Wheelchair services, mental health and disability identity

Wheelchair services, mental health and disability identity

Paul Carter and Helen Dolphin are joined in the studio by Jean Waters and Rosemary Fraser to discuss the pressing disability issues.

Disability Now
The Download 30
Presented by Paul Carter and Helen Dolphin

[Jingle: This is the Download from Disability Now.]

PAUL Hello. I’m Paul Carter and with me for this episode of The Download is Helen Dolphin.

HELEN Wheels of misfortune – why is there a need for an alliance to improve NHS wheelchair provisions?

PAUL Crisis in crisis. Why is Crisis Care failing so many mental health service users?

HELEN And disability, identity, community – is there really a link between those three concepts?

PAUL Our voice, our lives on The Download. Just two guests are with us this time.

HELEN Jean Waters is a wheelchair user and has just become a member of a new wheelchair alliance which aims to improve provision of wheelchairs from the National Health Service.

PAUL And Rosemary Fraser is, coincidentally, also a wheelchair user. She’s also campaigns’ manager with Scope the charity which funds Disability Now. So time to find out what, apart from the time you’re here to talk about, is occupying your thoughts at present. Rosemary, let’s throw that one to you.

ROSEMARY What’s occupying my thoughts at the moment is I’m trying to have a better experience at airports with the wheelchair and getting off and on the plane and just getting around the airport. Dreadful experience in Berlin last time. Love Berlin don’t want to not go back there but I’m not having my holiday ruined by idiots again. So that’s it. I’m trying to find a way of getting them to see that they need to listen to disabled people more because we know what’s best for us.

PAUL Jean, what’s on your mind at the moment?

JEAN I think what’s on my mind at the moment is because I do have a progressive disease I’m getting to the end of being able to drive an ordinary automatic car. I’m going to have to go down the line of a wheelchair accessible vehicle. And also standard hand controls are proving to be too difficult for me to use. So I’ve got some very big and very expensive decisions to make even though obviously I will be assisted by Motability.

HELEN Wow. So to kick off the show proper let’s start with that new wheelchair alliance.

PAUL A couple of weeks ago the media was treated to the spectacle of a member of the House of Lords in a wheelbarrow in front of the Houses of Parliament. Well I suppose it’s less embarrassing and scandalous than what another peer has allegedly been up to recently.

HELEN Former paralympian Baroness Tanni Grey-Thompson was drawing attention to what she says is the terrible service and the equally terrible chairs offered to wheelchair users by the NHS. She was also promoting the launch of a new alliance which she’s established to campaign for better chairs and service.

PAUL As if by magic fresh from a meeting today of that alliance Jean Waters joins us now to tell us more. Jean, what’s wrong with the current service?

JEAN I think the problem with the current service is that it historically has always been a Cinderella, it is very much a forgotten resource within the NHS and isn’t given the attention it needs. There is no data collected to see how many wheelchair users need provision. And there is often no specifically allocated resource things are just done as block contracts.
And the other thing that tends to happen to the detriment of wheelchair users is there’s no common standards; so you may get excellent service in one area, you may get very poor service in another. And I think there is a will among both the clinicians and therapists and manufacturers – everybody who is involved with wheelchair services and the users themselves to try and get this right. And that’s the object of the alliance is to bring it to the attention of commissioners particularly but also the general public and politicians that this is a service that is quite important and can make a huge difference to people’s lives. And with smart working it is possible to get it right.

HELEN So is there actually anything wrong with the chairs themselves?

JEAN I think quite often they are limited by resource and hide bound by often quite outmoded technology. For example, the ubiquitous occasional chair as they describe anything that somebody needs to use even if it’s 100% of the time out of doors, is often the same sort of construction as probably available in the 1960s – heavy chairs. Quite often the users that receive them are unable to self-propel because they’re too heavy; or their partners can’t actually wheel them in it very easily. And equally they can’t lift it to get it into the cars. So there are many chairs that sit abandoned in cupboards just because they are not the right chair and appropriate for the need of that particular person.

PAUL Jean, with like all of these things though, isn’t this just a case of resources and people are getting provided with the best chairs that they can for the money that they have. When I say ‘they’ I mean the wheelchair services.

