Soreness/pain in the mouth/throat 

- Red, shiny, or swollen mouth/gums 

- Feeling of dryness, mild burning, or pain 

when eating food 

- Blood in the mouth 

- Difficulty swallowing or talking 

- Soft, whitish patches or pus in the 

mouth or on the tongue 

- Increased mucus or thicker saliva 

Preventing Oral Mucositis 

Photobiomodulation (PBM) reduces severity and duration of oral mucositis. 

The effect of Photobiomodulation (PBM), previously known as Low Level 

Laser Therapy (LLLT), on oral mucositis (by laser or LED) has been reported 

in 47 randomised controlled clinical trials. These include patients undergoing 

chemotherapy, radiotherapy or haematopoietic stem cell transplantation 

(HSCT) in both paediatric and adult populations. 

The National Institute for Health and Care Excellence have 

produced an Interventional Procedure Overview of PBM for 

preventing or treating oral mucositis caused by radiotherapy or 

chemotherapy—IPG615. 

26 


What is photobiomodulation? 

Photobiomodulation (PBM) is the application of light, in the red and near 

infrared range, to tissues to reduce inflammation and improve healing. PBM 

increases cellular energy (ATP) and reduces free radicals (oxidative stress) 

stimulating the body’s natural healing process. Previously, it was primarily 

delivered with lasers but recent developments allow for safe and effective 

treatments with LED lights integrated into proprietary probes designed for 

oral treatments. 

What is the treatment like? 

The treatment is very gentle and has even been used by St Jude Children’s 

Research Hospital on paediatric patients. 

An ice-lolly shaped treatment device (the THOR LED Lollipop) is inserted 

into the mouth for 1 minute—first on top of the tongue and then beneath 

the tongue. Next, a flat circular treatment head (the THOR LED Cluster) is 

placed first on each cheek and then the lips—treating each site for 1 minute, 

totalling 5 minutes of treatment. 

Contact THOR Photomedicine 

Call us on 01494 797 100 or email paul.burns@thorlaser.com to learn more 

27

Welcome to 

The Swallows 

Head and Neck Cancer Charity 

The Swallows Charity supports all people affected by head and neck cancers; patients, caregivers, 

friends or relatives. The patient is the focus for support, help and signposting. However the role of 

caregivers and others is vital too, with their own support needs often overlooked. It is our intention 

for every person affected by head and neck cancer to have access to support at the point they 

need it, by the method of their choice, on a 24/7 basis. This could be by telephone, email or social 

media. This is the key growth area for The Swallows and we have expanded our global reach to 

provide resources, enabling this 24/7 support to be freely available to all people affected by head 

and neck cancers. 

It is a proven fact that early diagnosis saves lives. Hence it is important to educate and inform 

people globally about a) how to avoid such cancers, and b) how to look for warning signs that 

allow for early diagnosis and treatment. 

Our support groups 

Currently we have several Support Groups in the UK and our unique virtual international monthly 

patient and caregiver meeting. Our aim is to increase the number of support groups over the coming 

years. The approach we use successfully is to provide a monthly meeting at which both patients and 

caregivers can attend to discuss their issues. They are given the opportunity to talk about these matters 

collectively or separately in a safe environment. 

Our experience and feedback gathered from attendees is that they value this time spent together to 

talk about their own specific issues in an open and honest way and to receive support. We find that 

separating patients from caregivers for some of this time facilitates a more open and frank exchange 

which results in people in similar situations being able to offer much valued support and guidance. 

Feedback since 2011 has shown that this approach works very well, and this is the model that we are 

now seeking to use with all Swallows Support Groups in the UK and overseas. 

Chris Curtis 

Chief Executive Officer, 

Head & Neck Cancer Survivor, 

Honorary Senior Lecturer within the 

School of Health Sciences (UCLan), 

The Swallows H&N Cancer Support Charity 

chris@theswallows.org.uk 

www.theswallows.org.uk | info@theswallows.org.uk 

justgiving.com/theswallows 

24 

Patient an 

support li 

07 

725 

theswallowscancersupport 

@swallowsgroup 

28 


Our main activities: 

• Providing a wide range of patient & caregiver information books to patients, caregivers, relatives, 

GPs, professors, surgeons, clinical nurses, chemists, and dentists. We have a wide range of 

material covering awareness of Head and Neck cancer, early detection, signs and symptoms 

of what to look for, self-screening information and human papilloma virus (HPV) awareness 

material. 

• We offer a unique & dedicated 24/7 support phone line, operated by patients & caregivers for 

the patient & caregiver. (This is not a call centre). 

• Facilitating an annual Head and Neck Cancer Conference at which guest speakers and selected 

patients and caregivers from around the world can discuss key topics, key innovations in treatment 

methods, greater cooperation between health professionals and how to improve a patient’s cancer 

journey. 

• We attend overseas conferences to help us raise awareness of our activities to key potential 

partners in major industries. 

• Within the UK we are involved with health professionals at all levels to help them become more 

aware of the patient and caregiver journeys. 

• On 27th July each year we participate in World Head and Neck Cancer Day to help generate 

awareness to a more global audience. 

• We participate at Health and Well-Being events, often providing free oral health checks, in order 

to highlight the dangers of smoking, alcohol consumption and general lifestyles in the fight 

against head & neck cancer. 

• Our website and social media platforms help to educate patients and caregivers 

with current and relevant information for head and neck cancers. 

• The Swallows Charity shop’s primary purpose is to raise funds. This 

brings huge value to the local community which in turn supports local 

volunteers and helps boost the local high street. 

/7 

d Caregiver 

ne service: 

504 

059 

Support for all affected by 

Head and Neck 

Cancer 

29

Caregivers 

are important and should not be forgotten… 

As a charity that supports patients through their journey, we never forget our caregivers, 

and over the last 12 months we have worked on raising the awareness and importance of 

our caregivers. 

We are looking to launch a unique leaflet written by caregivers, for caregivers offering 

help, support, useful tips and sign posting for the caregiver. These will be widely available 

through all hospitals and at the point of patient diagnoses. 

Along with the new leaflet 

we are looking to be able 

to offer caregivers ‘a hug in 

a box’. This will consist of 

some nice goodies to help 

them on their journey. 

In 2022 it is our plan to 

continue to offer support 

for caregivers via our 24/7 

support line (not a call centre 

or message service). We 

actually take the call at any 

time, any day, whenever 

someone may need it. 

We will also continue our 

regular caregiver meetings 

to help them discuss their 

challenges, ideas, successes 

and so much more. 

A caregiver once said, “We are on the same journey 

but on different tracks.” 

We need to lessen the gap on the tracks and make the journey as one. 

If you are interested in getting involved in our caregiver work, 

please contact Sharon: sharon@theswallows.org.uk 

or call: 07572 493 874. 

Sharon Curtis 

Caregiver 

30 


If you would like to sponsor the leaflet 

or goody box then please contact 

sharon@theswallows.org.uk 

or call 07572 493 874. 

Being a caregiver is the 

most satisfying, rewarding 

& amazing thing to do, but 

hardest job I ever did. 

The days when nobody sees the 

struggle are so dark and emotionally 

draining. 

I’ve found myself crying in a corridor 

while she slept. (But still in sight) 

Screaming in the car where nobody 

could hear me. 

And I wouldn’t change a day she was 

alive (my daughter) but I would change 

asking for help. 

I wanted to do everything 

myself. And I did for 7 

years. “ 

Cheryl 

Caregiver to Emma my angel 

Our 24/7 Patient and Carer support line 

service is answered by a real person 

31

Claire’s 

Carers Story 

My Mum was diagnosed with tonsil cancer a 

year ago this month and it has been quite a roller 

coaster of a journey. I helped to write her story 

some months ago, but to write my own is so much 

more difficult as it triggers so many feelings inside 

me, which I am trying to get better at managing! 

I suppose the first thing I thought about when I was 

asked to write this story was the fact that it took 

a bit of persuading that I was indeed a carer! In 

my mind I have done what any daughter would do 

and I have supported my Mum through her cancer 

journey and will continue to do so for as long as 

she needs me and however much she needs me! I 

never saw it as being a carer, I just saw it as being 

there for my Mum! 

My Mum has been a very lucky lady - she was 

diagnosed at an early stage thanks to our eagle eyed 

hygienist and fantastic dentist and was lucky enough 

to be offered robotic surgery. The outcome has been 

amazing to say the least and for a 78 year old woman her 

recovery to date has been phenomenal. 

Mum had no symptoms so for us to be told she had 

cancer was a huge shock. She had smoked for 55 years 

and I knew that she wouldn’t get away with it but we 

didn’t see this one coming. Her diagnosis completely 

floored me and what made it worse was the fact that she 

is the person I talk to about worries in life and I couldn’t 

tell her about these worries as she had enough of her 

own to cope with. I had no outlet and I struggled terribly. I 

couldn’t eat and couldn’t think straight. I cried most days 

and some days I sobbed rather than cried and I felt like I 

wasn’t coping at all. The way I felt scared me. 

Mum’s initial proposed treatment was radiotherapy and 

when I Googled the side effects it was then that I went 

into meltdown...as far as I was concerned my healthy 

Mum would undergo gruelling treatment which would 

severely affect her quality of life and leave her with life 

long side effects. She had no concept of the difficulties 

she was facing and so I kept it away from her - she had 

enough to worry about. I spent hours and hours every 

day and every night scouring the internet for answers and 

positive stories and I drove myself daft with it all. 

“I kept all of this from Mum and it was 

difficult to even look at her at times. I 

reached out to various cancer support 

charities for information but was left 

feeling like there was a lack of honesty; 

that they were minimising the situation 

and I really believed I couldn’t trust them.” 

Then I found the Swallows! My first telephone 

conversation with Chris Curtis was the first honest and 

frank discussion I had been afforded by anyone. He told 

me exactly how tough Mum’s journey could potentially 

be but he gave me positivity and lots of ideas. He 

also told me about his own story and it gave me hope 

for the first time since Mum’s journey began. 

He managed to help me to have a night of respite from 

the fear, anxiety and worry that had engulfed me since 

radiotherapy was discussed as mums treatment option. 

At the early diagnosis appointments I felt rushed and 

as if nobody afforded us time to talk through options, 

prognosis and side effects. Mum was shipped in and out 

To read more patient a 

32 


of rooms with little explanation and not much empathy 

and I felt like I was in the way and not particularly 

welcome. I hated it and I felt like I was an inconvenience 

asking questions but this was my Mum’s life and I 

was going to fight for it. Mum sat there in a daze at her 

appointments and was practically mute which was very 

unusual and also so sad to see. Not only that I could 

not believe that there were no alternatives. I remember 

at an oncology appointment having a support leaflet 

thrust into my hand and being told I needed help as 

my reaction was “extreme”!! Extreme? This was my 

Mum! They hadn’t seen the half of it yet! I cried at that 

appointment, rudely referred to radiotherapy as “being 

zapped half to death” and begged for an alternative. 

That was the first time we heard the words “robotic 

surgery”. To this day I don’t think that Mum would have 

been offered this fantastic treatment had it not been for 

my “extreme” reaction so I don’t regret it one bit! 

Mum waited only 3 weeks from her first meeting with 

her surgeon until she had her operation. It was over 

the Christmas period and it was a difficult time for us all 

and I spent New Year’s Eve at home with my husband 

in floods of tears. He was disappointed in me and 

my demeanour but there was simply nothing I could 

do. Mum spent new year with others in our family and 

she was certainly not herself either. I spent my time 

researching the surgery, it’s success rate, the side 

effects and the benefits - my friends have often joked 

that I could probably have a good go at doing it myself 

but I felt that I needed to be prepared! 

