There are currently six million people across the UK who provide unpaid care to someone they know – a figure that will only increase with Britain’s ageing population.

If you care for a friend or relative, or are a receiver of care yourself, you will know firsthand the true cost of caring. Carers Allowance is the lowest benefit, set at just £53.10 a week. Carers also rarely get chance to take a break from the role – over a third (31%) of long-term providers have never taken a holiday.

The government’s recent Green Paper, ‘Shaping the Future of Care Together’, is attempting to update the nation’s care system for the first time since the 1940s to create a system that fits our 21^st century needs and provides long-term financial provision for those in care.

The problem of how to ‘fix’ the funding gap is addressed in the green paper. According to research by Saga – who have been advising the Government – the current postcode lottery looks particularly unpopular, with half of over 50s questioned (51%) in favour of a system that would see the government provide a set standard of care for everybody, regardless of where they live, and which could be topped up by the individual if they wish. Only one in five (21%) of those preferred an insurance policy approach, paid throughout their working lives. The alternative strategy of a one off payment at retirement or death equally lacks support (6%). The vast majority (84%) of over 50s also resoundingly agree that the current system of means testing is unfair.

Carers need to be empowered and informed to the help currently available, and what they can do to improve the quality of life – for both themselves and recipients of care. In our live and interactive webTV show you have the chance to question Phil Hope MP, Minister of State for Care Services, over some of the proposed changes and where the future for caring lies. Joining the minister will be Emma Soames, Editor-at-Large of Saga Magazine, who is at the forefront of attempts to lobby for change.

There will also be more details on the current initiatives available to UK carers, such as the Saga Respite for Carers Trust, which this year is increasing the number of people it can help.

Emma Soames, Editor-At-Large of Saga Magazine, and Phil Hope MP, Minister of State for Care Services, join us live online to answer your questions about the government’s Green Paper

For more information visit www.saga.co.uk

H: Lis Speight, host
E: Emma Soames, Editor-At-Large of Saga Magazine
P: Phil Hope MP, Minister of State for Care Services

H: Hello and welcome to the Healthcare Show, I’m Lis Speight. Now six million people are working unpaid as cares to someone they know – and with an ageing population this figure is only set to increase. Currently the Carers Allowance is the lowest benefit, set at just £53.10 a week. And to make matters worse, new research undertaken by Saga uncovered that a third of long term carers never even take a holiday. The government’s recent Green Paper, ‘Shaping the Future of Care Together’, is an attempt to update the nation’s care system for the first time since the 1940s. Well joining me today to discuss this and more is Minister of State for Care Services, Phil Hope MP. Welcome along Phil

P: Hi Lis

H: Lovely to see you today.

P: Good to be here

H: And also Editor-At-Large of Saga Magazine, Emma Soames, welcome Emma

E: Hi Lis

H: Thanks for coming in. Now we are live today so if you’d like to join the debate about care services then do get involved. All you have to do is type your name and your question in the box that’s on the screen, press submit, it’ll come through to us here in the studio and we’ll try to get through as many of your questions as we can during the course of the show. But let’s start off by talking a little bit about carers first of all. Emma, what sort of experiences do carers have out there?

E: Not a very easy one. For a start they have completely sublimated their own lives, given up – in many cases – their work, to look after either a disabled child, or a partner, or in some cases both

H: Crikey

E: And they have several problems. One is they’re not very well-off and the allowances aren’t great. Secondly sourcing help is a big difficulty and thirdly getting respite care. And we at Saga are particularly concerned about how it really is damaging to people’s health in the long term if they do not get a proper break from their caring responsibilities

H: Ok but it is a bit of a postcode lottery, I mean we hear that phrase a lot but as far as carers are concerned, if you live in one part of the country you might get completely different support than someone who lives in another

E: Yes and that’s one of the reasons why we welcome this debate and the Green Paper because I think whatever the final solution is, the fact that there is going to be a national care service set up, with hopefully proper standards right across the country, then whether you live in Lancaster or Liverpool you will get the same – the access to the same care

H: Ok

E: Or the same allowances or standards of care

H: Yes so that’s the aim, so this Green Paper has been published now. Phil just talk us through what the main proposals are

