Surgical Voice Restoration (SVR) is the gold standard in enabling laryngectomy patients to speak again. However there will always be a minority who are ineligible for SVR or for who it does not work too well. In such cases an electrolarynx is a useful alternative.
A new study is seeking to hear from electrolarynx users, to learn lessons from their experience.
(Click image to enlarge)
More details are available here
LINKS click below
Participant Information leaflet
Our group has continued to fulfil its main purpose supporting patients and carers facing head and neck cancer, with a focus on laryngectomees.
This has been done by:
1.Providing an opportunity at every meeting for members to share their news and experiences and hear the response of other members.
2.Responding to requests for support from Chesterfield Royal Hospital, telephone calls and emails from individual patients or GP surgeries.
3.Providing laryngectomee emergency items and writing tablets on request.
4.Providing news and information on our own website and the old NALC site.
We have lost one member this year and it has been difficult for some others, dealing with a cancer recurrence or other serious illness. We have continued to work with Chesterfield Royal, meeting patients on request, but sadly Support Worker Gemma is no longer able to attend meetings on a regular basis due to changes in clinic arrangements at the hospital.
Since February 2026 we have been running the former NALC website. The aim is to keep the information resources available for patients and families, updating where necessary. We are keeping up stocks of emergency cards, wrist bands and car stickers to send out on request.
We benefitted from a significant anonymous donation which will enable us to meet the additional costs of running the NALC website and providing emergency items for many years ahead. It will also ensure we can renew our publicity material and cover the cost of room hire, without having to seek donations from members.
Hnchelp has been affiliated to NALC since its formation. However NALC is closing down as a charity. HNChelp hastaken on some of the work that NALC did.
We will be maintaining the NALC website so its information leaflets and videos continue to be available to support laryngectomees and their families and friends. It will also publish items of news relevant to the laryngectomee community.
We will continue to supply emergency items on request.
Finally we will advertise information about relevant research, especially helping researchers to make contact with patients willing to share their experiences.
The incidence of head and neck cancer has been rising for many years now, despite some changes in smoking and drinking habits. Much of the increase can be attributed to the human papilloma virus (HPV). It causes not only cancer of the cervix but cancers in other locations including the head and neck. HPV vaccination was given to girls in Year 8 from 2008, For many years head and neck professionals and patient groups campaigned for the vaccination programme too be extended to boys as well as girls. In 2019 equal vaccination was introduced in England and Year 8 boys received the jab as well.
The work is not over however and the current level of vaccinations is below 75%, though it has recovered a little recently after a fall probably down to concerns about vaccinations after COVID. March 4th is an International Awareness Day and the work done on this day can help boost vaccination rates. Oracle Head and Neck Cancer UK are doing some brilliant work in this area as you can see from the link below. Please sign the petition!
Chris Curtis of The Swallows support group has launched a petition to Parliament. It asks for free dental care for head and neck cancer patients.
Treatment for head and neck cancer has very unpleasant side effects and can leave patients needing urgent dental care. As well as being difficult to find a dentist the treatment can be very expensive.
If you have not signed it already please consider doing so and encourage you family, friends and colleagues to do the same
Use this LINK
Nationwide Building Society Speak Easy Cards
Nationwide branches now have a set of Speakeasy Communication Cards in their counters. They can be used by customers who have speech problems to assist communication with the cashier. Though they won’t cover all situations, it is a very thoughtful addition to their service.
Nationwide deserve congratulations for this innovation. One can only hope the idea catches on and other financial institutions follow the lead of the Nationwide.
Head and Neck Cancer Audit Feasibility Study
For several years, Professor Vin Paleri has been working with partners such as BAHNO, ENTUK and members of the UK Head and Neck Cancer Coalition to establish an audit to monitor the experiences of head and neck patients. NHS England pays for audits of the most common cancers such as breast cancer, but it withdrew funding for a head and neck audit some years ago.
A feasibility study has now started and if successful there is every chance the NHS will then support an audit in the future. NALC has been involved from the early stages of this work and is a stakeholder, with Malcom Babb serving on the steering committee. Most recently there have been discussion to determine what details from the care pathway the study will focus on.
Since 2020, Pembrolizumab has been approved by NICE as an option for untreated metastatic or unresectable recurrent head and neck squamous cell carcinoma (HNSCC) in adults whose tumours express PD‑L1 with a combined positive score (CPS) of 1 or more.
Now, evidence has emerged from a large international clinical trial about the effectiveness of this immunotherapy when given before and after surgery to treat advanced cancer. The Keynote study involved around 700 head and neck patients in 24 countries, involving 192 hospitals. It was led by the Washington University Medical School in St Louis and funded by the drug company MSD.
The experimental treatment arm showed significant benefit over standard care. It doubled the length of time patients were cancer free from, on average, from 2.5 years to 5 years. After 3 years patients receiving pembrolizumab had a 10% lower risk of the cancer returning elsewhere in the body.
Kevin Harrington is the Professor in Biological Cancer Therapies at The Institute of Cancer Research (ICR) and a Consultant Clinical Oncologist at The Royal Marsden NHS Foundation Trust and led the trial in the UK. He said the therapy could “change the world” for this group of patients. Researchers explained that giving patients the drug before surgery trains the body to hunt down and kill the cancer if it ever comes back.
Hopefully the NICE guidelines may soon be amended to include the use of pembrolizumab in this way.
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.