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.
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
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.
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.
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.
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.
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
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.
I can recall a conference organised by the former North Trent Cancer Network Consumer Research Panel in 2012 which focused on the present and future of radiotherapy. It was clear that the demand was growing significantly and that a second site delivering RT was needed in the locality. Meadowhall or Doncaster were cited as possible locations. Early in 2017 it was reported that plans to deliver RT at Doncaster were being shelved for financial reasons.
Recently, The Swallows head and neck group have drawn attention to a petition seeking to ensure sufficient funding is provided for the delivery of RT across the UK.
The lack of resources devoted to RT result in delays in treatment and also patients having to travel large distances to obtain life-saving treatment. This is a petition that deserves our support.
More information is available from Action Radiotherapy , who have organised the petition.
Today, July 23rd the Government has decided to implement the JCVI recommendation
On Wednesday, the committee responsible for advising about vaccination programmes, the JCVI, changed its mind about extending HPV jabs to boys as well as girls.
From our perspective the work is not finished. Aside from the uncertainty about the response of the Government to the JCVI’s recommendation and its implementation, potential problems lie ahead in ensuring a high take up of the vaccination. Already there are groups and publications campaigning against the vaccination, even for girls. Hence we feel there is still much work for HPV Action and its members to do.