Mums recovery from surgery was fast and pretty 

impressive! The first few weeks were not so easy. On 

the day of her surgery I waited all day for the call to say 

she was out of theatre and spent most of it crying!! I 

was pathetic to say the least! The staff at the hospital 

were amazing and continue to be amazing today - we 

have been so lucky to have been referred to them. I 

was juggling work and caring for mum and she had 

moved into our house to recuperate. She cried with 

pain on several mornings (she wasn’t prepared for the 

pain of tonsil removal as an adult) and her eating took a 

little while to get back to normal. I was quietly confident 

but so afraid. It was like having a new baby - every 

sound in the night I was up and checking on her. I was 

assisting with pain relief in the night and during the day 

and just kept praying that she would recover fully. 

Fast forward to almost 11 months later and here we 

are. Mum is currently free of disease and attending 

clinic every 6 weeks. Do I class myself as a carer 

now? I do and I am getting used to the concept of it! 

I am proud of Mum and her 

amazing recovery and I am 

proud of having the strength 

to speak up for her during that 

early appointment (despite how 

unpopular I felt when I did it!). We 

often talk about how different life would 

have been if we hadn’t have met Miss Ghazali and the 

wonderful team at Royal Blackburn Hospital and if Mum 

hadn’t have been eligible for the surgery. Somebody 

finally listened to what we had to say and understood 

my view point. 

Claire’s Mum, Audrey, has written her own story. 

Find it online on The Swallows website. 

I could write and talk for hours about this subject but I 

really hope that going forward carers are recognised 

as cancer sufferers but in a different way. I truly believe 

that Mum coped with her illness way better than I did 

and think she continues to do so. Watching her go 

through the process she been through has been the 

most difficult thing I have encountered in my life so far. 

Sadly I don’t think that the fear of it returning will ever 

go away but her surgeon said something which really 

helped us both. “You are now back to being the same 

as everyone else, wondering and hoping that you do 

not get cancer.” However you are lucky enough to see 

a specialist on a regular basis to be checked out and 

not everyone gets that! 

That way of looking at it has stuck with us both and 

along with my family we help Mum to enjoy every 

minute of life that the robot gave to her. We make sure 

she makes the most of the quality of life that she has 

been lucky enough to retain. 

Caring for her has been tough but it’s worth it! 

nd carer stories or find out more about Head & Neck Cancer support visit: www.theswallows.org.uk 

33

Share your 

cancer story 

We’re looking for patient and carers from 

around the world to feature in our next 

patient book and on our website. 

Please send approximately 500 words and supporting images to: 

info@theswallows.org.uk 

24/7 34Patient and Carer support line VIRTUAL service: HEAD 07504 & NECK 725 059 CANCER www.theswallows.org.uk 

CONFERENCE 2021

We are pleased to meet you at the 

2021 Virtual 

Head & Neck 

Cancer Conference 

Seminar 

New Medicine & Techniques 

for Head & Neck Cancer 

Sponsored by Sensius 

35

Radiotherapy treatment: 

When patients undergo radiotherapy 

treatment, they often experience a range 

of side effects including (but not limited to); 

xerostomia (dry mouth), mucositis (mouth 

ulcers), taste changes and changes to 

secretions (producing thick saliva). These 

side effects can impact eating and drinking, 

a person’s appetite and interest in food. 

Throughout radiotherapy treatment the 

side effects that a patient experiences can 

change and so the diet can be adapted as 

treatment progresses. 

Pain 

Including a variety of foods in the diet is 

important to provide nutrition. Patients 

are advised to focus on their calorie and 

protein intake to help maintain their weight 

and muscle mass. If the radiotherapy is 

causing pain in the mouth and throat, then 

eating can become more challenging. We 

recommend that our patients continue a 

textured diet for as long as they are able, 

but if eating is becoming unmanageable 

then soft foods are encouraged. Often 

people start to avoid spicy and acidic foods 

as these can cause a burning/ stinging 

sensation. The tolerance to these foods 

varies from person to person. 

Tips to help with pain: 

• Choose softer textures (avoiding foods 

which have a rough edge) 

• Try different temperatures and check 

which suits you 

• Avoid acidic or spicy foods 

• Take pain relief prior to eating (as guided by 

your medical team or clinical nurse specialist) 

Xerostomia (Dry mouth) 

When patients experience xerostomia 

dry foods can be more challenging, often 

patients find it more manageable to have 

additional sauces with foods. Also sipping 

on fluids while eating can help patients get 

foods down. Often steaming is advised prior 

to meals so that patients can clear any thick 

secretions and add moisture 

Written by Alysia Burrows, 

Dietitian at the Royal Marsden Hospital 

to their mouth prior to eating. 

Tips to help with xerostomia: 

• Steam regularly throughout the day 

• Sip on fluids when eating 

• Add sauces, gravies, and dressings to 

foods to add moisture 

• Choose soft/ moist foods/avoid dry options 

• Use sprays of water and olive oil to add 

moisture to the mouth 

• Try artificial saliva’s 

Increased secretions 

Some people will experience an increase 

in thick, sticky secretions while having 

radiotherapy. A build-up of these thick 

secretions can sometimes cause nausea 

which can impact eating. It is beneficial 

to steam regularly. The medical team 

and clinical nurse specialist may also 

recommend mouthwashes to help you 

clear the secretions and anti-sickness 

medications to reduce the nausea. 

Taste changes 

Experiencing taste changes while having 

radiotherapy treatment is common but 

how the taste is altered can vary from 

person to person. To increase the flavours 

in foods, techniques such as adding herbs 

and garlic to foods can make foods more 

palatable. Some people can taste strong 

flavours or will notice they have more 

affinity to taste savoury rather than sweet 

flavours or vice versa. 

Tips to help with taste changes*: 

• Choose foods with a stronger flavour 

• Add pickles or chutneys (if tolerated) 

• Trial sweet foods and savoury foods 

and check if one is easier to taste 

• Trial foods at differing temperatures 

• Add sauces to foods 

• Marinade foods to increase flavour 

• Add herbs and seasonings 

• Focus on foods which are palatable 

for you 

• If you cannot taste any flavours focus 

on setting a routine to prompt eating 

36 


37 

DIET SOLUTIONS 

Protein Sources: 

When eating think about whether you could 

add additional foods to increase the protein 

and calorie content. For example, adding 

cheese to mash potato, lentils to a sauce, nut 

butters to a smoothie or on a snack. 

Maintaining weight and muscle mass 

during treatment may be difficult however 

is an important part of recovery. Focus 

on incorporating protein and calorie rich 

foods into your diet. 

Examples of protein rich foods: 

Meats, Fish, Beans and pulses, Eggs, Dairy 

products, Quorn, soy products, Nuts. 

Nourishing drinks: 

If eating is becoming more difficult then 

nourishing drinks are beneficial. Milk 

based drinks such as hot chocolate, malt 

drinks, homemade milkshakes or a glass 

of full fat milk will increase the daily intake 

of calories and protein which in turn can 

help to prevent or reduce weight loss and 

muscle loss. 

Soft foods include: 

Texture modification is often necessary 

during radiotherapy treatment and 

people tend to have softer foods as the 

weeks pass. This can make eating more 

comfortable, which in turn encourages 

a larger intake. This is paramount in 

maintaining nutritional status. 

An example of soft meal options: 

Breakfast: Porridge, scrambled egg, 

yoghurts, pancakes etc. 

Main meals: shepherd’s pie, fish pie, 

casseroles, carbonara, spaghetti dish, 

risotto, soft noodles with a tender meat etc. 

Desserts: sponge puddings, rice pudding, 

custard, trifle, ice cream, crème caramel, 

mousse etc. 

Nutritional supplements: 

To increase a person’s calorie and protein 

intake often nutritional supplements are 

prescribed. The nutritional supplements 

are nutrient dense. They are available in 

different varieties so that a supplement 

which is suitable can be found for each 

person. Some of the supplements are milk 

based and others are juice based. Often 

the low volume, high protein supplements 

are used as a first line as people tend to 

manage smaller volumes with more ease. 

The nutritional supplements are very 

important when oral intake is reduced, 

and they may be prescribed multiple 

times a day. 

Artificial feeding: 

Some patients will require a feeding tube 

to support their nutrition throughout 

treatment. A nasogastric tube or 

gastrostomy tube may be inserted. This 

decision would be made with the patient 

if required. 

After Radiotherapy: 

It often takes a few weeks post 

radiotherapy before the side effects start 

to improve and this is a gradual process. 

As the pain improves the variety of foods 

which people can eat often increases and 

this in turn improves their calorie and 

protein intake. For those on nutritional 

supplements these can then be weaned 

down, with the aim of stopping them. 

*For more information regarding taste changes see www.lifekitchen.co.uk

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38 

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39

Tips for swallowing during 

radiotherapy 

Patients experience a wide range of symptoms during radiotherapy (RT) treatment. 

As the symptoms can vary day on day and week on week, it is important that you 

have regular reviews with your multi-disciplinary team to manage symptoms as they 

arise. Your team may include your Oncologist, Clinical Nurse Specialist, Dietitian and 

Speech and Language Therapist (SLT). We encourage patients to flag their concerns or 

changes in symptoms early to enable us to best support you through your treatment. 

Swallow management 

Your swallow function can be affected by the cancer 

itself, the symptom burden of the cancer such as pain or 

due to RT side effects. SLTs assess your swallow prior to RT 

commencing and will continue to monitor your swallow during and after RT. SLTs offer guidance on how 

to manage potential swallowing difficulties, which we refer to as dysphagia. Some patients have difficulty 

swallowing their saliva, liquids and food during and after RT. If we are concerned about your swallow, we 

may advice you to have a videofluroscopy or Fibreoptic Endoscopic Evaluation of Swallowing (FEES) which 

can assess the safety and efficiency of your swallow. Once your swallow has been assessed we can provide 

you with a tailored rehabilitation plan. Some patients have difficulty swallowing safely which can result 

in a chest infection, other patients can develop swallowing difficulties long after RT has finished, we call 

this late effects. At 6 years following RT, Paterson et al. (2018) reported half of patients enjoyed a normal 

diet and one fifth of patients had aspiration, which increased their risk of chest infections. Long-term 

dysphagia was reported as a serious concern following RT in this study. 

Ways to manage your dysphagia may include; engaging in regular swallow exercises, compensatory 

strategies or having a modified diet such as a soft diet. Patients may be advised to have a feeding tube to 

supplement their oral intake during RT, these patients will still be encouraged to swallow regularly, it may 

be just small amounts of water or their saliva. To prevent muscle loss and scaring which can result in long 

term dysphagia it is essential to continue swallowing throughout RT. 

Exercise 

Swallowing exercises are recommended as part of your treatment. We recommend you start the exercises 

the day you meet with your SLT. Your SLT will explain how to do the exercises and why it is important to 

them. The evidence for the exercises is not robust but from our clinical experience we feel they are an 

important part of keeping the swallowing musculature flexible and strong during RT to enable you to 

enjoy eating again after RT and reduce the risk of long-term swallowing difficulty. The recommendation 

40 


is to complete the exercises 3 to 5 times a day, each exercise is repeated 5 times. We are aware that all the 

recommendations can seem burdensome and time consuming, patients often report the importance of 

setting up a routine early to promote self-care. 

We encourage all patients to maintain general physical exercise during RT. Studies from prostate cancer 

and breast cancer show that patients who exercise for 50 minutes three times a week for 5 to 8 weeks 

depending on the study report better quality of life and less fatigue than the group who did not exercise 

(Hojan et al, 2017., Monga et al 2007., Hwang et al, 2008). 

