Mrs. Jackie Lawrence (Preseli Pembrokeshire): I am delighted to have the opportunity to introduce the debate on support for carers. I intend to outline some of the difficulties that carers face in their duties. I shall focus on three particular areas: children who need care, hidden carersplacing emphasis on young carersand the health needs of carers. I acknowledge the moves that have been taken to support them, but I am sure that it will come as no surprise to the Minister that I shall be pressing her for more to be done on their behalf.
I have personal experience as a former foster carer for a local authority. I also cared for my mother during her terminal illness. I recognise the number of people who, at some time in their lives, will inevitably face caring responsibilities. It is a great pleasure to hold the debate in the middle of carers' week, an event that is especially important as it will highlight the difficulties faced by carers throughout the United Kingdom. It came into being through co-operation between several organisations that represent carers and which were anxious to highlight the difficulties they face. The organisations wanted to emphasise the contribution that carers make not only to the people for whom they care, but to society as a whole.
The organisations were Carers National Association, Contact a Family, CrossroadsCaring for Carers, and the Princess Royal Trust for Carers. The week's activities are supported by the National Lottery Charities Board. The entire week will be devoted to highlighting the needs of carers, as well as celebrating and thanking them for their work. The organisations that are involved in carers' week highlight the fact that carers come in many and varied forms. They range from young carers under 18 years of age who care for a family member to people in their 70s, 80s and even 90s who care for a friend or a spouse. There are many other variations of carers, including, of course, parents who care for disabled children. I shall refer in detail to that group of carers later.
I am delighted that my hon. Friend the Member for Cardiff, North (Julie Morgan) is present. She has expertise in the work of carers, having been responsible for Barnardos in Wales before becoming a Member of Parliament. I am sure that everyone recognises the work of Barnardos in providing valuable respite care for families with severely disabled children.
Despite the variation in age and other factors, the definition of a carer is now widely accepted. It is a person who, without payment, provides help and support to a friend, neighbour or relative who could not manage otherwise because of frailty, illness or disability. Who are carers? Some facts and statistics from the 1995 general household survey give an insight into the wide
Carers can be of any age or gender and from all communities. Invariably, because of their caring duties, their lives are restricted. We are here today to debate support to ease those restrictions. It is perhaps not always recognised that men are almost as likely to care as women42 per cent. of men compared with 58 per cent. of women. Despite the examples at either end of the spectrum, carers are most likely to be aged between 45 and 64 years. Half of all carers look after someone over the age of 75, a situation that will increase with an ageing UK population. Almost 1 million carers care for more than 50 hours a week, a fact that should, perhaps, be viewed alongside recent improvements made in the workplace. The European Union working time directive has given people a choice about the number of hours a week that they work. Figures show that a significant number of carers work well beyond the stipulations of the directive.
More than 2.5 million carers juggle care with paid work. A survey of carers showed that 50 per cent. had given up work to care. That is another important aspect that relates to support, for two reasons. First, we must enable carers to maintain their income. Evidence shows that financial stress is a major problem for many carers. Secondly, we must prevent isolation, another problem that carers have identified. Keeping contact with the workplace is important.
I remind the Minister that, in a speech in London on pensions on 5 February 2002, my right hon. Friend the Secretary of State for Work and Pensions said that too many people leaving the labour market do so not because they want to but because they feel that they have no choice. Many cannot afford to do so. It would be interesting to know how many leave their jobs because of caring responsibilities. Is any research being done on that, especially in light of the carer survey sample that I cited previously, in which 50 per cent. of carers surveyed gave up work to care?
The Government's family-friendly work strategy that has been implemented since 1997 is helping carers in a way that has not existed before. It is important that the situation is continually reviewed and that every possible help continues to be given to support carers in the workplace.
Surveys of carers have common themes. They all show that carers often suffer from financial worries; emotional stress; physical demands; isolation; loneliness; and, regrettably, still, despite the acknowledged efforts of recent years by the Government, lack of information and support.
Carers' needs are varied, and support for those needs must be equally wide-ranging. However, I shall take up the three aspects of caring to which I referred earlier. The first is children who need care. Three per cent. of children under 19 have a disability and need care. About 95 per cent. of those are cared for at home by a parent. That is an estimated 1 million parent carers, whose plight I shall examine in a little more detail.
There are more than 325,000 disabled children in the UK. Caring for a disabled child presents parents with challenges that are different from bringing up a child who does not have a disability. It can also have a dramatic impact on other, non-disabled children in the family.
Surveys have shown that more than half of households with a disabled child lack some of life's basic necessities because they cannot afford them. Three quarters of families with a disabled child live in an unsuitable home. There are few specialist nurseries or child minders with accessible premises. Training needs are involved, to enable parents to work. No assistance is provided for families towards the cost of visiting a disabled child in hospital.
Contact a Family offers parents of disabled children access to good-quality advice and information and contact with other families in similar circumstances for mutual support. It also provides training for parents of disabled children, such as in how to lift and care for a growing child. Obviously, such training can help to avoid health problems for carers. Will the Government consider making access to such training a statutory entitlement, perhaps through the education budget, in the same way as, for example, basic literacy and numeracy training is free for adults?
I am also aware from my constituency casework of the many different stresses and strains that are placed on families with disabled children, who must often wait for assessments to be carried out. Delays are often caused by a shortage of certain professionals, such as speech therapists. Such delays can impact on their child's ability to stay in mainstream education, which in the long term is to the child's detriment. Other delays, whether relating to adaptations to the home or supply of necessary equipment, also impact on families unnecessarily. What further practical steps does the Minister feel can be taken to minimise delays to families in obtaining such necessary help?
