Podcast Episode: Coronavirus and people with learning disabilities
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
Michael: On this podcast I went to find out about a study that Glasgow University has undertaken. They’re interviewing people with learning disabilities about their Coronavirus. So, I was speaking to one of their researchers at Glasgow University, Roseann Maguire. Also, I spoke to one of their participants of this study, Sandy Stark.
So, Roseanne, tell us what this survey is about please.
Roseann: Well what it is, is, we wanted to provide data about the lives of the people with learning disabilities during the Covid pandemic. So we set out to find out about the experiences of adults with learning disabilities over time and across the UK, and to try and identify what might lead to better outcomes for people with learning disabilities during the pandemic.
So, the research focuses on three key questions: what are the wellbeing, health and social affects of the Covid-19 pandemic, including like social restrictions and changes and changes to how people are supported on the lives of adults with learning disabilities across the UK over a time period. So, we spoke to people, started last December … December to February, first wave. Then we spoke to people again, April to May and now we’re speaking to people in July and August. So, we’ve got three different time periods to see what the impact of both the pandemic and changes in support etc. have had on people’s lives. We want to look to see what can be done, what actionable factors can relate to better outcomes, so that we can look at what things have helped people and maybe provide policy makers and governments and organisations that support people with learning disabilities, with the evidence … with the data of what helps, okay, and also to ask people during these time periods, what urgent issues are important to them. So, we’re coming to the end of the study now - data collection finishes this month, in August, and then we’ll be able to look at the responses over the three time periods to provide more information for policy makers and organisations.
The funding came from the UK Research and Innovation, the Medical Research Council, and it was a rapid response to Covid. So, the principal investigators are Chris Hatton and Richard Hastings, who are based in the Manchester Metropolitan University and the University of Warwick - and they consulted with other academics in 3 other universities that are involved, and one of them being here, at Glasgow Uni. And the principal investigator here is, Andrew Jahoda, and there’s two researchers working on it in Glasgow, myself and Amanda Gillooly. We have partner organisations that Sandy knows about because Sandy is part of our advisory group with SCLD, and we consult with them before we start the questionnaires, to ask them what the key issues are for people with a learning disability. And then we feed back to them, we devised a questionnaire, we feed back to them and ask their advice before we start.
Now the reason why the survey was started in the beginning, and then I’ll stop and let Sandy get a word in here okay, was that there was national surveys taking place about the impact of Covid-19 but we felt that people with learning disability weren’t given access to these surveys because a lot of them were online and they were in a format that wouldn’t be easy for people with learning disability to understand. So, the idea was for interviewers, who were experienced in doing research with people with learning disabilities, to interview directly a thousand people in the UK. And also, for people with learning disabilities who weren’t able to speak for themselves, for their carers … whether it be a family carer, or a paid carer, to take part in an online survey about the impact on the life of the person with learning disabilities. So, that’s kind of the format of it. So, where we are now is, we’ve collected data twice. So, we’ve got two sets of results and we’re just beginning today to start interviewing again. And as you know, I’ll be interviewing you, Michael, as part of the study, and I’ll be speaking to you Sandy about … well, we speak to you anyway, about the results and about the interview questions and what you think of them.
Michael: And Sandy, Roseann was mentioning about the group that you’re involved in but I suppose, I wanted to ask you how did you get involved in this bit of work?
Sandy: Well it was just through the SCLD themselves really and it was through their Stay in Touch … well it was through their Stay in Touch page when the Covid19 pandemic first started. The SCLD, I thought the SCLD were just about the young Scotland’s Got Talent, when they got to go out on the road and meet, you know, showcase for people with learning disabilities, how difficult and how easy it can be to get into employment and things like that. So, I’ve always been kind of working in the background with the SCLD but since I joined the Stay in Touch page, so many doors opened up.
You know, I did my Good Friday Feeling Disco, that you come to Michael. A lot of the staff seen how engaged I was with the members of the Stay in Touch page and then it’s just kind of grown arms and legs from there really. And they seen how passionate I was about for people with learning disabilities and how difficult it’s been for them through the pandemic - and SCLD can see how much of a driver that I am and how passionate I am to try and get the word across to them as well to try and get them involved in as much things as we can. I think the research from the Glasgow University and you know Glasgow University asking the SCLD to be part of a great big project like this, I think it’s been absolutely amazing.
