We regret to report that NALC is struggling to continue its work. With charities it is usually a lack of funding that poses the greatest threat but, in our case, it is a lack of personnel. Key members have passed away, others have had to step down because of health issues or other reasons. In past editions of CLAN this  problem has been shared  but requests for new blood to join in the work have not been successful. Last autumn President, Malcolm Babb, was diagnosed with a new throat cancer so will not be able to continue in his present role.

The Trustees, assisted by Medical Advisor Nimesh Patel, have been looking at how to resolve the current problems. NALC was formed in 1975 and so much has changed in that time in how people work and socialise. The Covid pandemic led to us switching to online meetings and then a lack of funds meant NALC could no longer sustain paid staff. All of this means the constitution and way of working it requires no longer fit current needs and preferences. The Trustees retain the belief that a national group for laryngectomees is essential in ensuring the community’s needs are met. They  will be working to achieve this, even if it means starting again and setting up a new group.

More news on this will be putoblished on this website and any urgent concerns can be sent

hnchelp@live.co.uk

Situation

There is a target of a 2-week waiting (2WW) period for a referral for suspected cancer. The number of referrals from primary care, dentists and other sources has risen dramatically and hospitals have struggled to keep up with demand. This was made worse by the Covid epidemic.

Head and neck cancer is quite rare and the vast majority of referrals prove negative. One approach was to use a risk calculator to split patients into high and low risk groups using factors such as smoking history and gender. Head and neck consultants could then prioritise high-risk patients and defer or reject low-risk patients. However this is not really a satisfactory approach.

Some clinicians were keen to employ the latest technology to improve the situation.

Solution

endoscope-i is a cloud-based smartphone app that combines the high-quality optics of endoscopes with the high definition of Apple iPhones. The app also has an adapter that securely fits an iPhone or iPad.

These high-definition images are combined with a validated symptom score in the app. They are then sent securely through the cloud directly to the head and neck consultant for review.

Trained nurses perform the endoscopy in any primary or secondary healthcare setting. This means more patients are examined which increases the early diagnosis rates of head and neck cancer.

Images are still reviewed by the head and neck surgeon, ensuring the patient gets the best possible opinion despite having a virtual consultation.

Impact

Using this approach with low-risk patients, it takes an ENT consultant 1 minute to review the online consultation instead of 20 minutes.

Consultants now have more time to effectively pick out referrals presenting a high risk of cancer.

By reviewing low-risk patients using this new pathway, head and neck consultants can focus on seeing high-risk patients face-to-face much sooner. This significantly speeds up the diagnostic pathway, as cancer is found 4 to 5 times more frequently in a high-risk clinic.

(From NHS website, with edits)

2024 started as it meant to go on! We had just lost staunch member RC and another RB had shared the news that he had a new throat cancer. PW was also managing a terminal condition. By the end of the year RB had sadly passed away and two others,  MJ amd MB, also found they had a new cancer.

These events changed the focus of our meetings, with the focus being almost exclusively on supporting individuals. At a meeting, every member has the chance to share their news and experiences, with a formal agenda being discarded and no guest speakers.

New members have joined us at meetings and we have responded to requests for support either from individuals or GPs. As has always been the case requests do not always translate to attendance at a meeting. However we always send reminders that we are available if needed.

December saw two significant events. Members attended RB’s funeral at a packed out Chesterfield Crematorium and the following day we had a Christmas celebration, though on a smaller scale than usual. It is clear members value the support they receive and this will continue into the New Year.

HNChelp, the NALC Chesterfield club, has a membership largely comprised of laryngectomees and their carers but has regularly welcomed other head and neck patients.

We try to publicise our work as widely as possible so that patients and carers know we are there for them. We are registered with Macmillan and by many local groups and lists, including Derbyshire Voluntary Action, Derbyshire County Council and others. Patients are referred to us by the local hospital and sometimes by GP practices or cancer support centres. Other patients or family members contact us having used the internet or a local library to find out about us. We were delighted to welcome two new patient members to our latest meeting, one who has had a a laryngectomy, the other extensive treatment for oropharyngeal cancer.

