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.

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