Guest blog by Alan Quarterman, Member of the Macmillan Older People’s Taskforce.
I Think I should start by telling you where this blog is coming from.
“I’m a Cancer Tart”. There, it’s out in the open.
After being diagnosed with Bone Marrow Cancer eight years ago, it was a very sobering moment, I looked at my life as an Engineer and thought “how have I made the world a better place?”.
I decided to try to ‘M.A.D.’ Make-A-Difference. To that aim I volunteer for lots of groups trying to make a difference.
At the Macmillan Volunteers Conference in Manchester, I signed up for Macmillan Older People’s Task Force. A few emails later I met fellow ‘M.A.D’ Macmillan supporters at The Young Foundation in East London. It’s a great perk of doing ‘M.A.D’ that you meet a diverse group of opinionated lovely people, and so it was with the Taskforce.
Our hosts, The Young Foundation, explained a new concept to me: how people who know their subject from the inside, solve problems. This Co-Design enables those who get the product, to have a say in what that product is and how it is designed. After workshops on Co-Design, we embarked on our reason to be there.
Older people in Britain are much more likely to die after positive cancer treatment. Why do we have such a bad survival rate, one of the worst in Europe?
An outline for a questionnaire was produced by Susie Finlayson and Radhika Bynon. The Young Foundation, now part of the Taskforce, got to work, in the knowledge that this questionnaire was being designed for us, by us. After the meetings, the email debate was animated, sometimes annoying and pedantic. We, both The Young Foundation and the ‘old people’, produced a questionnaire that hopefully would get the answers. What was it about old people in Britain that caused them to die after being cleared of cancer?
We old codgers had resources that could be mined. I am on the steering committee for my cancer support group at King’s College Hospital London. Others were involved in their cancer support groups, and with peer groups around the country. We all got to work asking in-depth, open questions about life after cancer.
Radhika and Susie were keeping the momentum going; they were putting down a timetable, never more than six weeks for our tasks. The Young Foundation got back our results from the questionnaires.
It would seem, old people were suffering a sort of ‘Post-Traumatic Stress’. Some of our female interviewees described it as being like ‘Post Natal Depression’. It made me feel lucky that I’ve still not got the all-clear for my cancer!
We were invited to present our findings to another Macmillan group called The Geriatric Expert Reference Group (ERG). This is formed of people who are experts in their field. We took to the group, sprouting break-out discussions on how to solve the problem. We were all throwing out ideas and getting them knocked down. Should we delay telling older people they are clear of cancer, until we can get them in the right frame of mind? What should we do about our findings?
We, the Macmillan Older People’s Taskforce, were invited to join the ERG. We meet academics, surgeons, oncologists and other experts within the group and are thrashing-out how to implement our findings.
Shyness, isolation, not wanting to create a fuss and lack of exercise are leading to premature death. Our solution is for the clinical team to pre-warn patients of this ‘cliff edge’ that was described to us, and to put in place mentoring where old people will look after old people. This seems a win-win approach.
Old people want to be useful. Old people want to be supported.
A volunteer will interview the newly free from cancer patient. This will take place at their hospital, in a comfortable room. They will be asked about their likes, and be introduced to the networks that can bring them into a rewarding social scene.
The Older People’s Task Force would like to thank The Young Foundation for all their help and support.
Illustration of the post-treatment support concept developed by the Older People’s Taskforce.
Image credit: Casey Knight