P: Well this is really exciting, we’re proposing to set up a national care service, and some of the features of that care service are that we’re more emphasis on prevention so people are helped in their own homes and – live ordinary lives, live well and not as it were get worse if they’re being cared for at home. So we want to make sure that there’s a single kind of assessment that takes place. At the moment to echo the points about different assessments everywhere, and the postcode lottery, instead of being assessed differently in different parts of the country, we have a single assessment process so that everybody gets assessed the same. I think that’s a really important part of the portability of this system. We want to integrate more the health and social services, because people bounce around between the two systems and find it very difficult. And we want to make sure that the care people get is much more personalised, really tailored to individual needs, and I go round lots of people’s homes, whether it’s residential homes, people in their own homes and I see the huge difference it makes when people get what they want from the care system, rather than what somebody else wants to give them

H: Yes

P: And that’s important. And then of course the question is how do we deal with the unfairnesses in the system, the means test – not many people realise that this system is means tested, they think they’ve paid for their social care when they pay for the NHS and of course the NHS doesn’t provide social care, so can we do something about the means test whereby people have to run down their savings

H: Right

P: Or even spend their money – sell their homes

H: Just to qualify

P: Just to pay for their care, can we do something about that? And of course the demographic challenge, people are living longer which is fantastic, but it does mean there’s going to be 1.7 million more people requiring care over the next 10 / 20 / 30 years and we’re going to have fewer people of working age, who are paying the taxes to pay for the people of pensionable age and above who need social care. So can we do something about setting up a system that deals with that demographic challenge? And we put forward 3 funding options to try to solve those problems

H: Ok can you just run through those quickly because they’re quite important aren’t they?

P: Absolutely essential. So the first option is called the Partnership Option where we take the sum total of money spent on care and support and re-shape it, and that’s why we call shaping the future care together, so that everybody, no matter what their wealth would get up to 30% of their care paid for

H: Right

P: And that’s a big change from the situation at the moment where if you’ve got savings you don’t get any help with your care

H: Right

P: With your care at home or care in a residential home. So that’s the – but that still leaves as it were, the remaining 70% to be paid for. Now obviously people on low incomes would continue to get their care for free. But what about everybody else? So the second option is the insurance option, where people could make a voluntary payment into an insurance scheme to cover the cost of the rest of that 70% of their care. But that would be a voluntary scheme. Now our modelling, as we do it through the Green Paper shows that only 1 in 5 would do that

H: Right

P: Would pay that money in, so that still leaves 4/5 of people uncovered

H: Yes

P: So the third option is the comprehensive model, and the comprehensive model would require everybody over the age of 65 to pay an amount into the social care system, so that we share out the burden, we share out the costs

H: Right

P: Of meeting the needs of older people and I have to say people with adults as well, working age – you know people with disabilities as well, and that way we would have a much fairer system requiring everybody to put that money in, and you could pay that upfront, but I think a lot of people would end up paying that when they die, taking it off their estate. So those are the 3 models, we’re having a big care debate

H: Yes

P: Up and down the country. Delighted to be with you on this webchat now because I want people to go onto our website, the Care and Support website, have a look at those options, have the arguments and my experience of this is that people change their views every time they have the argument, arrive at your view and then let us know what you think. I’d like to have – I want to build a national consensus from this national debate about creating a national care service with those characteristics and choosing one of those funding options that really takes us forward. It’s a bit like when we created the National Health Service in the 1940s, and we’re doing the same to create a National Care Service fit for the 21^st century

H: So there’s lots of ideas there – Emma what do Saga think of some of these?

E: Well we’re particularly concerned about how it affects carers, and we believe that the best quality of care is given to people in their own homes by somebody they know

P: Yes

E: And secondly, still in their own home, not necessarily by somebody they know, but everybody always wants to stay at home

H: Yes

E: However you’ve got to look after the carers and when we surveyed a lot of carers we found that 30% of them had never had a holiday in more than 5 years

H: Goodness. And it’s exhausting because you just never get a day off do you?

