The Olde House, our usual base is closed during May for refurbishment.
Please see the meetings page for full details of the changes.
Also our April social evening has been moved from Monday 17th of April to the next day, Tuesday 18th, because of the Bank Holiday.
The experiences of head and neck cancer patients improved after the publication of NICE’s Improving Outcomes Guidance around a dozen years ago Not long afterwards a national audit of head and neck patients called DAHNO was introduced.
It collected many details of the treatment of patients and this enabled clinicians and others who analysed the data to make recommendations to improve the patient experience.
For a patient group like NALC it is valuable to know the facts about the numbers of patients adopting a particular method of speech after a laryngectomy or how many had radiotherapy as opposed to laser surgery for early cancer of the larynx and variations across the country.
In 2015 DAHNO was replaced by a new audit, HANA.
Sadly NHS England will not be providing funding beyond the current year, but the group, led by Professor Iain Hutchison, are seeking to continue the audit. They deserve the support of everyone who is concerned about improving the standard of care for head and neck cancer patients.
HNChelp is very grateful, once again, for the support it has received from The Rotary Club of Clay Cross.
Our Secretary, Malcolm Babb was invited to a meeting where the Rotary Club presented its donations to several local charities. In his thanks for the donation Malcolm spoke about our new initiative, giving boogie boards to patients who have no voice, to allow them to communicate with their families and hospital staff.
On March 3rd the NICE Quality Standards Advisory Committee for Head and Neck Cancer has published its recommendations.
It focuses on four areas of treatment that were recommended in the latest NICE guidelines last year. If the recommendations are fully implemented the patient experience would be enhanced.
The full report can be found here Quality Standard
The areas are (in my words):
Avoiding Over-treatment: Introduce the use of sentinel node biopsies, which would mean reducing unnecessary neck dissections
Nutritional Assessment: Ensuring that before treatment the nutritional needs of all patients are assessed to ensure a feeding tube is in place, if necessary
Accurate Tumour Staging: Use of PET-CT scans to guide treatment decisions
Patient Choice of treatment: Radiotherapy and surgery can be equally effective with some tumours such as early larynx or oropharyngeal and the provision of patient choice is appropriate.
There were many other competing areas of treatment that were recommended by stakeholders for inclusion, and these would have also yielded patient benefit. However Quality Standards are always limited to a small number of issues.
The past twenty years have seen significant changes in the methods of speech available to laryngectomees. Esophageal speech is disappearing as there are very few left who can train a patient in this method of speech. Fewer SLTs are providing an electrolarynx, if only as a secondary speech alternative. Undoubtedly the quality of speech for those using a prosthesis has improved making this the gold standard in treatment.
Using a speech valve does have some downsides however. It makes demands on the patient in keeping the valve functional with frequent cleaning and regular replacement. The TEP allows for aspiration, even with a valve in situ. The older the patient the more serious these limitations may be.
NALC and HNChelp’s members are contributing to the development of different approaches by researchers and engineers seeking to use new technology. One approach is to try to develop an artificial larynx which retains swallowing and speech functions. Another is to try to use the ability to “mouth” words and electronically translate this into sound. Projects like these need the input of patients’ experiences and opinions and we are delighted to have the chance to be involved.
Steve Hewlett is 58 and a journalist who works for the BBC, presenting The Media Show on Radio 4. About a year ago he was diagnosed with stage 4 oesophageal cancer.
For past few months he has shared his experiences every Monday on Radio 4, on the PM programme, interviewed by Eddie Mair. The link below gives the chance to download or listen to the podcast.
I have never met Steve and never will, but I am sure everyone will like him. His dry wit and sense of realism about his situation are in evidence every week and he has a sensitive collaborator, in Eddie Mair. Every part of his journey is covered from the discomfort experienced during treatment to how to help the family cope as well. Some interesting questions arise such as how will cancer patients fare as the NHS faces a shortage of funds and overwhelming demand.
Strongly recommended!
Sadly Steve passed away on February 20th, however the podcasts should be available using the link for many months.
As the year comes to an end, members enjoyed a Christmas lunch at our home base, The Olde House, with a final social evening taking place next week. Near the top of our thoughts were friends absent through illness or voluntary work commitments. Every one present won a raffle prize and the choices of “Secret Santa” presents seemed to go down very well.
We can look back on 2016 as a year where we have continued to develop the support we provide. Recently we provided a boogie board to a patient about to have a laryngectomy, to assist with communication on the ward and back at home. Our member list now includes patients/carers beyond our traditional remit of head and neck cancer. This reflects the lack of specific support groups for many types of cancer.
Tonight, on BBC1’s The One Show, there was a film about a laryngectomee, Doreen, who has been left with no voice. She now uses Art to express herself. The program may be seen following the link below. The relevant section starts around 39 minutes in.
This will only be available for a few weeks so the video will be posted on our video page soon.
In the meantime we can see her attitude in the picture below:
It has to be said that the majority of laryngectomees find a voice. For the minority, like Doreen, that do not then tablets and mobile phones can offer an alternative way to communicate.
In 2015 NICE updated its guidelines relating to patients presenting to GPs with suspicious lesions or lumps in the mouth. It involved referral to a dentist within 2 weeks for assessment for a possible oral cancer.
Why are the patients not being directed to a hospital at once? Delay in diagnosis always worsens the likely outcome. Given the strong link between social deprivation and these cancers how many of the patients will have a dentist to see?
The Daily Express (Nov 22) and others reported on concerns about these guidelines, expressed in the British Journal of Oral and Maxillo-facial Surgery.
(The first concert in West Hampstead)
Losing one’s voice box does not mean that singing or joining a choir is impossible. I recall hearing Clifford Hughes, who once performed with Scottish Opera, singing at a NALC event in Scotland, despite having had a laryngectomy.
Dr Thomas Moors has launched a charity, aimed at using singing as an aid to laryngectomee rehabilitation. The idea of a choir whose members have no larynx may appear to be fanciful but the results contradict that notion. Just click below to listen to a recording the choir made as a tribute to the UK paralympians!
As well as being a very satisfying hobby, singing in the choir has benefits for members including a boost in confidence and improved breath control, helping with speech.
For more information see