Pain 

As pain is often reported as the number one symptom affecting a patient’s ability to continue with oral 

intake, it is of upmost importance that your pain is well controlled. Proactive management of pain relief 

is needed. We promote regular, 

consistent use of analgesia 

from the onset of discomfort on 

swallowing. Taking pain relief 

20-30 minutes before your meal 

may enable you to continue a 

solid diet for longer. We are always 

pleased to hear that a patient 

increased their pain relief in order 

to eat rather than decreased their 

texture due to poorly controlled 

pain, working with your Clinical 

Nurse Specialist and Oncologists is 

essential for this. 

Mouth care 

An excellent resource for mouth 

care advice is UK_OM_Guidelines. 

pdf (ukomic.co.uk). 

RT can directly affect the oral cavity resulting in acute changes such as ulceration and swelling 

and long term changes such as dryness. These side effects often impact a patients ability to eat 

and drink. This can also impact patient well-being. With as many as 97% of all patients receiving 

radiotherapy (with or without chemotherapy) for head and neck cancers suffering some degree of 

oral mucusoitis (Kostler et al., 2001) weekly assessment by trained professionals is needed. When 

patients have their mucusoitis managed correctly they can continue to enjoy an oral diet. 

General advice during RT is; brush teeth twice daily with high fluoride toothpaste, salt water rinses, sip 

water throughout the day and minimise foods that can irritate your mouth such as spicy foods or acidic 

foods. 

Secretion management 

Dry Mouth due to RT can affect a patients ability to eat, appetite and taste. We recommend sipping water, 

rigorous mouth care, steaming and/ or nebulisers, saline mouth rinses and salivary products such as 

artificial saliva spray may be indicated. Managing your dry mouth, which we refer to as xerostomia, before 

oral intake with sips of water and steam inhalation may increase your comfort at meal times. 

During RT and in the weeks following RT you may experience thick saliva which can negatively affect your 

swallowing. Patients report feeling nauseous as a result of their thick secretions. As it is more difficult to 

swallow when secretions are thick, you have a reduced appetite and altered taste, it is important to clear 

your secretions with steam inhalation before a meal. Sipping water during the day and remaining active 

also helps with this. 

References available 

on request. 

Written by Lauren Leigh-Doyle 

Highly Specialist Speech and Language Therapist at 

the Royal Marsden NHS Foundation Trust. 

41

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42 


We’re here - right where 

you need us! 

Supporting patients on their 

cancer journey, from diagnosis 

through to treatment and 

recovery, we provide access to 

the latest treatments, including 

proton beam therapy. 

Across our UK network of centres, 

our consultants, specialists and staff 

provide an all-encompassing cancer 

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0800 210 0402 

therutherford.com 

All our registered centres undergo a registration inspection by the independent healthcare regulators of each country (Healthcare Inspectorate 

Wales, Care Quality Commission) to ensure that the quality and safety of services meet the required standards of care. In addition, ongoing 43 

inspections are undertaken, and where these have taken place, full reports are made available on our website.

the role of the 

Physiotherapist 

For 34 years, it has been my privilege and joy 

to be a physiotherapist – learning every day 

from people who trust me with their body 

and experience. People who have had lifechanging 

surgery, radiotherapy, chemo and 

reconstructive work. 

For clarity, I use the words “people/person/ 

someone” to refer to the person undergoing 

treatment and care. 

Ideally, you meet someone before their 

initial medical treatment, both to explain the 

role of a physio and explore what the person 

may want and need. Describe what the 

person might expect in the way of sensation 

and function, suggest helpful positionings, 

exercises, breathing, swallowing, chewing 

and communicating techniques. Hopefully, 

this is done in collaboration with a speech 

and language therapist (SALT). Explanation 

around the anatomy involved can be very 

helpful for some people. And also, and this is 

important, find out who the person is, what 

their hopes and needs are and see how they 

move before treatment has begun. 

After surgery, there is much we can offer as 

physios, but I understand from the people 

I work with that they rarely see a physio 

in hospital, although often have exercises 

from the SALT. Even simple things like how 

to move in and out of bed or negotiate 

the toilet or staircase with drains, can 

make a difference in those first days. SALT 

exercises and their useful advice and follow 

up is usually described positively and may 

be continuing after acute intervention 

(support) has lessened. This can be a great 

psychological encouragement as well as of 

practical benefit. Sometimes, people just 

want to know what’s “normal,” after their 

familiar body, the place where they live has 

become an unpredictable stranger. 

If your recovery starts on ITU, you are likely 

to see physios. They may be maintaining 

airways, optimising respiratory function 

and moving people’s limbs if they are 

unconscious or unable to move freely. 

In the early post surgery/radiotherapy days, 

the correct movements and exercises are 

important. As are relaxation, nourishing and 

sustaining breathing and posture (how we 

rest and function in comfort) Suggestions 

around pacing, placement of pillows, 

visualisation and revisiting anatomy can 

be helpful. (shock and trauma may mean 

people may need to have information 

several times). 

44 


Some people who have been treated without surgery, or with robotic surgery may still need physio even 

though their scarring and tightness may be unseen. 

Significant lymphoedema (swelling caused by the congestion of lymphatic fluid, the flow of which 

having been disrupted by surgery and/or radiotherapy) may indicate referral to a specialist lymphoedema 

therapist or nurse. Treatment options may include manual therapy, use specialist equipment, compression 

garments and advice for skincare and selfcare. 

Some people may find it increasingly difficult to open their mouth, have stiffness, weakness or altered 

sensation. As time passes, tightness in scarring may affect facial appearance and function. 

The fascia, the connective tissue under the skin, embracing almost everything and enabling smooth 

gliding of one structure over another can become scarred and stuck after surgery and/or radiotherapy. The 

light touch techniques we (and other suitably-trained bodyworkers) can use both externally and intraorally 

can have an enormous impact on function, movement, comfort and appearance. 

We are integrated beings. Tethering and restriction of one place affects other parts of the body. This maybe 

what brings the person to physio. Soreness in the spine or arms due to altered movement or suboptimal 

mechanics. Or changes in arm movements affecting walking patterns. 

The specialist light touch, sheer and vibrational techniques are not a miracle, but the people I work with 

sometimes describe them as such. Being able to swallow more easily, turn the head without an eye being 

pulled closed or regaining more subtlety of facial expression can be life changing. During treatment, 

people may experience “scratchiness” “pinching” or sharp sensations, but it doesn’t need to hurt to be 

effective. Others may say, “this is bliss.” Afterwards, people often describe feeling “lighter” or “freer” and 

there may be more sparkle in their eyes. Over a course of treatment, people may have less pain, improved 

flexibility and increased confidence in their body. 

Exercises are important, but they need to be the correct ones for that individual at the right time. 

1-3 exercises done well and attentively may be enough. It is my job to suggest and demonstrate well 

something that feels enhancing for the person. I need to explain why it matters that they do it. Often it is 

more about movement than exercise. This is not just semantics. Language and intent matter. 

What we say, how we say it and why we say it all matter. A person whose life has been in significant peril 

will be paying great attention. As professionals, we need to be both confident and cautious, checking what 

is and is not alright for this person trusting us with their precious body. Unless we ask, we have no idea of 

their previous history – and even if we ask, they may never feel at liberty to say. And they may no longer 

have a fluent voice! 

During an initial assessment, when I ask what someone loves doing, I am often reminded of the person 

who said, “sex, eating and swimming. And I can’t do any of those, now.” As part of a team, it is a physio’s role, 

to try to facilitate the person’s way forward to a fulfilling life, so that the person has not endured significant 

challenging and life-changing treatment to simply survive. 

Changes in sensation, energy, appearance, saliva, speech and movement may mean that intimacy and sex 

are changed. 

Communication is essential, but not always easy. 

The physio’s role is seen as primarily physical therapy, and three of our four core elements respiratory, 

exercise and massage, can all make a significant difference 

to someone who has undergone treatment for head or 

neck cancer. However, it is essential to truly engage with the 

person as well as their physical body if we are to be of help. 

Please feel free to contact me at 

www.leahthephysio.co.uk if you have any questions or 

know you can help me deepen my understanding. 

Written by 

Leah Dalby 

MCSP 

Physiotherapist 

45

The power of protons 

It was only a few years ago that 

we celebrated the arrival of proton 

beam therapy in the UK. Previously 

a treatment that cancer patients had 

to travel abroad for, today the power 

of protons can be accessed through 

a complementary mix of private and 

public facilities across the country. 

This transformation has been led by Rutherford 

Health, who first treated a patient with high energy 

proton beam therapy in April 2018. That milestone 

ushered in an era of progress that has helped 

establish the UK as a world leader in precision 

medicine. Whilst it is not suitable for all patients or 

all cancers, proton beam therapy can be a highly 

effective treatment for a range of head and neck 

cancers. 

Head and neck cancer – a term used to describe 

any tumour that affects the areas including 

forehead, eyes, nose, mouth, sinuses and any 

glands or lymph nodes – is the eighth most 

common cancer in the UK. There are about 12,000 

new cases of head and neck cancer each year. 

There is also a gender difference here in the UK – 

in men, it is the fourth most common cancer, while 

in women it is the thirteenth. 

The head and neck region contains many important 

organs which are located closely to each other. When 

considering treatment options, it is therefore essential 

to factor in the impact on neighbouring organs. 

Damage to healthy tissue in the mouth and throat 

can have long-term impacts, from chewing problems, 

dryness, loss of hearing, and more. 

Proton beam therapy is a type of radiotherapy that 

delivers heavily charged protons in a more targeted 

manner to reduce damage to peripheral tissue and 

organs. 

The precision of proton beam therapy allows for the 

effective treatment of many complicated head and 

neck tumors, while minimising the radiation dose to 

vital structures such as the eyes, mouth and brain. As 

an extremely targeted treatment, it has the ability 

to stop radiating beyond a tumour site, making it 

possible to treat the cancerous area whilst reducing 

the radiation dose delivered to the normal healthy 

tissue surrounding it. 

This means, in principal, proton beam therapy can 

reduce the risk of severe side effects when compared 

to conventional radiotherapy, delivering an enhanced 

quality of life for patients. 

46 


More information on the Rutherford Cancer Centres can be found on our website: www.therutherford.com 

These are the main benefits of treating head and 

neck cancer with proton beam therapy: 

• Associated side effects are reduced, allowing 

for quicker recovery 

• Possible reduction of the experience of longterm 

dry mouth and swallowing dysfunction 

• Targeting the treatment area and avoiding 

vital organs and sensitive areas in the head and 

neck area that don’t need radiation - such as 

the eyes, brain etc 

• It is highly accurate in targeting a treatment 

area. It can be used to treat hard-to-reach 

tumours, while lowering radiation exposure to 

surrounding healthy tissue and vital organs. 

The role of Rutherford Health’s network of advanced 

proton beam therapy facilities – located in Newport, 

Reading, Liverpool and Northumberland – has been 

central to the UK closing the gap when it comes to 

proton therapy provision. Our network represents 

the lion’s share of proton therapy capacity in the 

UK and our highly successful oncologist training 

programme has led to the UK benefiting from 

an ‘innovation dividend’ through the creation of 

a better skilled healthcare workforce which also 

includes therapy radiographers and physicists. 

