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TX: 06.02.04 NEW BILL TO HELP CARERS

PRESENTER: WINIFRED ROBINSON

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
In November we invited you to give us your policy proposals for an alternative Queen's Speech. One of your recommendations was better support for carers. Today a bill is going through Parliament which aims to provide that by ensuring that carers are given information about their rights and about training and work opportunities. It's a private members bill but it does have government support and so a good chance of making it into law. In a moment we'll be asking three You and Yours listeners who are carers how much difference it would make to them. First though, Dr Hywel Francis, the MP behind the Carers Equal Opportunities Bill.

FRANCIS
In talking to many carers I've found that very often they feel that they don't have a life beyond their responsibilities as carers. This bill gives them that equal opportunity to access education, training, leisure and employment opportunities. It'll place a duty on local authorities, social services and health bodies at a local level to ensure that when they're assessing the needs of carers they also make sure that they are given proper information about their benefit rights and about assisting them to live a fuller life.

ROBINSON
Dr Hywel Francis. And that bill's being debated in the Commons as we speak.

Three You and Yours listeners have also been scrutinising it and they are each full-time carers. Bunny Gilson, from Plymouth, has been a full-time carer for her two sons since they were born with muscular dystrophy. Daniel is now 19 and Luke is 17. Margaret Perman-Taylor from the Isle of Wight looks after her mother who's disabled with arthritis. And Adrian Dark from Peacehaven in East Sussex also looks after his disabled mother.

Adrian Dark, if I could start with you then, what do you make of this bill?

DARK
Well I'm actually very disappointed that there is nothing in the bill to enshrine more money for carers. I really thought when I heard sometime ago that something was in the pipeline to help carers that at least we'd start to be recognised for the value we put into society and the amount of money we save society. But there's nothing to say that we're going to get more money, the only way we're going to get it is if we go out and do work for it. So who's going to come in in my place and anyone that does come in is going to receive a sizeable amount of money per hour, rather more than the 47 pence an hour I get.

ROBINSON
Margaret Perman-Taylor.

PERMAN-TAYLOR
I agree with what Adrian's just said inasmuch as that I think this is a very admirable bill for the carers of this country and I'm sure it's going to be very welcomed. It actually mentions that the carers have saved the state 57 billion a year but it doesn't address the issue of the carers' allowance. In receiving that there was always the thought that upon reaching retirement age myself, in particular, then your circumstances would improve slightly upon receiving the state pension but that's not so. Apparently once you reach retirement age and start drawing your old age pension, even though you continue to be a carer, the government stops your carers' allowance.

ROBINSON
Bunny Gilson.

GILSON
We talk about the carers' allowance and all that, I've got the two boys and I can only claim for one. As I say if I employ people to come in they're getting a lot more money than I do and I'm there 24 hours a day. I don't think we should have legislation to get information. We should be given the information anyway. And as for going back to work, I chose to look after my two sons, I haven't got time to go to work. [Indistinct words] carers lead a more fulfilled life, well my life's pretty fulfilled looking after my two boys.

ROBINSON
Is there anything that any of you welcome in this legislation at all?

DARK
Well I would like to say that if it can be enshrined that learning opportunities are made available at a more reasonable time, that would be a good idea because where I live about every year we get a leaflet come through of what the local authority's offering in education opportunities and it's either early in the morning or late in the evening and for me afternoons would be a good time - and it's an absolute dead time, there's nothing doing.

PERMAN-TAYLOR
I think the bill overall is going to offer a lifeline particularly to younger carers, people who are just starting to care rather than pensionable age ones.

GILSON
It would be great from the beginning to get information from the start.

PERMAN-TAYLOR
Exactly, it's going to give a light at the end of the tunnel, you're not going to be doing this forever.

GILSON
It's too late for me because I found out all the information I need myself, either through the internet and then the authorities.

PERMAN-TAYLOR
It's then of course too late for me - I'm 60 and now retired.

ROBINSON
Let's Imelda Redmond into the discussion, she's the acting chief executive of Carers UK and the organisation is supporting this bill. Let's start with some of the points that were raised by Adrian Dark. The main problem for carers is lack of money and there's nothing in the bill that addresses that.

REDMOND
Adrian is absolutely right that one of the main issues that we hear about from carers all the time is about the low level of benefit and we know that carers often fall into financial hardship and poverty through their caring responsibilities. Unfortunately this bill could never deal with that - it's a private members bill and private members bills do not have the power to increase the expenditure on the Treasury. So although I agree with him 100% this was never the vehicle for that issue.

ROBINSON
And what about Margaret Perman-Taylor's point that many carers who are older find that they lose the carers' allowance if they draw state pension?

REDMOND
Again Margaret is absolutely right about this, this is the issue that we receive more letters on than any other, it's the issue that we have more callers to our helpline on than any other, that's an issue of increased cost and the Treasury would never wear a bill that had extra costs attached to it.

ROBINSON
So Dr Francis, in putting together this bill, had to bear in mind that there was nothing he could try to do that would be at the top of the priority list for carers?

REDMOND
He was very clear that what he wanted to do was deal with the top priorities that he could within the remit of a private members bill and that's why information is so key in this piece of legislation. We know that getting the right - as Bunny said - getting the right information, at the right time, makes a big difference between how people are able to cope. Lots of carers we hear have to - they spend years and years in this situation before they even know that they're carers and that there is support there to help them.

ROBINSON
And what about this unease - the feeling I suppose that emerged there that carers may be being shoehorned into jobs and they will end up paying people a great deal more than they have been paid to do their caring for them?

REDMOND
Well it's a very interesting issue. There are many people who would choose to stay at home and not go to work and look after their relatives and they really should not be disadvantaged financially. However, there are another big group of people who would wish to combine work and care and the employers that we're working with - and there are a number of large employers - are really keen to ensure that the carers in their workforce are enabled to stay at work and are not losing key staff who are very experienced because there aren't the proper services there to support the disabled person.

ROBINSON
Just before we leave it could we quickly go round the table and could I ask you for the single thing that would help you most if you were an MP and you were able to put in a private members bill - Bunny?

GILSON
I'm on duty 24 hours a day, seven days a week, absolutely no respite care available at all, in Plymouth, end of story, so I don't get any respite at all. So it would be nice if there was a lot more places for these people to go.

DARK
Well I would like to say that in the real world of course people do get paid a lot of money. I mean if I was running a rest home and I was looking after some other person's mother and even if I just had the one resident I could charge a considerable amount of money.

PERMAN-TAYLOR
Can I just mention that it doesn't only take a toll on our bank balances, it reduces the quality of our lives. I'm now beginning to wonder whether the government actually appreciates the commitment that a carer gives to the person they're caring for.

ROBINSON
Bunny Gilson, Margaret Perman-Taylor, Adrian Dark, thank you all, thanks too to Imelda Redmond from Carers UK.

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