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TX: 10.06.08 - Call You and Yours - Care Strategy

Presenters: Winifred Robinson and Peter White

Downloaded from www.bbc.co.uk/radio4
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 BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


Robinson
Hello and welcome. In this Call You and Yours on the day the government has produced its 10 year strategy to help carers we want to know your views.

White
It is estimated that at some stage in our life 6 out of 10 of us will care for someone else, perhaps you're already looking after a relative or maybe there's someone you think you will need to support in the future, maybe you struggle to combine caring with paid work - should there be a distinct payment for people who have to quit their job to look after others?

Robinson
The care minister - Ivan Lewis - is going to join us later on in the programme, to answer some of your questions about today's new care strategy, what is in it and what has been left out. And we also have with us throughout the programme two expert guests - Imelda Redmond from Carers UK, which has campaigned for carers for many years and Professor Sue Yeandle who advised the government on the care strategy.

White
They've just both crept quietly in. Perhaps - they'll be noisier later - perhaps you think there is too much government support, that people should make their own arrangements to care for their families and themselves. Do call us now on 08700 100 444, calls should cost no more than 32 pence, you can e-mail us at bbc.co.uk/radio4/youandyours or you can text the word You - Y O U - and your message to 63399, the likely cost of that is 15p. Let's go straight to some callers first, this is all about you really, Georgina is calling us from Lowerstoft. Georgina what did you want to say?

Georgina
Yes, hello, good afternoon. I have a nine-year-old boy with autism and I'm a qualified teacher but I find it extremely difficult to work. When my son was first diagnosed I had to actually leave my job because I couldn't find suitable childcare. He was asked to leave various childminders and nurseries just because they couldn't cope with his needs. And ...

White
What would have helped basically? I mean we understand that there's no increase in the carers' allowance at this point but there is some suggestion that there may be some help to - as far as people who are working - what would have helped you?

Georgina
What would have helped I think is extra money to go to his nursery. At the time they could only claim for three hours one to one support for him which of course is no good, as I was at the time working full time as a teacher. So more money for childcare and also the legislation at the moment - there is legislation in place for flexible working but ...

White
You have the right to request.

Georgina
You have the right to request it, so you're relying on a sympathetic employer which is very difficult to find.

White
Would you like to see that strengthened is that what you're saying?

Georgina
I would and also the legislation often only comes into place once you've been with an employer for six months or a year, depending on how good their contracts are ...

White
Georgina thanks very much, we'll try and discuss as many of those points as we can as we go along. Mr Haynes is calling us from Newcastle.

Haynes
Hello good afternoon.

White
Go ahead.

Haynes
Well I'm speaking from north Staffordshire where we have a very strong pensioners convention, we have over 500 members. Many of those members of course have either go relatives or very close friends either in care homes or receiving care and the problem is that there is really no system to make sure that these initiatives that the government impose upon on us are in fact properly inspected. The Commission for Social Care Inspection frankly is really a waste of time. And on Radio 4 on Friday of last week an inspector who asked to be anonymous made the following statement: I would not leave my dog in 90% of our care homes - that is a straight quote from an inspector employed by the Commission for Social Care Inspection.

White
You probably know there's a new umbrella Care Group, do you think that will make the care quality commission, do you think that'll make any difference to that?

Haynes
No, nothing that - I'm in my 80s now and I've had a lot to do with social work since my retirement at 60, I've virtually put more hours a week in than I did when I was fully employed and I find frankly that nothing that the government declares takes place in fact happens.

White
Okay thank you very much indeed.

Robinson
A lot of e-mails on the subject of the quality or lack of it of some of the respite care that is offered, just this one, anonymous: I'm a full time carer for my wife who has vascular dementia. After our negative experience of respite care I have refused respite because of my distrust of those running care homes. I feel vindicated by the whistle blowing care home inspector - the same man your previous caller was talking about - who said he would not trust 90% of care homes with his cat.

White
And let's hear from one more caller before we go to some of our guests. Hazel Murray is calling us. Hazel what was the point you wanted to make?

Murray
The point I'd like to make is that I am a full time carer for my 78-year-old husband who is extremely incapacitated. Now I need to do a lot of chores for him, small chores perhaps, like going to the chemist or whatever and I need to get in my car to do it so that I can go backwards and forwards quickly. Unfortunately unless the disabled person is with you you are not allowed to use any of the disabled spaces, in fact they're now threatening to fine you and punish you if you caught doing it. And my point is that I think that there should be some system in place so that people like me, carers, can do small chores, perhaps have our own badge and have accessibility to places to park to do those things that we need to do.

White
So specific recognition really that you are - almost recognition that you are a very specific group with specific needs?

Murray
Indeed, indeed because as I say the practicality of putting my husband, for example, in the car every time I need to pop out and do something for him, well it's not practical basically.

