The 40-year-olds who are in bed by 5pm

17th September 2024

bbc.co.uk/accessall

Access All – episode 125

Presented by Emma Tracey

EMMA-               I absolutely love you listeners, and I will tell you for why: because your emails are epic. Can I say thank you to Gail who got in touch with us when she found us on 5 Live one night when she couldn’t sleep. So, thank you for going on and subscribing after that. Very good idea, if you’re listening on 5 Live. Gail is blind and in her 70s, and she’s really enjoyed the Paralympics coverage, so we really, really appreciate that.

Also thank you to Jane who wrote in. Now, Jane found us through a post on Matt Forde’s Instagram. Matt Forde was one of our guests at Edinburgh; he’s a political comedian. But he had some nerves cut when he was getting cancer removed from his spine and he now has to use a catheter when going for a wee, and he talks about that quite a lot. And also this is in Jane’s future so she was really, really interested in that. She listened because she saw it on Matt Forde’s socials, and then she went back to the beginning of 2024 and listened to every single episode. Jane, I love you. But Jane said what particularly caught her attention in the Matt Forde episode was the naming of disability equipment, attachments etc, because she has always done that but didn’t realise it was a thing. She tells us about her gallstone called Gary. He doesn’t really cause much trouble apparently, he’s pretty silent, so that’s good. Well done, Gary. But also her catheters: now, her first catheter was called Clive, and he was supposed to work 24/7 but he literally just stopped, knocked off whenever he liked. So, that was Clive the Catheter. After that she got a catheter called Camilla. Why is it called Camilla? Because she says if you’re going to have a pipe up your urethra it needs to be a queen. Love that. And she says that it’s a bit sort of difficult if she does a big bow, kind of hurts a bit, so she has to do a curtsey, so that even sticks with the royal theme. Jane said she wasn’t sure that she could call herself disabled, she’s autistic, she’s got some mental health stuff going on and some physical health as well, but having listened she feels like Access All are her people. And we think you are our person too. Welcome to the gang, Jane, and thank you so much for your incredible email. Can you do better than Jane? If you think so email accessall@bbc.co.uk. And don’t forget to subscribe on BBC Sounds. On with the show.

MUSIC-              Theme music.

EMMA-               Welcome to Access All, the BBC’s weekly disability and mental health podcast. I’m Emma Tracey. And on this week’s episode we find out what happens to people with learning disabilities as they hit the age of 40. And Paul Carter speaks to one of the new disabled MPs, Marie Tidball.

                           Turning 40 can be a tricky milestone for many of us, but it’s particularly difficult for many people with learning disabilities. New research from Manchester Metropolitan University has found that when you're a member of this community hitting 40 means that your levels of fulfilment drop considerably. Now, that’s down to a lack of social opportunities and access to meaningful activities. The researchers want that to change. And joining me now to tell me more about it is Pam who has learning disabilities herself. Hi Pam.

PAM-                  Hello.

EMMA-               Now, you work for My Life My Choice, which is a charity led by adults with learning disabilities. What does your job involve?

PAM-                  My role is a consultant at the charity, so I oversee all of our projects, which is quality checks, which is going in and inspecting people’s homes to make sure they’re safe and liveable and they’re well looked after in their own homes.

EMMA-               Well, that sounds like really important and useful and sometimes fun work as well, Pam.

PAM-                  Yes it is, yeah.

EMMA-               Also joining me is Professor Sara Ryan from Manchester Metropolitan University, who led the research called Growing Older with a Learning Disability, and who got Pam involved as well. Hi, Sara.

SARA-                Hello.

EMMA-               Why did you choose to lead on research around getting older with a learning disability?