The Rutherford Cancer Centres are at the forefront 

of particle therapy and precision radiotherapy 

research, working with some of the world’s top 

academic institutions and advanced medical 

technology providers. Thanks to these efforts 

the UK is now a key contributor to thought 

leadership on proton beam therapy globally. In 

addition to proton beam therapy, each Rutherford 

Cancer Centre provides CT, MRI, Radiotherapy, 

Chemotherapy, Infusion Therapy, and 

Immunotherapy, as well as a suite of diagnostic, 

planning and support services for all patients. 

Rutherford Health is a network of cancer centres across 

the UK offering the most advanced cancer treatments and 

diagnostic services. It has four centres in Wales, Reading, 

Northumberland and Liverpool and offers chemotherapy, 

immunotherapy, radiotherapy and high energy proton 

beam therapy. The centre in Wales was the first to introduce 

high energy proton beam therapy to the UK in 2018. 

47

Hidden Figures: The role of a Pathologist 

in a head and neck cancer patient journey 

By Dr Ali Khurram- Consultant Pathologist 

& Senior Lecturer, University of Sheffield 

What is pathology? 

Pathology is a branch of medical science that involves study of 

diseases. There are numerous branches of the specialty involving 

examination of micro-organisms and viruses, autopsy and bodily 

fluids. Histopathology is the branch of pathology which deals with 

examination of biopsy/tissue specimens under a microscope and 

these are the people involved in your diagnosis and treatment. 

You may not be aware of the fact that that Pathologists not only 

play a play role in improving understanding of diseases and 

research but are also at the forefront of developing and using 

cutting edge technologies to identify patterns in the tissue to aid 

patient treatment. 

What role does a Pathologist play in 

a patient’s journey? 

The role of a pathologist in a patient’s journey is 

multifold with involvement every step of the way. 

a. Prior to treatment 

When you are sent to a hospital to have an initial 

biopsy, that is the first stage when a pathologist 

gets involved. The piece of tissue that is removed, 

undergoes a series of steps to preserve it in a 

life-like state and thin slices are cut and coloured 

followed by placement on a glass slide which 

can then be viewed under the microscope by a 

pathologist. 

The light shining under the slide on the 

microscope allows the pathologist (with the help 

of magnifying lenses) to meticulously analyse 

features within the tissue including presence of 

abnormal, pre-cancerous or cancerous cells. 

These microscopic findings are then shared 

with the surgeons and oncologists and form the 

foundation of your future treatment. 

Figure 1 - Left image showing stained/coloured tissue on a glass slide. Right image 

shows the slide placed on a microscope with a light shining through. 

Figure 2 - A stained image as it appears under 

the microscope showing presence of oral/mouth 

cancer cells. 

48 


. During treatment 

A pathologist’s role during your treatment is 

absolutely critical. If the surgeons decide to 

remove the cancer, the tissue is sent to the 

lab where it is appropriately sampled by a 

pathologist. In some instances, lymph nodes 

of the neck may also be removed along with 

the cancer which are also all analysed by 

the pathologist along with the cancer. A wide 

range of features are assessed to determine 

the aggressiveness of the cancer and whether 

the surgical margins are clear. This information 

is then presented to all the patient care team 

to decide the need for further surgery or 

adjuvant radio- or chemotherapy. 

Figure 3 - An oral/mouth cancer resection specimen and how 

information may be shared by a pathologist. 

c. After treatment 

Even after your treatment, if there are any suspicious 

areas or the surgeons/oncologists want to determine 

the response to treatment, repeat biopsies may be 

performed which are assessed by the pathologist and 

compared with the features seen previously. This may 

necessitate further surgical or oncological treatment. 

Identification of pre-cancer (dysplasia) 

In addition to diagnosing head neck cancer, 

pathologists also play a key role in identification 

of the presence of pre-cancer (or dysplasia). This 

is crucial as early detection of such lesions can 

prevent development into cancer reducing the need 

for extensive surgery and improving the quality of 

life and prognosis for patients. For this purpose, a 

pathologist examines the tissue for the presence 

of a number of features including the shape, size 

and colour of the cells as well as the shape of the 

mouth or throat lining to establish the grade/risk of a 

pre-cancer. 

Special techniques and methods 

Pathology is a technologically advanced specialty 

and the reporting pathologist will also undertake any 

further relevant tests (e.g. for HPV or molecular or 

genetic testing) vital to your diagnosis and treatment 

plan (i.e. HPV positive cancers may not always 

require surgery as the first line of treatment). Other 

related information such as clinical photographs or 

radiological imaging may also be assessed by the 

Pathologist to obtain contextual information. 

Figure 4 - p16 positivity (brown colour) in a tonsillar cancer 

to determine HPV presence. 

Dr Ali Khurram 

BDS, MSc., PhD, MFDS RCS (Edinburgh), CiLT, FHEA, FDS RCS (England), FRC Path 

Senior Clinical Lecturer and Consultant Pathologist 

Dr Ali Khurram is a Senior Clinical Lecturer and Consultant Pathologist at the University of 

Sheffield, UK. His postdoctoral training was funded by the National Institute for Health Research 

(NIHR), UK as a part of which he also trained as a Diagnostic Oral and Maxillofacial Pathologist. 

Following the successful completion of FRCPath in 2016, he was appointed as a Senior Clinical 

Lecturer and Consultant Pathologist at the School of Clinical Dentistry, University of Sheffield. 

49

It helps when you 

speak to someone who 

understands you 

Our 24/7 Patient and Carer 

support line service is 

answered by a real person 

50 

Alternatively visit our website 

www.theswallows.org.uk 


Facts about... 

MOUTH 

CANCER 

What is Mouth Cancer 

This is the general term given to the variety of 

malignant tumours that develop in the mouth, 

(oral cavity). The Mouth Cancer Foundation 

promotes awareness of all head and neck cancers 

i.e. throat (pharynx), voice box (larynx), salivary 

glands, nose, nasal, sinuses, lips and skin. 

Symptoms 

................................................... 

• An ulcer or white or red patch anywhere in the mouth 

that does not heal within 3 weeks. 

• A lump or swelling anywhere in the mouth, jaw or neck 

that persists for more than 3 weeks. 

• Difficulty swallowing, chewing or moving the jaw or tongue. 

• Numbness of tongue or other area of the mouth. 

• A feeling that something is caught in the throat. 

• A chronic sore throat or hoarseness that persists 

more than 6 weeks. 

• Unexplained loosening of teeth. 

1 person every 3 HOURS is lost to Mouth cancer 

Over 8300 new cases in the UK each year 

Each year 2700 + lives are lost to Mouth Cancer 

Worldwide Mouth Cancer affects 650,000 per year 

Risk Factors 

................................................... 

• Tobacco use is the main cause of mouth cancer. 

• Drinking alcohol to excess can increase risks four fold. 

• Drinking and smoking together can make mouth cancer 

up to 30 times more likely to develop. 

• Poor diet and social deprivation is linked to a third of 

all cancer cases. 

• The Human Papilloma Virus (HPV), transmitted through 

oral sex, could overtake tobacco and alcohol as the main 

risk factor within the next decade. 

• Exposure to the sun is a cause of skin cancer which can 

affect the lips and face. 

Mouth Cancer is TWICE as common in men 

78% off cases occur in the Over 55 age group 

Incidence has risen by 49% over the past 10 years 

5 year SURVIVAL rate has hardly improved in last few decades 

To make a donation or for FREE information visit 

www.mouthcancerfoundation.org 

Advice Line: 01924 950 950 • Head Office +44 (0) 208 940 5680 

Alternatively you can email info@mouthcancerfoundation.org 

JOIN OUR WALK FOR 

MOUTH CANCER 

SCAN TO 

WATCH 

OUR 

YOUTUBE 

VIDEO 

51

What does quality of life mean 

to the healthcare professional? 

On preparing to write this article, a short 

poll of healthcare colleagues revealed some 

expected answers to the question of ‘what 

does quality of life mean to you?’ Responses 

centred on familiar themes, each essential 

in living well beyond or with cancer: eating 

and drinking, communicating, managing 

pain and dry mouth, participating in social 

activities and wellbeing. One response stood 

out above all others, however. A succinct 

response from an experienced clinician 

who simply stated that ‘quality of life means 

whatever the patient says it means.’ With 

these sage words in mind, we begin by 

addressing why quality of life matters to 

the healthcare professional and how it is 

approached in clinical practice. 

Incidence of head and neck cancer has increased 

by 20% in the UK within the last decade (Cancer 

Research UK, 2021), however one and five-year 

survival rates have also increased over a similar 

timeframe (Macmillan, 2017). Whilst increase in 

survival is clearly a favourable statistic, the quality 

of that life in survivorship must be considered. It 

is essential that the experience of survivorship is a 

positive one; optimised through management of 

the impact of cancer treatment. 

Following a diagnosis of head and neck cancer, 53% 

of patients report a decrease in quality of life (Rogers 

et al, 2012). Assessment of quality of life ensures that 

the impact of treatments and the cancer itself is 

acknowledged and understood. It is our role as 

healthcare professionals to explore this in a patientcentred 

way and to identify individualised support 

needs based on the lived 

experience. 

In response to the need 

for greater focus on longterm 

cancer support, 

the National Cancer 

Survivorship Initiative 

(NCSI) was implemented 

in 2010 (Richards et 

al, 2011). The NCSI is a 

partnership between the 

Department of Health 

and Macmillan Cancer 

Support and its aim is to 

Figure 1: The Recovery 

ensure cancer survivors, 

Package (Macmillan, 2013) 

and those living with 

cancer, receive the support they require to continue 

a healthy and active life. Through the work of the 

NCSI, the Recovery Package was developed. All 

cancer patients should 

have access to The 

Recovery Package, 

which consists of holistic 

needs assessment, 

treatment summary, 

ongoing education and 

support events and 

a GP led cancer care 

review at six months. 

Additionally, the package 

provides healthcare 

professionals with a 

structured approach to 

delivery of holistic care, 

in collaboration with the 

patient. 

The practice of 

healthcare professionals 

in relation to quality of 

life is informed by several 

guidelines. National 

Institute for Clinical 

Excellence guidance on 

supportive and palliative 

care (NICE, 2004) advises 

that throughout the 

cancer pathway, physical, 

financial, spiritual, 

psychological and social 

wellbeing should be 

assessed and supported. 

The requirement 

to undertake this 

assessment at several points along the cancer 

pathway is highly relevant as quality of life may vary 

at different stages, therefore assessment should be 

a dynamic, ongoing process adapted to changing 

needs. 

The British Association of Head and Neck Oncologists 

(BAHNO, 2020) echo the NICE guidance, stipulating 

that repeated holistic needs assessment should 

be undertaken to identify needs and manage or 

signpost to alternative services. 

Beyond oncological and surgical treatment, longterm 

rehabilitation needs are provided by nursing 

and allied health professionals (AHPs). Detailed 

guidance for AHPs is provided in the Cancer 

Rehabilitation Pathways (Macmillan, 2018) and 

NHS England guidance which advocate holistic 

needs assessment throughout cancer care, noting 

that ‘timely, holistic and personalised care improves 

quality of life’ (NHS England, 2018). 

52 


A challenge for the 

healthcare professional is 

how to put these guidelines 

into clinical practice. Within 

the context of the finite 

resources of NHS services 

and the time limitations of 

under-resourced outpatient 

clinics, how do we ensure 

that care meets the 

required standards and the 

individual’s quality of life 

needs are met? 

In this regard, a multitude 

of assessment tools are 

established in practice to 

gain information about 

quality of life and treatment 

outcomes as reported by the 

patient. Assessment tools 

are useful for the clinician as 

they provide (in many cases) 

a validated measure which 

can be used quickly and 

at various stages, allowing 

problems to be identified 

and the impact of support 

measured. They also 

fulfil the requirements of 

cancer data reporting and 

research. However, a review 

of quality of life assessments 

by Ojo et al (2012), noted 

that ‘there is no gold 

standard questionnaire’ and 

concluded that there is work 

to be done to ensure that 

measures translate to being 

clinically useful in practice 

and truly representative of patient experience. 