E: Well exactly and it’s 24 / 7, 7 days a week you know, their not on a European Work Directive week

P: Can I just say I agree with Emma very much about the importance of carers. This would make a huge difference to carers because depending on which funding model is chosen and how it’s constructed, it could mean a huge amount of support and help for people who are carers. I mean I think it’s great that people care for their loved ones in this way, and you’re quite right, we want to give incentives if you like for people to be looked after in their own homes but we don’t want to place a new burden on carers

H: No

P: So it’s really important that things like respite care – we’ve got our 10 years carer’s strategy and last year we put another £255 million into the system to help pay for respite care, so that we don’t have a 30% of people not getting a break from that job of caring, and we’re going to be rolling out the rest of the 10 carer strategy as part of this creating a national care service. I don’t think it’s – I don’t pretend it’s easy

E: Yes

P: I think it’s – the big challenge is –

E: And in fact Minister, I’m sorry to interrupt

P: Go ahead

E: But I think there was a story recently that the respite care money wasn’t actually getting through because you were giving it to the local authorities and then it disappeared –

H: It wasn’t being ring-fenced, it was being spent on other things

E: It was ring-fenced

P: And that’s right and this is a real challenge for us because we know that decisions about providing the support and care for people are best made at a local level, because what you deliver in rural Norfolk is going to be always different from urban Manchester and all the different cities that you alluded to

E: Yes

P: So it’s right that these decisions are made locally so that’s why we take away the ring-fence so that local councils can make their decisions. But that doesn’t mean that local councils can spend it on something else. We expect those local authorities, having got that extra money and primary care trusts, I might add too have got extra money for this, that they use that money in a way that does meet the needs of local carers, so we’ve put money in the system and I expect local primary care trusts and local authorities to work together, find out the needs of those people with – who are carers, and the people they’re caring for, and then deliver to them the kind of support they need to do that job with the right level of support and help

H: Ok. I mean we’ve had lots of your questions coming in, and we’ve had an awful lot about concerns from carers about the attendance allowance. “Is the government proposing to abolish the attendance allowance, and if so how is it going to be replaced?” Because it’s quite crucial isn’t it for a lot of people in need?

P: That’s right, so – and it’s complicated at the moment because people have an assessment for the attendance allowance and then we have a different assessment of their care under the care system, and of course we’re trying to change the care system so that people take that as money, not just as a service, but they have their personal budget. So we can see a lot of sense, and it was Derek Wadlis, and expert in these field who said listen, people are getting cash from the attendance allowance, they’re getting maybe a direct payment, or their personal budget, and put the two together and you’ve got a bigger amount of money that people have more freedom to choose over how they spend that money. So what we’re looking at, what we’re consulting on is the idea that we might take the two amounts of money, put them together and reshape that in a way that does provide that universal support for people, so that everybody is getting something from the system, that the people – as they do now – that they get it in cash payments or at least in personal budgets that they – that they control and get, and that it meets their needs the best because it’s determined by them. Now this is a discussion and no it isn’t about abolishing the attendance allowance –

H: No

P: It’s about taking that money and using it in cleverer ways to make sure that older people, and adults with disabilities get the kind of support they need. Now attendance allowance only applies to over 65s and I know that’s the prime area that we’re talking about here today, but of course we’ve got adults with disabilities too. We want to see – can we make the care in the disabilities system really work a lot better for people who have got – who are disabled or older, and frail and need that support. I think we can do it better I’m really keen to know what people’s views are about that

H: Ok

P: Can we reshape these budgets, to make a better system, make it less complex so that people don’t get bounced around from one system of assessment to another, and they get the care that they need

H: Ok so don’t panic out there, you’re not going to suddenly get your attendance allowance taken –

P: Definitely –

H: Away

P: Let me make – and whatever system we make – change for the long term future, nobody currently in receipt of any of these benefits and systems of support are going to have anything taken away from them

H: No

P: But in the longer term can we create a better system for everybody?

H: Ok lovely. Let’s move on to some more of your questions actually because the time’s really getting on

P: Sorry, yes

H: Jill Fields said “has a 2-tiered system of carer’s allowance ever been considered? The current payment is an insult to all carers but for those like me who 3 years ago now had to give up paid employment all together and move in with my dad who is in the advanced stages of Alzeimer’s and requires care 24 / 7” – it’s such a burden isn’t it? “Those who have put their own lives on hold to care for someone full-time should surely be entitled to higher payment than those who care for 35 hours a week, but are still unable to work part-time and live independently from the person they care for?” Now Jill goes on to say that “shouldn’t we be entitled to a higher rate of pay than those who work a 35 hour week?” What would you say to that? I mean would you say that that’s right?

E: Yes. I mean I think people who care full-time, they really do sacrifice a great deal. In some cases really rather – you know splendid careers

H: Yes

E: They just have to stop full-stop

H: They’ve still got their mortgages to pay and it goes on doesn’t it?

