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A Review of 2018

We held 10 afternoon meetings and a Christmas Lunch.

There were 11 evening social meetings, including a summer meal.

We continue to meet requests from Chesterfield Royal Hospital to assist patients facing a laryngectomy.

Stall at Chesterfield Royal Hospital for fund-raising and raising awareness of early head and neck cancer signs.

Coffee Morning – European Head and Neck Awareness Week – to raise funds and awareness.

Trip to National Memorial Arboretum, Alrewas

Trip to Victorian Christmas Market Weekend, Matlock

Our meetings have had visiting speakers from East Midlands Cancer Alliance and Severn Healthcare

We have provided a PPI contribution to the revision of the East Midlands Cancer Alliance head and neck cancer care pathway.

We have attended meetings and events of the Derbyshire Voluntary Action Cancer Group, including Be Cancer Safe meetings.

We participated in the international head and neck conference in Nottingham, in November.

We have collaborated with Heads2Gether support group,  at the Maggies Centre, Nottingham City Hospital.

Membership has continued to grow, as has the area from which we attract members.

We mourn the loss of Stuart Dawson. Our group helped him along his cancer journey but he , and his wife Mary,  gave far more back to others.

Head and Neck Cancer and Mental Health

In the wider community there has been much discussion about the availability of mental health services and the time it takes to secure treatment. For head and neck patients there is some recent evidence that this may be a crucial issue.

Cancer patients are surviving longer as treatments advance; however the suicide rates are significantly higher than might be expected.

In the latest issue of Cancer, an American journal, Nosayaba Osazuwa-Peters of the Saint Louis University Cancer Centre reported on the findings of his research study. This looked at the data from over 4 million cancer patients, of which more than 150,000 had head and neck cancer.

Suicide rates amongst head and neck patients were higher than for other cancer patient groups and even more significantly higher than for the general population.

Head and neck patients face not only the challenge of dealing with a potentially life-limiting illness but also the consequences of the treatment itself. This may include big problems with speech and swallowing which can limit social interaction and the ability to continue in work.

NALC is aware of concern around this issue and will be looking to work with other head and neck patient groups to try to improve the support that is available.

For more information visit the news section (25 October) of news-medical.net

LINK

 

International Head and Neck Conference 2018

conf1

I attended the first conference organised by Chris Curtis and The Swallows in Liverpool in 2016. The event has grown considerably now with one day for clinicians and another for patients. This year in Nottingham, there were speakers from the USA and India, and from Australia via a video link. We heard contributions from clinicians describing examples of good practice and patients sharing their experiences.

Taking one example, Richard Simcock, a consultant oncologist from Brighton, spoke about communication between doctor and patient. His presentation was informative and entertaining and was received very well. I think it worth sharing one suggestion he made about four key questions a patient could ask when discussing proposed treatment with their consultant:

What are the benefits?
What are the risks?
What are the alternatives?
What if I decline treatment?

NALC had a display stand for the two days and several members of the Chesterfield Club were also in attendance. Everyone enjoyed the speakers and exhibits, as well as the chance to share experiences with other patients and carers. One new member said “a few months ago they could not have imagined attending such an event but were very glad they had”. Joining a support group and meeting others empowered them for dealing with the rest of their cancer journey.

Next year’s conference will be held in Brighton and I recommend it to any head and neck cancer patient or carer.

Head and Neck Research News

CETUXIMAB vs CISPLATIN

For head and neck patients chemotherapy can be a difficult experience. The toxicity and permanent effects of such treatment make finding new or alternative drugs a high priority.  Current standard care  employs cisplatin chemotherapy but recent clinical trials have compared it with a more novel agent, cetuximab.  Sadly the results reported so far indicate cisplatin should remain the standard care.  It was reported at the European Society of Medical Oncology Congress this month that cetuximab gave inferior outcomes.

ESMO Press Release

The Chief Investigator, Professor Hisham Mehanna, can be seen here presenting his findings

Presentation

The findings have been published in The Lancet and are reported

here

IMMUNOTHERAPY

Immunotherapies have yielded some encouraging results so far in the treatment of cancer. For head and neck patients they have been used when the cancer is very advanced and treatment options are limited. The benefits seen  have led clinicians to now recommend their use at an earlier stage.

Article

 

Head and Neck Cancer Awareness

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On Tuesday we organised a coffee morning as part of the European Head and Neck Cancer Awareness Week. (Double click to enlarge the photo)There was a good turnout of patients and the public and we raised over £200, which will be split between HNChelp and NALC,

Across South Yorkshire and North Derbyshire a Be Cancer Safe campaign is being conducted to encourage early consultation with a GP when symptoms occur. In our locality Derbyshire Voluntary Action is delivering this work. They joined us at our event and one outcome will be the production of new public information resources about head and neck cancer.

It was a terrific end to a week when we had also had a meeting with the East Midlands Cancer Alliance, who were seeking our opinions and experiences of the head and neck pathway, which is under review. The week included a relaxing social evening and we welcomed several new members.

European Head and Neck Week

We have  planned a Coffee Morning for European Head and Neck Cancer Awareness Week for Tuesday 18th September. The location is the Eyre Chapel, at the back of The Nags Head in Newbold. Doors open at 10-00am.  As well as raising awareness we will be fundraising  for our group and NALC. There will be plenty of home baking for immediate consumption or to take home, a raffle and Thornton’s chocolates in return for a donation!

Members of the local BeCancerSafe campaign will be with us and will help continue the work beyond the awareness week.

Shrenik Shah

Like several members of HNChelp, Shrenik had a laryngectomy many years ago. He is now devoting much energy to raising awareness and providing support and inspiration to other cancer patients. I had the pleasure of meeting Shrenik and his wife last year. During a visit, from India,  to the UK they attended some NALC meetings and made many friends.

Shrenik shares his story and some inspiring messages in a recent video.

click here

 

NHS Misses Cancer Treatment Targets

In treating cancer successfully time is a vital factor. We know that in the UK late presentation is a significant problem, with patients delaying consulting a GP and reporting to A&E with advanced cancer.

The NHS faces massive challenges at the moment with both funding and recruitment which make it difficult to meet its targets.  Recent statistics indicate growing problems in cancer treatment.

Click for Report

Patient groups can help encourage early presentation by raising awareness and supporting local Be Cancer Aware campaigns

 

Head and Neck Conference November 2018

Chris Curtis became involved with The Swallows, based in Blackpool some years ago. In 2016 he organised  a  patient conference in Liverpool.  It has now become a two day event, with one day for professionals and another for patients and  carers.

This year the event is taking place in Nottingham, in November. There is an impressive list of speakers and it provides a great opportunity for head and neck patients in the North Midlands to both share their views and hear of the experiences of others.

Conference

Highly recommended!