Michael: I suppose, I wanted to ask you this question, to you both but obviously Sandy was involved in a kind of like steering group as it were but how important is it for people with learning disabilities to have a say on the Coronavirus? Because everybody has a say but people really forget about people with learning disabilities sometimes so how important is it to have your say and all that and feedback to Glasgow Uni?
Sandy: I think it’s really, really important and I think this has shown how important it is for every organisation to come together and different ways of coming together cos you can do it on teams or you can do it on zoom or whatever. And it’s okay for people with learning disabilities kind of fall through the gaps if you like. The pandemic has definitely made me a lot more stronger as well and it’s got me involved in so much other organisations. I’ve basically been the driver for … up here in Aberdeen anyway, you know, I think I got at least about 20 to 35, maybe 40 people signed up for this important bit of research and it’s just been absolutely incredible. But I’ve been doing so many talks from day one and it’s built my confidence. And I mean if I can do something, I just want to pass my skills on to somebody with a learning disability to say, look, come on just give it a go. Because anything, at the end of the day, anything is possible.
Michael: Roseann, I was going to say the same kind of question but how much is it important for Glasgow Uni to work with the Scottish Commission for Learning Disabilities?
Roseann: It’s been absolutely crucial. We would never have been able to get to as many people without help from SCLD and all the other organisations that they contacted, because they know everybody in the field of learning disabilities in Scotland. So, what happened was, we went to them … well, they were involved, they agreed to be part of the project from the start. So, once we knew, we kick started the project, we went to SCLD and they helped us recruit everybody, either directly or through other organisations or through the likes of yourself Sandy, who was an immense … I mean, I’ve got a list here of interviewees and next to it is, “recruited through Sandy”, “recruited through Sandy”. So, it’s just kind of went out there, and you helped as well Michael, you did a little … a wee video for us, didn’t you, to tell people that the study was happening and why it was so important that we hear … because as you both said, people with learning disabilities are very often left out. They were kind of left out of the national studies. So, it was crucial that we get to know about their experiences so that we can inform policy makers and service providers about what the impact of Covid has been and also, it’s been really interesting to see how some people like Sandy, have really, you know like you said, you’ve gained in confidence through doing lots of different things. You’ve had different opportunities.
Sandy: Because I mean, I would never have thought of, for an example, to even go and do my security guard, my training and whatever, you know that was a great big step and I feel for people with learning disabilities, you know when they’re at school and then when they leave school … you know they kind of get left or they get told, “this is what’s suitable for you”. They get told what to do, they don’t get to make their own decisions, and I think that’s totally wrong. I think the pandemic, for myself, has been really, really crucial for me –because it’s opened so many doors for me to work with so many different people. That maybe people that have been quiet and things like that, and they’ve maybe not tried to come out their shell, or they don’t want to try and come out their shell, but if I can give them a wee bit of coaching and yourself as well, Michael … you know, you’re such an inspiration as well in everything that you do as well. But it’s people like that, that need to look up to us and go, right okay, if they can do it, so can we.
Michael: Well thanks for saying that, Sandy, I never gave you money for saying that but thanks for saying that [laughs].
Roseann: Are you sure?
Michael: But yeah, I suppose you’re right Sandy, from a disability point of view as well, because I don’t know if you would agree, but I think there’s more opportunities opened up. Especially for me during the pandemic and I’ve seen people with a disability working positive, whereas if it wasn’t for Covid, I don’t think that they would still be in the same old rut as it were. You know, there’s more kind of like opportunities opened up as well.
But what I would say, just to back that up would be, it’s very good that you’re taking the survey out to people with a disability, because I don’t think this would have happened, in my opinion. I might be totally wrong here when I say this but, this survey wouldn’t have been done about 20 years ago on this matter and they wouldn’t get people involved in this experience. I don’t know if you would agree with that point?
Roseann: I would agree. I’m not sure of the timescale but I would certainly agree, it wouldn’t have happened in the past. I’ve been doing research now for over, my goodness, it’s got to be 30 years and yeah, how research is done and how we involve people on the research has totally changed. And so, we involve people more now than we would ever have done in the past. And your point though about whether actually a survey about impact on people with learning disabilities would even have happened even if it had been research led, you could well be right there, Michael. But certainly, things have changed over the last 20 years, and partly as a result of advocacy groups, etc, saying: “we’re here, you need to listen to us, you need to talk to us”. Totally agree with that, I think that’s right.
