Category Archives: Uncategorized

Amazon Smile

HNChelp has been financially sustainable for some years. Our members are generous in their donations, we have two events each year to raise funds and we have supporters like the Rotary Club of Clay Cross. The National Association of Laryngectomee Clubs, NALC,  is not in such a situation and needs your support

Recently many schemes have been launched to make donations to a charity when a purchase is made from a variety of online outlets. Amazon has a large share of online sales and if you buy from them you can get a donation to NALC of 0.5% of the value of your purchase .

If you Google “Amazon Smile” and login to your Amazon account, or create a new account, you can choose  the charity that benefits from your future purchases. Entering The National Association of Laryngectomee Clubs in the search box will ensure NALC gets a donation every time you use Amazon.

 

HPV Jabs for the Boys

There is a Westminster Hall debate on vaccinating boys against HPV on Wednesday 2 May, 9.30-11am.

 You can watch the debate live on Parliament TV.

Head and Neck Audit

Data for Head and Neck Oncology (DAHNO)  provided vital information about the delivery of treatment for head and neck patients for many years. Though there were flaws and limitations in the completeness of its reports, it gave patients and carers valuable information in assessing the care that was provided.

Since the tenth DAHNO report covering 2014, I have found no audit information about head and neck cancer. HANA took over from DAHNO and collected a limited amount of data in its first year of operation. It was then handicapped by the withdrawal of financial support for its work. I am currently uncertain as to whether the audit is dead or alive.

The DAHNO group was a valuable forum. It had members from all the clinical groups involved in delivering care to head and neck patients, as well as patient, carer and voluntary sector members, such as NALC. The NICE Quality Standards for head and neck, published in 2017, relied upon the evidence that the audit would provide. For example one of the quality standards was about giving patients choice about surgery or other treatment options. Without the audit there is no way of getting information about what is actually happening to patients.

 

BBC2 Hospital Episode 2

On Tuesday April 3rd the second programme in the BBC series “Hospital” followed some head and neck cancer patients at QMC, Nottingham. It certainly provoked a mixture of emotions. The problems faced by the head and neck team because of shortages of specialist staff have alarming implications for patients. Targets are set for timely treatment with good reason given the prospect for less favourable outcomes if delays occur. On the other hand, one could not fail to be moved by the dedication  and work of staff to do the best they could in the challenging circumstances.

QMC has had an excellent reputation in head and neck,  with world-renowned clinicians such as Emeritus Professor Patrick Bradley, who was a former NALC patron, Some of our members receive their care at QMC and it continues to have a high reputation. Indeed the trust has extended some services to all of us regardless of some being “out of area”.

NHS staff such as the head and neck team at QMC are being let down. They are not able to deliver the service they want to provide, and  which they were able to do  a few years ago.

HNChelp Embraces Social Media

HNChelp now has a twitter account

@hnchelp

Many of our contacts and collaborators, such as NALC, HPV Action and NTSP, have accounts.

Twitter provides a medium for supporting them and also adding our own perspective.

It may take a bit of time to get up to speed however!!!!

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