This is pertinent as, despite the unquestionable 

utility of quality of life assessment tools, there is the 

risk that healthcare professionals may only ask the 

questions that we want to know the answer to. By 

assessing quality of life only in this way the patient 

lacks agency to lead discussion towards the support 

they want and they may feel that their concerns are 

not reflected accurately within the confines of the 

assessment tool. As healthcare professionals we 

must therefore question if we are truly addressing 

what matters to the patient or if we are projecting 

only our own opinions of what we think quality of 

life looks like. 

The Patient Concerns Inventory for Head and Neck 

(PCI) (Rogers et al, 2009) is a holistic assessment 

tool which seeks to address this by supporting 

the patient to discuss concerns that may be less 

immediately identifiable within an outpatient 

appointment. The PCI takes the form of a patientled 

prompt list of discussion areas, covering physical 

and functional wellbeing, treatment related, social 

care and well-being, psychological, emotional 

and spiritual wellbeing. 

The patient 

is therefore placed 

at the centre of 

the consultation 

and empowered to 

take active control 

of what they would 

like to discuss. 

The PCI has been 

shown to make 

consultations feel 

more personal and 

importantly does 

not significantly 

i n c r e a s e 

consultation time 

(Rogers et al, 2009). 

T h e s e 

developments, 

and the increasing 

Figure 2: The Patient 

Concerns Inventory for 


awareness of long-term quality of life issues in 

strategy and guidelines, demonstrate a growing 

appetite to ‘get things right’ from the patient’s 

perspective. 

We have briefly reviewed what quality of life means 

to the healthcare professional and identified that 

there are several contributing factors. The competing 

demands of clinical pressures and collecting essential 

data on clinical outcomes must be balanced with our 

responsibilities towards the patient and compliance 

with clinical practice guidelines. 

It is essential that assessment is holistic and 

dynamic to respond to the fluctuating quality of 

life at all stages of cancer pathway. Alongside the 

available assessment tools we must work hard to 

identify what quality of life means to each individual 

and ensure that we tailor our interventions towards 

optimisation of a patient directed agenda. The 

hope is that greater alignment between the 

patient and the healthcare professional can achieve 

meaningful outcomes that benefit quality of life. 

References are available on request. 

Written by 

Freya Sparks 

BA(HONS), PGDIP, MRES MRCSLT 

Clinical Specialist Speech and 

Language Therapist at Barts Health 

53

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55

THE IMPORTANCE OF RESEARCH IN THE 

FIGHT AGAINST HEAD AND NECK CANCER 

Head and neck cancer (HNC) encompasses 

cancers of the larynx, pharynx, oesophagus, 

trachea, mouth, tongue, nose, salivary glands 

and tonsils, and collectively are the 8th most 

common cancer in the UK with over 12,000 

new cases diagnosed every year. Survival 

rates range from 19% to 59%, depending on 

the location and type of cancer [1]. Crucially, 

these improvements in survival have been 

made possible in large part to significant 

investment into research. Here, I describe 

some of the pivotal advancements that 

have led to improvements in treatment and 

scientific discovery, and my perspectives on 

the future of HNC research. 

Historic Treatment of HNC 

Early discovery of HNC 

Archaeological evidence has shown that 

HNC was evident as early as 3000 BCE 

in Egypt (The Ebers Papyrus) and Peru. 

Treatment consisted of poultices, composed 

of cow’s fat, wax and earth. Following this, the 

Greek physician Hippocrates was amongst 

the first to describe, in detail, the diagnosis 

and surgical treatment of head and neck 

cancer, in the fourth and fifth centuries BC. 

However, it was the Greek physician Galen, 

who lived during the 2nd Century, who 

changed the attitude to HNC, due to his 

humoral theory; suggesting that incurable 

cancers form from residues of black bile, and 

curable ones from excesses of yellow bile. 

His view that cancer was a systemic disease 

caused by imbalances of the humours, led 

to a decline in surgical intervention to treat 

HNC. Crucially, it wasn’t until the 17th Century 

when scientific discovery really began 

informing HNC treatment. 

Discovery of the causes of HNC 

We now know that a number of 

environmental effects influence to incidence 

of HNC. However, it wasn’t until the 18th 

Century, that the London physician John Hill 

hypothesised that the use of tobacco was 

associated with the occurrence of HNC, and 

issued the statement “with respect to cancers 

of the nose, they are as dreadful and as fatal 

as any others … It is evident therefore that no 

man should venture upon snuff who is not 

sure that he is not so far liable to a cancer: 

and no man can be sure of that”. Smoking 

tobacco superseded the use of snuff in the 

late 18th Century; however, despite there 

being much research into the links between 

tobacco use and cancer in the following years, 

it was 1964 before a national commission in 

the US concluded that cigarette smoking 

was a significant cause of laryngeal cancer. 

The subsequent drive to highlight the harms 

of tobacco has had a very positive influence 

on the incidence of HNC, due in no small part 

to substantial research. 

Scientific research to inform 

treatment 

The expanded use of the microscope in 

pathology in the 19th Century opened up 

insights in into cancer, specifically with the 

knowledge of Rudolf Virchow, who described 

the cellular composition of tumours and 

the stages in tumour development that 

we use to this day. This allowed better 

diagnosis and informed subsequent 

treatment options. In addition, at the turn 

of the century (1895) the discovery of X-rays 

was announced and the phenomenon 

of radioactivity was described (also 1895). 

These scientific discoveries were followed 

by the discovery of radium by the Curies 

in 1898. Thus, the 20th century introduced 

the use of ionising radiation (radiotherapy) 

in 1951 and, later, chemotherapy in 1966, as 

therapeutic alternatives to, or in combination 

with, surgery. Radiotherapy went through 4 

stages to become the therapy we all know 

today, as scientists and physicians began to 

better understand radiation biology. By the 

second and third phases the emphasis was 

on selective destruction of the tumour while 

preserving local tissue, employing accurate 

planning of treatment with respect to 

anatomical fields and dosimetry. To this day, 

radiotherapy follows these same rules and 

provides a life-saving treatment for many 

thousands of HNC patients every year. 

Surgical practice in HNC treatment 

While surgery was originally utilised to 

remove a tumour, it had fallen out of favour 

in the 2nd Century. However, by the late 19th 

Century and into the 20th Century modern 

surgical practice, with much improved 

survival, was commonplace, with particular 

success attributable to Henry Butlin of St. 

Bartholomew’s Hospital. His careful notekeeping 

and follow-up of patients (in 1898 he 

was able to trace all but seven of 102 patients 

he had treated) showed that survival 

following HNC surgery improved from 5% to 

28%, and later, to 42%. He also identified that 

metastases often occurred in HNC patients, 

due to spread to and from the lymph nodes. 

He subsequently proposed and practised 

nodal dissection during his surgeries to 

reduce the chance of cancer spread and 

metastases. In later years, improvements 

in anaesthesia, a better understanding 

of infection and the widespread use of 

antibiotics and blood replacement made 

surgery a much safer procedure. 

56 


Modern HNC prevention and treatment 

The association between viruses and HNC 

Once upon a time, HNC, and indeed all cancers, were 

considered to be caused by external factors, such as 

the use of tobacco and alcohol. In 1932, the Human 

Papilloma virus (HPV) was discovered; however, it 

wasn’t until the 1980s that the link between HPV and 

cervical cancer was published, against the popular 

dogma, leading to the principal scientist Harald zur 

Hausen being awarded the Nobel Prize for Physiology 

and Medicine in 2008. Vaccines have become 

commonplace in our society to protect against viral 

diseases, and cancer caused by viruses should be no 

exception. In 2006, the first HPV vaccine was approved 

for use to prevent HPV-related cervical cancer, and is 

now routinely administered to school-aged girls. In 

more recent years, a role for HPV in a subset of head 

and neck cancers, mostly cancers of the oropharynx, 

has been identified [2]. This led to the appeal that 

school-aged boys also be vaccinated against HPV in 

order to provide them with the equivalent protection 

as girls, an appeal that was won in 2018 in the UK. 

Crucially, recent research has demonstrated that HPV 

vaccination has reduced the incidence and mortality 

from cervical cancer in women by 90% [3], and with 

time we expect to see the same trend with HNC in 

both men and women. In support of this, a study of 

more than 7,000 young women in Costa Rica found 

that the prevalence of HPV infection was significantly 

lower in those vaccinated, compared to those who 

were not vaccinated [4]. 

Genetic testing as a tool to treat HNC 

The advent of genetic testing and precision medicine 

has accelerated the development of targeted 

therapies for the treatment of HNC. For example, the 

epidermal growth factor receptor (EGFR) inhibitor 

cetuximab was the first approved targeted therapy 

for HNC [5], after extensive research. More recently, 

HPV, EGFR, and LOH have become examples of 

biomarkers that can have diagnostic, prognostic, or 

therapeutic value in HNC research and treatment. 

In recent years, The Cancer Genome Atlas Research 

Network have discovered genomic differences, 

specifically alterations of the gene FGFR3 and 

mutations in the PIK3CA gene in HPV+ HNC, that 

could have significant clinical implications. These 

genes may play roles in pathways that control cell 

growth and proliferation, and for which therapies 

are either already available or are currently in 

development. 

Improvements in cancer imaging 

The ability to “visualise” cancer has greatly improved 

treatment options and improve quality of life. In 

2016, improvements in imaging techniques allowed 

clinicians to identify patients who may be able to 

avoid surgical dissection. An advanced imaging 

technique, known as PET-CT, has been shown to 

successfully identify both structural and metabolic 

abnormalities in tumours. Patients who underwent 

PET-CT imaging after chemoradiation to determine 

if they still needed to have surgery had overall survival 

rates similar to those of patients who underwent 

planned neck dissection and chemoradiation, while 

PET-CT imaging also resulted in fewer operations and 

was more cost-effective [6]. Collectively, this approach 

to treatment both saves lives and vastly improves 

patient quality of life. 

Conclusions and future approaches 

The distance we have come in human history in our 

fight to treat HNC is evident in this timeline, from a 5% 

survival expectancy following surgery to close to 100% 

nowadays. Collectively, this highlights the importance 

of research in the progressing with treatments and 

methods to detect cancer. However, while survival 

rates can be as good as 59%, for some HNC subtypes 

it is still as low as 19%. How do we improve this to 

100%? The boom in the use of immunotherapy, the 

method by which the patient’s own immune system 

is “reprogrammed” to attack cancer cells specifically, 

is a promising area of study. However, such research 

is costly and requires great skill in the research 

workforce. Thus, we collectively need to recognise the 

importance of research as we strive to improve the 

diagnosis, treatment and lives of those diagnosed 

with HNC, and to make our voices heard, especially to 

those who control the purse strings. While HNC is the 

8th most common cancer in the UK with over 12,000 

new cases diagnosed every year, research into HNC 

accounts for less than 1% of the total amount spent 

annually on cancer research in the UK [7]. Thus, it is 

not surprising that HNC survival and quality of life are 

lagging behind other cancers. 

Furthermore, we shouldn’t overlook our collective 

voice when it comes to political decisions. Applications 

for European funding have already fallen by 40% since 

the decision to leave the EU [8] and a number of highprofile 

eminent scientists wrote an open letter to the 

Prime Minister in late 2020, highlighting the need for a 

compromise with EU leaders to continue benefitting 

from EU funding and for the UK to remain a scientific 

leader that we have come to know it to be [9]. 

