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This hotline is only available Wednesday and Thursday between the hours of 10 to 12 or 2 to 4.
Sandra Gidley: In that case, the situation is even worse because I used a link from a Government website. I had assumed that the helpline had not been established so I was delighted to find what I thought was the official website. Perhaps the Minister who winds up the debate will tell us when the hotline is to be established and what service we will be getting for the £3 million that has been allocated, but clearly not yet spent.
As a society we have to start getting our heads around the problems and challenges. Caring is an emerging electoral issue. An ageing population means that 3 million extra carers will be needed by 2037, in addition to the 6 million at present. In many ways, the issue is hidden because carers do not have time to lobby.
Finally, I again plug the book, The Selfish Pigs Guide to Caring, by Hugh Marriott, which shows clearly that carers do not express their feelings because they risk appearing uncaring. We need to encourage honesty in the debate. In a survey, when people were asked which words best expressed the experience of being a carer, 74 per cent. said stressful and 71 per cent. said demanding. More heartening, 31 per cent. found caring rewarding and 20 per cent. found it fulfilling.
Ms Sally Keeble (Northampton, North) (Lab):
I will be brief, because I recognise that other people want to contribute to the debate. I welcome the debate and the
remarks made by the hon. Member for South-West Surrey (Mr. Hunt). Bureaucracy always needs to be simplified. However, to make that an end in itself is limiting. It is also true to say that the issue is partly about the nature of the society in which we live, the kind of society we want and the importance of supporting people so that they can look after their families in their own homes, which is obviously right. People will always look after their families, relatives and neighbours in quite remarkable circumstances. For generations, peoplean awful lot of them womenhave looked after their family members at great sacrifice to themselves. Part of the challenge faced by the Government is how to make sure that people are able to act as carers with dignity and support and without running themselves ragged in the process.
The Government have done a great deal in this respect and two areas have not been highlighted enough. First, there is the carers supplement to pension credit. That is enormously important because it deals with the anomaly that the hon. Member for Romsey (Sandra Gidley) pointed out in relation to people who, post-retirement, are suddenly deemed not to be carers any more and with the difficultly implicit in the carers benefit system, which is that carers are recompensed for lost wages. The carers supplement to pension credit has been under-recognised. I also suspect that the pressure in relation to pension credit and means-testing has discouraged retired people who are carers from recognising that this important element of support exists.
Secondly, there is the provision in the Pensions Bill for carer credits and for widening the scheme so that it is not linked just to certain restricted benefits. That will enable quite a number of people in my constituency, where there is a high level of participation in work, to feel a bit more confident about giving up full-time employment to take on caring responsibilities, without fearing that that will leave them without a pension in retirement. Those two points are important and are perhaps not sufficiently recognised.
I want to comment on two areas of caring. Last Friday, in preparation for carers week, I spent time with some carers. Two of them were caring for spouses who were in ill health and a number of issues were raised about what happens when peoples health fluctuates and the carer finds themselves falling in and out of recognised care. The other group of people who seem to have had little recognition and who do heroic work are grandparents who take on the care of their grandchildren. I spent some time with Tanya Kettleborough. She and her husband took on two granddaughters after the girls mother horrendously abused and then abandoned them. Those two girls had the emotional difficulties of being abused and abandoned, and one of the girls was also left with profound physical disabilities because of the level and nature of the abuse.
To an extent, the hon. Member for South-West Surrey was right: there is an issue about how much money carers get. In order to give her grandchildren a secure home, the grandmother had got a residence order, so she had forgone the opportunity of getting foster care payments, which would have given her an income of about £600 a week given the scale of the
disabilities of one of the children. Instead, she got payments of about £370 for two weeks. She thus gave up about half her possible income, yet she said that she would do that again because it was what she wanted to do for her grandchildren. The care that she gives is astonishing. I had met the little girl before and I am sure that she has made much more progress in a couple of years with her grandmother than she would have done in residential care, which would have been the alternative.
While the grandmother said that this was not about the money and that she would do the same thing again, then came the buts. She wanted a new buggy for Shannon, the little child, because the child had outgrown her existing buggy and all the thrashing about had weakened it, meaning that it was no longer safe. In addition, the buggy did not have proper straps for the little girl, so the grandmother had to get some on eBay. As we all know, there are long waits for wheelchairs and buggies for disabled children. I think that the lack of buggy was down to one of the health providers.
Padded walls were needed for the bedroom because the little girl would bang her head on the wall. Someone first said that they would pad all the wall and then that they would pad just around the bed. While that would be just about manageable, it had not been done. There was also no chair for the little girl, so she had to sit in her buggy indoors. While a chair had been loaned by social services, it was inappropriate and not big enough. A ramp was also needed to get the child out of the house in the buggy. That was down to the housing authority, although an occupational therapist was required to carry out an assessment and procure the ramp. The grandmothers real problems were not money, her ageshe was in her early-50s and had to give up work completely, although she had worked for her entire adult life, which obviously damaged her pension rightsher job security, or the fact that she was up all night with a little girl who could not sleep, but that she could not get the things that she needed, that there were waiting lists and that she did not know when the occupational therapist would come.