JEAN No I don’t think that’s necessarily the case because quite often it’s a question of investing wisely because if you get the right chair at the right time for people and you’re meeting their needs you’re able to actually have smart working, you’re not wasting money on a resource that’s unused, you’re enabling people to participate in their full lives; they can get out, they can go to work, they can contribute to society in a much better way. I think what we need to be seeing is a much more integrated service so it’s a question of not working in isolation. The wheelchair services need to know the need that they have to meet. They also need to know the resource that is needed in the first place and how much they’ve currently got. If you don’t know how much money things actually cost and you don’t even really know how much is being budgeted towards it, it’s very difficult to work in a smart manner.

PAUL I think that was quite interesting what you said about the wrong chairs being provided. Do you think that’s sometimes counterproductive, not just for the end receivers but for the services themselves? Because I assume that people are going to have to go back more often and it’s going to be more expensive in the long run.

JEAN Absolutely. And I think the adage of spend to save is actually true in this case and I cannot cite an example where, for example, with progressive neurological conditions the Motor Neurone Disease Association work with manufacturers to come up with what they describe as the Neuro Chair, which is a powered chair with almost all the adaptations that you’re likely to need to see you through the course of the disease which for most people with that condition is pretty rapid.
What currently happens is that the wheelchair service would provide a very basic powered chair that maybe three months later, if you’re lucky to get it delivered in that time, your needs might have changed already. You’ve then got to go back all through the process. There’s more costs in utilising the therapists in finding out what those changes are, ordering the respective kit. And the ongoing costs over the course of the disease may be two or three years is actually significantly more than if you’d provided it all at the beginning.

HELEN So we understand that the former chair of the Disability Rights Commission, Sir Bert Massie, also a wheelchair user says he doesn’t see the need for an alliance like this.

JEAN I think it’s very important to get an alliance like this particularly for the fact that specialist and complex wheelchairs, which actually power chairs come into that, tended to be commissioned centrally by NHS England. So at least you’ve probably had some sort of consistency but all of that has been devolved down to local commissioning groups of which there are over 200. So that means that you’re going to cause even more of a postcode lottery if you don’t get the service right.

PAUL Is the situation better or worse for you and other power chair users?

JEAN I think the situation is probably bad for both because I find instances where people can self-propel if they’ve got the right lightweight chair. So, for example, I have a friend with multiple sclerosis who was able to self-propel around the house but the NHS provided her with a wheelchair that was too heavy. And when she said she needed a lighter one and then would be able to manage independently indoors they said they only provided those for active users. And she didn’t come in their definition of active. So she was prevented from being able to get a chair that met her medical and social needs.

PAUL That sounds barmy, they only provide you a chair if you’re active. But you can’t be active unless you’ve got the right chair.

JEAN Exactly. Exactly. There seems to be an understanding – and this isn’t true of all the clinicians and therapists who are involved in wheelchair services – but there is a common thought that chairs should meet your medical need and not anything else. And to be honest I think that is completely mad because it’s a bit like giving half of a treatment. If Mrs Smith has got two legs with very bad varicose veins you have to choose which one. If you actually get it right in the first place then you’re going to succeed to a much better extent.

HELEN I have to say that at the moment I’ve just had a new chair from Norwich and it was amazingly good service. I was expecting the worst and I was actually really surprised and quite delighted by what I had. So, Rosemary, what has your experience been?

ROSEMARY I haven’t used NHS Services for quite some time because I had such a dreadful experience when I was much younger. I remember being told when one chair after another was breaking that I was using my chairs far too much. I thought I was using them the required amount for a wheelchair user, but there you go! So I’ve been purchasing my own wheelchairs for over 20 years now. I’m really, really lucky in that I got some really good advice from friends. I used to be involved in sports and things so I know what I’m looking for. I know my disability and my impairment very well, I know what my needs are therefore I can choose a chair wisely.
My concern is that people do, if they’re self-funding then they do purchase a chair that perhaps doesn’t meet their needs and it can lead to a lot of back pain and it can worsen your condition. What I would like to see – this is a little personal plea from me – is can I have that pot of money that would be allocated to me if I were to go through national health kind of services to add to the purchase of a lightweight wheelchair because they are incredibly expensive. The one I bought most recently was £6,000. That’s great for me, I’m working, that’s a spend I choose to make.