E: Yes. And I imagine the Minister would know more about this than me, that actually if you are working, your benefits and your income would be put together and maybe you would become liable for tax, so you probably wouldn’t be getting as much but I defer to the Minister on this one

P: Well carer’s organisations have estimated that the total value of the 6 million as it were “unpaid carers” and everything else, is in the region of £80-odd billion

H: Right

P: I mean – you know that’s almost the whole of the cost of the National Health Service

H: Yes

P: Every year because people are looking after a loved one, a member of their family. And of course the carer’s allowance is not a wage

H: No

P:It definitely is not, it’s compensation for – some compensation – for the money that people have forgone, who have given up a job, to look after a member of their family or a relative in that way. And it’s that reason why we published the 10 years carer’s strategy, to see if we can do better at providing that kind of support and indeed respite care. And I know from my colleagues in the Department of Work and Pensions who kind of control the carer’s allowance in the benefit system that some people can be claiming 10, 15, I think 25 different sort of benefits that somebody might get if they’re in a particular circumstance, as a carer, with somebody they’re looking after, and it’s a confusing and complex system where for good reasons we’ve added a carer’s component to the – to pension credits, or we’ve – you know we’ve added things on to help people in different circumstances and the result and shape of what we’ve got is a bit of a mess if the truth be told, so that’s why we’re committed to reviewing the whole of that kind of income that people get for all these different reasons and thresholds and criteria to see if we can make that a lot clearer and then a lot fairer for people

H: Ok

P: So there’s a sort of reform of the welfare benefits system that we want to put in place to make sure that carers do get a better deal, get more support and that would – as it were – compliment the work of reforming the care system which I’m responsible for, in a way that people do get the actual care as well as the money that they want to live independent lives

H: Ok so there’s quite a lot of work to do by the sounds of it

P: Yes

H: Moving on to some of your questions then, we’ve had one in from Julie Ward which is to do with working carers. She says “I’m the mother carer of a young child with a disability. I’m a lone parent and I work part-time” – well done you, it sounds like you’ve got a lot on your plate

P: Yes

H: “Can you tell me what support you think should be offered to working carers in order to maintain both roles?”

P: Well I think people at work can get extra help and care and I was struck by something Emma said about how do you navigate your way round the system to find out if I’m at work, and I’m a carer looking after my disabled child, what am I entitled to? So we’ve created something called Carer’s Direct – this is a website which is very well done, and I would recommend to her and to everybody else –

H: Right carersdirect

P: Go onto the Carer’s Direct website which has been designed in partnership with leading carers orgnaisaitons, voluntary orgnaisations that champion carers, and that gives good advice, not only the financial side of that but other practical help that carers might need. There’s even a training program that some of the carers we’re funding to run called “Caring with Confidence”, which helps people to learn more about what they might have to do to be able to care very well. So whether it’s about how you combine work with caring, learning about all the benefits and income you might be qualified for, or how to do this job of caring better, the website and the voluntary organisations that we’re doing this in partnership with is there to help people and I really would recommend people go straight onto there and then they can find out answers to many of their questions

H: Ok I hope that’s of help to you. Let’s move on to some more of your questions. Janine says “hi Minister” – there we go – “I’m interested to know more about practical help for family carers who care 24 hours a day, 7 days a week. I’m an unpaid carer for my 80 year old mother with dementia and my daughter with a dual diagnosis of autism and downs syndrome” – oh my goodness, some people’s lives – incredible isn’t it?

P: Yes

H: “Often I get 3 or 4 interruptions to my sleep which wrecks my day. Respite care is just not good enough for either of them.” You really sympathise with these people don’t you?

P: Well I – and it’s very difficult to comment about a particular case –

H: Case, yes

P: But I would hope if there was a proper assessment being done of both her parent’s need –whose obviously got – is it Alzheimer’s?

H: Yes yes

P: And a daughter with other conditions that there can be a complete assessment of those individuals and the care that they need, as well as being at home caring, I mean in that kind of sandwich between caring for somebody older and caring for a younger member of the family, there may be other help that’s available in terms of care assistance, personal assistance and working with a social worker who can go through and literally hold her hand through all the choices that are available, all the support that is there, and making sure that she gets the support she needs when and where she wants it, to provide that care for her family. That’s the system that I hope is operating in her area, it certainly operates in that way in other areas, and if it isn’t then she should ask the social service

H: Yes

P: Look come on, I need a complete package here

H: Yes. If she’s got time in her busy life – it’s like that’s part of the problem isn’t it?

