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A Useful Resource For Laryngectomee Safety

I met a laryngectomee recently who told me of his experience when needing an investigatory procedure in hospital, a gastroscopy. He advised the nurse he was a laryngectomee and was reassured that there was no problem. Much to his surprise he was later told he would be provided with supplemental oxygen via a nasal cannula. The patient realised this would be pointless, with there no longer being any connection between his mouth and nose and his lungs.

It is a long-standing problem that many hospital staff and other  health professionals are unaware of the altered status and needs of laryngectomees and other neck-breathers.

A useful leaflet is available from NALC which a patient can take with them to show  to clinicians when facing medical treatment. It was produced in partnership with the National Tracheostomy Safety Project. It can be downloaded from the link below.

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The Throat Cancer Foundation announces possible Judicial Review

Since its formation a few years ago the Throat Cancer Foundation has been working to get the HPV vaccination programme extended to boys as well as girls.

 

The Joint Council for Vaccinations and Immunisation has been considering this matter for many months. Now the TCF’s lawyers have advised the NHS they will be seeking a judicial review if there is no recommendation to extend the HPV programme to boys.

More detail here:

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Video Page Updated

Last year the National Association of Laryngectomee Clubs (NALC) collaborated with the National Tracheostomy Project (NTSP) in producing some videos.

The videos will form part of the resources available for staff training to improve the safety of patients who may be dealt with by staff unfamiliar with the needs of laryngectomees.

These videos are now available from our video page, just click on the link above.

Our New Voice

After a laryngectomy there are many challenges and finding a new voice will usually near the top of the list. Using a voice prosthesis (or valve) is the current gold standard. Since my operation 15 years ago I have noticed a massive improvement in the quality of speech that is being achieved by patients using this method.

For some a valve is not a possibility due to the extent of surgery or effects of previous treatment such as radiotherapy. In such cases then an electrolarynx is an alternative method of speech, but some patients are very reluctant to use one.  In the January edition of Whispers on the Web  click here Donna McGarry  (Between Friends) and Noirin Sheahan (Dear Lary) relate the diverse reactions they experience to their use of an electrolarynx.

I have met several patients who prefer to remain silent rather than use an electrolarynx, due to their fears about the reaction they will get. This includes the attention the device will attract when used  in public places. This is a very sad situation and difficult to resolve.

Of course it is essential they are given a correctly adjusted device and trained in using it effectively and confidently. Equally valuable is the chance to meet someone who has used an electrolarynx successfully  to enable them to get back to work or return to their favoured social activities. I am delighted to report that our local hospital encourages this good practice.

HPV Vaccination for boys

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.

As 2017 Comes To A Close

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(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.

 

Immunotherapy Developments

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