SARA-                I was working with a small charity in Oxfordshire around older family carers. It was a big Lottery funded project. And we went to people’s houses where they were in their 70s and 80s and they were still caring for a daughter or a son with learning disabilities who was in their 50s or 60s. I just didn’t realise that people cared for that long, and I just didn’t really understand why the people being cared for, the people with learning disabilities weren’t living independent lives as they should be. So, that sort of sparked off an interest in doing this research, which we were funded by the National Institute of Health and Care Research. And we set out to find good support for people with learning disabilities as they grow older. Researchers would spend time with people who lived in those houses, homes, and find out what was good about it and how we could replicate that good to spread across the country. Because obviously a lot of people with learning disabilities lead very poor lives.

EMMA-               Tell me about some of the people that you met and some of the main findings from this research?

SARA-                The researchers thought they were going to be spending time where people were leading very good lives, fulfilling lives, and ageing with meaning – which is what the World Health Organisation says, people with learning disabilities have a right to lead lives as they grow older that are full and meaningful. And we found that quite a few people that we spent time with didn’t, and that provision wasn’t good.

EMMA-               And what kinds of stories did you hear about people who weren’t living the lives they wanted? So, you already talked about people who were caring for and being cared for by older parents who were coming to the end of their lives. What other stories did you hear about people who weren’t being fulfilled who were older with a learning disability?

SARA-                We heard about people who were put to bed at 5 o’clock every evening with the radio on. We heard about people who lived in a house with people that they really didn’t get on with, and they’d lived together for about 10 or 15 years in one case. We heard about people who lived in shared life settings; so supposedly they lived with another family. So, you live with another family, fair enough maybe, although that family is going to grow older so you’re going to reach the same problems that you do if you’d stayed with your own family. But in one part of the country where we spent time with shared lives providers in the daytime people with learning disabilities were sent to a day centre which was literally a room for their whole day where the television was on. People were just bored.

EMMA-               Pam, you worked with Sara on this, what was your role in the research?

PAM-                  We co-produced a project. My role was just doing the interviews and seeing who wanted to be on the project and be involved in the research.

EMMA-               Were you surprised at what you found? What were the things that were most surprising to you?

PAM-                  People being shoved in rooms and not actually getting out and living in the community and enjoying the community, like most of us.

EMMA-               Yeah. Were you surprised at that?

PAM-                  I was very surprised, yeah.

EMMA-               You went abroad, Pam, to talk about the findings of the research. You went to Iceland. Can you tell me about that?

PAM-                  Yeah, we went to Iceland and presented at the Iceland’s conference. Yeah, we presented there and it was the best presentation they’d heard all day, so it was really enjoyable to actually get out and take it somewhere else.

EMMA-               And for both of you when you’re talked to other countries about your research have you found that it’s the same in other places? Where does the UK stand in terms of older people with learning disabilities and their quality of life?

SARA-                Here in England we sort of have poor care. We don’t treat people like they’re humans, which allows them to be very abused and impoverished in terms of not enjoying their lives. There’s no aspiration, there’s no expectation that people will have relationships, get married, have children, go to work. And so when people grow older their life has been the same as it was ten years ago, 20 years ago.

EMMA-               Pam, you worked on the study but you also have your own experiences as a woman of a certain age with a learning disability. Tell me about those?

PAM-                  I struggled at school and college when I was younger. But I did get a good job, and now I can live in the community and enjoy my life, and go to gigs and events and stuff.

EMMA-               So, you’re very independent. How have you managed to achieve that, Pam, when so many people in your situation are struggling to be fulfilled?

PAM-                  Well, through My Life My Choice and being part of that charity has made me make loads of new friends, and getting out in the community is a great idea. I mean, I’ve managed to get in the community myself by fighting for the community. I’m now married, happily married, 26 years nearly [laughs].

EMMA-               Oh wow.

PAM-                  And I have stepchildren. I’m very happy living in the community and being part of My Life My Choice.

EMMA-               Have you got friends, well you’ve just told me you’ve got lots of friends with learning disabilities, do many of them have the quality of life that you have, Pam? Or are you particularly lucky, do you think?

PAM-                  No, a lot of them have good lives. There’s a lot that have been shoved in day centres and are just doing plastics into boxes and sorting out plastic, which is not a good life I think.