But what I would say, maybe just to counteract the positive experiences that you two have had about the pandemic … I mean the reason the study is so important I think, is because we look at the lives of many people with learning disabilities, with diverse support needs. And you’re talking about feeling more confident now, Sandy, but a lot of people might be feeling less confident. Particularly we’re hearing from carers of people with profound and multiple learning disabilities. Because that’s our other partner organisation that I should have mentioned at the beginning, is PAMIS: helped us recruit parent carers. And they’re finding that because of the closure of services, and the now very limited access to services, their family members are really struggling because they’ve lost all the things that helped motivate them and kept them going and built up their confidence and their skills. So, the experience of people has been very varied.
Sandy: I think as well for the government as well though, I think the government have learnt a lot through this with learning disabilities as well. I know, this has maybe taken 20 years to actually get this point across, but it’s not just a case of somebody sitting in an office and ticking something off or taking a service away now. The government are actually thinking, right okay, we need to come to this group and hear what people have got to say, with a learning disability. And it just opens up another can of worms basically because everything is coming out in easy read or video format. Everybody with a learning disability … we’re all different, but we all treat each other in the way we want to be treated basically. It’s getting there, I can feel a difference and that’s why there’s so many groups. This is why everybody wants to work with each other now because we’re all kind of singing off the same hymn sheet.
Michael: Yeah. So, Roseann, just going back to the survey. What’s the most common theme that you’ve obviously, you’ve not completed … well I suppose, there’s three waves to it and obviously I’ve done two already, I’ve got one to do. But what’s the common theme that you would see it from both sides, from disabled people and from carers as well?
Roseann: Right, well I think the biggest impact could be the services. About restrictions to services and closure of services during lockdown, that had a major impact … and things being not back to normal, people out of routines, not doing the same things that they were doing. I mean, what we’ve looked at is health and wellbeing and what are the urgent issues and that comes up a lot about services: about health, the impacts on mental health and wellbeing. So, what we’re going to do is track that over time.
As you know, we’ve produced results already which give kind of hard facts about, you know, like in the first lockdown some cases, 98% of people were getting no day services and that’s changed a bit for the second wave. But the way they access services, some might be online activities, some might not be. Again though, it’s nothing like the capacity it was prior to the pandemic. So, we need to look at that, and over time what we’ll do is we’ll look at that, and we’ll look at what other things were going on at the same time like, was there a change in mental health and wellbeing? What helps mental health and wellbeing? And begin to ask those kind of questions.
But the important thing is if we’ve got data there and that data can be used to inform decisions that policy makers and service providers take, because as everything is at the moment, it’s supposed to be data driven. So, we need to give the data for people to make decisions and also it’s good to give them to organisations and to advocacy groups themselves and say, this is what life’s been like for people.
Michael: I was going to say as well, that when we come out of Covid, hopefully touch wood, very, very soon, are you going to come back and do a follow up survey to see has anything changed? Because I’m a big believer, I don’t know about you Sandy, but I believe that services weren’t working very well for people with a learning disability or physical disability, you know call it what you will. And so, we’ve been in a so-called lockdown for over a year now, we need to build back, well as government speak like ‘build back better’, but build it around people with disabilities or make people with disabilities at the forefront. Because I don’t know about you Sandy, but services were designed and then they get disabled people in but it should really be like the other way about. Should be led by people with learning disabilities before that they actually start the service.
Sandy: Yes. And I think as well for people with, you know the learning disability side of things as well, you know their support plan will change a lot now as well because they’ve had to cope with Covid and whatever. But somebody with a learning disability shouldn’t have to go and … if they want to go to a new organisation or whatever or volunteer for them, their support plan should go with them, if you know what I mean? And that organisation shouldn’t make up another support plan. Because I’ve had so many like different support plans made up every time I went to a different organisation and it’s very hard to be sitting and somebody asking me questions about this when nothing has really changed for me really … when I can just take my support plan and go, look, there’s all the information that you need to know about me.
Roseann: To answer your question, Michael, about whether we’re coming back. We are going to apply for funding so that we can come back because as you know, we’re not sure what the future’s going to look like anyway post pandemic or whether we’re going to be living with it for a bit. So, the idea is, yeah, definitely. And in wave three, what we’re doing just now, is we’re asking our participants, if we can contact them again, would they be willing? But there is definitely plans afoot to come back.