Moreover, UK science relies on attracting international 

talent, something that shouldn’t be overlooked when 

discussing the UK’s position on immigration. We all 

have the power to use our collective voice for good 

when it comes to improving research into this vastly 

underappreciated disease. 


Written by 

Dr Elaine Emmerson 

B.Sc. (Hons), Ph.D. 

The Centre for Regenerative Medicine, 

The University of Edinburgh 

57

Dry Mouth? 

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Supporting you at every 

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Written by patients & caregivers 

for patients and caregivers 

To order your copy of the Back to Work Guide, 

email: chris@theswallows.org.uk 

62 


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enjoyed I because partly and innovation, great 

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was I year last But, recordings. those of need personal 

me to have been able to acquire a synthetic voice based 

to 

important hugely been has It affected. badly been has 

Contact Us 

www.speakunique.co.uk. 

Steven Cooper 

Voice Banking is a term given to the process of recording your voice 

and using this recording to generate a personalised synthetic voice. 

This synthetic voice can then be used on a device, where it converts 

text to speech, allowing an individual to communicate with a voice that 

is identifiably their own, even when natural speech is not possible. 

to be able to retain some of my personal identity.” 

difference 

a such makes It recordings. voice own my on 

Traditionally voice banking has only been available to people who 

know they are going to lose their voice but have not yet developed 

speech symptoms. SpeakUnique are the only service who can also 

offer voice banking to those with impaired speech through our Voice 

Repair service, and offer a bespoke Voice Design service for those 

with no speech so they can choose how they sound. 

How does SpeakUnique work? 

SpeakUnique offer voice banking technology to allow people to retain 

their identity and communicate in a voice that is their own, even when 

natural speech is not possible. Sign up today to submit your recordings 

and hear your synthetic voice tomorrow. Listen to samples of your voice 

before downloading it. Your synthetic voice can be used on Apple, and 

Android devices using the SpeakUnique app, or on Windows devices, 

accessed through third party software (must be purchased separately). 

A Voice Build synthetic voice is £220 however there will be no 

charge as you will be refered from The Swallows Head & Neck 

Cancer Charity. 

Personalised synthetic voices 

64 


Contact Us 

and to record your voice, please visit 

SpeakUnique 

about information more For 

www.speakunique.co.uk. 

info@speakunique.co.uk. 

us an email at 

drop Alternatively 

The process 

Easy as 1, 2, 3... 

own words 

your In 

for communication aids. 

voices 

synthetic Personalised 

The Process 

We can build your synthetic voice from just a short 

recording of your speech. All you need to get started is a 

computer or laptop, an external microphone (not the one 

built into your computer) and a quiet room. 

1. Grant forms available by sending an email to 

sharon@theswallows.org.uk 

2. Complete the application form and send to 

sharon@theswallows.org.uk to process. 

3. Acceptance is within 24 hours. 

4. During this time register on the SpeakUnique website 

– in the “How did you hear about us” box, please enter 

The Swallows. 

5. Record your voice (follow simple instructions on the 

website – step by step “How to” guides can be found 

at: www.speakunique.co.uk/resources-and-support/ 

support-documents/) 

For recording we recommend: 

a. Patient is in a quiet room. 

b. Use a quality mic. The quality of the recording will 

impact the quality of the synthetic voice, so it is 

important to use a good microphone, be in a quiet 

room and make sure there isn’t too much echo. 

c. Take time when reading the words. 

6. On acceptance of the grant, we will inform 

SpeakUnique to issue the voice and The Swallows 

reimburse SpeakUnique direct. We will need to share 

the user’s name and email address with SpeakUnique 

so they can match the funding to the patient. 

7. Following the successful use of the voice, we ask for a 

testimonial and a report from the team (to help us get 

this as standard process of the pathway and funded by 

the NHS). 

8. If the process is urgent due to operation time-line, then 

please highlight this on your initial email and grant form, 

we can then fast track the process. 

9. As we are a charity, if the patient can afford the £200 

fee, then please ask them to pay as this will leave funds 

free for other patients that cannot. In this case, payment 

will be made to The Swallows to ensure that there is 

no confusion about who is paying for the voice with 

SpeakUnique. 

The Swallows Charity 

Remember, this special rate is only available 

via the Swallows. 

Register at: 

www.speakunique.co.uk 

65

Expert Hand. Human Touch. 

Protect what matters most 

A bit about me and my background 

My name is Shahin Master, I’m an associate 

solicitor for Irwin Mitchell based in 

Manchester. I was a dental surgeon and 

practised dentistry before qualifying as a 

solicitor in 2010. 

I’ve worked as a dentist in general practice, 

in the community dental service treating 

children and adults with special needs and in 

a dental hospital. I’ve also worked as a senior 

house officer in an oral medicine team based 

in a city centre hospital in London, where I 

was involved in seeing patients who’d been 

referred urgently with suspected head and 

neck cancer. 

Putting my experience to work 

As part of the dedicated Dental Negligence 

team at Irwin Mitchell I often see delays in 

the diagnosis of oral cancer, nerve injuries, 

substandard dental implant treatment and 

periodontal disease cases. I’ve acted for 

clients and their families who’ve suffered the 

devastating effects of head and neck cancer as 

a result of negligent care and I’m committed 

to making a positive difference. 

My team work hard to ensure that our clients 

are able to get the support and answers 

they need. We recognise the impact that 

a diagnosis has not only on the individual 

affected but also their families. 

66 


I’m very passionate about raising awareness 

of the importance of the early detection of 

head and neck cancer, because I’ve seen firsthand, 

through the work I do, what impact 

this can have on prognosis. 

Shahin Master 

Associate Solicitor 

Erica’s story 

Erica* visited her dentist because she was 

concerned about a lump in her mouth, and 

after a number of appointments, she was 

diagnosed with an abscess. 

She went on to suffer with loosening of 

her lower teeth and as a result had to have 

some extracted. Despite this her symptoms 

persisted and worsened. Eventually she was 

referred to hospital where she underwent a 

biopsy and was diagnosed with advanced 

squamous cell carcinoma of her lower jaw. 

Erica then had to undergo extensive surgery, 

which included resection of her lower jaw and 

reconstruction. She’s been left unable to eat 

via her mouth and has to be peg fed. 

A helping hand 

Erica instructed us to pursue a medical 

negligence claim against her former dentist on 

her behalf, for failing to refer her to hospital 

in a timely manner under the two week 

referral rule. It was admitted that she should 

have been referred to hospital for further 

investigation earlier and that failure to do so 

constituted negligence. 

It was also admitted that had she been 

referred earlier, she would have been 

diagnosed earlier, which would have resulted 

in less extensive surgery and she wouldn’t 

have had to have her lower jaw resected. 

We were able to secure compensation 

for Erica, which allows her to pay for the 

professional care she now requires due to 

her ongoing condition. She’s been able to 

purchase the equipment she needs to live 

as independently as possible. Erica’s also 

gained access to private speech and language 

therapy. 

Erica has suffered psychologically as well 

as physically as a result of all she’s been 

through. Thankfully she’s been able to access 

specifically tailored therapy to help her cope 

with the devastating consequences of her late 

diagnosis and treatment. 

In these challenging times, Irwin Mitchell is 

here to protect what matters most to you. Visit 

irwinmitchell.com to find out more. 

*Erica is not our client’s real name and has been used to 

uphold her preferred anonymity. 

irwinmitchell.com 

Authorised and regulated by the Solicitors Regulation Authority. 

67

A new clinical 

trial for people 

diagnosed with 

head and 

neck cancer. 

The TrilynX Clinical Trial is evaluating a liquid investigational medication, xevinapant (Debio 1143), 

to see if it may improve the effectiveness of chemotherapy and radiation therapy when taken 

together for squamous cell carcinoma of the head and neck. 

Key Eligibility Criteria 

• At least 18 years of age (or equivalent majority age in your country) 

• Diagnosed with squamous cell carcinoma of the oropharynx, hypopharynx and/or larynx that has not spread to other 

parts of the body 

• Unable to have surgery to remove the cancer and have not received other cancer treatments 

• HPV-positive oropharynx patients are not eligible 

About xevinapant (Debio 1143) 

• May optimize the effectiveness of chemoradiotherapy (CRT) when administered together 

• A potential first-in-class oral antagonist of IAPs (inhibitor of apoptosis proteins), that sensitizes tumor cells to radiochemo 

therapy by promoting programmed cell death and fostering anti-tumor immunity 

• Granted breakthrough therapy designation by the FDA in early 2020 

About Debiopharm 

Debiopharm is a global biopharmaceutical company 

headquartered in Switzerland whose main area of expertise 

is oncology. Debiopharm is committed to bringing innovative, 

Copyright © 2020 Debiopharm 

life-saving treatments to people with cancer. For more 

TrilynX H&N Conference Poster_Global-English_ 

V1_21OCT2020 

information 68 about Debiopharm, visit VIRTUAL debiopharm.com. HEAD & NECK CANCER CONFERENCE 2021

Severn Healthcare have a long and proud history of supplying market leading products to 

support the laryngectomee community with their communication and stoma care needs. 

Covid 19 reinforced to all of us the importance of stoma protection for neck breathers. Stoma 

care, managing a laryngectomy tube or stoma button, changing a baseplate or cleaning a 

voice prosthesis (or valve) in as clean an environment as possible remains vitally important. 

Information and support that is easy to access remains a priority for the laryngectomy 

community. 

Severn Healthcare would therefore like to extend an invitation to you to visit the 

Laryngectomy Forum which can be found at: www.severnhealthcare.com 

In an effort to provide helpful information, postings are being made by Speech and Language 

Therapists, professional organisations, individuals within the laryngectomee community and 

their support groups. 

INSTRUCTIONS TO NAVIGATE TO THE FORUM: 

1. On any internet browser please type ‘SEVERN HEALTHCARE TECHNOLOGIES’ 

2. Next click on ‘FORUM’ 

3. Click the ‘SIGN-UP’ button in the top right-hand corner and create an account 

Alternatively, if you already have an account then please sign-in 

4. Once you have registered/signed-in then please browse the Forum posts and feel 

free to add any of your own comments 

5. The Forum has two groups. One is designated for Clinicians, the other is a general 

discussion group which every member has access to 

69


Cancer Early 

Recurrence 

Detection Study 

Study Type: Non-interventional cohort study 

Planned enrolment: 200 participants 

Primary Purpose: Early Detection of Recurrence (funded by Cancer Research UK) 

Official Title: A prospective cohort study of patients with radically treated newly diagnosed 

locally advanced HPV negative head and neck cancer to develop and validate a 

multimodal signature to risk-stratify for recurrence 

Projected Start Date: November 2021 

Estimated Primary Completion Date: November 2024 

Recruitment Method/Participating Sites: Patients will be assessed and recruited 

from 3 sites; University College London Hospital (UCLH), London, Guys and St Thomas’ 

Hospitals (GSTT), London and North Middlesex Hospital 

Investigators: Professor Tony Ng (KCL), Dr Martin Forster (UCL) 

Figure 1: Background 

Head and neck cancer is the 8th most common cancer in the UK, with 12,000 new cases diagnosed 

yearly. Most patients are diagnosed when the cancer is present in the head and neck area but has not 

spread to other organs. Doctors aim to cure the patient with either surgery and/or radiotherapy and 

chemotherapy as initial treatment. Despite this treatment, the cancer recurs within the first year in about 

3 in 10 patients (figure 1), and patients remain under surveillance (scans and clinic appointments, figure 

2) after initial treatment to detect whether the cancer has returned. There is no standardised programme 

for this surveillance, and so this varies between hospitals and clinicians (within both the public and private 

sectors) leading to inconsistencies. Here we can see a window of need to develop a strategy to help more 

accurately follow up patients. 

