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The Patient Experience

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.

Laryngectomees Worldwide

logo-webwhispers

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.

LINK

Head and Neck Services Review

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.

Before the Summer Break

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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)

Friendship

trip

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.

Benefits of HPV Vaccination

There have been already some indications about the benefit of  HPV vaccination in reducing cancer.

LINK 1

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.

LINK 2

More Evidence of the Value of Immunotherapy

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

Clinician Training and the Patient Experience

Malcolm Babb, NALC President, speaking at a recent head and neck study day for Liverpool University Radiotherapy students

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Liverpool University is one of several that invites NALC to provide laryngectomee speakers to  contribute to their relevant courses. These could be in the areas of speech and language therapy or radiotherapy.

The student response to such contributions is invariably very positive. They welcome the opportunity to hear and question patients about their concerns regarding treatment  and the problems they experience in what may be a complicated cancer journey.

The recent study day in Liverpool provoked a wide range of questions and some thoughtful concerns expressed by the students.

A New Voice Using Latest Technology

There are several alternatives for speech after a laryngectomy but none of them comes without disadvantages. Patients’ circumstances vary considerably, not least the extent of the surgery and its consequences for future speech options.

Recently there have been several computer generated speech options proposed that employ recordings of the patient’s speech before larynx removal.  One of the latest is reported below

App

This looks like a useful addition to the options available, though as the article concedes the time and resources needed may be a problem.

Annual Report

At our AGM on Tuesday April 9th approved our Annual Report below.

Financial Matters

The charity remains in a strong financial position with income slightly more than expenditure over the year. We have received a donation from the Rotary Club of Clay Cross and held two fundraising events, a hospital stall and a Coffee Morning. Members have made generous donations and contributions to the cost of events and one large donation was made to support the purchase of boogie boards.

Meetings and Membership

As in the previous year our membership has grown. We have held our usual 2 meetings per month, with large attendances at the afternoon meetings.

Special Events

We were joined by visiting speakers at two of our afternoon meetings. A representative from the East Midlands Cancer Alliance listened to our experiences as part of the process of revising their head and neck pathway. Fiona Robinson, of Severn Healthcare, gave a very informative presentation much appreciated by members. We held our usual Christmas Lunch and Summer Meal and there were trips to the National Memorial Arboretum and to Matlock. Five members attended an International Head and Neck Conference in Nottingham in November.

Work With Hospitals

During the year we had several requests from Chesterfield Royal to meet with patients facing a laryngectomy and we had a stall at their Information Point in June. Having started with Chesterfield Royal we have begun the process of providing boogie boards to QMC Nottingham and Doncaster RI.

Local Links

Local partners include the Nenna Kind Drop-In Centre, Derbyshire Voluntary Action, Heads2Gether, Derbyshire Cancer Steering Group and more recently the Be Cancer Safe Project.

Other Links

Our Secretary continues to serve as NALC President. The CompARE study, which we helped get funding, continues to recruit well and is the first head and neck study which delivers immunotherapy to patients in the UK.

Online Activity

Our website currently attracts around 1000 visitors per month. As well as reporting on our local work a news section provides information on head and neck cancer developments and the site is mentioned on many other relevant websites. We thank 34SP for hosting our site for free.