And like you say, yeah, to see what’s happened to services because one of the things we’re finding is that people don’t know what the services are going to look like. And that’s a big cause of concern, that isn’t a kind of finding but and talking to people, you’re getting to know, well what are your concerns? Well, we don’t know what the services are going to be like. Will it go back to that? Will it be different? So, it would be good to come back again and find out. And may be by talking to yourself and to Sandy, build in some questions about, how involved in, were people with learning disability, in designing whatever service package that is offered to them. So, that in itself, just this conversation’s already kind of gave rise to a question for the new questionnaire. Should we get the money to do it?
Michael: I think as well that, not really a question, more of a comment about when you were mentioning about carers earlier on … I’m a big advocate about carers look after their loved ones, whether they’ve got a disability, dementia, call it what you will but what happens if a carer is not well? Who’s going to be there, to like, look after them? But nobody speaks about that. That’s … I don’t know, maybe, that’s a taboo subject at the moment. But they speak about the carers doing wonderful work but they don’t actually speak about well, what if they, God forbid, what if they get Covid or what if they take not well? Who’s actually going to look after the person with a disability or dementia? So, there’s lots of questions to answer there.
Roseann: Yeah, and one of the things we’re looking at in the survey is the impact of caring on the health of carers. Because the burden of care, to use that term is probably the wrong term but just say the actual care, because of the Covid situation has fallen very heavily on the shoulders of family carers because there’s no day services and there’s no respite services or very little respite services. That was one of the things that we have found. Organisations like PAMIS have been putting this forward, they are saying we need support to care for our loved ones and there are a lot of difficulties around that but we want to keep that, like you say, on the agenda of policy makers and on service providers. But because people have coped so well, doesn’t necessarily mean they can keep doing this.
Roseann: As you say Michael, there has to be service provision out there to support and if day services get back up and running and perhaps more individualised services or something, then things can be put in place with a bit of imagination, I think.
Michael: Yeah. I mean, I was coming from the point of view about pre-Covid, you know, before we even heard of the Coronavirus, as well. You know?
Roseann: Uh huh.
Michael: But I just wanted to finish on this kind of question about mentioning at the top of the interview about you were doing this as part of a UK wide study with different universities. Why is it so important to team up, well not team up … team up is the wrong word to use, but why is it important to work alongside other universities in the UK?
Roseann: To do the study? Well, it’s important that we look at the impacts of Covid across the four nations because different countries have been doing slightly different things about Covid. So, there’s a couple of reasons why it’s important, so that’s one of the reasons. The other reason is, it’s good to know if the experiences of people are the same or are they different. What’s going on in different countries? Because service provision could be organised differently as well, so we try to find out a little bit about that. And also, it’s just good to work with other people and you get a broader range of views. Plus, if you get everybody together, it can make more of an impact.
If we’re saying this is happening across the UK, there might be slight differences between Scotland, Northern Ireland or England and Wales. At the moment it’s looking that many things are very, very similar. We’re not finding any huge differences in terms of service reduction or access to health care or anything like that. They’re broadly similar throughout but once we begin to look across the three waves once we’ve got all the data, we might find some little differences. But no, it’s been good, it’s been good to work with the big team, personally, and find out what’s going on in different organisations. And I think it’s also helped to bring the partner organisations together, the likes of Learning Disability England, and SCLD and PAMIS and other carer organisations and know to share their experiences just now.
I think that’s been quite good for all of us in terms of Covid, isn’t it? Like you say, some things out of Covid have been quite positive, that kind of sharing of experiences. But I take your point very much, Michael, about looking at what services were like beforehand and let’s not think that whatever we’re going to get is going to necessarily be better. You want to, like you say, make sure that people with learning disabilities and their families are in there from the start to make sure their voices are heard. And what we’re trying to do with this survey is provide that data … “this is what people with learning disabilities are telling us and their families”. Because we will be asking, what services do you want coming out of lockdown, so we will have some data about things like that. I’m getting all fired up here thinking about coming out of it, and what we can do going forward.
Michael: I know, I know. That’s my fault. Sorry. Yeah, thanks for that and good luck with the rest of your interviews.
Roseann: Right, that was lovely. Thank you very much for having us.
Sandy: Thank you very much Michael.
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