Secondly, one of the most disturbing facts identified in research by carers' organisations is the number of hidden carers. They are people who care for another person but do not identify themselves as carers. They might be frightened of a perceived stigma or be simply unaware of the importance of their role. Either way, it means that many people who undertake a caring role fail to gain the available help and support that could improve the quality of their lives and the lives of those for whom they care.
There are an estimated 51,000 young carers aged under 18 who are part of the group of hidden carers. It is important to identify those young people and to give them help in their caring roles. Their roles are often recognised only when they are absent from, or have problems in, school. A closer examination of the widely publicised case of the mother who was jailed for her daughter's truancy from school revealed that two hidden carers were involved, which demonstrates the problems.
There are several projects, drop-in centres and websites specifically for young carers but, unfortunately, the Government's guidance to schools to be alert and sensitive to the needs of young carers does not seem to have been adopted by all schools and education welfare services. I understand that a young carers information pack that has been designed by the Carers National Association is available through the Department for Education and Skills. Will the Minister confirm whether that pack has been distributed to all schools? I understand also that officials from the Department of Health and the Department for Education and Skills met earlier this year to consider support for young carers projects and the production of quality standards for young carers' support. What was the outcome of those meetings?
Carers UK should be congratulated on two leaflets that it produced specifically for carers' week. The first gives information to carers on the help that is available, and the other is designed to help general practitioners to identify their patients who have caring responsibility but might not readily realise their role.
Thirdly, I turn to health needs of carers. The Princess Royal Trust for Carers published information at the end of last year showing that 23 per cent. of the carers it surveyed had suffered deteriorating health since taking on caring duties. The figure was 35 per cent. for carers who had cared for 10 years or more. Carers UK has conducted work on carers' health. It found that half all carers have sustained a physical injury since becoming a carer and that half have suffered a stress-related disorder.
Surveys undertaken by Crossroads show that a regular break can make all the difference to carers and will enable them to maintain their own health and well-being. A break from caring is invaluable in reducing the psychological and emotional stress that many carers face.
One of my constituents is a mother whose severely disabled teenage child has been allocated one overnight stay a fortnight in a respite care facility. That break has made a tremendous difference to the family. However, it should not have required a letter to the local newspaper and contact with the family's local Member of Parliament to achieve that.
Clearly, the £140 million carers special grant that was announced last year for respite care will be a substantial help. Will the Minister say whether the situation is being monitored? What further moves are being made to examine carers' health needs overall?
We have a different situation in Wales. It is the Assembly's responsibility to deal with the practicalities of grants for carers. However, I shall mention one of the worries of Pembrokeshire Crossroads, which is in my constituency. It wants to ensure that carers' special grant money that is given to Wales by the United Kingdom Government is not rolled up by the Assembly into the general rate support grant after 2004. Although clearly the Assembly must decide how to handle the funds, I hope that it will listen to the views of carers' organisations in Wales before making its decision.
From the information that I have gathered about carers, it is apparent that the caring role arises out of a relationship. Practical caring is usually an extension of emotional caring, whether as a parent for a child, a child for a parent, a neighbour for a neighbour or a spouse for a spouse. Caring arises out of human relationships, which are above economics. However, we cannot ignore that, on a financial level, the work and commitment of carers saves the United Kingdom vast amounts. Figures published on 2 May 2002 by Carers UK show that carers save the state about £57 billion a yearthe total annual cost of the national health service.
It has also been shown that 77 per cent. of carers providing substantial care are financially worse off. The Government have now announced changes to invalid care allowance that will benefit many carers and will come into operation in October this year. They have also listened to the requests of carers for ICA to be paid for eight weeks following the death of the cared-for person, which reduces stress at an emotional time. Carers' organisations welcome these changes.
Whatever ICA is called, it has always meant a loss of earnings benefit. Many carers would wish me to raise that problem. Given the massive financial and social contribution that carers make, it is time that the Government considered making carers' allowance a benefit that recognises the extra costs of caring rather than being a simple loss of earnings benefit. That would eradicate the many problems caused by overlapping benefits, which cause carers tremendous frustration. Significant cost implications would obviously be involved in any such change, but viewed against the straightforward financial value of carers' work to society as a whole, the sum would be well spent. I would welcome the Minister's response to that point.
Another worry for many carers occurs when the person being cared for moves into a residential home, and the carers find themselves without security of tenure. During the passage of the Health and Social Care Act 2001, the Government gave a commitment to review the need for a mandatory property disregard when former carers continued to live in the properties of individuals permanently admitted to residential care. At that time, the signs were that progress could be made only if resources became available. Will the Minister update hon. Members on that commitment?
In its document "Caring on the Breadline", Carers UK identifies another disturbing factit is estimated that one third of carers in receipt of income support are cutting back on food to make ends meet. That is entirely unsatisfactory and is bound to have an impact on a carer's health. The same research found that nearly eight
The carers and caring organisations that I spoke to all acknowledged the significant work done so far by the Government through the national strategy for carers. However, it is clear that, as the Government have said on many occasions, while much has been done, there is much more to do. I hope that the Minister will continue to stress that point, especially to her colleagues in the Department for Work and Pensions, with regard to incomes for carers. Every year, more than 3,000 people become carers, which is testimony to the continual need to monitor and review support for carers. As I said, the estimated financial benefit to society offered by carers equates to the entire annual cost of the NHS. That should be kept continually in mind. It is important that the amount is quantified, if only to show how public expenditure on care would increase if a tiny percentage of carers stopped providing support for any reason.
There are 14,688 identified carers in Pembrokeshire, and 376,000 throughout Wales. If only 10 per cent. of carers in my county alone could no longer carry on, 1,500 people would become totally dependent on the NHS and the local social services department. It is not difficult to understand the impact that there would be on public spending if that pattern were repeated across the UK.