White
Hazel Murray thank you very much indeed.

Robinson
Well the new national carers' strategy is being revealed as we speak at the Department of Health in London, our reporter Carolyn Atkinson is there and the care services minister Ivan Lewis is there too, he's going to join us a little later on in the programme. Carolyn, what have they had to say so far?

Atkinson
Well Ivan Lewis is still briefing people about this national carers' strategy. It's being launched as we speak. It's a 10 year master plan. It's basically being seen as the starting point of a decade of ideas that are going to flow out of this document and it's aimed at improving support for the 5.2 million carers in England, the 6 million carers across the UK, so that they can have a life of their own alongside their caring responsibilities. And we've just been hearing from people saying basically up till now that hasn't been happening. This all came about because back in February 2007 Gordon Brown announced a new deal for carers and part of that new deal was a pledge to review the carers' strategy, that carers' strategy had been in place since 1999 and it was felt that it was getting very out of date. So here is this review, it's been billed as the most far reaching consultation ever on the future of carers. And here it is, I've got it in front of me, it's 164 pages long. The first thing the government would want to emphasise is that they're taking in this across the board, that seven government departments, seven secretaries of state involved and they're saying this is a universal issue whether you're a carer, a family member or an employer then caring and carers' issues are going to affect you. So here we are, we're 16 months on since they first started drawing this up and we have a strategy that is not only of interest to the people who are currently carers but for also those people who are going to become carers in the future. And just to put a figure on that, it's very, very high, two million people a year become carers and that figure is likely to rise more and more because more of us are living longer but we're going to need more care. And in fact the number of over 85s is expected to double over the next 10 years, according to the Department of Health. So this is a strategy that is aimed at helping those people who find themselves in that situation.

So what is in it and what is not? Well firstly the key thing that a lot of carers have been looking for is a change to the controversial carers' allowance or should I say an improvement. At the moment if you care for more than 35 hours a week you get or can get a benefit of £50 a week and that can stop when people start getting a pension. Now there is no immediate good news about the carers' allowance in the strategy today. But what there is, is a pledge that from 2011 they will, and I quote: "Review the structure of benefits available to carers". That's going to be a review, part of a wider benefits review, and they will look at the carers' allowance within that but nothing concrete today.

Respite is the thing that the government really are headlining about this strategy, something that is going to be starting sooner rather than later. Ministers say they're putting in £150 million over the next two years and they say that is new money, it's not money that's already been announced and that is to fund breaks for carers. When they did the consultation for this carers' strategy one of the key things that kept coming up all the time was that people said they needed a break, they'll crack up if they don't get a break. So this money could be for short breaks, just a few hours if somebody wants to go out and have a coffee, go for a swim or whatever but also could be longer periods of say a week.

The second area they've been looking at is employment and they're putting in £38 million to help carers try and combine work and caring at the same time, if they want to do that. And Harriet Harmon, who's at the briefing that's still going on downstairs, she's just released a new figure from the government that shows that only 9% of people who maybe eligible to request either reduced hours or flexible working, if they want to try and work and care at the same time, only 9% actually know that they can go about and ask their boss whether than can happen.

A couple of other things that are in there: Annual health checks, it's well known that carers' own health is often poor and often neglected, so they're going to pilot a scheme to see if they can do an annual health check to keep an eye on carers. And also in there is some money for young carers - children, teenagers - there's a 150,000 children and teenagers in England and Wales at the moment who are carers themselves and there's a feeling that they're losing their childhood by that. So there's £6 million in there for projects and other work that can help those people.

Now of course this is all very good headline stuff, the tricky bit is how will this money actually find its way to the carers who need it? And of course the problem is many carers don't think of themselves as a carer, they think of themselves as a wife or a husband or whatever, they don't realise just practical things that they're entitled to a carers' assessment and once you get a carers' assessment that can often open more doors and can open up so that people can get respite breaks and that sort of thing. The other worry that people have is that this money, and certainly some of the money for respite, isn't ring fenced, the councils don't have to use it for that. It is meant to be targeted but not ring fenced. So the big question is are the carers actually going to get it.

Robinson
Carolyn Atkinson thank you.

Well Imelda Redmond, the chief executive of Carers UK, is with us. Could you give us, first of all, then your overall reaction?

Redmond
In general I think Carers UK really warmly welcomes this strategy. We are pleased that it's a 10 year strategy, that it's not just a quick hit and sort of plugging gaps. I'm very pleased to see a change in language about carers, there's less of the sort of patting on the back and saying unsung heroes and much more about life of your own, rights based, about equality, it's much better, much more the language that Carers UK is comfortable with. So we're really delighted about that. There is no doubt that breaks from caring is critical, people tell us that all the time, if they don't have a break from caring then their health really suffers. So that's also very welcome. As to are the issues around employment. The majority of carers are of working age. Currently about one in five people end up falling out of work because of their caring responsibilities and as a society we actually need to get that balance much better, we need people to work and we need people to also provide the care for their families. We're very pleased indeed that there's going to be a thorough review of carers' benefits, it's something we've been calling for for a very long time.

