The Cancer Experience Panel: shaping future cancer care

From the initial fear in diagnosis to the hope that treatment gives. From the sometimes brutal reality that treatments impart upon the individual and their life transforming after effects to the provision of end of life care, the voices of experience convey the reality of cancer. That’s why they should be listened to and embedded within any services we create.

Patient. Carer. Survivor. Mother. Father. Sibling. Scientist. Nurse. Engineer. Whatever. The voices of the Cancer Experience Panel (CEP) pretty much cover them all and every experience in between.

Each voice within the panel offers a personal pathway of lived cancer experience. Of experiences shared. No two stories are the same. That’s why they are an invaluable resource. Thankfully, they are now being mined for all their worth.

And it’s why the CEP exists.

The Transforming Care After Treatment (TCAT) program recognises that as cancer has changed, so services needed to change. To be fit for purpose, tailored to the individual and better aligned. And clearly this was one area that until now, that had not been given as much attention as others.

Once treatment had ended, the cancer eradicated, the job was seen as finished. And this is just one of the areas the panel can offer an insight into. Because ‘finished’ is an outside perspective, medically determined. In reality, from the ‘inside’, cancer is never finished. It lives with you forever, either in your mind, physically and most likely both. The fear of it returning never goes away.

TCAT needs the voices of experience to provide the depth and colour to be able to create a new brighter future for how cancer support services can develop in Scotland.

People who had experienced cancer, either as patients or carers, were, until the program came along, an untapped qualitative element. Their experiences can add value, depth and insights to proposed TCAT projects, to make them a success.

We understand the impacts of treatment cycles. We have spent endless hours in medical environments. We have been immersed in a world outside anyone’s comfort zone. And we dealt with the deafening silence which people can meet, once declared free of Cancer.

I can recall my wife having to continually deal with the debilitating effects of two 7 month long chemo regimens, 13 major operations and numerous bouts of radiotherapy. Her case was unique but the experience is not.

All CEP members, myself included, have a number of responsibilities.

Initially these included looking over submitted expressions of interest for proposed projects, and supporting the prioritisation process to decide which projects are to be progressed through the programme.

Each member is then embedded in a program. They have a responsibility to ensure the patient voice is at the centre of the program’s subsequent delivery. To increase the impact of the patient voice, we actively look to draw in other voices of experience, where these programs and services will be delivered. In doing so, further enhancing the possibility of success.

One example of how this works is Gill.

Gill is a mother, living with a terminal diagnosis for breast cancer. Through the Midlothian project, Gill has been able to impart her knowledge (she is also a nurse) to great effect. When she speaks, people stop and listen. Looked upon with enormous respect by everyone, her experience are making a fundamental and life changing impact on the services being offered.

That’s what CEP have helped deliver. That’s the importance of what we do.

We are mid point in the TCAT program and we see the next stage, Stage 3, as a critical moment. Now is a time when the voices of experience should be listened to more than ever before. So we’ll see work hard at engaging others in how best to do that.

My motivation for taking part in CEP was my wife’s death.

Her death was untimely. She was forty two. We didn’t quite make it to our third anniversary.

Her name was Louise.

And I miss her terribly.

We would have had many more anniversaries had we being able to marry earlier.
But 10 years of a constant fight against a rare form of bone cancer (Adamantinoma) prevented that. It included:

  • 13 major operations, 4 of which were amputations
  • two, 7 month chemo regimens
  • numerous sessions of radiotherapy
  • too many blood transfusions to mention
  • endless hours and weeks in hospitals across the UK – Stanmore, UCLH in London, St James’ in Leeds and the Western General in Edinburgh
  • moments of utter despair and yet many, many more moments of happiness.

As my wife once said ‘They can keep cutting bits of me off, but I’ll still be me.’ And she was. She was beautiful and amazing in equally large parts. When we were told nothing more could be done she started a blog that went global and is still helping many others. She featured in two BBC documentaries. One was nominated for a Sony Music prize for one. And a picture of her has hung and is now held in the Scottish National Portrait Gallery. She didn’t live to experience any of this.

I’m just carrying on her legacy and making sure that we both continue to help as many people as possible.

For me, care after treatment is no longer black and white. Professionals and services on one side, us, the voices of experience on the other. Now I like to think it’s more of a beautiful grey.

By Alan Ainsley

About Alan

Alan is a member of the Cancer Experience Panel. The panel consists of people who have had cancer or been carers, who ensure TCAT programmes are improving experiences for people with cancer. The panel has been given a number of responsibilities, including looking over submitted expressions of interest for proposed projects, and supporting the prioritisation process to decide which projects are to be progressed through the programme.

You can read Louise’s story at alancainsley.wordpress.com

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