Developing a speech and language therapy tool

Over the past 3 years, Philippa, Chris and Katie (all pictured above), have been working together on a Parkinson’s UK funded research project to develop a speech and language approach for people with Parkinson’s and their loved ones.

Philippa Clay is a speech language therapist and researcher at UCL. She has been working on a research project called Better Conversations with Parkinson’s alongside Professor Stephen Boch and Professor Susanne Beek.

Chris Williams was diagnosed with Parkinson’s 4 years ago. He works in IT and is part of the Parish Church Council. In his spare time he practises magic.

Katie Levitt is Chris’ fiancée, and they live in Lichfield in Staffordshire. She’s self-employed and has her own virtual assistant and online business management business.

Philippa: Speech and language therapy approaches for people with Parkinson's mostly focus on volume and speech impairment. Better Conversations offers something different.

It thinks about interaction and conversation. It also includes family members and friends because they have unique communication challenges too that arise as a result of Parkinson's.

Better Conversations with Parkinson's is a speech therapy programme that is delivered online. It involves the speech therapist coaching someone who lives with Parkinson's as well as a family member or friend.

They think about what's going well in conversation, what's going less well. They come up with their own goals and strategies that they want to try out, and changes that they want to make. Then the speech therapist supports them to practise those strategies.

The research is in the fairly early stages of developing that intervention approach and trialling it. 

Philippa: It gives a myriad of different perspectives and includes those who are most important – the people at the heart of the therapy approach. This will make the therapy more relevant to them and so will hopefully be of more benefit to more people living with Parkinson's.

We recruited people living with Parkinson’s through Parkinson’s UK. We gave them the choice of 2 ways to get involved to fit around their schedules and commitments. One was to be part of a Steering Group whose aim was to oversee the entire research project from start to finish. They collaborated on things like ethical approval, patient information and analysis.

Then there was the Co-Production Group which worked with me and other researchers to design how the therapy should work. It was made up of 4 people living with Parkinson’s, 1 family member, 3 speech and language therapists and myself. This is where I met Chris and Katie.

Originally the Co-Production Group met to co-produce the therapy approach. Given their enthusiasm and expertise, however, the remit slightly extended beyond this. They were involved in evaluating the co-production work, writing an article and prioritising steps for future research.

Chris: I wanted to help improve care and health services, support the NHS and improve the whole healthcare system for people with Parkinson’s. As my speech is affected by my Parkinson’s, this seemed like a good way to do that.

Katie: I was struggling with understanding Chris and I felt like I spent my whole life saying “What was that? I can't hear you”, so this was also an opportunity for me to learn some skills to help support Chris.

Philippa: Better Conversations already existed as a way of improving communication for people living with other conditions. So I brought the core elements of what was already working for those, along with the research we were trying to do to make it work for people with Parkinson’s, to the Co-Production Group.

But after those core elements, I wanted to try and make all other decisions about how the therapy should look together, as a Co-Production group. The Co-Production Group made all the decisions about:

• what the main aims of the therapy should be
• what should be included in the sessions
• how many sessions there should be
• how we should support people to make changes in their conversations

Katie: It was about collaborating and looking at the different perspectives that we all brought to the table.

Philippa: It was very helpful to not have a fixed idea of what I wanted the group to achieve. It meant we could achieve a lot more because we were doing it together. By coming up with the problems and answers together, we discovered what we wanted to do next together.

Philippa: I'm really confident it's created a better therapy approach that’s tailored to people living with Parkinson’s.

It’s got a focus on the progression of Parkinson’s and on how to communicate in groups beyond just your family member or friend. That really came from what the group members were telling me.

Katie: It felt like we were having a real hand in something and creating a positive impact.

Chris: I’ve also made some good friends through it.

Katie: At the beginning of the process, people would talk to Chris and when they couldn't understand him they would look at me, and he would look at me, and I would fall into the trap of speaking for him.

Being involved in this project has helped me feel so much more empowered to support Chris when we're out in groups, or even when we're not together.

I don’t know if I always get it right, but the conversations in the Co-Production Group definitely impacted us personally. Plus, I don't feel like I say ‘what was that’ all the time anymore!

Philippa: The Co-Production Group came up with a list of priorities. This includes looking at face to face delivery, making sure that the changes that we’re measuring are really important to people with Parkinson's, and working towards a full-scale research trial to see if it makes a real difference

We’ve now received funding for the next stage of Better Conversations with Parkinson’s which will look at delivering the same intervention that we co-produced face to face and on a larger scale across 4 NHS trusts, expanding from the 1 we’ve already got.

Chris: Go for it! It’s really rewarding

Katie: Anything we as individuals can do to help make the quality of life around Parkinson's better, for anybody is rewarding. I'd give up my time again to do that. I'll always give up my time to do that.

Because I can testify that even though we haven't actually done the program, it's had an impact for us. So I know it's having an impact for the people who are actually doing it properly with Philippa.

So go for it because you never know what you might be helping to change.