Robinson
Would you have expected an announcement on that today?

Redmond
I think we are disappointed that there isn't something for carers now who are living on very low levels of benefit, we're definitely - we are disappointed about that.

Robinson
You see that's certainly reflected on our e-mails. Just to read a couple. Julie Holmwood says: Why do I have to lose the carers' allowance when I get my pension at 60. I've worked for 30 years and so I've paid for my pension but now I lose half of it paying for help that the carers' allowance used to cover. And another one from Joyce Tedcastle: I don't know whether the programme is aware - she means us - but the carers' allowance is discontinued when you draw your state pension. I've looked after my parents for several years now but because I am 60 and getting my state pension I'm no longer paid the carers' allowance.

Redmond
And they're absolutely right, it's one of those terrible - the thing - the rules are - I'm not saying I agreeing with these but these are the rules - that it's seen as an income replacement benefit, so if you can't work therefore you can draw a benefit that covers a contribution towards your income. So when you then hit retirement age you then get your pension so you don't have an income replacement. So that's the logic, I'm not saying it's right, I'm just saying it's the logic.

Robinson
The founder of your own organisation was motivated by this whole point about the loss of income over sometimes almost a lifetime that would have been spent in work but is spent caring for somebody else and we're still here today with the 10 year strategy nothing new there.

Redmond
No, for us it's the really big issue that has to be tackled and we will certainly put in a lot of pressure on government to make sure that it's tackled as quickly as possible.

Robinson
Before we go to the calls I just want to talk to you about the sums of money involved because these millions and millions and millions that are announced, for example, £6 million for the country's young carers. Now I am told there are 135,000 of those, we have done our sums, £44 per child, that isn't really, as the Department of Health press release says, going to free children from inappropriate burdens of caring for people is it?

Redmond
No, not if you look at it like that. I think the thing to remember about the £6 million is it's targeted at specific projects, specific activities. And one of those is to get adult social services working better with children's services and making sure that they use the resources they've already got. They've actually resources within children's services and adults services to deliver on this but they're not joining it up and so an extra bit of money to help do that will make all the difference.

Robinson
Well we do have the care minister Ivan Lewis on the line now. I don't know whether you've heard what we have been discussing but we've had a great many e-mails already expressing disappointment that the care allowance has not been looked at and is not been amended today.

Lewis
Well it's not true to say it hasn't been looked at. We certainly do recognise it's one of the biggest issues of concern to carers. We've said today that we're reviewing the whole of the social care system, as you know you've covered that regularly on your programme, we're also looking at wider benefits reform and carers' allowance will be part of that process. So we are not today saying we don't recognise this as one of the biggest issues, we simply cannot today announce the solution. And I know that some people will be disappointed but we are announcing today an unprecedented doubling of respite care over a two year period,as you've said significant additional support for young carers and also major support to help those carers who are balancing work with caring responsibilities. This is a ...

Robinson
Well minister let's bring the callers in because we've been waiting for you for rather longer than we had hoped.

White
Perhaps we can just ask you one thing though because you yourself said, I think, that this whole - the thing about people losing their allowance with their pension you said that was unfair, so you must feel rather bad about making this announcement without - still saying to people this is going to be looked at in three years time?

Lewis
Well we didn't say it would be looked at in three years time. We're in the middle of a spending review period at the moment, as you know that comes to an end in 2011. We are looking at the question of carers' allowance at the moment because as you know we've got the consultation leading to the green paper on the future of the care and support system, there's a great paper on benefit reform. So it's completely wrong to suggest that we're simply kicking this into the long grass. We are not doing that. But in government we can't always do everything that we would like to do overnight, this is a 10 year strategy, major progress today from a respite care point of view, young carers etc.

White
We will get as many people on while we've got you with us. Carolyn from Wokingham in Berkshire is calling us. Carolyn - sorry is it Carolyn or Caroline.

Caroline
It's Caroline...

White
Okay what was the point you wanted to make?

Caroline
Well I wanted to raise the issue of long distance care. My mother is getting on for 90, she's got severe disabilities, lives at home, she gets about seven hours of homecare a week. And I and my sister live hundreds of miles away from her but if she has just a minor illness that's an emergency situation and one of us gets called in. Well my situation is that I have chronic pain and can't travel alone, so my husband has to take time off work to go up there with me but what is worse we have to leave our teenage son on his own in the house and we've often had to leave him for two days and nights on his own when he was 14 and 15, which I don't think is right...

White
It's quite a complex situation you're describing, what could the government do, what sort of help would actually assist you?