EMMA-               So, boring jobs. So, they might have a job but it’s not fulfilling?

PAM-                  No, it’s not fulfilling.

EMMA-               Okay. Sara, why do so many people have these bad experiences? You mentioned difficulties around care. Is it also around awareness in wider society of learning disability and of what’s needed?

SARA-                I think there’s an ignorance that people are treated in ways that isn’t really seen. It’s almost like if you have a learning disability professionals who have had all that training, all that experience, just stop seeing the person; just see a learning disability, and then lose any sense in terms of what they’re doing. If you think even in our research finding people who are put to bed at 5 o’clock with a radio; people weren’t allowed drinks after 6pm. 50 or 60 years, could you imagine not being allowed to go in the kitchen and being able to get a drink?

EMMA-               Yeah.

SARA-                Being put at bed for 5pm and they’d be in that bed for the next, well it’s over half a day, isn’t it? 5pm and then get up at 9 or something, that’s 16 hours of the day you are in bed. I mean, that is barbaric.

EMMA-               It’s a massive lack of stimulation, isn’t it? But Sara, many of the professional bodies who are looking at the quality of care for older people with learning disabilities might say that the system is working because these people have access to good food, they have access to decent lodgings. I mean, you’ve mentioned many of the problems, but I guess it’s hard for a professional body to say something is wrong if the basic needs are met.

SARA-                That’s so interesting because that’s what the Care Quality Commission used to do, it used to be are you safe, well fed, clean; if you were then you’ve got a good life, you get a good rating. But that is no life at all. You have to lead a life, and our research found a good life is a life that’s growing, a good life is a life when you do different things, when you go out and about and you mix with people and you do what you like, and if you love being out in the fresh air you go out in the fresh air. That’s what a life is.

EMMA-               What are the changes that you would like to see to make sure that as many older people with learning disabilities in England can live the lives they want?

SARA-                I think money’s a feature obviously because of the social care cuts that we’ve had and being in a period of austerity. But it’s not just about money because one provider that we spent time with everybody they supported had a key worker, and they changed that key worker after six months so the person didn’t get too attached to them. The basis of good care is affection, is to like the person you’re supporting. That doesn’t cost money; that’s about culture.

EMMA-               Pam, what would you like to see change?

PAM-                  Get people out into the community and enjoying the life they should be enjoying, and not stuck in rooms.

EMMA-               And what do you hope happens now that you’ve done this research? What do you hope this research will do?

PAM-                  Hopefully it will get people in the community where they belong, and the right support.

EMMA-               Well, Pam, keep doing what you’re doing. And Sara, the same. Pam and Sara Ryan, thank you very much for joining me.

                           We contacted the government about some of the things that Sara Ryan and Pam said in this episode and they told Access All: We contacted the government about some of the things that Sara Ryan and Pam said in this episode and they told Access All.

MALE: “We are determined to tackle the significant challenges facing social care head-on. This government is committed to ensuring everyone is able to live independent, dignified lives.”

FEMALE A spokesperson for the Care Quality Commission said: 

“In addressing recommendations of where care has fallen far short. We developed an approach that improves the CQC's ability to identify and take appropriate regulatory action in services that fail to meet the aspirations of people with a learning disability and autistic people.”

MUSIC-

EMMA-               Do you remember when I interviewed someone from every major party, apart from Reform UK because they didn’t put anyone up, in the run-up to the General Election? Now, I asked them how many disabled people they had standing for election, and some of them didn’t really know. And it is a bit complicated, to be fair. But after that John Pring and the Disability News Service put in a freedom of information request. They wanted to know how many members of the new parliament had discussed disability related adjustments, and whether they would possibly need them. And the result that came back was 43. More than 20 of those went on to have their adjustments agreed. And there were less than 10 disabled MPs in the previous parliament. Obviously that’s not a definitive number of disabled MPs because some don’t disclose that they have a disability, but it is looking like it’s far more disabled people in this parliament than it was in the previous one which had around 10 disabled MPs. Now, one new MP who is very open about her disability is Labour’s Marie Tidball. She has a disability affecting her four limbs, and shortly after she was elected she spoke to Paul Carter about settling into her job, finding an accessible office space, and about what more there is to do to make politics more accessible. So, here’s that chat between Paul Carter and Labour’s Marie Tidball:

PAUL-                 Marie Tidball is the Labour MP for Penistone and Stocksbridge, and has a formidable task ahead of her: she’s pledged to smash the glass ceiling which is currently preventing more disabled people from getting elected. Before she entered the Commons Dr Tidball, to give her her official title, had a long career as an academic and briefly as a journalist, and she’s been a lifelong disability campaigner. Hello Marie, welcome to Access All. Thank you for being here.

MARIE-              Oh, thanks so much for having me. It’s great to be here.

PAUL-                 Now, obviously people who are listening to this won’t be able to see, but I can see on my screen you appear to be in quite a grand looking location. Whereabouts are you at the moment?

MARIE-              I’m in a ladies’ members room because none of us have offices yet, none of us new MPs, so we’re all just trying to find little places that we can work that are quiet and then do things like this.

PAUL-                 How are you settling into life as an MP? I mean, I know it’s not been very long yet.

MARIE-              It has been a whirlwind because we came straight down to parliament on the Monday, straight after having been elected on the Thursday. And I have to say that parliamentary staff have been incredible. I spoke to the workplace adjustment team almost straightaway; they rang me on the Saturday after I’d been elected. They’ve done a really brilliant job working out what support I would need and any help with day-to-day things before I get staffed. Because being a Labour gain, happily, I don’t have a staff team in place that I can take on from the previous MP, so that’s quite a long process. And so I’m in the process of recruiting PAs to help me with some disability-related support, diary management, that kind of thing. And then I’ll have my full constituency and Westminster staff team. So, it’s quite a lot of work but it’s been really great. And I was sworn in, needed a special session with some of the other disabled MPs so that we didn’t have to queue for very long, which really, really helped. And also working out ways to reserve a seat for me in chamber without me having to go down early in the morning and do that myself.

PAUL-                 What was campaigning like for you?

MARIE-              I discovered not long after I’d been selected that I’m the first person in over 100 years to have grown up in my constituency to go on to be a Commons Member of Parliament. And it was just such a poignant part of the campaign. When I was door knocking I met teachers that I hadn’t seen for 20 years. I also bumped into my special care baby unit nurse when I was out on the campaign trail who hadn’t seen me since I was really tiny. And for when I was born they didn’t know how long I would live for and what operations I might need, so the fact that she just turned around and saw me on the doorstep was a thoroughly emotional moment [laughs].

PAUL-                 Do you have any specific access needs or reasonable adjustments you needed?

MARIE-              So, it was challenging, but because I’d been a councillor and cabinet member previously I kind of knew what to expect. And early on the key thing for me was motivating lots of people to come and help with the campaigner. So, my crew of drivers were just fantastic, and had great tunes along the way as well [laughter] which made it all the more enjoyable.

PAUL-                 It always helps, you’ve got to have tunes, right. So, I’m sure you’re aware there used to be the EnAble Fund for elected office which offered grants between £250 and £40,000…

MARIE-              Yes.

PAUL-                 …to support disabled candidates standing for election. I mean, it isn’t available anymore. Is that something that would have been helpful to you, do you think?

MARIE-              Definitely I think it would have been at different points. I think it’s useful to have an overall sense of what disabled people might need and sharing our experiences. And there was a lot more resource available in terms of staff times. But I think generally that does need to be there, and possibly even thinking about the kind of support that could help disabled candidates across all parties during this election process, because that’s another segment which has got its own barriers and its own issues. So, I’m really proud that the party overall has said that we very much want to learn from the benefits from the all-women’s shortlists that Labour put in place in the Equality Act in 2010 to make sure that we are looking at how we increase and improve representation at all levels of government. And I think that’s very exciting to me because we know that there are 14 million people in this country who have a disability, 20% odd of the working age population, and we definitely need to have more of us in parliament. So, it’s working out how we can remove those barriers and make that more accessible for more disabled people.

