The Importance of Collaborating with Patients

My first day’s paid employment after leaving school was through a nursing agency;

a naïve 18 year old, thrust onto an NHS elderly care ward with a sum total of 3 hours ‘manual handling’ training. I am certain the lady in bed 3, bay 2, didn’t get a great bed bath that day. But by the time I left university 5 years later I had clocked up thousands of hours working on NHS wards, care homes and in home care, much of it with people with dementia, and would like to think I was a half decent care assistant. It all seems rather a long time ago now, but it made a massive impression on me at a formative time in my life.

My career took me off in a totally different direction after university, but having come back to work in the NHS through the Gateway to Leadership scheme in the early 2000s, when the opportunity to set up a new research network in dementia and neurodegenerative diseases came up, I jumped at the chance. My mentor at the time advised against it – moving into commissioning would put me where the action was; dementia was a peripheral issue to the NHS, and dementia research a career cul de sac.

In that I haven’t gone on to lead the NHS, I’m not in a position to argue with his assessment on the career front! However, I would take issue with dementia being a peripheral issue, and as it turned out, 5 years later dementia research would earn itself a Ministerial Advisory Group and a couple of governments later become central to a Prime Minister’s ‘challenge’. I spent 15 years at the National Institute for Health Research (NIHR), and hope I played my part in transforming the dementia research landscape from the periphery to the mainstream.

Arguably the single biggest innovation I had a hand in, and certainly the most rewarding and enjoyable, was the creation of Join Dementia Research, a public engagement and research matchmaking service we launched in partnership with Alzheimer’s Research UK and Alzheimer’s Society. Although the idea of creating a patient-driven register of interest in research had been part of the original plan when the NIHR Dementias and Neurodegenerative Diseases Network was set up, it didn’t gain traction until two people who had lost loved ones to dementia took the bull by the horns and started demand something be done.

The road to realisation of Join Dementia Research was anything but smooth, but from the moment Shirley Nurock and Barbara Woodward-Carlton started corralling and cracking the whip, it became one on which people affected by dementia and those of us working in the field travelled together. And thank goodness we did, because the barriers were substantial – more on that another time!

Piers and Barbara

‘It reminded me of what can be achieved when you stop and listen to people affected by a condition, and when you partner with them create a solution to a real problem that they have identified.’

A few years later, with Join Dementia Research successfully up and running, I brought together three of the people who had been instrumental at different stages of its development, to talk to the national forum of public involvement leads in the Academic Health Care Networks. Sitting talking together, both during the ‘goldfish bowl’ session and afterwards over a cuppa – in pre-covid days – was one of the highlights of my 15 years at the NIHR. It reminded me of what can be achieved when you stop and listen to people affected by a condition, and when you partner with them create a solution to a real problem that they have identified.

Wendy Mitchell, one of those who took part in the ‘goldfish bowl’ and who has been such a powerful champion of Join Dementia Research talks very eloquently of the importance of hope following diagnosis and how being able to get involved in research is a way of providing hope. Although the treatment options and pathways for cancer are rather different from dementia, for many people diagnosed with cancer, when they discover they have a rare form of their disease, they also discover their treatment options are limited. Limited in part because of the lack of research done on rare forms of cancer.

In getting involved in setting up RareCan I find myself again on a journey working together with people affected by a disease to create something that provides hope of finding new treatments. Fortunately, unlike my first day on an NHS ward 30 years ago, this time I have a bit more experience to draw on. While rare cancer research presents some different challenges from dementia, RareCan and Join Dementia Research are both driven by the desire of people affected by these diseases to drive research forward. How similar the experience of setting the two up turns out to be, I’ll have to wait for a future goldfish bowl discussion with the RareCan founders to find out!

Piers and Wendy