Spotlight - Making care work for people with Parkinson's in South Wales

How did the service initially start?

The service was actually started by our predecessor, Dr Dwarak Sastry, who we took over from in 2009, and Liz Morgan, the Parkinson's Nurse Specialist.

He realised very early on that people with Parkinson's were not able to access the treatment they needed, particularly from professionals such as physios and occupational therapists.

So he started a new clinic set in a day hospital, co-located with the hospital's therapy teams which meant that patients could get easy access to the expertise of the specialists and the wider multidisciplinary teams.

The team now consists of us 2 physicians, our 2 fantastic Parkinson's nurses, Tracy Williams and Sandra Mahon, and our therapy colleagues.

We also have a specialist pharmacist, Diana Fletcher, who is an independent prescriber. She offers valuable input when it comes to managing the very complex therapies patients might have.

What benefits has the service brought?

Patients certainly appreciate the opportunity to see all of the clinicians they are working with in one go, without having to travel backwards and forwards.

As well as their regular reviews, every 3 months, we also hold a Parkinson's day where people can have what is essentially 'a full MOT' with all the professionals. This enables us to pick up issues promptly and manage them pro-actively.

Staff have also benefited from the collaborative approach. Our multidisciplinary team discussions about patients always focus on how best they can be managed by the entire team.

As we're in a teaching hospital, we know how important learning and development is and not just for the pharmacy, medical and nursing students gaining experience within our service.  We are regularly involved in educational sessions for those in the care sector and social services.

We also champion greater awareness of Parkinson's throughout the Trust (and beyond) by seeing people with Parkinson's in other settings through Rapid Access Clinics and by sitting on various opinion panels and expert groups.

In addition, we encourage the team to develop their own expertise. For instance, one of our speech and language therapists undertook training in Lee Silverman Voice Treatments because of her involvement with the service.

What new innovations have developed?

We're coming up to 2 years since we started the Dementia Clinic. Previously we referred our patients who had cognitive difficulties for review by mental health services; we then worked with a consultant specialising in memory.

However when we spoke to people with Parkinson's-related cognitive problems who were using these services and their carers, we found that their needs were not being completely met.

We conducted 2 focus groups of patients and carers and an audit which found that as many as 60-70% of people weren't getting the holistic treatment they needed.

This formed the crux for us to start the first Dementia Clinic specifically for Parkinson's in Wales. This now runs on a regular basis alongside our 'motor' clinic with input from Alzheimer's UK and our Parkinson's local adviser, which has meant people with dementia are managed more effectively.

We have also set up a specific service for people in nursing homes. We did an audit which showed we had 120 patients who live in nursing homes who, because of hospital transport, often spent more time in the waiting area than at their appointment.

So we sought opinions from both patients and the nursing homes and came up with the solution of our nurses actually running the clinics in the nursing homes. Not only has this approach been welcomed by the patients and the nursing homes, we've also been able to show it to be a much more cost-effective use of our resources.

In addition, we have looked to use technology to improve care. A bespoke electronic health record for Parkinson's has been established across our health board since February.

We have worked with our IT department in the health board to set up an automatic trigger that will flag up to us if any of our patients are admitted to hospital. This will enable us to provide our specialist expertise to ensure important issues such as maintaining their medication routine are not missed.

This will start next month and we are keen to see how it will help ensure our patients have the best outcomes from an admission.

What role have people affected by Parkinson's played in these developments?

Our patients have been central to all of these new initiatives and more.

We have used focus groups to get opinions and advice from our patients and their carers as part of our intelligence gathering for specific projects.

However, we would like to have something more formal in place and so we are in the process of setting up a patient panel. This will mean there is a consistent sounding board available to ensure the proposed changes in services do actually benefit patients on the ground.

If someone is looking to make similar changes in their services, what advice would you give them?

I think I can sum this up by saying that you need to look both inwards and outwards.

By inwards, I mean that you need to be able to make the case for change by both canvassing the opinions of your patients and auditing what you are currently doing so that you have a clear idea of your starting point.

This process might be inspired by one incident – I know one of the reasons for seeking an alternative model for managing care home patients was because we had one person from a nursing home who ended up in a hospital transport wheelchair for over 4 hours from the point of them leaving the home to being seen in clinic, by which time they couldn't even get out of the wheelchair.

But however you decide that things need to be different, you need the evidence so that the changes you want to make will reap the rewards you're looking for. 

And what I mean by outwards is look at what other services are doing rather than thinking you have to come up with a totally new solution yourself. Chances are someone else will have faced a similar challenge and have come up with something that you too could easily implement.

This is where I think the UK Parkinson's Excellence Network will be a real game-changer as we can not only look at what someone in the next city is doing, but we can also see what's happening over the other side of the country and learn from them.

This building on each other's experience, I hope, will make our jobs more fulfilling and our services better.

Find out more

If you are interested in finding out more about how Biju and Chris have led the development of the service to better meet the needs of their patients, or if you would like your service to feature in a future Spotlight, contact us at [email protected].