Although a health Minister is present, I hope that she will accept that many of the issues under debate apply equally to other Departments, and I hope also that she will give an undertaking to discuss them with her colleagues. The Government have so far listened to what carers need and have implemented several of the requests that have been highlighted. However, with an ageing population in the UK, there will inevitably be more demands on carers, and those demands must be matched by continued government commitment and action. That action has been forthcoming, but as someone once famously said on another issue, such actions should be a process and not an event. It would be welcome if the Minister acknowledged that.
Mr. John Randall (Uxbridge): I congratulate the hon. Member for Preseli Pembrokeshire (Mrs. Lawrence), not only on obtaining the debate and on her timingit is national carers' weekbut on how she presented her arguments. In many ways, she has said everything that can be said on the subject.
I, too, thank carers throughout the country for their dedication to a job that they have taken upon themselves voluntarily. We all know from personal experience of people who have devoted themselves to the care of another person, whether elderly or young. It is easy to pay lip service when thanking people for that work, and we must ensure that we do more than that.
The hon. Lady mentioned many of the issues that strike one immediately, such as the need for respite care. Looking after someone with the dedication of carers is time consuming, emotionally draining and physically difficult. Many people have back trouble, for example, as a result of having to lift someone for whom they care who is not able to help to move themselves. Sadly, that often means that the carer soon becomes ill or disabled. It is not unknown for the carer to pass away before the person that they are looking after, such is the strain put upon them.
There is also the question of isolation. It is difficult for people who devote themselves to looking after someone full time to get out and about. The hon. Lady mentioned Crossroads, which does a superb job, as do organisations like it. However, that job cannot be left purely to some of the voluntary agencies. There must be more help, to enable carers to live as full a life as possible. Sometimes, they do not ask for it. but it is always vital.
Most hon. Members will have experience of something else that concerns me; the early release of patientsespecially the elderlyfrom hospitals. It seems that hospitals operate like conveyor belts; they have to make room, because beds are needed. Therefore, patients are sent home when proper care is not readily available for them there. That puts great pressure on people such as elderly partners. We must always be looking into that.
Many hon. Members wish to speak, so I will conclude. I offer heartfelt thanks to all the people who do the hard and dedicated work of the carer. It is not easy work, and although we all hope that we would be able to do it, we will be unsure whether we have the necessary backbone until the situation arises for us. It is easy for us to pay tribute to people in the House of Commons, and we often do that. However, we must ensure that that is not merely lip service; we must thank carers for the work that they do, but we must also act to ensure that their lot is improved.
Mr. David Lepper (Brighton, Pavilion): I add to the congratulations that have been offered to my hon. Friend the Member for Preseli Pembrokeshire (Mrs. Lawrence) on securing the debate. I am sure that the Minister has noted that many hon. Members of all parties are present and hope to take part in it, and that, at the last count, more than 180 hon. Members had signed the early-day motion which is in my nameand in the names of other hon. Members who are presentin support of carers' week. These facts show that hon. Members are very concerned about the plight of carers; they appreciate the value of the work that they do, and they understand that they need additional support. I also congratulate all those who work with the voluntary organisations that have organised carers' week; it enables us to focus on and celebrate the work of carers, and to recognise their continuing needs.
The isolation that is felt by those who care for others has been mentioned, so I also especially welcome Carers UK's recently launched carers' online website. It is intended to develop it to become one of the tools that enable carers to overcome a sense of isolation, by the provision in their homes of information about their rights, and the benefits and services that are available to them, and of news that is of interest to them. Eventually, the website is intended also to enable carers to contribute to the debate about policy development, and for it to become a truly interactive service, so that it operates as a sort of virtual community of carers. As has been said, they often feel isolated from the real communities in which they live.
One of the aims of carers' week is to highlight the hidden carersthose who not only work in isolation in their own homes looking after relatives or friends, but who often do not think of themselves as carers, and therefore do not claim the benefits that are available to them, or ask for support. Perhaps they would do so, if they knew where to find them.
In the area that I representthe city of Brighton and Hovethere will be several events this week, including one on Saturday that is being organised by our own carers' centre. It will bring together several organisations that work in our local community. I pay tribute not only to the organisations involved in organising carers' week, but to many others, and particularly the Alzheimer's Society, with which I have been connected. It is only in recent years that the full impact of dementia on family life and the need for support for those caring for dementia sufferers have been recognised.
I welcome the moves that the Government have made since 1997 to recognise the needs of carers. For the first time, we have a national carers strategy. Improvements have been made to the invalid care allowance, there is the carers grant and there will soon be the second state pension, a scheme that will provide support that has previously been missing to carers who have been unable to obtain their full pension entitlements on retirement because they left work early to take on caring responsibilities.
Many hon. Members would welcome some reassurance from the Minister about the future of the carers grant beyond 2004. We would also welcome some indication of how the Government will ensure that carers who are entitled to the second state pension but who might not claim it know that they can. What will the Government do to reach out to those people?
I also ask that the Government give some attention, although the matter does not lie within their responsibility, to the importance of paid care workers in providing respite for carers. Many organisations need such care workers to provide that respite and they are a vital group, whose pay is shockingly and scandalously low, especially for those who work through private agencies. As they have to pay their own travel costs, they often earn less than the national minimum wage.