Caroline
Well I'm imagining that it would cost huge amounts of money but what I'm thinking of is a sort of flying squad of care staff that would come in when necessary. And obviously that is a complicated thing and it's going to cost huge amounts of money. But what would help me also is this - my mother's social worker responded to my letters and e-mails and telephone messages because the other thing that happens is that we've even been expected to make a 250 mile round trip to take my mother to a hospital appointment which seems absolutely absurd.

White
Okay Caroline I'm going to take a couple more calls because that's such a specific one I think you might need an army of people to solve that. Celia Courtney is calling us from Bridgewater. Celia?

Courtney
Yes hello.

White
What was your point?

Courtney
My point is that my worry is I cope perfectly well, my husband had a severe stroke and is physically disabled and lost his speech but my worry is what happens if I go into hospital? There is no apparently provision except wildly expensive private facilities but if it was a sudden going in who is there to help?

White
Let's put that to the minister, these kind of emergency situations that carers are terrified, as Celia, that they might be confronted with?

Lewis
Well Celia's absolutely right to raise the question, that's why, as you know, we put £25 million in only last year with a specific focus on emergency respite care, that's recurring money. But equally some of the money that we've announced today, depending on what local primary care trusts and local authorities regard as a priority within their communities, they can put money aside for emergency respite care if that is seen as a priority in their area. So certainly this announcement could lead to a significant expansion, not just of respite generally, but within that emergency respite care too.

Courtney
Yes because I mean I know of others who have this same worry. I mean I'm fit and healthy, I get nothing now because I'm now on my pension, I used to get the carers' allowance...

White
So you're the classic example of people, minister, that have been calling us - Celia's in that position as far as her financial ...

Lewis
Celia's concern is emergency respite care, that's what she raised, and I think it must be incredibly - you must feel incredibly anxious and insecure at the prospect of suddenly being hospitalised and not being sure who's going to be there to look after the person you love. And I think that's why the expansion of respite care, the doubling of it in only two years, is such a major advance and step forward. And it seems to me it can't be for me to decide, for example, in Bury how much of that money should be spent on emergency respite and how it should be spent on regular short breaks, that's something that local communities have to decide in partnership with carers and their representative organisations.

Robinson
Minister, some of our e-mails have pointed out that this money is not ring fenced and a number of our e-mails have asked what difference, what practical difference, will this make to me as a carer. Clearly the fear is that you announce these millions and millions and millions but on the ground people experience very little change.

Lewis
Well of course that's the fear that people will have, the proof of the pudding, as I always say to you on your programme, is in the eating. At the end of the day people will say to me how will you judge the success of this strategy and my answer to that would be from next April we'll see a major expansion of respite, if within a year, 18 months time of that people are not experiencing in their every day lives in real communities a major expansion and access to respite care then clearly the system will not be working right but I have every confidence that it will be though.

Robinson
What about the duties for GPs, they have a new duty to support the health of carers and as one of our e-mailers said GPs seem to be the new teachers, these are the people who have to cure all society's ills. If I am carer, minister, what real practical difference is this going to make to me?

Lewis
Well first of all within the existing GP contract GPs are supposed to clearly identify who the carers are within their practice and secondly make sure those carers get access to appropriate services. We know some GPs do a tremendous job in that respect, others don't do anything at all. And we're going to pilot this notion of health checks because we know - carers have told us - that there is a direct impact on their own health as a result of their caring responsibilities. So having preventative regular health checks is something we want to pilot and hopefully over time that will become the norm for carers.

White
Let me bring in Tracy Brady from Leeds who has experience of talking to ministers, indeed she spoke to the Prime Minister at Leeds and we broadcast it on this programme. Tracy what would you like to say to Ivan Lewis, you've heard what proposals that we've had today now?

Brady
This - all this really doesn't apply to me because I'm a triple carer but with - I'm unemployed at the moment, I've got three children so I try to help my parents who - one of them has got prostate cancer and my mum's got - she had a heart attack a couple of years ago, so she can't do much. So I spend more time down at their house than the normal paid job and I have to look after my children as well as help with a friend who's got two children with cerebral palsy.

White
So what would help you Tracy?

Brady
What would help me is when I go back to work - you know when I go to these job interviews for work if they would take on board that I am doing a job but unpaid and if they could - if my mum and dad could afford - they're in the state pension now they don't get actual allowance, carers' allowance - if they did get it I couldn't receive it anyway to help them because I'd get penalised because I'm unemployed.

White
But you want really the employers to understand more the kind of situation you're confronted with?

Lewis
Well a major part of the announcement today is two things. One is to help people like yourself who would like to work ideally but can only work in a flexible situation...

Brady
Very, very flexible.