JEAN For some people even the price… The NHS gets a discounted price or it’s a big buyer therefore it can command a good discount. But if you’re a private buyer you know that you’re going to be paying at least twice, if not three times, what the NHS would have to pay for the same chair. And there are so many disabled people who are not in a position to be able to afford that sort of expense. And I think this is why the Wheelchair Alliance is campaigning very vigorously to get a service that really does meet people’s needs and enable them to maximise their quality of life as well as prevent expensive complications like pressure sores, worsening skeletal deformity. And even thinking about the other topic of mental health issues the isolation and sheer frustration of not being able to get out and mix within society causes major mental health issues as well.

PAUL Thanks to both of you for now. It’s something that we’re going to keep an eye on very closely and I’m sure we’ll be coming back to it sooner rather than later.
So now we turn from the NHS to the MHS.

HELEN During the recent General Election campaign much was made particularly by the Liberal Democrats of their intention to reform and increase funding and the profile of the Mental Health Service. In the event for them that turned out to be rather a pipe dream.

PAUL In the meantime at Disability Now we continue to hear stories from service users which clearly indicate a system in crisis. Indeed it’s particularly in the area of provision of support for young people in crisis that things seem to be at their worst.

HELEN Even more alarmingly some statistics recently issued by a monitoring group based at the University of Manchester show some disturbing trends.

PAUL There has been a 29% rise among men who die by suicide while under the care of Mental Health Services in the UK. Suicides within community based crisis teams are now three times greater than the number of deaths occurring in mental health hospital settings. There has been a 64% rise in these deaths with an estimated 226 in 2013. The number of people taking their own lives following discharge from an in-patient unit which is outside their local area has also risen in recent years.

HELEN But beyond the stats what does the personal lived experience of people who are receiving treatment in the system tell us.

PAUL Rachel Rowan-Olive is under the care of a crisis team in London and living in a crisis house in her local area. She’s been talking to Ian Macrae.

RACHEL My first real encounter with the mental health system was through Crisis Care via the A&E where I was at university. And it wasn’t particularly positive in that I think often it’s when people end up in crisis services via A&E that things really are quite difficult because there’s a lot of different organisations trying to co-ordinate and you come into contact with a lot of people who don’t necessarily understand why you’re there and that it’s not your fault that you’re there.
So I remember the consultant in the A&E that I was seen in was the first time that I’d really sought help in a crisis anyway. And I felt very blamed. He was very confrontational with me and I think even the receptionist who I saw, as soon as she found out why I was there her whole manner changed. Yes I definitely felt like people thought it was my fault that I was there.
Since then I’ve been in and out of Crisis Care for about a year and a half. The longest time that I’ve been out of crisis officially has been about two and a half months. So obviously it’s been quite frequent. And I’ve experienced I think a real range of some great care and some disastrous.

IAN Tell me what Crisis Care is and what it consists of?

RACHEL It varies a lot. The most common way that it will manifest itself is through a crisis team who are sometimes called Home Treatment Teams. And when someone, either a mental health worker or a GP or somebody thinks that someone they’re working with is in a mental health crisis they’ll refer them to the crisis team who do a very, very difficult job and they’re job is basically to keep people out of hospital, but for me that’s never happened. I’ve never been discharged from the crisis team’s care because I’ve got better, it’s always because I’ve been admitted somewhere. They will usually either visit someone at home or have them come to their office usually every day. And in theory that can be quite a holding thing and could be quite helpful for people but there’s a lot of barriers to accessing that. For instance, if you’re a young woman – I mean I’m 23 – the idea of a strange man coming to your house is really frightening, especially if you live on your own. I mean I don’t but I know other people who have been under crisis services and just discharged themselves because they said, “I don’t want strange men coming to my house every day”.

IAN Tell me to what extent you think the Mental Health Service and Crisis Care, in particular, is tailored for you as an individual?

