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	TX: 22.03.04 – CARERS ARE NOT GETTING THE RESPITE CARE THEY NEED SAYS MENCAP PRESENTER: LIZ BARCLAY
	THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE Βι¶ΉΤΌΕΔ CANNOT VOUCH FOR ITS COMPLETE ACCURACY. BARCLAY There are seven million unpaid carers in the UK looking after elderly or disabled friends and relatives for many it's a 24-hour job. Yet research by the charity Mencap shows that as many as 60% have never been offered a short break service, which should have been provided by their local social services department. And two-thirds of the rest have had to wait more than six months for a break. Louisa Spivack has two sons with severe autism - Danny and Joel. Twenty seven year old Danny lives in residential care provided by his local council Haringey in London. He comes home one weekend a month. For many years on those weekends her other son Joel was taken into residential weekend respite so Louisa didn't have to look after them both. But when Joel turned 18 last September that stopped because he's no longer classed as a child. He was, until recently, looked after by what's called a transition team but since then as she told Carolyn Atkinson, Louisa has had to cope with both of her sons at once. ACTUALITY AT LOUISA SPIVACK'S HOME SPIVACK Joel sit down please. Push your chair in, push your chair in, push your chair in. I'll start you off with your breakfast - banana. Right? I haven't actually had a full night's sleep since I started to have children 27 years ago. Start eating your banana, come on. The thing is Joel would get up every night to go to the toilet, he'll take himself … Chew up. …to the bathroom but he's noticed that it's quieter, it's darker and he can't hear us, so every night he comes to wake me up. And from what I can … Eat up Joel. … Joel's community care [inaudible word] and plan stresses urgent … Yeah eat it, go on, chew up, no eat what's in your mouth - eat what's in your mouth first. … Joel's community care assessment of his needs and the care plan stress urgent respite. ATKINSON When was the last time you actually had a night off or a day off? SPIVACK I can't remember actually. I suppose it would have to be 1998 when I went on - took a week off to go to Canada to see my cousin. Right in it goes - ooh lovely. ATKINSON What is this doing to you because I mean the tiredness and stress - how are you feeling at the moment? SPIVACK Well I have been very, very depressed actually, I would love a break because we're just not able to do anything really. I mean when we're not - if on the occasions that we weren't caring for Joel when he was in children's division we were caring for Danny. It was very rare indeed for us to have any time for ourselves we don't get to do something like see a play, I know it sounds a bit trivial but when you're not able to do something like that it's really something you want to do. ATKINSON Are you angry that you're not getting any assistance? SPIVACK I am, I mean I have been very angry but I find that I just get a lot of platitudes. His behaviour's deteriorating and he has severe eczema, so that would be exacerbated, he'll be scratching himself with more intensity. He'll become more rigid, we'll be able to do far less with him and he may well be screaming at night. ATKINSON Do you think that the lack of break that you're getting is that having an effect on him, albeit not intentionally? SPIVACK Yes I think it does because I find myself being less patient, a bit more snappy with him than I would have been if I'd have had a break. ATKINSON What can you see happening if something doesn't change now? SPIVACK Well I feel that unless I get some form of support for Joel my fear is that I won't be able to cope, that I will have to say I can't care for him anymore. BARCLAY Louisa Spivack. Jo Williams is chief executive of Mencap, its report Breaking Point shows that Louisa is not alone in feeling that she can't cope. WILLIAMS There are, as we know, over seven million carers across the UK. Those caring for people with profound and multiple learning disabilities we might be talking about 30,000 families and that's a very significant number of families. BARCLAY And you're saying that 60% of those are not getting any short breaks with quite a lot of them at breaking point? WILLIAMS That's right. I mean I think for children and young people there probably is some measure of support, not for all families, not for all children and young people but when they become adult - post 19 - families tell us that that's really when they begin to get very frightened and services reduce even further. BARCLAY And that's what happened in Louisa's case. Haringey Council have explained to us they provided very regular respite care for this family for several years but then when Joel turned 18 he hit this transition period - neither a child nor an adult. But why is it that there isn't some other care beyond that point? WILLIAMS Well I think there are clearly within local government there are huge pressures on services and the money they have. But there is something about what people told us when we did our survey last year and what people have said to me since - we are silent really as a group. It's partly because, apart from anything, else families have a sense of guilt in needing to ask but also quite frankly they are a group of people who are worn out - it takes a lot of energy and they use up a lot of energy sometimes trying to fight for some very basic things that we believe actually they should be entitled to as a right. We're saying that without the support these families really will break down. And we know in talking to a significant number of mothers that they have been abandoned by their partners, and that's not unusual. And the other thing that of course hits a family is the impact on brothers and sisters, they have to make significant sacrifices too. BARCLAY We're also joined by Sarah Pickup, who's from the Association of Directors of Social Services. Sarah, your members are the people allocating these short breaks, why do you think it is that so many carers do feel that they're just invisible, they're not getting the breaks they need? PICKUP Well I think I would agree with much of what Jo said about the very high needs families with the multiple profound disabilities. The carers' grant, which local authorities have been awarded, has been very much targeted on delivering breaks for precisely those people. But equally local authorities are working within tight financial frameworks and the way in which care is allocated to clients as well as to carers actually involves the use of eligibility criteria. So you need to be crossing a threshold before you become entitled to a service, we can't spend with no limit. I think what it's our responsibility to do is to look at ways in which we can support carers through breaks but also in other ways - sometimes these need not be expensive ways, they could be information, support, advice and indeed sign-posting on to the voluntary sector who often can provide support and help to people who wouldn't cross our eligibility thresholds. BARCLAY So what are you saying then that it isn't just about money? PICKUP No it isn't at all and in the very high needs cases and it's often about the availability of appropriate care, the skilled type of staff and provision that's needed to support somebody with a very profound disability is not easy to come by. BARCLAY Well the goodwill of councils isn't in question here, Haringey did tell us that they are committed to providing Joel's family with suitable short breaks and in fact they're having a meeting involving the head of learning disabilities and the care manager to make arrangements. But from what you're saying it's probably about social services thinking more flexibly about offering care packages. PICKUP I think that's right and I think I see it as part of the role of the Association of Directors of Social Services to promote good practice and to promote flexibility. WILLIAMS I think we need to think together about how we can reach a situation where someone has an entitlement to a break. BARCLAY That's an idea that you're floating isn't it. WILLIAMS Indeed it is yes. BARCLAY Just explain more about that. WILLIAMS Well we believe that if someone has been assessed, for instance, for disability living allowance, so there's an established need, then we'd like to see some regular routine planned breaks to go with it. BARCLAY Sarah would that work do you think? PICKUP I do think there would be some difficulties with entitlements related to benefits. Benefits is a very crude measure, in a sense, of what somebody's needs are. The individually tailored part is really important. I think we'll do better by seeking to spread good practice, to continually use the cares' grant, which is still increasing to local authorities, to promote the use of breaks and to develop capacity in the market to deliver the care to those very high needs individuals. WILLIAMS I just think that we have to work quickly, people really are at breaking point, they want to see progress, some people are saying they've been waiting for too long already. Our proposals we're putting out for consultation we really want people to let us know what they think might work because we've got to do something, we simply can't allow people to continue in the circumstances that we've been talking about today. BARCLAY Jo Williams of Mencap and Sarah Pickup from the Association of Directors of Social Services. Back to the Transcripts homepage Back to the You and Yours homepage The Βι¶ΉΤΌΕΔ is not responsible for external websites

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