Well, I am sitting quite comfortably, thank you. The clinic room is warm; I have a cup of tea and my bottle of water. I got up, had my breakfast and drove in as usual this morning – nothing special or stressful about today. What about you?

Oh, you had to get up two hours early to get here for your morning appointment, because your Parkinson’s means that you are slowed up with things like washing, dressing, eating and moving, and you didn’t want to be late. You and your wife had to drive with the commuter traffic into the city, and then drive around the hospital car park for 30 minutes looking for a parking space, so now you are stressed and your Parkinson’s is worse. But you will put on a brave front for me. This is our opportunity for a catch up, where I get to ask how you are and suggest treatment changes to your complicated medication regime that will get you through the next 12 months, because there isn’t space in clinic for me to see you more frequently than that. So I say I’ll see you again in 12 months, your GP gets a letter, the waiting list is managed and everyone is satisfied. Except maybe you’re not. And actually I’m not. Am I really providing you with the care you need, in the way that you need it?

How about I ask you?

If we ask patients to tell us what they need, we would probably learn that our traditional care models – developed largely for the convenience of the care-provider organisations – aren’t fit for purpose. Maybe we’d learn that also the content of our ‘care’ doesn’t quite fit the bill.

In Plymouth, we have been working with patients to redesign our Parkinson’s care pathway. Supported by the Health Foundation and Parkinson’s UK, we have created a new model of care. Asking patients, we learned that people with Parkinson’s want information about the disease and how it might impact on their lives, and importantly the steps that they can take to minimise that impact.

They want to know where they can get support, what they can do to help themselves, and how to manage their medicines. They want easy access to clinical support when it is needed, and they want assessments of their Parkinson’s to be objective.

To meet these requirements, we have developed Home Based Care, based on supported self-management, triggered healthcare contacts and digitally enabled remote review. The effectiveness and impact of these changes are continually evaluated so that we know what is working in the way that we had hoped and what needs improvement – and there is always room for improvement.

Our way of working is to ensure that the patient voice, needs and expectations, are at the heart of what we do. Patients need to be involved at every step, not just consulted prior to implementation. They are the driving force for change, the recipients of our care, the customers of our service.

Now, are we all sitting comfortably?


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