PAUL-                 Yeah, you’ve touched on it there, how do we go about making that change? You mentioned women-only shortlists there for example, what about disabled-only shortlists? How would that work?

MARIE-              So, this is something that I have written about in the past and how you might want to make that change. I think having spoken to lots of people within the disability community and other disabled friends I think there are views on both sides and whether they think it would work for them. But I think it has to be an open conversation and then put forward the benefits and disbenefits and come to a consensus collectively on what they think might work. But for me at this stage it’s also about opening up those processes to describe the things that work well for me, and the bits of advice that I can give in terms of things that help. So, as I say, the way to balance your time during a long campaign, because I was a candidate for two years so it was a long slog.

PAUL-                 And as we mentioned, it’s only been a few weeks, how are you finding the House of Commons and the parliamentary estate in terms of accessibility? Because, as we all know, it is a very old building and very old estate. How are you finding just basic things like getting around and being able to do your job?

MARIE-              Well, at the moment we don’t have offices, but no new MPs have offices yet. And the whips on our side have been really supportive in talking to me about what my needs would be, what would make it most accessible. I’m hoping to go and look at a possible office this afternoon. The key thing has been how helpful the staff have been in parliament in terms of assisting people to navigate around the space. And it is long distances, and I very much plan my time so that I do the things that I need to do when I’m in certain parts of the building so that I don’t have to go back and forth across different bits of the estate. When I get my diary manager in place in September we’ll very much be working with them to make sure that they consider that. There are accessible routes around most of it, and all of the doorkeepers and other staff members here and security are really good at pointing those out, and where the lifts are. So, a lot of it is really about time management and thinking about where you’ve got to get to at what point. So, that is a bit of a challenge, and it’s a challenge because I tend to carry lots of heavy things. But there have been parliamentary staff that while I don’t have my own team have been really helpful in helping to get bags across the estate for me when I need that. And we’ve got lockers on site.

PAUL-                 It was recently announced that Stephen Timms is the new Minister of State for Social Security and Disability. That’s quite a big brief. Disability campaigners are asking how much time he’ll actually have to take on the challenges facing disabled people.

MARIE-              He is an extremely experienced parliamentarian. He’s worked in the Treasury previously. I have no doubt that he is absolutely suited and will be able to meet and rise to that challenge, and is already doing so. But what I’m really enthused about is that right across our manifesto, because we had the missions, each of them were very much seen to be intersecting, and disability was considered right across the piece. And speaking to quite a lot of my Cabinet colleagues at different times over the last two years as I have I know so many of them are really passionate that disability is woven through absolutely everything that we do. So, if we just think about, for example, mandatory disability pay gap reporting, that’s front and centre of what we’ve said we want to happen for organisations over 250 people. We want to make sure that there are stronger family-friendly rights, including carers leave, in our new deal for working people. I’m thrilled that if you look at every single strand of each of the missions there is thinking about where disability is relevant, making sure inclusive living is a principle that’s at the heart of the work that we do on independent living. Yes, Stephen’s got a big job; but he’s absolutely up to that and I know will do that really, really well.

PAUL-                 But surely you can understand people’s concerns? We’ve seen a lot of conversation about this that wouldn’t it help to have a minister whose brief is solely disability, as it has been in previous governments?

MARIE-              Well, I think Stephen will deal with the job really well and in the portfolio he has. And I’m very much a believer that the approach that the UN take is the right approach, which is you look at how you can weave disability in across all areas from a very general perspective, and then you have focus on specialist areas. And that’s what Stephen will be doing. And I think actually there is a value to making sure that it’s not just seen to be relevant to one minister’s brief, because actually we get a much more inclusive parliament, a much more inclusive government, if everybody recognises it’s relevant right across the piece.

