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Annual Report 2017-18

Financial Matters

Broadly speaking expenditure has matched our income, despite an increase in activity. As usual members have generously supported us with donations and contributions to the costs of activities. The Rotary Club of Clay Cross supported us once again and we held two fundraising events – a coffee morning and a hospital stall. We have split the funds generated at these events between our group and NALC, as previously agreed.

Meetings and Membership

The usual pattern of two meetings a month has continued, with extra social activities on top. We have welcomed many new members during the year, including many who travel considerable distances to be with us. Several members are also involved with Heads2Gether, who meet in Nottingham, and we are building links between the two groups.

Special Events

For many the highlight was the trip to the National Memorial Arboretum, at Alrewas and we intend to visit again. The Coffee Morning, organised for European Head and Neck Cancer Awareness Week, was well attended and raised significant funds. In July we had another canal trip and in December travelled to Matlock, for the Victorian Market.

Our afternoon meetings saw several visiting speakers. In April a team of engineers developing a new method of speech for laryngectomees gave us a presentation. At two other meetings we welcomed suppliers of larynegctomee items.

Work With Hospitals

We had a stand at the Information Point at Chesterfield Royal in June, raising funds and awareness of head and neck cancer symptoms. The SLTs made several requests for us to support patients, and some have become members. The ENT ward is now using the boogie board we gave to them and other boards have been given to individual patients.

Our links with QMC in Nottingham continue to develop and they have extended to all our members the services of a late effects clinic, whether or not their treatment was in Nottingham.

Some members are supporting patients at Kings Mill Hospital, in North Notts.

We also have had and have responded to requests for support from patients who have contacted us through our website, which has had over 12.000 visitors during the year.

Local Links

We continue to support and work with the Nenna Kind Cancer Drop-In Support Centre, which runs a minibus to Weston park hospital, for patients needing radiotherapy. We have been a member of NDVA for many years and will continue to be so after its recent evolution to cover a wider area. As mentioned above we have started to link to a support group in Nottingham.

National Links

Our Secretary continues as President of NALC and to work with NICE on two head and neck cancer committees. A large CRUK funded clinical trial, CompARE, which we supported as its sought to get started is now successfully halfway through its recruitment phase. Our members have once again made a significant contribution to NALC.

Thanks

34SP continue to host our website for free, since we are a registered charity, and we send them our thanks. The Olde House and its staff are excellent hosts for our group and are unfailingly helpful.

 

HPV Vaccination Judicial Review

The Throat Cancer Foundation is preparing to seek a judicial review of the policy that the Joint Committee on Vaccination and Immunisation (JCVI) have to not vaccinate boys for HPV, despite the fact that the vaccination is given to girls at age 12/13.

They believe that the government has a moral obligation to protect the health of  boys, and that by not making protection against HPV available to them they are completely ignoring the suffering caused by and lives lost to cancers caused by HPV. 1 in 20 of all cancers are caused by HPV and 2,000 men a year in the UK develop one of these. As a safe vaccine is available these cases are totally preventable.

Their lawyers have offered to represent them for free due to the importance of this case, but they will still be liable for the court costs. It is expected these to be ring fenced at £15,000. They have launched a CrowdJustice campaign  to raise these funds. PLEASE CONSIDER SUPPORTING THEM

CROWDJUSTICE LINK

GPs Get Incentive Not To Refer Patients To Hospital

A big problem for treating cancer patients in the UK is late presentation.  This affects the chances of survival. I know of many patients who needed many GP consultations before they did get a hospital appointment.

It now seems some commissioning groups are rewarding GPs for NOT making a referral to a hospital.

INCENTIVES for GPs

The article (and others published recently) are sketchy regarding details but anything that delays a potential cancer diagnosis is unwelcome.

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.

leaflet

 

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:

article

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.