Home Care for Parkinson's - can the UK afford it?

The current model for treating Parkinson’s is broken - on that there is general agreement amongst both patients and doctors. It involves an annual trip to the hospital (and in some parts of the country “annual” is optimistic) to see a neurologist who has just enough time to put you through a few exercises to assess your rate of decline, tweak your medication and send you on your way.

That is why I was excited when I first heard about a new approach being trialled in the South West of England. It is called Home Based Care and involves patients being offered the chance to interact with a range of healthcare professionals from home, while being monitored remotely by smart devices. It means that they can get advice and treatment when they need it, rather than waiting for their annual appointment, offering flexibility to both patients and doctors.

I was so impressed by this when I first heard about it that I accepted an invitation to be on a patient advisory group for an effort to roll out the system across the UK.

Now the University of Plymouth team behind the Home Based Care project has published research showing how enthusiastically it has been received by the patients involved. The study in the Journal of Parkinson’s Disease found that after six months under the new system, patients felt that it was easier to talk to healthcare professionals and that they were being listened to more. Overall, they felt more empowered with a greater sense of autonomy than under the previous system.

It seems a no-brainer that this approach should be both upgraded with the latest sensor technology and offered more widely across the NHS. Professor Camille Carroll, the dynamic neurologist in charge of the project, has secured funding from NHS England’s Digital Health Partnership Award to at least explore that. But in the short-term at least such a radical change in the treatment of Parkinson’s will probably need major investment in technology and staff training, even if it proves more cost-effective in the long run.

Which all brings me back to the discussions we on the Movers and Shakers podcast are having about our idea for a “Parky Charter”, a manifesto for better treatment for people with Parkinson’s. We are planning to start the next series of the podcast in February with an episode where we try to hammer out what should go in the charter - five things we want to happen.

Perhaps one of them could be a move to home-based care - we will see what comes out of our no doubt spirited discussions. But after discussing the idea on BBC Radio 4’s Today Programme on Tuesday (listen roughly 2 hours 37 minutes in) in an item which also included Ted Thompson, the man behind the US Plan to End Parkinson’s, I’ve become convinced of one thing. Whatever goes into our charter its real value will be in raising the profile of Parkinson’s amongst politicians and policymakers - the people who decide whether projects like Home Based Care get funded.