PAUL-                 And you’ve mentioned a lot of the policies and initiatives that the government are planning around disability. I guess the big question is how long is all of this going to take to enact?

MARIE-              I know that there’s a real drive to move at pace for the work on making sure that Access to Work is improved. We’ve seen a real negative growth in the waiting lists for that and workplace adjustments as a result. And the Labour Party is really determined to try and speed that up, and I think that’s something that they’re really keen to pursue as quickly as possible.

PAUL-                 So, we mentioned you’re an academic too. you had a book out earlier this year called Disabling Criminal Justice. Can you tell me a little bit about that and what that was about?

MARIE-              Yes, so Disabling Criminal Justice is about the treatment of autistic adult defendants in the English criminal justice system. And I did a piece of work that involved research following eight autistic defendants through the court process over a number of years. When I was following the defendants through the court process I ended up getting to know and sitting with, often while I was watching the cases, their family members. And so one of the chapters is about the impact of that process on their family members. And again, that wasn’t something that had been looked at previously. It was tough to write sometimes, and I really wanted to make sure that I’d done a thorough job. So, I hope there’s some really meaty material for people to get their teeth stuck into.

PAUL-                 Between being a campaigner, an MP, an academic, a mum, your life sounds incredibly busy, what do you do to let off steam?

MARIE-              That very much is the case [laughter], but happily so. Well, I love spending time with my little one doing quite a lot of creative things together. I haven’t had chance to do it for a long time but I really, really enjoy doing a bit of drawing and painting myself. I’m also a bit of a gardener, I used to have an allotment many, many years ago, and although we’ve got quite a small garden now I really enjoy doing that. It’s probably the only thing [laughs] that stops me thinking about work. I’m a bit of a telly addict too, I have to confess.

PAUL-                 Thanks so much, Marie. Good luck with the new job and thanks for chatting to us.

MARIE-              Thanks ever so much.

MUSIC-

EMMA-               It’s a wee while, a few weeks since that chat was recorded, so we went back to Marie’s people to find out whether she’s managed to get the adjustments she needs, so a diary manager, accessible office. And she sent us this voice note:

MARIE-              Hello. So, I’m two months into the job right now and some things have changed after a very intensive summer of recruiting my team. I’ve now got all my staff in post so I’m really delighted about that. Within that team I’ve got some disability-related support, which has been amazing and really, really helpful with particularly the long days in parliament, and extra support in terms of taking dictation and helping to organise my diary and carrying bags and things around the enormous parliamentary estate. I’ve also now got my office up in Westminster. Our whips have absolutely outdone themselves; it’s a really great location which means that I can get to the chamber in quick time, and the office is really accessible for me. So, that really feels fantastic to have moved forward on those areas and really start to hit the ground running as the Member of Parliament for my constituency. It also means that I’ve been able to focus on making contributions in the chamber. In our second week back I asked three questions to different ministers on issues that were important in our constituency, and that was really important to me, including raising an issue around a domestic violence issue that happened a number of years ago, and getting the agreement of the minster to meet with me and the mother of the two victims, who sadly died. I also asked about issues around Yorkshire Water and sewage in our beautiful River Don, and the wait that our local people have to be able to get to speak to their GPs. So, it really feels like we are doing the best for our constituents now that we’ve got everything up and running and in place, and looking forward to have my first advice surgeries over the coming weeks, and making sure that we’re doing that very regularly around the constituency too.

MUSIC-

EMMA-               Thank you for listening. Thanks to Paul Carter for chatting to Marie Tidball when I was on my holidays. Thanks to Sara and Pam for chatting to me about life when you’re getting older and have a learning disability. If you want to get in touch with us about any of the things that we’ve discussed in this episode, or any other episode frankly, because you guys are epic with the emails, you can contact on accessall@bbc.co.uk. Or you could pop onto the WhatsApp and you could send us a voice message or a text message, just start with the word Access and send it to 0330 123 9480. We are also on the socials @BBCAccessAll. Thanks for listening. See you later. Bye.