Lewis
And secondly to make it - if you like - to raise the profile of the fact that we've introduced the right for carers, for the first time in this country, to request flexible working when they're in employment, a lot of employers are not aware of that. But can I just say a thing about the friend with cerebral palsy - this is really important - separate to this announcement today we've already announced in terms of aiming high for disabled children £340 million over three years to expand the respite care and other forms of support specifically going to parents with disabled kids and that's in addition - that's separate to the massive expansion of respite for those caring for adults today. So it will directly impact on your friend and your situation I hope.

Brady
Yeah, it's like when she wants to go anywhere she's got four children and if she wants to take the two older girls I have to be there for the two little ones if they can't go.

Lewis
Well that's why that massive expansion in terms of respite for disabled kids and their families is so, so important, that's separate to the announcement today.

White
Tracy thanks for your call, thank you very much indeed.

Lewis
Nice to speak to you Tracy.

Robinson
Just very quickly before we leave it. We've had a text in response to what the minister said about respite from Mike in Devon. He says that he has seen a falling away of any respite services in response to what the minister had to say, he said that twice nothing is nothing and so that is easy to achieve. The time now half past twelve, you're listening to Call You and Yours on Radio 4 with Peter White and Winifred Robinson, we're discussing care and how best to support the six million people who look after someone who is disabled, ill or frail. The government's published its 10 year strategy for carers today and we are canvassing your verdict on it. You can call us now 08700 100 444 or e-mail us through the website, here's the address bbc.co.uk/radio4/youandyours or send us a text to Y O U at 63399. We have the care minister Ivan Lewis and some expert guests to respond to your thoughts.

White
I'm delighted to say that the minister for care services can stay with us till the end - oh I'm just being told it's quarter to one, so we'll get as many on to talk to him about the latest care proposals as we can. James Berglan is calling us, James what was the point you wanted to make?

Berglan
Well I had two points to raise initially. One's been answered in some way and that was losing the carers' allowance once you get to 65 and all the minister says is just words, I can't see anything really happening in the near future. The other reason I rang is you mentioned - someone mentioned - ring fencing of the money being allocated for respite. Recently my son, who's 45, and autistic had been going to a respite care house locally for many years and knew the house, knew the staff and there was no problems. We've got five or had five respite care houses in the region and someone in the local NHS trust decided that there were various vacancies in these houses which they've let occur and if they added up the vacancies they could then take people from two of those houses, close those two houses down and fill the spaces. And this is at a time when there was something like 500 families in the Guildford area that had no respite whatsoever. With that mentality we're not going to go anywhere.

White
Let me put this point to the minister because it ties in with what one of the e-mails said from Devon, this idea that you've made much of the respite care but if it's not ring fenced and local authorities aren't protecting it this isn't going to help people is it?

Lewis
Well of course the money we announced today will go through primary care trusts. There's also an amount of money, as you know, which goes to local authorities through the annual carers' grant. But what this strategy also says, for the first time, which I think is very important, is we expect the local authority, the primary care trust in every area to get round the same table with carers and their voluntary sector representatives to plan a strategy in every area about how they're going to use this money to expand respite care. To be very honest with you Peter if you want to say that - be cynical and negative I can't do anything about that, all I can do is promise ...

White
No it's not being cynical to say that ring fenced money is disappearing, it's the callers who are saying this.

Lewis
I have said very openly today the proof of the pudding will be - will carers in their lives, in their communities, see a major expansion of the respite care available to offer them better quality of life? If that doesn't happen over a two year period then clearly it will not be working as strategy. All I ask is that we are recognise that we have today made a really important step forward with this strategy, specifically with the money for the - perhaps an unprecedented expansion of respite care. But of course we'll be judged by people's experiences in real communities.

White
Could you not have ring fenced it then, wouldn't that have answered James' point and the caller - the e-mail?

Lewis
Well the difficulty with this is of course we had this long debate for years about command and control from London, we were told we should devolve, allow local communities to make decisions about their local needs, now everybody wants us to ring fence money. It's a very, very difficult tension. But I assure you that we will be holding the health service to very close account and indeed increased new local government in terms of what they're doing with the carers' grant we give them and we will expect to see in this context a massive expansion of respite care as a result of this money.

White
Nicole is calling from Plymouth, Nicole what was your point, what would you like to say to the minister? Hello Nicole.

Nicole
... was that my mum suffers with dementia and multiple TIAs, sadly at the moment, she's just had a massive stroke. But when I became mum's full time carer I went to university so that at least I wasn't spending all my time at home with mum. But because my timetable at university - it was a history degree - because my timetable covered me between 7 to 10 hours per week on top of that research time was taken into account by the social services who said that I actually then came over the 21 hours a week and so I wouldn't be penalised and not allowed to claim the carers' allowance. So out of a 168 hours a week, because I'm mum's sole carer, because I would have been taking 21 hours a week out of that for myself I was unable to claim the carers' allowance. When in actual fact in reality I was only at university for between 7 and 10 hours a week because it was a research type degree I was able to do most of it at home. So I was penalised if I was going to take 21 hours a week out of looking after my mum.

