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.
We had two meetings in July. At the first, a visiting speaker from the cancer alliance covering the old North Trent Network area sought our involvement in an event at the end of the month. Patient involvement is needed in a review of the patient pathway. Our members contributed to a similar review in the East Midlands network.
For our concluding social evening we organised a Summer Meal, which attracted a record number of attendees. We were delighted to see our Treasurer, Pam Gill, who for two years has been fighting cancer. She receives services from Ashgate Hospice and to thank them she took part in a recent sponsored event. She cannot walk far so some of her journey required a wheelchair. We were delighted to make a donation to the funds she raised. (Pictures can be seen in the gallery page.)
A few days later we were very sorry to learn of the passing of Barry Godfrey. In his time as a member he had generously supported our work in many ways. (See the “In Memoriam” page)
Our group has many meetings during the year. We share difficult experiences and discuss some serious issues, so it is great when we can enjoy ourselves.
This week we organised a trip to the seaside. Chesterfield is almost as far as you can get from the sea in the UK. We chose Cleethorpes as our destination on the Lincolnshire coast. The picture shows some of our members who joined the trip.
There have been already some indications about the benefit of HPV vaccination in reducing cancer.
It is not just cervical cancer occurrence that may be reduced, head and neck cancer rates may benefit in the same way.
The UK is about to extend an HPV vaccination programme to boys as well as girls. The large % of head and neck patients that test positively for HPV infection gives grounds for optimism that the vaccination programme will have a significant impact.
The annual meeting of the American Society for Clinical Oncology (ASCO) usually presents the findings of studies of great importance for the future treatment of head and neck cancer patients.
This year the results of a study carried out by the Institute of Cancer Research and the Royal Marsden suggested that immunotherapy was an effective first line treatment. In the UK immunotherapy has usually so far been a treatment of last resort when other treatments had failed. In the study the use of pembrolizumab was examined.
The study revealed clear benefits regarding survival outcomes from the use of immunotherapy as well as fewer side-effects.
Further information is available here