RACHEL I think it depends on whether you’re lucky in terms of the person who assesses you. I think if you see someone who understands you and asks the right questions then they might be able to get you into the services that are right for you. If you’re not lucky then it’s not tailored for you as an individual. I’ve definitely had times where I’ve felt like well I don’t fit the model that you’re working to so I’ve just sort of been left. It can be either be helped in the way that we want to help you or we’re not going to try. And that’s very, very difficult to experience because it’s not like you’ve chosen to be there and when you’re under crisis services it’s when you’re at your most vulnerable.

And so, for instance, if you say I’m not comfortable speaking to a man and there’s only a man on shift, to some extent there’s not very much that can be done. So there’s some ways in which the system just isn’t set up to be tailored for individual’s needs. But I do think that the way that people give you the news that there’s nothing that they can do makes a huge difference in terms of how you feel about how tailored it is to your needs. So if somebody says to you, “I’m really sorry I’m the only one on shift at the moment and I’m a man if you don’t feel comfortable talking to me, I understand that and we can arrange for a woman to give you a ring tomorrow or you might be able to speak to The Samaritans”, or something like that. Whereas if someone just says, “Well there’s nothing I can do about that, bye” that’s very different. And I think that both of those reactions I’ve experienced.

IAN I want to put something to you that another service user said to me which is she said that it’s a shame that support is really only available to you when you’re probably least able to take advantage or make use of it.

RACHEL Yeah I think that’s very true and it is a real shame. It’s interesting because you can’t really view Crisis Care in a vacuum because you’re the same person when you’re in crisis and when you’re not. And so obviously Crisis Care overlaps with a lot of other services which are all also under a huge amount of financial pressure. I found out the other day that a day centre that I use is going to have its funding cut by the local council by £130,000 a year which I think is nearly half their budget. And that’s a really unpleasant feeling because you think well okay there might, if I’m lucky, be a safety net there when I’m in crisis, so it might keep me alive, it might keep me going. But there’s not necessarily going to be anyone there to help me move on so that my life isn’t just bouncing from crisis to crisis, but there’s someone around to actually help me stay out of a crisis and build up more of a life for myself.

IAN Tell me about the sort of experiences that make you feel that A&E is not always necessarily the best route in to Crisis Care?

RACHEL It’s frightening to be honest. It’s frightening for a lot reasons: one is sometimes the other people who are there if you’re vulnerable, obviously my experiences as a 23 year old woman, I think men are vulnerable in different ways but as a young woman in A&E if you’re on your own it’s absolutely terrifying. I’ve been frightened away before because I was there I think it was a Friday or a Saturday evening and if there’s a drunk old man next to you making horrible comments about every nurse that walks past and then a drunk young man starts a fight with a police officer about two feet from your face you’re not going to stick around. And you can’t time your crises so that you have them when there’s not lots of other people there. So I think that’s one reason why it’s not a very effective backstop. I think the other reason is that not all of the staff who are there understand mental health. Because you might be there because you need physical treatment as a result of your mental health crisis, which is something that has happened to me a lot and I’ve definitely felt blamed by people like doctors and nurses who should know better but clearly aren’t given the training to. And I think finally there’s in a lot of A&E departments there’s what’s called a section 136 suite which is… Section 136 is part of the Mental Health Act which gives police the power to take somebody to what’s laughably known as a place of safety so that they can be assessed. But in practice those suites – which you’re locked in, you can’t get out – they’re often used as kind of a general mental health waiting area. And that is unbelievably terrifying. I don’t know how I can explain what it feels like to be on your own in a room that you’re locked into not knowing when someone’s going to come and talk to you. And generally there’s a security guard outside the door. Generally they’re a middle-aged man who you don’t know. It’s not an inviting prospect.

IAN I should think that feels more like prison than hospital?

RACHEL Yeah it does. And I think there are things that affect my life now that are almost like post-traumatic stress symptoms which are as a result of the way that I’ve been treated in crisis care. I have a panic attack if I’m in a room without windows and I never had that before I was kept in a section 136 suite for hours on my own.