White
Mr Lewis, is that too rigid, have you addressed that at all in today's statement?

Lewis
Well one of the things that we say is that carers should be encouraged not only those that want to combine work with caring responsibilities but those that want to do education and training, like the situation that you've just described. So I would hope that we would see a far more flexible and responsive approach within the rules to a carer who find themselves in these circumstances. It seems to me why today is so important it's about generally raising the status and the recognition of carers in our society, within public agencies, within local communities and I hope that that will lead to a number of the changes, some of which are policy, some of which are about putting money in but some of it is about using discretion and common sense when these decisions are being made.

White
Let's take a call from Carol in Walton. Carol?

Carol
Yes hello David. Very interesting programme. I'm self employed and I'm a full time carer for my husband who had a stroke about five years ago. He's quite disabled. In fact very disabled but fortunately his personality and so on is unchanged and his speech is good so those are the pluses. I've had all sorts of problems, many of which have already been expressed through your other callers, so I totally understand where they're coming from and there's no need to repeat that. It's just to say that I really do feel that for your minister to say that he's not interested in a cynical attitude coming in from listeners and so on is really rather laughable when I believe that the government's attitude to all this has been really quite cynical all this time. And the people involved - the carers, the therapists, the people I have to deal with - are all utterly, utterly committed and highly devoted to the job and I have enormous respect for them. But they are hampered constantly by the system and the system is not helpful either to them or to the people they're dealing with because all the time it's a question of well I'm sorry Mrs Harrison there isn't the budgeting for that or there isn't the funding for that or etc. etc. When we're talking about all the basics that have already been discussed by your experts, this is what we want, this is what we should have etc. etc., they should all be in place already ...

White
Minister, it isn't cynical is it of Carol or me to say that this does come down to resources in the end?

Lewis
Well with all due respect I'd never accuse Carol or any other listener of being cynical, I talked about you as a presenter fuelling cynicism. But the point is that one of the ...

White
We're just taking the calls we get Ivan.

Lewis
No, no, let's be honest about this, this carers' strategy was drawn up after discussions, and you know this, with thousands of carers up and down the country. It has a title which says a caring system on your side and a life of your own. The reason it has that title is because carers themselves told us time and time again the system wasn't on their side, it's a nightmare fighting your way through the bureaucracy, you feel all the time people are trying to stop you getting help rather than get help. So exactly because that is the reality, those are the experiences, not cynical, those are the real everyday experiences of carers. That is why my job is to try and change that and I - not just with the announcement today but the reform programme in social care which only began in April of this year, moving to prevention and early intervention, giving people their own budgets to control their own care, better quality information and advice, the fact we're producing later this year a national dementia strategy, as well as this 10 year plan for carers. To say that we're not doing anything, we don't care, we're not in touch with the realities for people out there is easy. Actually I am passionate about changing this system because at the moment it lets far too many people down.

White
Let me get another caller on because we've promised as many people to talk to you as we can. Miles is calling, Miles?

Miles
Oh hello.

White
Yeah, what is the point you want to make to Ivan Lewis?

Miles
Well it's again about charging and funding. I live in the north of England and I care for my wife. We - we had a very strange situation with this local authority whereby they made excessively high charges for care for my wife and I challenged them on that and they then suggested - and this was a social worker working for the local authority - that I should appeal for unemployment benefit and by doing so I would then raise the household income and they could then continue to make a large charge. And the curious thing was that I was actually tutored by the social worker into how to defraud the benefit system, I was told how to get out of my car and make out that I had a very sore back, how I should be careful of tricks that might be played on me in the assessment - pushing pencils off the table and seeing if I'd rush to get them etc. I, of course, don't qualify for unemployment benefit because I voluntarily gave up work for - to look after my wife.

White
You're saying you want to be able to go on either working or treated as a carer without playing these kinds of tricks?

Miles
Well the important thing is that the local authority thought that they could levy very high charges and somehow increase the income for the household so that the household stayed within, well outside poverty. And the absurd thing was of course that this is - and this should be made widely public - the way social services homecare is funded is through the Department of Health and the Department of Health annually gets figures from each local authority about how much care is being provided and the Department of Health send money to the local authority to their social services department and to fund at a minimum of 91% of the cost.

White
You are making a complex point and it's important because I will get a reaction from the minister because social services they constantly do complain that it's the amount of funding that they get from government that means that they can't provide the services they want to, this is the sort of thing that directors of social services say to us repeatedly.

