Functional problems after treatment for head and neck cancer are the bane of so many patients lives. Speech is inevitably an issue, especially for laryngectomees, but swallowing problems cause so much distress as well.
I recently met a laryngectomee who has never found an alternative voice, aside from phone apps. Now, six years down the line, he has additionally begun to experience problems with swallowing.
Researchers at the University of Alberta in Canada have developed a device that can extend the swallowing function from liquids only to a more normal diet.
It is early days and the research only involved a small number of patients but hopefully such strategies will enable future patients to have a better quality of life after treatment.
There are plenty of sources of information describing best practice in the treatment of head and neck patients. They range from the 2015 document “Achieving World Class Outcomes”, many NICE guidelines and quality statements and the 2012 NHS document “Nothing About Me Without Me” .
A recent article in the Nursing Times describes the head and neck pathway at UHNM, in Stoke.
There are many impressive features of the care they provide and I especially like a couple.
The team provide their patients with peer support, stratified into 3 streams head and neck, laryngectomee and thyroid.
Secondly there is an emphasis on patients being involved in decision-making about their care. Choice between alternative treatment options is highlighted in NICE guidelines and the patient view should figure highly in any such discussions.
I don’t think there would be much argument about the title of this post. It seems to be common sense.
Many factors contribute to a delay, beyond the 62 day wait between urgent referral and start of treatment. The increase in demand for treatment and the shortage of key staff are particularly important here. Along the patient pathway a shortage of radiology and imaging staff is but one potential source of delay.
A recent study has highlighted the importance of meeting the target, with worse outcomes when this does not happen.
I am sure patient groups will want to stress at every opportunity that meeting the cancer target times has to be of the highest priority.
A recent post on the website of the Mayo Clinic (USA) talks about the need for patients to have a laryngectomy in future years.
Being a bit pedantic, everything discussed still involves the removal of the voicebox but what may be avoided is the need for a neck stoma. Like many articles I read it portrays having a laryngectomy as a bleak outcome.
For some a laryngectomy, after a diagnosis of late-stage cancer, is a procedure that brings precious months or years survival. For others it enables them to return to a full life in most respects. There may be some problems with speech and swallowing but this is true for many head and neck cancer patients.
Two alternatives are presented but both have limitations. Larynx transplants are unlikely to be a viable solution , not least from the problem of finding sufficient donors and the handicap of needing immuno-supressive drugs for life. Regenerative medicine, using stem cells has the advantages of needing no donor or drugs to combat rejection. However my understanding is that these techniques will need many more years before providing a practical solution.
One approach that is not mentioned is to develop an artificial robotic larynx, but like regenerative medicine many years more will be needed to develop a viable device.
A new charity has been set up – Salivary Gland Cancer UK. It aims to set up a support and information network for patients and those treating them.
Patients who have a rare cancer face additional problems. It can be difficult to find the funding needed for research in to causes, identification and treatment, Getting sufficient numbers for a clinical trials can be near impossible. It will also be far more difficult to find relevant peer support.
The charity aims to build alliances with other groups working to support those with rare diseases.
For some months there has been publicity about the increased funding the NHS will receive in future years. This is welcome but there is evidence that current funding constraints mean our needs are not being met for now.
I am aware of a laryngectomee support group that has recently raised a four figure sum to allow for the provision of an electrolarynx for patients in their locality. Why is this necessary? Would a patient needing a prosthetic limb need funds from a patient group to provide it?
A laryngectomee with a voice prosthesis may experience a leakage when eating or drinking. This requires the prosthesis to be changed by a nurse specialist or (more often) an SLT. In the meantime the patient cannot eat and drink as usual. I am aware of patients having to wait for several days before the problem can be rectified. When I had my laryngectomy in 2002 all I had to do was turn up to the ENT clinic in the event of a problem and it would be resolved on the day.
My comments should not be taken as a criticism of clinical staff, we are all aware of the pressures they face in delivering the patient care they would wish to provide.
I was astonished to learn of the extent of the continuing problems through lack of funding, which may have serious consequences for cancer patients in particular.
GP referrals to hospitals
I know NALC and the Cancer Laryngectomy Trust are working to highlight the needs of their members.
Action Radiotherapy has published a report on current provision of radiotherapy across the UK.
Many interesting questions are posed about how well the needs of patients are being met. I remember discussions in the old North Trent Cancer Network head and neck group about how demand would out-strip supply quite quickly. That was some years ago and still there is just one centre, in Sheffield.
The Swallows and the Mouth Cancer Foundation, with the support of Bristol-Myers Squibb, have published a survey of the experiences of 118 recent head and neck cancer patients in their cancer journey.
The results can be downloaded HERE
Though the sample size is small, the survey adds much to our existing knowledge from other sources such as the National Cancer Patient Experience Surveys.
For me two statistics stood out, highlighting what should be priority areas for improvement in the future. One was the very low % of patients who were offered psychological support (46%) and the other was the need to increase support for carers (only 7%). For a laryngectomee, the carer has an important role post-surgery in stoma care and speech valve maintenance.
I joined WebWhispers not long after my laryngectomy in 2002. Based in the USA it offers an internet mail list, a website and a Facebook page. Whilst most members and contributors are from the USA, it attracts members from across the world.
In the years immediately after my operation, I had email conversations with Dutch Helms, the founder of WebWhispers, and these were very helpful to me. The opportunity to pose questions to the mail list and receive answers from laryngectomees around the world is of great benefit.
Recently a suggestion was made to the list that an information sheet was needed. This would be given by laryngectomees to clinicians unfamiliar with our needs and vulnerabilities, ahead of receiving medical treatment.
NALC, in collaboration with Brendan McGrath who leads the National Tracheostomy Safety Project, has produced such a leaflet and it is available for download from NALC’s website www.laryngectomy.org.uk on the publications page.
I posted a reply on WebWhispers giving the link to the download page, from which the leaflet can be obtained. This has had a great response, the leaflet clearly fills a gap.
Whilst NALC’s primary focus is on patients in the UK, it is great to have international links such as a partnership with WebWhispers.
The mail list can be accessed by receiving all messages or by receiving a digest, from which messages in areas of particular interest can be chosen.
If you have not investigated this group, I recommend having a look.
In early July we had a visiting speaker from the Cancer Alliance covering our area, basically the old North Trent Cancer Network region. The head and neck pathway is being reviewed and the patient and carer viewpoint is being sought. This is a welcome development. There has been little chance for patient involvement since North Trent was subsumed into the larger Yorkshire Network five years ago. We will be supporting this initiative in any way we can, starting with a meeting in Sheffield at the end of July.
Our members come from a wide area and we contributed to a similar development in the East Midlands Cancer Network last year. Disappointingly we had no feedback about the outcomes of that review, Hopefully this will not be repeated and our members will be kept in the loop.