HELEN So with things sounding as desperate as they appear to from the service user’s point of view what can be done to make things better? Ian also talked to Nigel Campbell, Associate Director of Communications with the charity Rethink Mental Illness.

NIGEL We released a report last year which was all about looking into early intervention services and we found there’s been a real hollowing out of early intervention services. And then of course that means that people aren’t picked up until they get to a crisis point. And one of the important things that we’re always saying about is, in an ideal world you’d want to minimise the number of beds in secure care because people wouldn’t be getting into crisis. If the mental health system was in good shape people wouldn’t be getting to that pint in the first place. But I think what we’re seeing now is they’re not getting that early intervention, they’re not getting the care they need early enough when they really need it, and then that’s manifesting itself as a crisis. And of course then it really is very resource intensive to sort those things out and then you’re seeing that people are being sent far away for crisis care because it’s not available locally, it’s very hard to plan for the health services so these crises suddenly emerge and require a lot of resource intensive help. So it’s a complex picture and it’s one where we want to get a little bit upstream of this and make sure that these crises don’t occur in the first place.

IAN But in general terms mental health service provision just seems to be completely struggling. It’s the only way I can think of putting it.

NIGEL We’ve noticed that there have been sequential cuts to mental health funding over the last five or so years. And we’re seeing now the result of those cuts through a variety of services which have been degraded and denigrated. I think that there are some welcome signs; the government has announced £10 billion worth of investment in the health service. We are working very closely with NHS England on a task force which has been convened by the chief exec of NHS England, and that will come out with recommendations which will be fully funded recommendations in advance of the comprehensive spending review later this year. And the idea of that will be over the course of this parliament, so before 2020, to rebalance the funding of mental and physical health services so do achieve this parity of esteem which I know is an expression which is used quite a lot these days in political circles. So that’s good news. But I think that it needs to make sure that these services are fully funded and are funded and delivered at a local level to meet local need and that’s incredibly important. So the money comes down from the top and is spent properly at a local level.

PAUL If you are, or have been, a mental health service user and would like to tell us your story details of how to contact us will be at the end of the show.

HELEN Now to another big question, perhaps it’s almost the existential question for disabled people.

PAUL We’ve already talked about wheelchair users and mental health service users. As it happens Helen and I are both amputees and are producer, Ian, is blind.

HELEN So what is it that has all of us sitting here in a room talking about ‘disability’ and ‘disabled people’ as they were a single group.

PAUL What are the things that go beyond our impairments which give us both an individual and a collective disability identity. And I’m going to throw this to Rosemary.

ROSEMARY An easy question.

PAUL We like the easy ones. What is it, do you think, that makes you, us feel part of a wider group?

ROSEMARY I’m not sure that we are part of a wider group. I would say that there’s certain things we have in common and that is the negative attitudes that we face regardless of what our specific impairments might be. I think also the prejudice that we face. I know that if I meet a wheelchair user from anywhere else in the country we will have certain things in common that we’ll be able to talk about. And that’s probably similar with people with completely different impairments we can talk about the ridiculous attitudes, we can talk about the awkward moments, we can talk about the silly things that happen. But I think beyond that… And funny, I was talking about this recently with some gay friends about whether or not there really was an LGBT community as it were and he wasn’t sure that there was. I think when we think of the disability community people are probably thinking of quite independent wheelchair users who are in work; and people like me who tend to do a lot of campaigning and are a bit kind of shouty.

Whereas what concerns me is the people that we don’t hear from, do they feel part of the wider disabled community; are they getting an opportunity to have their voices heard and I really don’t think that they are. You know nearly 12 million disabled people in the UK, where are we? It doesn’t feel much like a community. And I almost think now they shouldn’t because when I think of me I think well firstly I’m Irish, secondly I’m woman, thirdly I’m disabled – that’s how I… And on my Twitter feed I say I’m a wheelchair and a chocolate user. My wheelchair and my use of chocolate are equally important to me to get me through my day.