Lewis
Well there's been a 39% real terms increase in the amount that's gone to local government over the last few years. But the other thing that I think we've got to ask ourselves - why is it that within local authorities and between local authorities there is such a different approach to charging and to access to services if it's all about there isn't enough from the government. We see massively different offers to people and experiences for families depending on the area in which you live in. Of course I've asked, as you know, the regulator to do a fundamental review of the eligibility criterion because of those inconsistencies, we'll have that in the autumn and then as well as the longer term review of care and support we'll be able to move on this question of inconsistencies between local authorities and within local authority areas.

Robinson
Well before the minister goes off we want to bring the shadow health minister, Stephen O'Brien, into this discussion because if the polls are any indication then it may be his party, rather than Ivan Lewis', that have to deliver on the strategy that's been unveiled today or not, as they choose. Stephen O'Brien what has been outlined, is it in line with what would be your own approach?

O'Brien
Good afternoon. I am pleased to see the publication of this report. I'm glad that the government has indeed listened to the many calls from carers up and down the country and indeed to ourselves for more to be done in relation to particularly regular planned respite care in addition to the emergency respite care proposals they put out not so long ago. And also increased access to information and advice for carers and indeed they've also made announcements today on young carers and flexible working. So these are all things which I think should be welcomed and it's important to recognise that that is consistent and something which I think we all support. I think the thing that concerns me and indeed others is this need to get on with the review. I recognise it's a very tough area but we do need to move on the review and it's particularly in relation to the complexity of the bureaucracy of getting this access to the benefits and the way they work and the various difficulties people have when they hit either 65 or some of these other cliff edges. So I think that's one of the areas where obviously we would urge the process to move much faster and indeed I think we're all doing our very best to look at this area and to try and move things forward.

Robinson
Stephen O'Brien, shadow health minister, thank you.

Sue Yeandle is professor of sociology at Leeds University. Professor Yeandle I know that you had a role in drawing up this document and that you costed some of the proposals that perhaps haven't made it into the strategy or maybe haven't made it in yet, some kind of new carers' payment maybe or changes to the current system, as we've heard from many callers and e-mailers this allowance is very small - £55.55 a week - you lose it when you're 65. Did it not get in simply because it is too costly, particularly given the current economic climate?

Yeandle
Well I think one of the things your listeners perhaps also need to be aware of is that there's currently a House of Commons select committee looking at issues in relation to this - the Work and Pensions Committee is looking specifically at benefits for carers in its current inquiry which will report later this summer. I'm an advisor to that, I can't tell you anymore about the detail that will come out of it because it's not yet been decided. But I can say that - because it's a matter of public record - that very many representations have been received by that committee about this very issue and I think people do need to understand that this is a very complex matter to resolve in a way which will be fair and beneficial. So I think that there is attention being given to it and I understand the disappointment - people feel it's not here today. But I think that probably there is a serious all party focus on this which may well yield some results.

Robinson
Well the care minister Ivan Lewis wants to say one more thing before he has to leave us. Go ahead minister.

Lewis
I just wanted to say that Stephen O'Brien referred to review. I think it's important to say this strategy today is backed up by £250 million, the changes that we're bringing about in social care only begun in April in every local authority area is backed up by over half a billion pounds of reform money. We're going to be producing the national dementia strategy later this year. So all I would say is we recognise we still have an awful lot to do and we've got to make sure the new money, the issues that are outstanding such as the carers' allowance, are addressed and we need to make sure that within a relatively short period of time carers in the real world begin to experience improvements to the support they get, the quality of life for themselves and their loved ones. We do not want to pretend with one announcement you solve the problem because that would be dishonest but I do believe this is an excellent start in terms of giving carers the recognition and status they deserve. It's only a start and we'll be judged by how it impacts on their lives in the real world.

Robinson
Ivan Lewis thank you for taking part in the programme today.

Imelda Redmond from Carers UK, a little bit earlier the minister made the distinction between those things you can put right with policy and those things where you always have to put money in, can you draw the same distinction?

Redmond
Actually I think you can. What carers tell us all the time is that they're often treated very poorly by professionals who just don't recognise them, who just don't treat them as an equal player in the care of the person they're looking after. It costs nothing for people to actually recognise the role of a carer. So some of it - there are things that are about attitude, it's about a recognition of the role of carers and really appreciating the contribution. So I think there are. There are things that can only be fixed with money and certainly the benefit system can only be fixed with money. So there are different - not everything is about money but some things are absolutely about money.

Robinson
I think we'll take some more calls.

White
Let's go to Ron Edgcombe in Cornwall. Ron, good afternoon.

