On Wednesday the JCVI, the committee that makes recommendations about vaccinations, delayed its final decision about extending the HPV programme to boys as well as girls. The reason given was that more work was needed on modelling the consequences of doing so.
This is a welcome development given the statements the JCVI had previously published seemed to significantly understate the role of HPV in causing head and neck cancer.
Head and neck cancer patient groups are of one mind on this issue, as are the clincians’ associations, and we hope the re-modelling will lead to a final recommendation for equal vaccination.
(Members at a recent business meeting)
We will end the year with a couple of regular social events. On Dec 1st we travel to Matlock for the Victorian Christmas Market and on the 13th we have our Christmas Lunch.
2017 has been something of a roller-coaster ride. We have had some superb events, such as the visit to the National Memorial Arboretum and our annual Canal Trip. Membership has increased as we attract new patients from a much wider area – this shows how much support groups are needed and valued.
A less welcome aspect of the year has been the several times members have faced serious battles against health problems – cancer and otherwise. But every time members have supported each other and as a group we are stronger than ever.
Our focus is not confined to our members. We have supplied boogie boards to patients and to our local ENT ward to facilitate communication when patients cannot speak and raised funds to support NALC.
Esther Hutson’s father, Trevor, is a laryngectomee
Next year Esther is running in the London Marathon and will be raising funds for NALC.
Please have a look at her story and support her if you can.
On Nov 2nd Channel 4 broadcast a programme called A Summer to Save My Life. It followed the journey of 3 patients who were receiving immunotherapy treatment for their cancer. As can be expected not all of the programme was comfortable viewing. If you missed the programme then the All 4 website or app can provide it for some time.
NICE has been investigating the use of Nivolumab in head and neck cancer. To date imunotherapy has only been available via a clinical trial. In October NICE decided to approve use of the drug via the Cancer Drugs Fund. Head and neck patients for who the more usual chemotherapy treatment has not worked will be eligible, though there are some limitations on the duration of the treatment.
More details here LINK
The task of making sure all emergency service staff are aware of our needs in an emergency situation is an ongoing one.
Next year NALC will launch a campaign to improve on the current situation. The campaign will highlight how to spot a neckbreather, the common emergency items we use to assist this recognition and how to manage resuscitation and delivery of gases.
NALC has been a partner of National Tracheostomy Saftey Project (NTSP) for some years. Later this month some members of our group and of the Manchester Laryngectomee Club will be working with the NTSP to produce some new educational video resources to assist with training of clinical staff.
On Tuesday 19th September we organised a Coffee Morning to coincide with the European Head and Neck Cancer Awareness Week. Once again we used the 13th century Eyre Chapel in Newbold and were blessed with a warm and dry day.
As well as promoting knowledge of the early signs of head and neck cancer, we managed to raise over £200 and half of this will be donated to NALC.
As always at such events, Marjorie Thorne’s baking proved very popular, for immediate consumption or taken away for later.
We thank all our visitors for their generous support.
Pat Wertz Sanders was a laryngectomee and a major contributor to WebWhispers, the USA based internet mail list and online resource. She died last year.
In 2014 Pat published a book about her experiences and it contains much information that other patients may find helpful.
Now, in ebook form, the book is available for free. It does not have the sophisticated writing style of my favourite cancer journal – John Diamond’s C: Because Cowards Get Cancer Too – but there will be few laryngectomees that do not find it helpful.
If you do not have an ebook reader there is the option to download a pdf file.
More and more people are living with the consequences of cancer and its treatment – they are said to be Living With and Beyond Cancer. But currently there’s not enough research relevant to living with and beyond cancer.
The National Cancer Research Institute is working on a project to change this. They have opened a new survey for patients and the people who look after or have looked after them, and the professionals who work with them. The aim is to identify the most important questions that research should address.
Tell them the questions that you would like answered by research by filling out the survey and help to improve the lives of people affected by cancer. The survey will be open until 15 October 2017. You can find out more about the project at ncri.org.uk/jla.
(click on the links shown in green)
One of the worst aspects of head and neck cancer is that successful treatment can lead to permanent adverse effects on quality of life. These can involve difficulties with nutrition, swallowing or speech, which are basic functions for us all, with problems during and after treatment
An article in the Lancet reports on some benefits seen in a study looking at immunotherapy compared to conventional drugs
HOWEVER these are worth looking at as well
Which Valve? A Personal Perspective
I had my laryngectomy over 15 years ago. From the outset I was aware of the possible speech options and was very keen to use a valve to speak. I was the first patient to receive a primary puncture at my local hospital. Though for the first few months it was not possible, I was keen to be able to change the valve myself. I was comparatively young and happily had no other health issues, which could impact on managing this myself. At that time the Nurse Specialist or ENT Clinic Sister took responsibility for this matter rather than a Speech and Language Therapist.
I have been very lucky and have had few complications along the way so I can still change the valve myself at home, when needed. The duckbill valves are very cheap compared to indwelling valves, which can only be replaced by a clinician. Carrying a couple of spares, I can change my valve without a visit to an ENT clinic or far worse to A&E, wherever I am in the country should the need arise.
The NHS is under great pressure at the moment. Changes are being made to where and when specialist services are available under sustainability and transformation plans. I recently became aware that one hospital trust has advised its laryngectomee patients that, in the event of a valve problem, if they turn up to an ENT clinic without an appointment, they may have to be admitted to a ward, depending on availability or otherwise of staff.(Just pray this doesn’t happen on a Friday when that may mean 3 nights in hospital!)
This situation raises several questions:
Are patients being encouraged to use valves they can manage themselves as much as they were ten years ago?
Would patients welcome the chance to be more independent of their hospital?
Of course some patients have complicated circumstances making self-management impossible. It may be the puncture is in a place that makes it impossible for them to change a valve themselves. There may be other medical or capability reasons why a clinician is needed to do this. The changes in the service since my laryngectomy may well mean more patients can be considered eligible for a valve and the quality of speech has notably improved I think. However, considering the benefits in terms of cost to the NHS and convenience for the patient Eric Blom’s original solution still seems to have a lot to offer.
The August edition of Whispers on the Web has an item looking at this topic – see the link below