70 


Figure 2: Current pathway for surveillance and window of opportunity for risk stratifying patients 

Summary and Design 

The patients recruited into the study would be at a higher risk of recurrence based on factors related to the 

tumour ((Fig 3) e.g. size, involvement of lymph nodes). These samples will be taken before, during and after 

their initial treatment. 

Fig 3: Inclusion/Exclusion Criteria 

This study aims to predict the likelihood 

for the cancer to return after initial 

treatment by using a combination of 

blood, saliva, urine and stool tests along 

with modern imaging techniques (MRI 

based). We then aim to extract key 

information, such as changes in the 

stiffness of tumour, distribution and types 

of immune cells, genetic material, and 

even bacteria and their influence on the 

immune cells, in response to their initial 

treatment. A complex statistical model will 

then be used to put together these factors 

and link them to predict the likelihood for 

cancer recurrence. The data from these 

tests will be used by the research team to find markers to help doctors diagnose cancer relapse early 

on and to more accurately group high and low risk head and neck cancers. This is likely to improve the 

chances of cure in cases where relapse is diagnosed early. 

A successful predictive model may benefit future patients in 

two ways: 

• by generating a more personalised surveillance 

programme, with more intensive assessments for 

patients at higher risk, we may detect recurrence earlier. 

• patients at higher risk may benefit from extra treatment 

to reduce the chance of recurrence. 

Written by 

Dr Sanjena Mithra MRCP(UK), MBChB 

Specialist Registrar in Medical Oncology / Clinical 

Research Fellow, University College London 

71

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All my best, 

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Call us at 800-388-8642 or e-mail me at jklvoice@aol.com. 

72 

We carry most of what you may need. What we don't carry, we usu 

will be happy to refer you to a distributor. 

At Lauder - The ElectroLarynx Company our most important goal is to make available the very best 

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Our company began when my father Col. Edmund Lauder self-published his book, "Self Help for the 

Laryngectomee." Col. Lauder was himself a Laryngectomee; thus bringing needed experience and clari 

to the project. Throughout the years, this book has become an indispensable guide for laryngectomee 

We have ways of 

and those who care for them. 

making you talk... 

• voice amplifiers and • batteries. 

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Our products include: 

In 1990, when I was planning to print and update my father's book 

customers by offering the best products available today for the lar 

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and those who care for them. 

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• books • tapes • electrolarynges (sales and service) 

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Call for 

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Catalog 800-388-8642 

VIRTUAL HEAD & NECK CANCER CONFERENCE 2021 

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Antonio, TX 78249-4027

Head & Neck Cancer 

The Symptoms 

Look out for the warning signs 

Persistent 

sore throat 

Foul breath 

Hoarseness or 

voice changes 

Swelling of 

throat 

Lump, bump or 

mass without pain 

White or red 

patch 

Persistent nasal 

obstructions or congestions 

If you have any of these symptoms contact your 

medical practitioner immediately 

Head to www.theswallows.org.uk to find out more 

73

What is the Impact of 

Head and Neck Cancer upon Sexuality? 

Why research this topic area? 

The experience of having a cancer 

diagnosis and receiving treatment for it has 

been shown to negatively impact sexual 

functioning and satisfaction (Moreno et 

al., 2012). There is a lack of research into 

whether living with HNC may influence 

sexuality which is surprising due to the 

loss of function that can accompany in 

HNC, particularly in surgically invasive 

treatments such as a partial or total 

laryngectomy (Rhoten et al., 2013; Singer et 

al., 2008). The impact of loss of/alteration to 

physical functioning could have especially 

heightened implications in HNC due 

to the significance of the affected areas 

to sexual identity, such as the ability to 

communicate with others (Rhoten et 

al., 2013) and the influence physical and 

psychological changes can have on levels 

of distress (McCabe-White et al., 2021). 

HNC may also provide specific functional 

challenges related to sexuality, such as the 

loss/reduction of lip and tongue function 

following particular types of HNC which 

could impact on kissing, sexual arousal 

and ability to perform oral sex (Rogers et 

al., 2014). Other functional disturbances 

can occur such as fatigue, difficulties with 

eating, sight and smell and problems with 

achieving a desired facial expression when 

communicating non-verbally (Rhoten, 

2016). These changes can be experienced as 

aversive and embarrassing by the patient, 

leading them to socially withdraw from 

other or cope in ways that could impact on 

their health e.g. engaging in risky sexual 

activity, meaning that the ability to create 

new intimate relationships as well as 

maintaining current relationships can be 

reduced (Rhoten et al., 2013). 

Research also suggests that patients do 

not always know whether it is appropriate 

to ask questions about sex during medical 

appointments, suggesting that any 

difficulties relating to sexuality are not being 

routinely addressed and resolved (Low et 

al., 2009). The Holistic Needs Assessment - 

which is a short questionnaire that has been 

routinely used in practice since 2009 - does 

discuss relationship concerns but sex and 

sexuality is not explicitly acknowledged. 

Research into HNC’s possible impact on 

sexuality is particularly important to develop 

as more people now survive HNC and more 

patients are now diagnosed with HNC at 

younger ages. This is significant as these 

patients may live for a longer time than 

patients with HNC have previously, meaning 

that concerns around sexuality may be of 

increased concern. 

What is the project and what are its aims? 

The project consisted of a mixed-methods sequential explanatory design with a 

quantitative online survey phase first, followed by a qualitative semi-structured 

interview phase. 

The primary aim of the study was to investigate the impact of HNC on sexuality in terms 

of sexual function, satisfaction, identity, and relationships. A secondary aim was to assess 

whether psychological flexibility and other coping responses predict sexuality and quality 

of life in the context of HNC – and whether psychological flexibility and other coping 

responses moderate the relationship between cancer appraisals and sexuality/QoL 

outcomes. A tertiary aim was to explore what the clinical need is for individuals with HNC 

in terms of psychological support/care provision around sexuality. 

74 


How is the project progressing? 

Regarding recruitment, 58 participants took part in the online survey 

stage and 18 participants attended a semi-structured interview. The 

data that has resulted from this is in the process of being analysed. 

If you have experienced Head 

and Neck Cancer, it is still possible 

to take part in this survey by 

accessing the below link or 

scanning the QR code: 

During the course of this research, we have 

published a Systematic Literature Review in 

Psycho-Oncology entitled ‘Factors associated 

with psychological distress for couples facing 

head and neck cancer: A systematic literature 

review’. This research identified multiple factors 

associated with psychological distress for 

couples facing HNC. The strongest correlates 

for distress were psychological factors such as 

coping responses. 

What’s next? 

Following data analysis, I will be writing up my 

thesis for submission in February, following 

which we aim to publish the results in a 

peer-reviewed journal. I will then speak at the 

International Head and Neck Cancer Conference 

2022 to share the results of my research. 


By Linda McCabe, Dr. Anna 

Tickle, Dr. Nima Moghaddam, 

and Dr. Sanchia Biswas 

75

76 


77

A new chapter for 

Oracle Cancer Trust 

Oracle Cancer Trust is the UK’s leading national charity dedicated 

to funding pioneering research into head and neck cancer which 

is now, as many of you know, one of the fastest growing cancer 

types in the UK and the sixth most common form of cancer 

worldwide. There is also growing awareness of the prevalence 

of these cancers in younger populations. This is being seen in 

laryngeal cancer areas as well as in HPV-related oral cancers. 

‘Today HPV related oral cancers account for up 

to 70% of oral cancer cases.’ 

And the last two years haven’t helped. Speaking to 

ocologists, surgeons and other medical practitioners 

there seem to be higher levels of late stage diagnosis 

and this alongside a significant slow down in cancer 

research. Head and neck cancer remains one of the 

most poorly funded cancers and receives almost 50% 

less research funding compared to breast cancer. 

So there is more work than ever for charities like 

Oracle, The Swallows and others to achieve. Taking 

up the helm of this challenge at Oracle is new CEO, 

Tamara Kahn. “I’m really pleased to be joining Oracle 

and helping to grow understanding and awareness 

of head & neck cancers. I really think that Oracle 

Cancer Trust’s history of funding high potential 

medical research projects is remarkable and I hope 

that we can continue to fund key diagnosis and 

treatment research projects. I also think that there is 

an opportunity for us to do more to bring together 

the patient, research and medical communities and 

to raise awareness of diagnosis and best practice 

treatment options. Ensuring that all patients have 

equal access and outcomes is something we want 

to strive for. And key to this is working with other 

organisations who have similar objectives and a 

common purpose and I see The Swallows Head & 

Neck Cancer Support Group as a key partner. 

78 


“It has been a very 

challenging two years for 

our community but by 

working closely I am sure we 

can both better understand 

needs and raise critically needed funds.” 

Oracle’s primary role in that is focusing on providing financial and operational 

support that allows for the discovery of newer and kinder treatments by funding 

the riskier but high potential early-stage research. Without this early-stage 

research new discoveries simply wouldn’t happen. Oracle has 

funded research at some of the UK’s leading scientific research 

institutions including The Institute of Cancer Research, Bart’s/ 

Queen Mary’s University, Newcastle University, The Royal Marsden 

Hospital, Brunel University and The University of Sunderland. 

Over the past twenty years Oracle has invested over £10m 

in research funding and made notable breakthroughs in 

discovering immunotherapy treatments, advances in radiotherapy 

techniques, drug development, speech, preserving swallowing 

and taste following radiotherapy as well as numerous studies 

on imaging and quality of life studies. And a lot of this research 

has contributed directly and indirectly to greater understanding 

and personalised approaches to treatment so that patients can 

hopefully have fewer treatment related side-effects and continue 

to get access to newer and kinder treatments. 

As stated above, we really are more than ever looking to engage with our wider head and 

neck cancer community, including supporters, scientists, partners, other charities and support 

organisations helping head and neck cancer patients, medical practitioners and corporate 

partners. Tamara and the Oracle Cancer Trust team would be delighted to meet if you have 

time so please get in touch. 

ceo@oraclecancertrust.org. | www.oraclecancertrust.org 

79

Did you ever feel like your HME filter was too noticeable? 

Kapitex understands that life isn’t all about your Laryngectomy stoma, you 

need a product which gives you the confidence to protect the airway in the 

most discrete way possible. 

PHONIQ® Low Profile HME 

The slim design of the Low Profile HME filter makes it less 

noticeable on the neckline. The filter fits securely into the 

PHONIQ® baseplate, laryngectomy tube or stoma button 

ring without protruding over the top and provides the 

performance data to match the PHONIQ® DigiClose 

HME range. 

LAPFT0005 PHONIQ Low Profile HME 30 

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For a no obligation free trial please email sales@kapitex.com 

80 

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Kapitex Healthcare Ltd, Unit 1, Erivan Park, Sandbeck Way, 

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Our 

charity 

shop needs 

your donations 

We are always in need of: 

Find us at: 

The Michael Stenhouse 

Centre, 68-70 Waterloo 

Road, South Shore, 

Blackpool, FY4 1AB 

Call us on: 01253 428 940 

or email: info@theswallows.org.uk 

Drop off items in the shop, or our 

dedicated free parking area at the rear of the shop 

Clothing 

Furniture 

Bric-a-brac 

Household 

Toys 

Most items accepted 

24/7 Patient and Carer support line service: 07504 725 059 

81 

www.theswallows.org.uk

BRIDGING THE GAP < 

The Swallows 

Head & Neck Cancer Charity 

YOUR 

HOSPITAL 

TEAM 

PATIENT 

& CAREGIVER 

AT HOME 

> 24/7 support line 

> Monthly Meetings 

> Support Boxes 

> Voice Banking 

Our 24/7 support line: 

Email: info@theswallows.org.uk 

82 VIRTUAL www.theswallows.org.uk 

HEAD & NECK CANCER CONFERENCE 2021

Centre for Regenerative Medicine 

‘Virtual’ Behind-the-Scenes Tour 

Have you ever wondered what happens inside a research laboratory? 