Mrs. Nadine Dorries (Mid-Bedfordshire) (Con): Does the hon. Lady agree that the story that she is articulately relaying is repeated by carers to Members in constituencies throughout the country over and over again? The problem for each family is usually not obtaining one particular piece of equipment, whether that is a bath hoist, proper padding for a bed, incontinence sheets, or the right chair, but that they cannot get three or four things. The problem continues over the years. How long will it take to get this right?
I think that the example that I am citing is especially poignant because of the nature of the family involved. The system must be able to adapt to the needs of many carers, especially those who are pitched into it, and to recognise that many small support systems are needed to make such care placements possible. It is important that local authority leaders in managing care are appointed and work effectively. Targets such as those on waiting times for operations should be extended to the time allowed for the provision of aids and adaptations. It is completely impossible to care at home for someone who has outgrown their wheelchair, or if aids and
adaptations are provided only after a persons physical condition has deteriorated to the extent that they can no longer be used. For example, I have a friend who received his hoists only after his condition had virtually reached the point at which he could not use them. There is an urgent need to recognise and address that situation. I put it to the hon. Member for South-West Surrey that those needs are every bit as pressing as, if not more pressing than, the need to deal with some of paperwork involving benefit claims.
Although the hon. Member for Romsey and others have raised this point, I wish to emphasise the situation for young carers. The website of the excellent young carers initiative shows that in the 2001 census, it was estimated that there were 5,016 carers aged five to seven providing one to nine hours of care a week, and that 943 of those carers provided 50 hours or more of care a week. Those astonishing statistics obviously have implications for every agency. I should also point out that a number of those children are bullied, and there is a real need for schools to consider the emotional support that those children need in order to cope with their difficult situation.
I simply echo the comments made by other hon. Members about the outstanding support that carers provide; in many ways they are the unsung heroes and heroines of the care world. In her response, I hope that the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Stirling (Mrs. McGuire), will set out exactly how the Government will meet the challenges of upgrading support for carers.
Jeremy Wright (Rugby and Kenilworth) (Con): It is a pleasure to follow the hon. Member for Northampton, North (Ms Keeble), because I want to concentrate on people at the opposite end of the age spectrum to those whom she was talking about when she left off her remarks. I shall talk a little about older carers. As we have heard, there are about 6 million carers in the UK, and about a quarter of them are over 65. It is a staggering statistic that 8,000 of them are over 90; I find that remarkable.
Older carers face particular problems, some of which are obvious, and others of which are less obvious. Among the more obvious problems that they face, particularly if they are caring for someone with a physical disability, is the difficulty of managing the physical lifting as they become older. Secondly, older carers may have difficulties with fatigue, which begins to set in more easily, and becomes more difficult to recover from. Thirdly, other hon. Members have mentioned medical conditions, which often afflict the carers themselves; that problem is exacerbated among older carers. Less obvious are the financial problems, although they too have been mentioned, not least by the hon. Member for Northampton, North.
On the finances of older carers, there is no doubt that the carers allowance is, understandably, regarded as an income replacement measure, but when a person retires, they may lose that income, because it is offset against pension payments. An extra difficulty is that some carers have been forced to retire or stop working earlier than they otherwise would have done, so their pension payments are reduced and their pension
income is therefore smaller. As others have said, it is still too complicated for people to get what is available. The carers addition to the pension credit is not claimed by 63,000 carers who are entitled to it. That figure is too large. Older carers are the very people who are put off by the vast amount of paperwork, referred to by my hon. Friend the Member for South-West Surrey (Mr. Hunt), that must be completed if they are to obtain that income.
Older carers are also put off by the need to ask for helpa point that the hon. Member for Angus (Mr. Weir) made. It is important to remember that when we are dealing with the over-65s, we are dealing with a proud generation. They do not enjoy asking for help. They have the admirable but completely counter-productive attitude that it is up to them, not the state, to look after their loved ones, so they do not claim helpboth with regard to respite and with regard to financial assistancewhen they should. The difficulty that the Government, and indeed any Government, face is that they must identify carers who do not identify themselves as being in need of help, and must none the less provide that help to them.
In providing that help, carers relationship with the agencies that ought to be in partnership with them to help provide care is crucial. It is important, particularly for older carers, that their relationship with social services departments is good, productive and a genuine partnership, but too often that is not the case, as the Under-Secretary of State for Health, the hon. Member for Bury, South (Mr. Lewis), has said. A good relationship with the social services department means that an older carer is more likely to ask for help when it is needed. A bad relationship means that it is less likely that that help can be asked for, and that may be because many older carers fear that if they go to social services and ask for help, they will be judged incapable of looking after their loved one, who will be taken into residential care against their wishes and the wishes of the carer. That must be addressed. The Minister himself said that far too often carers believe they have to shout loudly to obtain the services that their loved ones need. He is entirely right, and it is perhaps the most significant problem that many carers face and which they often identify. It is particularly acute among older carers. Far too often, the services that are available to carers and the people for whom they care are arranged for the convenience of the provider, not for the convenience and use of the person who utilises them. Surely, the assumption should be that it is the carer, who knows the individual best, who knows best, not that it is the state that knows best.