I shall highlight one aspect of the work that is done in my constituency. I have mentioned our carers' centre, which brings together several organisations working with carers, including CrossroadsCaring for Carers. One of its most successful projects during the past few years has been its young carers project. My hon. Friend
The young carers project in Brighton and Hove works with youngsters between five and 18 years of age. It is currently working with 110 young people. Over four years it has worked with 250 such youngsters, and 50 per cent. of them have been of primary school agechildren under the age of 11 who have a caring responsibility in their family. In our city, in a third of families dependent on young carers at least one of the parents has mental health problems, adding to the burdens faced by these youngsters.
The young carers project provides support for those carers in their homes. It works in our local schools to raise awareness of the importance of young carers and their needs. It works with teenagers, bringing them together for social activities that they might otherwise not have the opportunity to take part in because they are stuck in their home with a responsibility that they face day in, day out.
The project is working in many ways to overcome young carers' sense of isolation and to ensure that they do not miss out in terms of academic attainment and social accomplishments. I am sure that anything that the Minister can say to assure hon. Members that the Government are aware of the needs of young carers and the need to provide them with extra support would be welcomed.
The local chairman of Crossroads in my constituency points out that every Crossroads scheme that must be registered faces a 29-page registration document requiring a range of information not only about those working for the organisation but about its trustees. Often, documents such as passports and birth certificates are required, which he says adds to the bureaucracy faced by those organisations. We must be scrupulous in ensuring that the people who work for organisations such as Crossroads are able to go into other people's homes to help. I ask the Minister to consider the registration requirements again, and whether anything can be done to streamline them.
From personal experience within my family and as a social worker, I know of the dedication of carers. It seems sometimes that the last people whom carers care about are themselves, and that they come at the end of the queue. We know of the long hours that carers put into their work. The requirement for invalid care allowance is that care should be substantial and regular, which is usually defined as 35 hours a week. When I say that, I hear hollow laughter the length and breadth of the United Kingdom, because 35 hours a week would be a lovely treat.
The value of carers should not be in dispute. What is lacking is sufficient support, proper services and, importantly this week, an organised opportunity for carers to contribute to the community and have that contribution recognised. From the documents that I have read in preparation for the debate, I have been impressed by the number of hours that carers put in by volunteering for community activities.
Recently, carers in my constituency and that of my hon. Friend the Member for Meirionnydd Nant Conwy (Mr. Llwyd) held consultation days. The concerns raised were familiar and depressing, but constructive. They discussed benefits and noted difficulties in claiming disability living allowance and attendance allowance, including the formidable size of the application forms. They noted that invalid care allowance stopped at pension age, although the care role increased. I have had recent dealings with the West family in my constituency, who have cared for their daughter over a long period and now face difficulties as she turns 18. They will almost certainly face a cut in benefits after leaving work to give a large amount of selfless care.
In Wales, health is a matter for the National Assembly, but the carers in Meirionnydd Nant Conwy and Caernarfon noted concerns throughout the UK, such as the lack of communication between hospitals, carers and day-care facilities on such basic matters as medication. They noted difficulties in the standard of care, such as the feeding of people with Alzheimer's, a lack of back-up staff in, for example, the memory group, difficulties connected with bathing in day hospitals and the intense transport difficulty that is significant in much of rural Wales. People are often taken to day care via several other communities and spend long periods in cars and vans. I will not go into detail about these problems, but they are avoidable and should be sorted out. They would be sorted out if we valued carers more than we do.
Mindful of the number of hon. Members who want to speak, my next point shall be my last. It is about language, which is something especially significant in Wales but also relevant elsewhere. It is essential that services fit the carer, rather than the carer fitting services. In Wales and elsewhere, that entails a choice of the language in which services are delivered. I would be interested to hear the Minister speak about the development of services in languages other than English throughout the UK.
The Welsh Language Act 1993 has gone some way to securing the availability of services in Welsh and English on the basis of equality, but much more needs to be done. Certainly, we do not provide services in languages other than English and Welsh, so we have some way to go when providing highly personal services in discussing people's deep problem. We must normalise proper, diverse linguistic provision throughout the UK. We must normalise the service, rather than the carer's place in it. The service must change, and language choice must be institutionalised. A manual called "They all speak English anyway" contains five principles relating to language and social work. The first is that language choice should lie with the user, not the provider, and I commend that principle.
Laura Moffatt (Crawley): I am delighted to be called in this important debate, which gives hon. Members an opportunity to pay tribute to those who act as carers, day in, day out. It is important that those of us with no experience of such things recognise their contribution.
Many hon. Members have spent time with carers in their constituencies in the past few days, and this is a time to celebrate being a carer. I had a fantastic opportunity on Friday to spend time with members of the Crawley carers' social club. They do not feel down-trodden or put upon, but they share a collective interest. Many hon. Members have talked about isolation, but such groups diminish isolation enormously. On Friday, we had lots of laughs, ate fish and chips and drank wine.
We also discussed issues related to caring. Members of the Crawley group said that we should not think of them as down-trodden, or assume that their lives are thoroughly miserable, even though caring is difficult and frustrating. One of them, Mrs. Kidd, told me some funny stories. She said that she had cooked some steak for her husband, who suffers from dementia. She went out, and when she returned the steak had gone. Her husband had thrown it in the bin, because he did not fancy it. They had to have chips and peas because that was all that was left, but Mrs. Kidd laughed about it. She told me also how difficult caring was and about how she had to sleep by the front door, because she was afraid that her husband would walk out of the house.
Each member of the group had similar experiences, and another carer, Rose, told me about caring for her mother and husband. The person who gets the group together, Yvonne Morris, cares for her mother and for a child with severe learning disabilities, but she makes time to go on day trips, and ensures that she is part of the community. She did not have the sense that things were wrong. The Crawley group shows how information is shared, that people can understand issues, and how isolated people get to know about the many advances that have taken place. There is no doubt about that.