P: Well yes exactly that and that’s what we’d like to see for this new national care service

H: Yes

P: Is people to have complete packages – you know that combines together all their –

H: So that it’s easy to sort out –

P: Various demands

H: What you’re entitled to

P: Exactly

E: I mean at the moment it is – I mean it is improved by the beginning of the carer’s strategy

P: Yes

E: But it was so complicated that people really got so depressed and knocked back all the time because they didn’t know where to start –

H: Demoralising

E: They were going to the wrong place, they kept being shuffled around through departments and the fact that there is a one-stop shop which can send them off in the right direction, or deal with it right there is terrifically important to the quality of life of carers, and lets them get on with what they want to do which is looking after their loved ones and hopefully –

P: Living their own lives

E: Living their own lives

P: Yes

E: And I think this is one of the things that I’ve become very aware of by visiting some carers is their status falls. These are people who had lives of their own and suddenly they just become a carer

H: Housebound really in many ways I suppose

E: Housebound, one carer told me, she said I don’t live in the same world as you, and I really believe her actually because day and night is different, she’s on duty, she’s on call, she’s stuck at home

H: And it could happen to any of us actually couldn’t it? We all think it will never happen to us and it could

P: Yes and that’s why –

E: Exactly

P: That’s why, I’m delighted where some of the changes I’ve seen, because I go round and meet families and carers as well, is that where people, many people qualify for, you know government help for the caring they’re providing, but how that help should be provided, how it should be delivered is really important and so you know I know I’ve met people who have said well we’ve got this extra help and then I chose a personal assistant or a care worker who was a friend, who was actually a relative even who could come in and be paid as part of my care package, to come and help me out

E: Fantastic

P: So not only are you providing care because it’s your loved ones you’re caring for, as daughter or mother or whatever but also that you’re backed-up by care workers and people who visit you, or help you get out and about, with the person you’re caring for, to make that life as comfortable and able to live with that as possible. Now in a way I know we’re not there yet, and that’s partly what we want to create a national care service for. It goes back to your point right at the start Emma, about standards and qualities of the way we deliver care, which are good in parts around the country but I think could be good right across the country, and I think a national care service, that we’re debating could be a really major step forward to achieving that

H: Ok we’re nearly out of time but Emma, just before we go, what are the main things that Saga would like to see happen after this Green Paper? In the future –

E: Well the status of the carers improved and the quality of their lives improved, and we’ve got a charity whereby we send people on holiday, and if necessary we pay for the care fees, for looking after their loved ones to enable them to go on holiday. Now we can only do so much but we would like to see a lot more of this sort of care delivered

H: Yes

E: To make – to enable carers to get away for a few days, just so they become people again and they are incredibly grateful. So we think that respite care needs to be pretty far up the agenda

H: Yes ok. Thanks for that Emma. Final point from you for before we go? The Green Paper is out there, the consultations are coming in, you’re having all sorts of people coming back with their ideas –

P: Yes

H: What happens next, when are we going to see some of this actually on the ground?

P: Well it’s really important that people respond to the big care debate and do so by looking at the thing in the round and saying in principal, do we want to create a national care service? What should it look like? What should be the features of it? Do you agree with the way we describe the way we want the care system to actually work

H: Right

P: And then which of these funding options – and they’ve all got advantages and disadvantages

H: Yes

P: If it was easy we would have done it years ago! It’s not easy, it’s very complex. Which one will deal wit the unfairnesses in the system, which one will actually robustly deal with an ageing society where more people are living longer and fewer people are working age to pay for it? Which one do people think is the right way forward? And then once the consultation’s finished, and we’ve got till November 13^th so please submit your views and look at the thing in the round and give us your views, then after November 13^th the government has to by law publish a summary of the consultation responses. We will then publish a white paper we say we’ve listened to everybody, here’s our choice

H: Right

P: This is the one we’re going for and then to legislation. This won’t be overnight but we’re on a path and if we build a national consensus about all of this, then whatever the vaguer is of economic cycles and political changes, we’ve got a national care service that people want to have happen, and we’ll make happen for the future

H: Ok well it’s interesting stuff and let’s hope everything pans out for the future. Emma Soames, and Phil Hope thanks very much –

P: Thank you

H: For coming in and talking this through with us

E: Thank you Lis

H: And if you want any more information then you can go to the Saga website which is www.saga.co.uk and why not join the debate? Thanks very much for watching and we’ll see you next time. Bye bye

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