Not all the patients we help attend our meetings. For some, their needs and preferences are met with a one-off face to face meeting or conversation via phone or email.

The focus of our meetings has changed recently to reflect developing circumstances and needs of members. We have increased the opportunities for sharing experiences and have had fewer guest speakers. Sadly, a recurrent topic has been the challenges of getting NHS services in a timely fashion. Hearing how others have coped and resolved such matters is beneficial for all of us.

A laryngectomy is a major surgery. It takes many months for recovery and a future life with serious challenges – finding a new way of speaking and managing a neck stoma. 
Many laryngectomees benefit from a clear goal such as getting back to work or developing the ability to continue key aspects of their life despite the changes after surgery. Fred’s passion was cycling, here is how he coped as he worked to return to what was his “normal”

When I was initially diagnosed with cancer of the larynx I was treated with Radiotherapy at the Royal Berks hospital.  I decided that once I was recovered, I would try climbing Mount Teide in Tenerife.  It proved to be quite a challenge, but I did achieve the goal.

Unfortunately, the cancer returned and the team at the Royal Berks referred me to Professor Winter at the Churchill in Oxford.  Professor Winter asked what was important to me.  Amongst other things I talked about my passion for cycling.  He thought it would be worthwhile attempting a partial laryngectomy which, if successful, would enable me to return to cycling at a similar level to before.  A full laryngectomy would affect the volume of air I could process and my diaphragm would be weaker so power to the legs would be reduced.  That would particularly affect me going uphill.

In the end, the radiotherapy had done so much damage to the tissue that the partial laryngectomy kept leaking.  Eventually, we opted for a full laryngectomy.

It took quite a while to recover from the surgery, I had been in and out of hospital for three months.  When I first got on the bike, on my turbo trainer, the amount of power I could produce was pitiful.  I kept persevering and power output gradually increased.  Some cycling buddies accompanied me on my first ventures out on the road.  It was just so good to be out in the fresh air riding again!

As I got stronger, I started riding with my cycling club with the retired riders group.  I could generally keep up on the flat, but not on the hills, I still struggle on the hills.  We regroup at the top of a climb which allows stragglers to catch up.

I had an opportunity to go to Italy on an organised and supported trip to climb the mountains which the Giro d’italia often climbs in northern Italy.  I just love the mountains, nothing quite like it, the challenge, the amazing views, the sense of achievement at the summit and of course the reward of the descent.  We climbed the iconic climbs of the Passo dell Stelvio at 2758m the second highest paved pass in the alps, the Gavia 2621m, Col Du Petit Saint Bernard, 2188m etc.

It is important to recognise your limits when you have had a laryngectomy.  The other riders did two big climbs a day, to my one.  They will be riding hard but within themselves whilst I was at my maximum.  That takes more recovery, which is why  I only did 1 climb a day.  That was a very rewarding holiday.

Since then, I have been on two trips to Puerto Polliensa in Majorca with my cycling club, Reading CC.  It is quite a mixed ability group but there were enough of us so that there was a suitable group to ride with each day.  On the flat it was fine, but as usual I couldn’t keep up on the climbs.  I used to worry about spoiling my clubmates’ rides by them having to wait at the top of a climb, or when I have to stop to clear my stoma.  In fact, they are very supportive and appreciative of the fact that I am still riding.

It’s not all a bed of roses, when I’m cycling I find it difficult to talk, I can hear the chatter in the peloton which I can’t join in. At the lunch stop It’s not easy to talk whilst eating ( I did have a pharyngeal pouch which may be the reason)  and it takes time to recover.

I try and live the same life as I did before cancer, go out socially, take part in my chosen sport of cycling and talk to anyone who wants to know about living with a laryngectomy.  When I meet new people, I generally explain about my need to periodically clear my secretions, when cycling, I have to do this at the side of the road, so they know what to expect.  It is no good being embarrassed about our disability or its side effects.  We have to live and enjoy life to the full.

