The Full Interview:
CHANGE: please tell us about your project
Warwick University: This project looks at something called the recommended summary plan for emergency care and treatment which everyone calls RESPECT for short, the idea of the RESPECT plan, is it that it helps doctors and nurses and other healthcare professionals make the right decisions about treatment for somebody when in an emergency situation, when that person can't say what they want or they don't want in terms of treatment.
We wanted to look at how well that plan worked in practise for people and to find out what people thought about the plan. This was a big project where we were talking to lots of different people, including GPs, nurses, staff in care homes people who had a ReSPECT plan and their relatives.
As part of the project we really wanted to talk to people who had a learning disability to find out how the RESPECT plan would work for them.
We wanted to know what would help someone with a learning disability to make a plan for themselves so that if they became ill in an emergency situation, they would get the treatment that they wanted or not get the treatments that they didn't want.
For people with a learning disability, we had an advisory group who all had experience of living with a learning disability to help us with the project and to design the project .
Two groups of six people , took part in the study and those two groups took part in five workshops online, they worked with our researcher Jacqui Lovell.
In the workshops, they talked about what they thought of the RESPECT plan and what they would want to know about the RESPECT process if they were going to complete a plan. They gave us lots of suggestions about how people with a learning disability could be supported to make a plan for themselves. They said that it was important that they had plenty of time to think about the plan; and that they had information about the plan before they actually made a plan with their, with their doctor. They talked about having someone to support them when talking about the plan with their doctor and to have information that used simple language. They also wanted to have a copy of the plan that they could look at and talk to people about if they wanted to .
With the information that we got from the workshops we then wrote a guide to help people with a learning disability know about RESPECT plans. This was to help them think about making a RESPECT plan for themselves and what they might want to think about and who they might want to have there, when they made the RESPECT plan.
We then took that back to the advisory group and they went through that guide and made some more suggestions. CHANGE made an easy read version of the guide which the advisory group commented on. The guide was improved based on their comments and a final version was made, which is now available on the study website.
We also created some worksheets for people with a learning disability to use to help them think about ReSPECT planning before they sit down with their doctor to make a plan, and those are also on the study website.
Once we'd finished the project, we wrote the project up in a report for the National Institute of Health Research which now been published.
There is also an easy read summary of the research that we did with people with a learning disability which is available on our website for people to read.
CHANGE: So why did it include people with learning disabilities at every step?
Warwick University: We wanted to try and find out how RESPECT would work for lots of different people and we thought it was really important that we included people with a learning disability because we know that people with a learning disability often have other health conditions and they are more likely to go into hospital than people without a learning disability.
We know also from other evidence that people with a learning disability sometimes don't get the best treatment in an emergency situation, because healthcare professionals looking after them don't understand what their needs are.
So we thought RESPECT could be really useful for people with a learning disability and we wanted to make sure that we found out what was important to them.
So if we were going to do research about finding out what was important to people with a learning disability, we clearly needed to talk to people with a learning disability.
As a researcher, a lot of my research does not involve people with learning disabilities. It was really important for me to make sure that we worked with people with a learning disability and people like CHANGE who work with people with learning disabilities. to make sure that the research would work well and that we would be using methods of research that were going to ensure that we got the views of people with a learning disability as well as we possibly could.
We thought it was really important to involve people with a learning disability at every stage of the project, from when we first started thinking about how we would do this right through to when we produced our guides and our summaries that they were going to be useful for people with a learning disability.
CHANGE: Why is it that important?
Warwick University: I think it's important that we that we have research that involves people with a learning disability so that the results of the research make sense for people with a learning disability.
If we're going to do research that makes sense for people with a learning disability, then we need to be asking people with a learning disability what's important, what research is important for them and what is the best way to do that research
It was really important to us that we found out what people with the learning disabilities thought about RESPECT and what was going to help them with RESPECT in the future.
CHANGE: I think it's important for people with the language that they don't understand if they go to a doctor's and don't understand what the doctor's saying to them, then you've got to explain. I've got a learning disability, but what if that doctors would understand more for me because I've been to the doctor's or hospital, and they've got me mixed up.
Warwick University: I think it's really important that doctors and nurses and anybody else in in the hospital take time to understand what is important to a person with a learning disability and explain things clearly.
One of the reasons that we wanted to do this project was because it would tell doctors and nurses about what people with a learning disability need to know and what support they need to be able to record their wishes on a respect plan. Then hopefully that will make a difference when the person is in hospital in an emergency and needs to have the treatment that's right for them.
We hope that this research will help doctors and nurses to understand better how to make good respect plans with someone with a learning disability.
CHANGE: You’ve said that you weren't an expert in working with people with learning disabilities before this project. How did you navigate research with people with a learning disability?
Warwick University: The first thing we did was find a researcher who had done research with people, with a learning disability, and that was Amy Russell, who worked in Leeds. She has lots of experience and has done projects with people, with a learning disability. We invited her on to our project board for our main project and then through Amy we got in contact with CHANGE.
CHANGE was clearly just the right sort of organisation, with a lot of experience of working with people with a learning disability, and then we together with our project team at Warwick and with Amy and with people from CHANGE who provided lots of experience in developing developed the research proposal for this project. CHANGE helped us develop all the documents we needed to get approval from our Ethics Committee and to write the easy read versions of information forms and consent forms so we could invite people with a learning disability to take part. We would not have been able to do the research without CHANGE and without Amy to get us started and to help us write the documents and to contact people with a learning disability to invite them, to participate in the project.
CHANGE: Having read the report it's so clear that the voices of people with a learning disability, and their parent and carers are embedded throughout. Why was that paramount to your project that their voices were continuously heard?
Warwick University: I think because often in research we don't explicitly include the voices of people with a learning disability or their carers, and we thought it was really important for RESPECT plans because we thought RESPECT plans could be so useful for people with a learning disability. But we knew that we couldn't just do some research about RESPECT plans and say well, RESPECT plans are good, and we think that therefore people with a learning disability should have a RESPECT plan. We needed to make sure that if RESPECT plans were going to be of use to people with a learning disability, we had to have the voices of people with a learning disability and the carers of those people with a learning disability who weren't able to share their own voice. We thought that was important so we could understand what the challenges were and what kind of support they might need.
CHANGE: Thank you ever so much, Anne. That was so useful and interesting, to hear about it from your perspective. CHANGE and the people with learning disabilities that we work with have recently talked about the hard work that we all did, and it is just something that we are so proud of and grateful for the opportunity to support with this important work and will continue to do so going forward.
We're passionate about just continuously improving the lives of people's learning disabilities and that is something that's really going to come from this research and the worksheets and resources that we co created together.
Warwick University: Well, I'm glad that you're proud, but we are proud as a research team in Warwick of this work. And every time I talk to somebody about it, they're always really impressed with the amount of engagement we've been able to do. I wish we could have done more, but I am proud of what we have achieved, and we couldn't have done that without CHANGE, and we couldn't have done that without our advisory group.
So it's been a learning experience for us, but it's been a really worthwhile experience and an enjoyable experience.
Just to say the Resuscitation Council UK who are the people who oversee RESPECT for everybody in the UK, have been really interested in this work and the resources for the people with a learning disability. They have a stakeholder group, and they specifically have included someone representing people with a learning disability, to feed into the stakeholder group for developing further learning. So hopefully it's going to make a big difference.
CHANGE would like to take this opportunity to thank Anne-Marie Slowther, Amy Russell and Jacqui Lovell.