Most people, as we all agree in this debate, would prefer their care to be delivered at home, in an environment with which they are comfortable and familiar. If that is to be achieved, we must all assist carers to deliver that care. Again, as we all agree, in future there will be many, many older carers, partly because of longer lifetimes, but partly because of other demographic changes. Indeed, it is far from inconceivable that someone looking after an aged parent is well past retirement age, so there is a whole new dimension to older carers needs and responsibilities that we must address.
I agree entirely that supporting carers is not just the right and decent thing to do but is economically prudent. If people providing care on a voluntary basis do not
continue to do so, it is simply unsustainable for the taxpayer to pick up the entire burden. I hope very much that the Government and, indeed, any Government will continue to give older carers particular consideration in making their judgments.
I should like to make one point, which is inspired by regular visits to the House over the past two years by the members of the west Kent branch of the Alzheimers Society. A powerful point that emerges from talking to them is that the society is there to help the carers of suffers of that terrible disease as much as those who have the disease. That points to a wider lesson: when the drugs and treatment that can alleviate the effects of diseases are considered by the National Institute for Health and Clinical Excellence, the guidelines that it is obliged to follow focus narrowly on the effect on the patient, the health service and personal services, but the effects on carers are left out completely. I do not blame NICE for thatthat is the nature of the standing orders from the Secretary of State under which it operatesbut it is possible, particularly when considering Alzheimers disease, that when NICE clinically evaluates a new generation of drugs and concludes that a certain drug is not sufficiently effective to be prescribed, if the effect on carers were allowed to be taken into account, a different result would come about. The Alzheimers Society estimates that the new generation of drugs can save an hour a day of carers time. That may not seem to be terribly much, but as the drugs cost £2.50 a day, even if carers were paid the minimum wage, the drugs would pay for themselves twice over if NICE were allowed to take into account the effect on carers.
I hope that when the Under-Secretary of State for Work and Pensions, the hon. Member for Stirling (Mrs. McGuire), replies she will comment on whether the Government are prepared to relax and change the conditions under which NICE operates to allow it to take into account the effects on carers. That is not necessarily a recipe for increasing expenditure but for a prioritisation of Government expenditure to reflect the true effect on people with diseases and those who look after them.
Tim Loughton (East Worthing and Shoreham) (Con): The debate has been short, but concise and of high quality. It is a shame that more of the hon. Members who were present earlier for the Iraq debate were not in the Chamber to listen to the excellent representations that have been made. We are debating not an instant, but an ongoing experience for many millions of our constituents.
The hon. Member for Northampton, North (Ms Keeble) made a good point when she reinforced the consensus against bureaucracy and flagged up the caring responsibilities of many grandparents. My hon.
Friend the Member for Rugby and Kenilworth (Jeremy Wright) made a powerful demographic point about the ageing population. Representing a constituency such as Worthing, I know about old carers, many of them well into their seventies, if not more, looking after even older charges. My hon. Friend the Member for Tunbridge Wells (Greg Clark) made a pertinent point about the particular challenges facing Alzheimers sufferers. As somebody who has a large Alzheimers Society branch in my constituency, I applaud the excellent support that it provides to carers. We have people in their mid-thirties now with Alzheimersnot only are instances of the disease increasing, but it is affecting younger people.
I will not repeat the comments that have been made about the number of carers6 million, or one in 10 adultsor the cost to the state that is being saved. Some 20 per cent. of young carers look after parents or family members with a mental health problem. We are discussing not just physical disabilities. I shall focus my comments on young carers, because we have so far talked mostly about older carers. I welcome the legislation that has been introduced over recent years, and some of the Governments strategy, but still too many young carers tell us that they are not getting the help and support that they needan awful lot of warm words, but not enough firm action.
Surely our responsibility as parliamentarians and the responsibility of the Government should be to do everything we can to remove the obstacles to caring and to make the job of carers much easier because they do the nation an enormous service. We need to make their access and entitlement to information much easier so that they do not have to spend so much of their time hunting for it. We must make the paperwork simpler and shorter. My hon. Friend the Member for South-West Surrey (Mr. Hunt) cited horrendous figures to illustrate the complexities of the benefits system.
We must increase the availability of respite care and offer flexible respite care that can also be provided in the homes of the people being cared for. It is not just a question of sending somebody to a residential home. A little break can give a big boost to carers who have onerous responsibilities day in, day out. Above all, we must recognise and value the contributions of carers and provide flexibility. Caring is not a constantthe condition of a person who has a disability can go up and down so we need long-term and sustainable strategies. That is why, at the last election, we had in our manifesto certain commitments that would recognise the vital role played by informal carers.
I said that I would concentrate on the role of the 175,000 young carers2 per cent. of children overall, including 18,000 children under the age of 15. That was starkly brought home last month when the Princess Royal Trust for Carers raised the case of Deanne Asamoah, the 13-year-old who died from a morphine overdose after caring for her terminally ill mother for four years, and the pressures of caring that brought her to that tragic end to her own life. Some 250,000 children in the United Kingdom live with a parent who engages in some form of substance misuse, and they often end up as carers as well.
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