The Government's carers strategy was an important step in ensuring that carers are properly recognised for their work, and it has made a massive contribution alongside the other carers package. Of course, carers still face enormous difficulties, and they feel strongly about financial insecurity. Why should they be disadvantaged because of their position as carers?
We have heard much today about the money that the state would lose if it had to care for people who are looked after by carers. The reality is, however, that carers will not walk away. That is not a primary argument for supporting carers. We support them because they want to do the job properly. They all want to hold up their heads and say, "I am doing this job because I want to do it, and I want to do it well." The Government's role, in which the House of Commons must play a proper part, is to ensure that that happens.
We have heard that early discharge can cause difficulties, but a proper discharge plan could deal with that problem. I should be surprised if anyone in a ward would say, "I am sorry, but you have got to have your carer back home because we cannot cope here." To me, as an ex-nurse, that would be unforgivable, and greater account should be taken of that. When carers eventually
Like other hon. Members, I was glancing at information for today's debate. The Department of Health carers website, which was both interesting and helpful, highlighted some of the things that are happening. I noticed that my right hon. Friend the Prime Minister had written an introduction, and I am sure that not many of us would disagree with it. He wrote:
Norman Lamb (North Norfolk): First, I pay tribute to the hon. Member for Preseli Pembrokeshire (Mrs. Lawrence) for securing this debate. It is important, this week especially, to draw attention to the situation of carers.
Lorna Fish and Brenda Howlett, two hands-on carers, together set up a campaign called "A better share for those who care". They say that carers are the backbone of the nation's care structure and that many carers feel undervalued and, to some extent, exploited. I hope that everyone would agree with the Prime Minister's comments on the Department of Health website, but we do not yet provide adequate support. These women make two key pointsfirst, that carers need improved financial support; secondly, that improvements need to be made to the infrastructure of support services.
On finance, they make the obvious point that any of us could face having to give up a well-paid job in order to care for a relative. At that point, one's income plummets and, as other hon. Members have said, one is left in the invidious position of having to work very long hours in order to care for a loved one. A good case can be made for a thorough review of the financial structure of support for carers.
They make a case for improving the infrastructure of support. My experience is of a rural area, and other hon. Members have spoken about isolation, saying that carers can be stuck completely on their own in a community but with no access to guidance, support or help on the services that may be available to them. Brenda Howlett told me that she had to fight for two and a half years to get two nights' care a week for her father-in-law. In order to look after him, she has to live separately from her husband for most of the week . That situation has alerted me to the fact that it is the articulate, those who know how to fight the system, who get the support that they need. What about the others who do not have those attributes? They are left sinking on their own, often suffering ill health, as we have heard.
I am concerned about the carers of children and teenagers. I have come across some tragic cases of parents looking after autistic children and children with Asperger's syndrome. They are totally frustrated and in despair that the authorities and agencies push them from pillar to post. There is no co-operation between agencies. When they try to arrange education for someone with autism, they find that the health service will not talk to the education departmentthere is no joined-up thinking about how to provide a proper package of support for children who are being looked after by parents who are often in absolute despair.
Finally, I reiterate the point about the pay levels for paid carers. Norfolk county council is proposing an effective pay cut for the care workers that it employs by cutting their pay for unsocial hours. That is being proposed to a group of already very low-paid workers. That is how we treat people who are caring for others in the community. The attitude of authority and of society has to change. This week is especially important in terms of drawing attention to the needs of carers. I hope that it will lead to action from Government; it is much needed.
Julie Morgan (Cardiff, North): I add my congratulations to my hon. Friend the Member for Preseli Pembrokeshire (Mrs. Lawrence) on having secured the debate and on her comprehensive coverage of most of the issues that we want to address.
I am particularly pleased to speak because, as my hon. Friend said, before I came to the House of Commons I was an assistant director for Barnardos and was involved in setting up schemes to provide respite care for disabled children throughout Wales, and support schemes for young carers. Thus, in my previous professional life, I had a lot of experience with carers.
I am also a carerI look after my mother, who was severely disabled by a stroke two years ago. Since that happened, I have become so well aware of the vast number of peoplemen and women, as has been stressedwho care for relatives or friends in their own homes and who do not always recognise themselves as carers. They are doing a tremendous job and make a huge contribution to society.
I, too, want to mention paid carers. It is important to recognise what a skilled job they do. Consider what they do when they come into a home, often entering a difficult and sensitive situation. They might spend the night caring for a member of the family and acting in a way that could require years of trainingyet we know that many of them have not had such training; they have learned on the job and are not paid the rates that they deserve. My hon. Friend the Member for Brighton, Pavilion (Mr. Lepper) and others have made that point strongly, and I want to stress it. We must value the paid carers who come in to help the carers. It is often only because of people like that that carers, who otherwise suffer broken sleep, getting up two or three times a night, are able to keep going. The health needs of carers, as my hon. Friend the Member for Preseli Pembrokeshire said, is an important area to consider. In this carers' week, it is important to emphasise the sensitive way in which many paid carers work to help carers.
I shall refer briefly to young carers. The Government have started to address the problems in that area, as have the Administration in Wales in the Welsh carers' strategy. Youth is an important time in the lives of young carers. I am sure that many hon. Members have seen the look in the eyes of young carers whose parents are suffering from alcoholism, when they are waiting to see in what state they will come home at any hour of the day or night. I have seen that wary look. We must recognise that those events are happening at a time when that child or young person is developing and should be having a good time, enjoying social activities and developing their school work. Many young people are missing out on that or doing it halfway, because at the back of their minds they are worrying about their parent, who may have any of a range of disabilities. I have worked with children whose parents have mental health problems, and I am pleased that my hon. Friend the Member for Preseli Pembrokeshire highlighted the issue of young carers.