Edgcombe
Hi. I've been listening to this and I'm quite impressed with what they've come up with so far. But I've got a major point that nobody seems to be addressing and that is my wife, for instance, my full time carer, is 42, she decided - well we both decided - that she should try and go back to some form of work at some point and she was already doing voluntary work with mentally disabled people in between looking after me - she finds it a relaxation, don't ask me how but she does. Now she went to the local job centres both in St Austell and in Plymouth and said look this is what I'd like to do, I'd like to be able to go and do something with my life as well as looking after my husband but I don't want to go into a mundane job where I'm just going from one role of cleaning up to another, can I get help with courses? The job centre had - job centres - had no idea what she was talking about and I think they found it quite strange that somebody who was a receiving a carers' allowance would want to actually try and do something for themselves. But besides that we then had to do our own research. She is now going to start an NVQ course in between caring for me, which is the way she wants to go, but to get that we've had to go through three different colleges, one in another county, just to get the information to start the course and it's taken us seven months to do it. And I see nobody addressing this side of the issue - that these carers, especially people in my wife's position where she's got a lot of life left at 42, are not being given the opportunities and not being classed as normal citizens from what I can see of it.

White
Ron, I've already been accused of being cynical today, so let me try and be constructive about this because I think Imelda and Sue Yeandle - but there are proposals in here for more cooperation with job centre pluses which Ron refers to, I'm right about that aren't I?

Redmond
Yeah you are right. It's something - you're absolutely right Ron we - at Carers UK we have noticed - we've had loads of calls about people being let down by their local job centre plus and we've lobbied quite hard on this issue. There are people like your wife, 42, as you say many years of work ahead of her, but there are also people who are still of working age when their caring comes to an end and they need to get back into work and there are proposals within this strategy, for the first time, to actually really get the return to work agenda working for carers.

White
Okay, Ron thanks very much, let's hope that helps. Ann is calling us from Manchester.

Ann
Hello. Oh hi. Now the point I want to make - I'm a single parent with a child with severe disabilities. I get a carers' allowance, which is £50 a week, and mine has to be topped up with income support. You're not allowed to have savings over £3,000. It's very difficult sort of to be seen as somebody who is unemployed but actually working. It just seems to me a very strange sort of situation that ...

White
Because it causes presumably confusion amongst sort of friends and professionals as well, you're really talking about the status of the carer here aren't you.

Ann
Yeah because we are working, we're not unemployed, we're not just going around doing nothing everyday, we're constantly - we work very hard but we're not seen as a worker, we're just seen as unemployed. And I just think that whole situation is wrong anyway. And so you get a carers' allowance - there's 50 quid - plus it's got to be topped up then, loads of forms to do, a lot of work to do there again taking away from your caring role, hundreds of forms. Then you're being checked on all the time and make sure you've got no money over £3,000 if you do and then there's lots more forms to do and it's never ending with forms.

White
Ann, thank you very much for making that point, quite a lot of people have made that to us as well. And Edward is our last caller. What was the point you wanted to make?

Edward
Just wanted to be a bit more positive. I care full time for my wife. She came out of hospital, that night care came in, I had to go to hospital to have a scan, I asked for help, I got a person in all morning and it didn't cost me a penny. For older people Age Concern employ special advisors who are paid for by the government to help people who are having these sort of troubles and they come in and the lady who came to me was here two and a half hours.

White
Now was this some - Age Concern of course is a private charity, you're also talking about statutory help, so is this an example ...

Edward
Oh no I'm talking about the government through Age Concern providing and paying for people who will come into your home and discover what help you want and get it for you.

White
So do you want to mention the area in which you ...

Edward
Well I'm Oxfordshire County Council area and it's fantastic. I mean currently I'm having difficulties, I get assessed every six months by the home support people, I get assessed every year by my carer, currently I'm having a bit of trouble and they're looking round and say they can get me extra help.

White
Edward, thank you very much indeed.

Robinson
This is the point in the programme - we're almost at the end - where we try to sum up what the listeners have had to say. A great many of our calls today about the carers' allowance and about benefits. Lots of them about the quality of respite care, some saying it was dreadful, some saying it was very good. A lot about the disparity in services depending on where you live. Professor Sue Yeandle, we heard the minister say there's always this tension between top down instructions and allowing local communities to decide local needs, how long do you think this disparity in service can go on?

Yeandle
Well I think we have to make a commitment right now actually across all of the agencies - public, private and voluntary sector - that have responsibilities and act in this sphere to actually tackle this really important problem. And I think the last caller shows how much of a difference it can make when we get it right and we don't get it right often enough. But we do know from research and from the evidence of - and the testimony of people like that caller what can work and what can make a real improvement in people's lives. And I think the strategy is a move in the right direction and I think the key messages within it are a really important step forward. And one of the things I do very much welcome is that we seem to be getting all party consensus on this and behind the strategy we have all the social partners - the voluntary sector, employers, the trade unions, local authorities etc., professionals - all trying to find a way of making this work. And I think if we really commit ourselves to doing something here we can cascade out the best practice. And we must tackle the remaining problems and the carers' allowance problem and the benefit system is that problem which must be addressed.

Robinson
Well that's it, we've come to the end of the programme. Professor Sue Yeandle and Imelda Redmond thank you both.

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