So I think we shouldn’t necessarily worry about or beat ourselves up around being a community or thinking of ourselves as a community only in that we together need to address those negative attitudes, those prejudices; we need to recognise, I think, amongst ourselves that, as I say, I’m a wheelchair user the level of prejudice perhaps I experience is not anything like that of someone with a learning disability or someone with mental health issues. I’m more likely to be in work for example than someone with a different type of impairment. And I think that we perhaps those of us that are disabled people maybe need to recognise that we’re not all coming from the same place. And perhaps we need to maybe support each other not in that kind of let’s all join hands and sing Kumbaya as a community, but just to kind of recognise that together and speaking more with one voice that our voice could be really strong.
As I say we are 20% of the UK population. It doesn’t feel that way as a lobby group that we’re that strong. Others seem to be able to use their voices better. So maybe we need to think about that.

HELEN I think there’s also a lot of labels. I mean I’m labelled as an amputee, I’m labelled as a wheelchair user and a disabled person so there’s obviously lots of different ways and lots of almost different groups. And, Jean, are you a disabled person or are you a wheelchair user; how do you see yourself, or don’t you?

JEAN Well I just see myself as me. And yes I do happen to have a disability. I understand completely that we’re all very different. I think one of the things with society is they’re never quite sure how to handle somebody with a disability, the average person. And it doesn’t matter what that disability is they’re not geared up so they tend to avoid it rather than confront it. If people actually stop and take time and get to know people then suddenly you become part of a wider circle. But there is a tendency to pass on the other side of the street by some people which naturally means that those who do have disabilities are almost inevitably going to be thrown together to some extent because you’re sharing the same problems and obstacles almost no matter which type of disability you’ve got.

PAUL Rosemary, you were at pains to say that we are all different but we do share individual experiences as well. What kind of things do you think they are?

ROSEMARY I think it’s the difficulty in getting jobs and being given a fair crack at the whip there within the job market. I think what we probably share is an expectation on the part of wider society that our lives should be somehow less than. And that really bothers me because going back to what we were talking about earlier about the wasted money with wheelchairs, you know I’m a graduate, surely it’s a waste of money, I’m old enough to have had a free university education, that is a total waste of money if I am not fully employed and using the skills that I have and the education that I received to the best that I can do.

And other things I think we have in common is the silly things that happen to us, the silly things that people say. The number of times I go into a room and I know that people have never seen a wheelchair user before, or at least that’s the impression that I get when they look at me, and I think come on people it’s 2015, really? Am I so shocking? I’d like to think it’s because I’m so devastatingly attractive – I know that’s not the case. But just come on! The attitudes sometimes really, really do shock me. I don’t know why that is because I have seen in my lifetime attitudes towards diversity and other ways completely change. I’m not seeing that same move around disability.

JEAN I’m just thinking what it actually reflects and I think it’s quite sad is the able-bodied population don’t come across disability nearly enough. And I think that is partly because so many disabled people, and I certainly think this is true of wheelchair users, actually don’t go out. Because it’s very difficult out there both in terms of infrastructure, not to mention the embarrassing moments, particularly if you’re trying to be independent. And so as a result I think people can often end up isolated and shut away which of course perpetuates the difficulty of integrating in society. And we actually need the able society to really get to grips with that and then people will feel freer to maximise what they can do.

HELEN I think another thing that perhaps the non-disabled community need to recognise – I put them as a community – is that I wasn’t born disabled, you weren’t born disabled it’s something that often is thrust upon you much more likely than being born with it. And people think that’s something that happens to other people and it doesn’t. And I think if people could get into their heads that it could be them, it could be their family members then perhaps they’d be a little bit more understanding when I take a little bit longer to do my pin number in the supermarket; or I actually need that disabled parking bay. And I just think if we could only have a little bit more understanding amongst ourselves perhaps as well as amongst society in general then we’d just have a much better existence. It’s one of those topics we could go on discussing until the cows limp home. That’s all we’ve got time for now.

PAUL Thanks to our guests, Jean Waters and Rosemary Fraser and to Tim Brown for technical support and assistance.

HELEN Production is by Ian Macrae.

PAUL So until next time from Helen and me, goodbye.

[Jingle: Email editor@disabilitynow.org.uk. And follow us at disabilitynow.]

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