This post is prompted by an article, from the Mayo Press, which can be seen here    LINK

Alternatives to a total laryngectomy have been sought for many years. The motive has been to improve future quality of life for patients around speech and swallowing. Chemoradiotherapy preserves the voice but there are other functional issues, not to mention chances of avoiding a recurrence.

NALC has been supporting research and development of alternative strategies. Professor Martin Birchall, of University College London, has been a NALC patron for some years and he took part in the successful larynx transplant surgery on a patient  in the USA in 1998. Since then he worked for some years looking at the use of stem cells for organ regeneration and transplant.

My personal view is that much work remains before there may be a widely available alternative to a traditional  laryngectomy. The current options, as described  in the article, are unproven, expensive and require very specialized facilities.  One option not mentioned in the article is the development of an implantable soft robotic larynx, which is a current focus of Professor Birchall.

The Royal College of Speech and Language Therapists (RCSLT) has published guidance on head and neck cancer for anyone who would like to find out how speech and language therapists (SLTs) work and help people with head and neck cancer.

SLTs have expertise in assessment, diagnosis, management and rehabilitation of voice, speech and swallowing difficulties resulting from head and neck cancer and its treatment.

The new guidance was developed by a working group of SLTs and covers the symptoms, treatment and the role of the SLT when working with people with head and neck cancer.

SLTs can also help patients who have had a total laryngectomy – the removal of the voice box. The RCSLT has published a position paper which sets out the role of SLTS working in this area, alongside a competency framework which reflects the guiding principles in laryngectomy care, to ensure safe and best practice.

Position paper                   LINK

Competency framework     LINK

The connection between HPV infection and cervical cancer has been known for many years. In 2008 a vaccination programme for girls was introduced to try to reduce infection and subsequent development of cancer. However HPV causes other types of cancer, not least head and neck cancer, which has seen a large increase in incidence in the last decade, attributed to HPV. NALC was a member of HPV Action, which campaigned to extend the vaccination programme to boys, and this was implemented in 2018.

HPV is a factor in the majority of oropharyngeal cancers, but not so much in other head and neck cancer such as laryngeal cancer.

Enough time has passed to look at how successful the HPV jabs have been, has the incidence dropped? A recent research study in Scotland has found strong evidence that the vaccination works very well.

Data for women born between January 1, 1988, and June 5, 1996, were extracted from the Scottish cervical cancer screening system in July 2020 and linked to cancer registry, immunization, and deprivation data. No cases of invasive cancer were recorded in women immunized at 12 or 13 years of age irrespective of the number of doses. If vaccinated later, more doses are needed for the same outcome.

Article Here

These excellent findings pose some important questions.

Cervical cancer presents at a younger age than head and neck, when will it be possible for some research to find if the vaccination has had a similar effect in reducing head and neck cancers?

How well is the HPV vaccination programme in schools going? What % of boys and girls are now receiving the vaccination? Since the Covid pandemic, vaccinations of all types have been subject to negative publicity, especially in social media.

We held our usual monthly meetings in 2023, except for April (Easter) and August (summer break) at the Eyre Chapel, with Covid no longer an issue.

As well as supporting our own members we have responded to requests for assistance from Chesterfield Royal Hospital, the Cavendish Cancer Support Centre in Sheffield and various email requests.

Representatives from Severn Healthcare joined us for a couple of meetings. We learned about new laryngectomy prescription items and  there were wide-ranging helpful discussions around member concerns and questions posed to Paula Barnes, Severn’s SLT representative.

Sadly we lost Rick Colley, a valued member for 6 years, and other members have faced challenging diagnoses. We devote time every meeting for members to raise their own concerns and hear the experiences of others.

We ended the year with the usual Christmas Social and lucky raffle winners are shown below.

(Click to enlarge photos)