I shall draw my remarks to a conclusion because I know that many hon. Members wish to speak. It is important that we all have a chance to have our say on this important subject during an important week. In the debate, we have recognised the achievements of carers, who want to do their work. As elected politicians, we must ensure that they have as much help as possible.
Dr. Phyllis Starkey (Milton Keynes, South-West): I, too, congratulate my hon. Friend the Member for Preseli Pembrokeshire (Mrs. Lawrence). I shall keep my remarks brief, but I want to draw on the experience of the Milton Keynes carers project, of whose work I cannot speak too highly. It supports carers by ensuring that they have access to information about the services and benefits available to them and by providing incredibly effective support and networking. I am sure that there are many other equally effective organisations in other areas.
The Government must recognise the important work that is done by such organisations and ensure that they have adequate finance to do it properly. Five years ago, the Milton Keynes project was in touch with about 400 carers. It is now in touch with about 850. That is a substantial number, but it is still only 4 per cent. of the estimated total number of carers in Milton Keynes. The project could do much more and reach many more people if it had more funding.
I shall draw attention to two groups of carers with specific needs. The first is young carers, to whom many hon. Members have already referred, and I emphasise the importance of supporting them. One young carer in Milton Keynes is quoted as saying that the peer support provided by the young carers' group let him know that he was not alone in the world.
The second group is forensic carers, whose relatives are not held in high regard. A group has been set up in Milton Keynes for people who care for mentally disordered offenders currently or previously resident at Marlborough house, a local secure mental health facility. I know that the Home Office is interested in the work of the group. Such carers face enormous problems but receive little support because other people are scared of the relatives for whom they care.
The Milton Keynes carers project asked me to stress the need for real joint working between health and social care staff and day-by-day involvement with carers. It is extremely important that professionals acknowledge that carers should be equal partners in supporting the people for whom they care, and that social services and health care workers should take every opportunity to listen to and work with carers. I quote a carer with an adult son with a learning disability who, after a review meeting, said that she felt that "it was the two of us against the seven of them. I felt it was them or us." That is terrible and should never be the case.
Mr. Michael Weir (Angus): I congratulate the hon. Member for Preseli Pembrokeshire (Mrs. Lawrence) on securing the debate. I, too, am a carer and have much experience from caring for a young daughter.
In Scotland, the situation is slightly different because many items affecting carers are devolved. One item that is still reserved to Westminster is benefits, and I hear many complaints about that subject in my surgeries. People such as myself do not have the financial difficulties that are suffered by many carers, some of whom are desperately poor and rely on benefits. The Carers National Association estimates that half of Scotland's 620,000 carers have no savings and that a third struggle to pay utility bills. As many as 23 per cent. cut their food bills and buy out-of-date food, and many cannot afford to pay their rent or mortgage. That is a desperate situation.
Angus carers recently held a conference, during which we heard much about the benefits problem. Many carers said that they had to tread through a minefield to get benefits, and that what they received from one hand was taken away by another. If they received income support and claimed invalid care allowance, the allowance was deducted from the support, so they were no better off. One of my constituents gave up her job to look after her mother and, as a result, became far worse off. That is not unusual.
Hon. Members have said that carers save the state a large amount of money each year. A recent report from "Carers Week" showed that in Angus alone, which is not a large area, carers saved £106 million per annum.
There are further inequalities in the system. If the cared-for person does not live in the same home as the carer and the carer claims invalid care allowance, it is deducted from the benefit of the cared-for person. That creates an immediate problem for a carer who wants to ensure, as he or she gets older, that the cared-for person has a chance of an independent life when they have gone. That is a factor that faces all of us who care for childrenat some point we will no longer be there. We have to ask ourselves what will happen to the child then.
In a recent debate on carers in Scotland, the Minister referred to changes in pension arrangements for those over 65 who receive the ICA. Carers are confused, however, as to whether that will be paid in addition to the retirement pension. Will the Minister clarify that point?
I would not like to give the impression that carers are concerned only about money. Many other issues affect constituents, especially in areas such as mine. One of my constituents raised the problem of travelling to benefits appeal hearings. In my area, the appeals are heard in Dundee, which is a considerable distance from many places in my constituency. For a carer to get to an appeal hearing, he or she must first find someone to look after the person who is being cared for before travelling a considerable distance from Montrose to Dundee, for example. That is not easy or cheap without a car. The carer is away for the whole day, causing considerable stress to the carer and the cared-for person. Will the Minister consider the possibility of holding appeals nearer the home of the carer rather than in central locations?
Mr. Paul Burstow (Sutton and Cheam): I congratulate the hon. Member for Preseli Pembrokeshire (Mrs. Lawrence) on securing the debate on this particular week and giving so many hon. Members the opportunity to take part in it. It is a great pity that it is impossible for everyone to have their say in a debate of an hour and a half, so the Government may arrange a debate on another occasion.
Thanks to the carers' centre in my constituency, I have been fortunate to have the opportunity to shadow carers over the past four years. It has been a real eye opener. Life changes when a person becomes a carer. Things that he or she took for granted stop. It is hard work suddenly to find that one's husband or wife is in need of support, and no longer able to give support. The carer is alone even when the person for whom he or she cares is around. Getting started as a carer always seems to be a challenge. Obtaining help from the national health service, social services and other agencies can prove time consuming. It is not so much that such help cannot be provided, but that the agencies take so long to get their act together.