Who are the people working on new treatments for head and neck cancer? 

Meet members of Dr Elaine Emmerson’s research team who will take you on a 

special behind the scenes virtual tour of the Centre for Regenerative Medicine, 

a world leading medical research facility based at the University of Edinburgh. 

Elaine’s lab are researching ways to regenerate salivary 

glands (regrow and restore function), following damage 

caused by radiotherapy. Their hope is to develop a new 

treatment for head and neck cancer patients who are 

suffering from chronic dry mouth. 

Hear more about the ground-breaking research happening 

within the laboratory and get to know the scientists working 

behind the scenes. 

Dr Elaine Emmerson 

Wednesday 4 November, 15:30 – 16:30 

Further information contact: Dr Elaine Emmerson, The Centre for Regenerative Medicine, Institute 

for Regeneration and Repair, The University of Edinburgh, Edinburgh BioQuarter, 5 Little France Drive, 

Register: https://regenerativemedicineroom.eventbrite.co.uk 

Edinburgh, EH16 4UU | email: elaine.emmerson@ed.ac.uk 

83

•Soothes pain 1 

•Reduces the incidence of 

moist desquamation (MD) 2 

Apply from Day 1 

Soothes & cools the skin 

Non-sticky 

Easy to apply 

www.flenhealth.co.uk 

Scan here for more info 

Reference 

1. Korting HC, Schollmann C, White RJ. Management of minor acute cutaneous wounds: importance 

of wound healing in a moist environment. Journal of the European Academy of Dermatology and 

Venereology : JEADV. 2011;25(2):130-7 

2. Censabella S, Claes S, Orlandini M et al (2017) Efficacy of a hydroactive colloid gel versus historical 

controls for the prevention of radiotherapy-induced moist desquamation in breast cancer patients. 

Eu Jnl0ncNsg 29:1-7 

84 


Sarah’s Story 

“Being told that one has Cancer is not much fun, and when I was diagnosed nearly 18 

months ago it was inevitably a shock. This was compounded by the certainty of an 

operation (double mastectomy), possibility of chemotherapy and almost certainty of 

Radiotherapy. 

The Chemo I escaped, the operation went well, but it was the anticipation of the 

Radiotherapy which, for me, presented the worst fears. It was not a fear of ‘nuclear 

medicine’, it was the side-effects: I was almost promised these...blistering, weeping skin, 

bright red and extremely itchy patches around the treated areas. 

It was just before I started Radiotherapy, however, that I was introduced to someone who 

had travelled an identical path to mine, and she swore by Flamigel RT. It was prescription 

only and our GP, himself a ‘skin man’, agreed that Flamigel RT was the route to take. About 

four days into my Radiotherapy I switched from E45 to Flamigel RT. And I have not looked 

back... 

I have had NONE of the promised nasties, no weeping skin, no blistering effects like 

sunburn. Yes, three weeks after I finished treatment two angry red patches appeared 

around my collar bone but they only itch a tiny bit, easily soothed by a quick application of 

Flamigel, and I expect them to go away soon. Most importantly, of course, it WORKS and I 

had none of the miseries that I had anticipated. 

I sincerely hope that Flamigel RT will soon be widely and easily available to ALL those 

unfortunate enough to have to undergo the rigours of Radiotherapy.” 

Sarah Rendall 

For Radiotherapy Induced Dermatitus 

•Soothes pain 1 

•Reduces the incidence of 

moist desquamation (MD) 2 

Scan here for more info 

Reference 

1. Korting HC, Schollmann C, White RJ. Management of minor acute cutaneous wounds: importance of 

wound healing in a moist environment. Journal of the European Academy of Dermatology and 

Venereology : JEADV. 2011;25(2):130-7 

2. Censabella S, Claes S, Orlandini M et al (2017) Efficacy of a hydroactive colloid gel versus historical 

controls for the prevention of radiotherapy-induced moist desquamation in breast cancer patients. Eu 

Jnl0ncNsg 29:1-7 

Apply from Day 1 

Soothes & cools the skin 

Non-sticky 

Easy to apply 

85

Coping with 

Dry Mouth 

for Head & Neck 

Cancer Patients 

Living with 

dry mouth 

Dry mouth is one of the most 

common complications during 

and after radiotherapy for 

head and neck cancer, and 

it is important to understand 

how to keep on top of your 

oral health to avoid further 

complications. 

Radiotherapy or 

chemotherapy to the head 

and neck can damage your 

salivary glands, causing a dry 

mouth. Your salivary glands 

may gradually recover but it 

can take 6 months or even 

longer to start noticing an 

improvement. 

If your mouth is dry from 

treatment you may notice 

some of the following 

ORALIEVEsymptoms: 

A need to drink water 

which can lead to frequent 

urination and interrupted 

sleep 

Increased tooth decay or 

bleeding gums 

Difficulty in tasting and 

swallowing food 

Cracked or chapped lips 

Bad breath or a rough 

tongue 

A sore or sensitive mouth 

Thick, viscous, sticky saliva 

86 


Why water alone 

isn’t enough 

One of the most frequently 

used saliva substitutes is water. 

Water can be used as a saliva 

replacement however, it does 

not moisten, lubricate and 

replace what your mouth has 

lost after undergoing head and 

neck cancer treatment. 

Furthermore, it has been 

reported that patients who 

compensate through frequent 

sips of water often show a 

decrease in sleep quality due 

to the increased frequency 

of urination. 

The importance of saliva 

It helps protect your teeth 

from the acids and sugars 

in your diet, helping to 

prevent tooth decay 

It helps remove bacteria 

and residual food from 

your mouth which can 

cause tooth decay and 

gum disease by flushing 

it into the gut 

The anti-microbial 

mechanisms help to 

control the balance of 

bacteria in the mouth 

It helps keep the tissues of 

your mouth including your 

tongue, lips, cheeks and 

gums healthy 

It helps you to swallow 

and digest food and even 

facilitates taste 

87

Top tips for dry mouth 

Add ice to drinks or try sucking ice 

cubes to soothe a dry mouth 

Consider the use of a 

moisturising gel or spray 

You may find eating cold food 

more soothing than hot food 

Avoid very dry foods, which can 

stick to the top of your mouth 

ORALIVE 

Keep food moist with gravies 

and sauces to aid swallowing 

If your mouth is sore avoid salty 

or spicy food that may sting, or 

rough-textured food such as toast 

Clean your mouth after eating with 

a soft brush and a mild toothpaste 

and choose an alcohol free fluoride 

mouthwash with a mild flavour to 

aid with cleansing 

If you wear dentures remove them 

for as long as you can at night 

and clean them with a specialist 

cleanser 

88 

Tell your doctor or pharmacist about your dry mouth and 

ask your dentist for oral health advice 


ORALIEVE 

relief range 

comfort range 

To find out more about 

Oralieve and their dry mouth 

product range, visit: 

www.oralieve.co.uk 

89

Look, listen 

and observe with the elderly 

It is suspected that Cancer referrals during the pandemic in 2020 fell by 350,000 compared to 2019 (Lancet 

2021), indeed one of England’s biggest NHS Trusts reports that mouth cancer referrals have fallen by 65% 

since the beginning of the lockdown. (Dentistry 2021). The pandemic was a challenging time for many, but 

the elderly and the people who care for them faced many challenges. With many residential homes being 

forced into complete lockdown, access to healthcare support often proved difficult due to the sheer pressure 

the system was under. As Cancer Research UK reports that the peak rate in Head and Neck cancers 

in 2018-2019 was in the 70-74 age group, it therefore makes it essential that assessing and checking for 

mouth cancers in the elderly age group a priority. 

This however has its own challenges as there are currently 850,000 people in the UK with Dementia. 

Alzheimer UK reports that 7.1% of all people over the age of 65 years have Dementia. 

It is essential to maintain good oral hygiene for people living with Dementia as it can impact on their overall 

well-being. By carrying out daily care this can help prevent problems like painful cavities and infections, 

which can cause pain and issues with eating, drinking and communicating. (Dementia UK) 

People living with dementia are susceptible to a high rate of tooth decay and gum disease. One reason for 

this is as the dementia progresses, they may find it challenging to perform day to day basic activities and 

perform oral care. Oral issues can get left untreated as the individual may find it difficult to express that 

they have a tooth ache or pain. 

Each and every person is entitled to a clean mouth. It is important that the person living with dementia 

is supported with oral care and when needed ensure mouth care is continued when they are unable or 

reluctant to do it for themselves. (Dementia UK) 

• Each person should have their natural teeth brushed at least twice a day. 

• Try and use the cleaning products they are used too, however consider 

a foam free toothpaste as the person may not be able to swallow or spit 

out. 

• Use the residents choice of toothbrush, this may even be an electric 

toothbrush. As the dementia progresses it may be useful to change to 

a small headed toothbrush for easier access. 

• Cleaning denture by manually brushing and removing food debris. 

Remove dentures at night. 

(Mouth Cancer Foundation) 

Providing basic mouth care for this group of individuals can in some cases prove be extremely difficult as 

the dementia progresses, in some case people close their lips, move their head, clench their teeth together 

and sometimes even bite. There are many tips and advice around providing mouth care for challenging 

individuals, for example, giving short and clear instructions, the “watch me” technique (Alzheimer’s Association) 

or use a distraction technique (BGS) 

All residents in a care setting should have an oral health assessment when they first move into their home, 

this involves input from family and friends who have previously cared for the individual. This information is 

recorded in the care plan and is vital as it helps keeping on top of any changes. 

90 


How to spot changes in the mouth in the elderly 

smell 

listen 

look 

Have you noticed any bad odour coming from the mouth? 

Have you noticed a change in the sound of their voice? 

A sore throat or a cough that isn’t clearing up? Has the 

resident complained that they feel something is stuck 

in their throat? 

Have a close look at the resident’s whole face and throat. 

Have you noticed any bumps, unusual lumps, changes 

in marks on the skin, moles that have changed in size 

or colour, any red or white patches or ulcers inside the 

mouth? Have the dentures unexpectable become looser 

or ill fitting? 

observe 

Have you noticed a change in the resident’s 

behaviour? Drooling from the mouth, 

unexplained weight loss, problems with eating? 

It is vitally important that the carer observer a resident and notices any changes in their behaviour, even 

some small change can be an important sign. There should be a documented referral pathway so that 

carers can report any concerns and then refer to the dental and hospital team as soon as possible. It is 

important to stress even noticing a small change can mean addressing any problem early and hopefully 

saving a life. 

Mouth cancer does not discriminate and will visit the elderly and people living with such conditions as 

dementia. It is therefore essential that effective oral care and assessing the oral condition of the individual 

is embedded into their care and care plan. This is also important for people living in their own homes with 

support from family and carers. It is therefore crucial that staff, carers and family members are offered 

support around spotting any potential issues and how to act on this. 

Written by 

Emma Riley 

Healthcare Services Director 

at RIS Products 

www.ris.healthcare.co.uk 

91

2021 Head & Neck Cancer Conference

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