Unless people are carers, they cannot begin to put themselves into the shoes of carers and understand the mixture of emotions that caring day-in, day-out, stirs. No matter how deep the love that binds people together, caring 24 hours a day grinds a person down. That is certainly the experience of the carers whom I have met. Should society expect people to carry on caring in that way? If carers want to, that is fine. However, if such action is taken out of a sense of obligation and because the alternative is degrading and unacceptable, it is wrong.
Surveys show that most of us want to carry on living in our own homes for as long as possible. I support that view, but we must make sure that those unsung heroes who are carers do not shoulder an unbearable burden. Earlier this week, I again had the opportunity to shadow a carer, something which relates to part of the speech made by the hon. Member for Preseli Pembrokeshire. I spent time with Jenny, who cares for James. James is nine years old. He has attention deficit hyperactivity disorder and autistic spectrum disorder. Jenny is full of praise for the support that she has received from health, education, social services departments and others, particularly the carers' centre in my constituency. Her story has been one of struggle to have her son's needs met. Were it not for her persistence, a move back to
Like so many carers, Jenny feels isolated. She has a second son, Lewis, who is at infant school. No allowance is made and no support is offered to him by his school, yet he is a young carersupporting his mum, making her laugh, keeping her going and looking out for his brother. Will the Minister talk to her colleagues in the Department for Education and Skills about the possibility of Ofsted, in its inspections, examining how policies are being developed within schools to turn the packs that are given to them into a practical reality? Perhaps such action can be a positive initiative.
School holidays can be particularly isolating for such families. The development of regular, supervised holiday activities for children, with opportunities for parents to meet others in a similar situations, could do much to overcome isolation. Just having an adult conversation can make a difference. If we set Jenny's story against the fact that three in five of us could become carers, it is clear that there is much more to be done to improve the lot of carers. As my hon. Friend the Member for North Norfolk said, carers are the backbone of the care system. Without them, the NHS and social services would be overwhelmed.
As the hon. Member for Preseli Pembrokeshire said, it is estimated that 6 million carers save the United Kingdom a staggering £57 billion a year. In 10 years, the proportion of carers providing between 20 and 49 hours of care a weekand probably many morehas more than doubled. In the past five years, the number of people receiving home care, which was formerly provided by social services, has fallen by 100,000. The burden on carers has increased at a time when social services departments are increasingly rationing access to care, especially when an informal carer is already on hand. What assessment has the Department of Health made of the impact of the increasingly restrictive eligibility criteria on carers? The consequences of the rationing of care will be to store up problems for the future.
Research clearly shows that half the people who become carers sustain an injury. The hon. Member for Uxbridge (Mr. Randall) referred to back injuries. Similarly, many carers will require treatment for stress-related disorders. A survey that was carried out last year by the Princess Royal Trust for Carers UK suggested that one in four carers in the United Kingdom had suffered health problems. The report suggested that lack of helptwo out of three received no support at allwas having a significant impact on their health.
That brings me to the Carers and Disabled Children Act 2000, which was meant to give every carer the right to an independent assessment of their needs. Like all carers' legislation, it was a private Member's Bill, not a Government Bill. In the Labour party's general election manifesto, there was a promise to examine the development of a fund to help local authorities to meet the needs found through those assessments.
Investment in carer services is as much about preventing the carer from descending into disability, ill health and dependency as it is about sustaining the cared-for person in his or her home. Research shows that despite the national carers strategy and the carers' grant, which are welcome, it is the experience of too many carers that the agencies are going through the motions when it comes to consultation, and that lip service is paid to the need to recognise carers, but that such recognition is still not deeply ingrained in the culture of public service organisations.
I hope that the Minister can tell us what is going to be done to change that, and I hope that she will take from the debate an important message: that national carers' week should be every week. Carers are undervalued, overlooked and overloaded, and unless we change that, not only the Government but the wider community will lose out.
Tim Loughton (East Worthing and Shoreham): I add my congratulations to the hon. Member for Preseli Pembrokeshire (Mrs. Lawrence) on securing the debate and on her timing. Not only is it the beginning of carers' week, but she has made sure that the overtime in the England match did not sprawl into the debate. Perhaps that is why so many hon. Members are here and have made it such a good and worthwhile discussion, which has included a vast array of individual experiences.
The hon. Lady is competing this week with men's health week and volunteers' week, but carers are important members of our constituencies of whom all of us have personal experiences. Those experiences may be of the many carers' organisations that hon. Members have mentioned. The hon. Member for Milton Keynes, South-West (Dr. Starkey) commented on how important it is that those organisations are supported, and are given the resources to support the carers that they represent. I am sure that many of us have experiences of family members who have been carers.
The debate gives us all the opportunity to say thank you to those carers and carers' organisations. As my hon. Friend the Member for Uxbridge (Mr. Randall) said, it is important that they should not be taken for granted, as they so often can be. I should like to congratulate Carers UK, too. The "Adding Value" report that it has just brought out has been quoted extensively and considers the extent of carers' involvement in supporting other carers. I think that that is particularly interesting. It estimates that the value of carers' involvement amounts to at least £1 billion per annum in community activity, excluding the wider value of the impact of their support on reduced health costs, for example.
The study found that one in four carers had helped to set up new services in the voluntary sector in the past 12 months. The respondents had contributed an average of 18 hours per month to their local community, often on
The hon. Lady gave an array of figures; there are almost 6 million carers in the country. That is one in eight adults. In particular, it struck me that 51,000 carers are young people under the age of 18. They are missing out on a social life and on a child's normal development into adulthood. There are particular pressures on them, and they need especial support. More than 2.5 million carers have to juggle their caring responsibilities with paid work. Over half of carers look after someone who is older than 75, and 18 per cent. of them care for more than one person. Perhaps the most alarming statistic is that more than half of all working carers suffer from health problems as a result of caring. They suffer not only from back problems and other physical injuries, but from mental stress. As the hon. Member for Brighton, Pavilion (Mr. Lepper) said, that is particularly the case with regard to looking after people with dementia problems such as Alzheimer's disease. That can bring enormous stress to family environments. Many carers also suffer from financial stress, as hon. Members have mentioned. We need to address that in a sensitive and sensible way. In short, carers do not suffer only from physical injuries.
Recently, on television, I watched the story of a woman in her 70s who was a carer for her disabled husband and for her two grown-up and educationally challenged sons. She had also been waiting 15 months for a knee operation. She was hobbling around. We need to be much more sensitive to individual carers' needs. That woman was looking after three family members, as well as coping with her own severe difficulties. Such people need the maximum help. Given such examples, it is no wonder that Carers UK calculates that carers save the Government £57 billion per annum, which is an enormous increase compared with 10 years ago. We should pay particular attention to the illness and stress that is caused to carers themselves.
The costs of caring will further increase, as will the number of carers who are needed, and the number of older people who require care, because of demographic trendsmore than 2 million of the 6 million carers in this country are older than 60, and a fifth of them are older than 75. A lady came to my surgery recently; she was 77, and she had been looking after her 95-year-old mother for many years. She said, "Look, I've been a pensioner for the past 17 years. I cannot go on like this. I need help." She had done that work with dedication, and we need to give such people much more help. These problems will become worse.
Despite the progress that has been made as a result of the Government's national carers strategy, problems remain. "Adding Value" mentions that 63 per cent. of carers did not feel that their caring role, or their expertise, had been properly recognised, or that their
Almost all of the hon. Members who have spoken have mentioned respite care. In that context, the hon. Member for Angus (Mr. Weir) made an important point about travelling to benefits appeal hearings. Just trying to get respite care to be able to do that results in a catch-22 situation. If carers cannot get to those appeals, they cannot get the benefits, which means that their job becomes even worse. More respite care cover is also needed so that carers can go to local social service departments, or wherever, to get better training. However, it is extremely difficult to get respite care for training cover.
We know about the pressure on social services because the subject comes up virtually every other week in debates in Westminster Hall. Many social services departments are experiencing large funding gaps, which means that they are retrenching many of the services that they might offer. That has led to a shortage of home helps, and that problem has been exacerbated by bed blocking problems. Too many people are being forced out of hospital beds early. That is a false economy because many of them have to return to hospital within a couple of months of their early discharge.
It is no good sending an elderly person home when their broken legor whateverhas been patched up if that person cannot look after themselves at home. That is a false economy. If carers do not have the resources to do that, we are only storing up problems for the future. Carers commonly complain that families and carers are not consulted prior to a patient being discharged, and there must be much more sensitivity in the health service.
The low pay of private care workers was also mentioned. That is especially a problem in the south-east, where there is a great shortage of such workers. Buying in private care workers is subject to value added tax, which adds to the problem.
I shall leave several questions with the Minister. Will she tell us about the future of the carers grant, which is guaranteed only up to December 2004? How many assessments of carers' needs are carried out annually? What improvements have there been since the Carers and Disabled Children Act 2000 took its place on the statute book?
Also, can we encourage employers? It is good employment practice to take account of a worker's needs, if they care for people at home. Companies such as Centrica offer their employees greater flexibility, enabling them to switch their hours to take an afternoon or day off to look after a relative at home.
It is right that we should help carers. We should give them far more support and encouragement because there is a demographic time bombby 2037, an extra 3.5 million carers will be needed to cope with an estimated increase of 3 million in the 75-year-old plus population. We must give carers greater respect and
The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears) : In the relatively short time available to me, I hope to respond to as many points as possible made by hon. Members in this excellent debate. The number of hon. Members present, the range and depth of knowledge and experience of personal matters brought to the debate have helped it to come alive. I shall be taking away all the issues raised in order to inform our policy and ensure that it is more responsive and accessible to the carers in our community.
This is a timely debate. Not only is it carers' week, which raises the issue all the way up the agenda, but we have also seen the publication of important reports from the Office for National Statistics, which updates the figures mentioned by my hon. Friend the Member for Preseli Pembrokeshire (Mrs. Lawrence). It is now estimated that 7 million adults are involved in caring. The number of carers is growing and they are becoming an increasingly substantial part of our community.
A report directed specifically at the health needs of carers identifies that, in terms of mental health, carers who are caring for more than 20 hours a week are more likely to report mental health problems, and that women carers are more likely to report mental health problems. Women are, perhaps, more willing to report health problems, but huge numbers of men are carers and are under similar stresses and strains as a result of their responsibilities.
My hon. Friend set the scene in an excellent speech. She covered a range of issues on which action has been taken, although I am the first to acknowledge that much more remains to be done if we are to provide the type of support mechanisms for carers that are required.
Dr. Desmond Turner (Brighton, Kemptown): Although the Government support package for carers is welcomeespecially the carers grantgiven that there are 7 million carers, it amounts to about £20 per carer per year, as against about £10,000 that each individual carer saves the country in terms of professional services. Little respite can be bought with £20 a year, and local authorities are cutting back on support for carers. Does my hon. Friend agree that there is a danger that support for carers is slipping back rather than developing?
Ms Blears : My hon. Friend makes an important point: we must put as much resource as we can into supporting carers. However, he must acknowledge that, although there have been substantial increases in personal social services over the past few years, there is always a need for more. In the Budget statement, my right hon. Friend the Chancellor set out that there will be increases for personal social services of 6 per cent. over and above inflation over the next three years, which should enable local authorities to begin to meet more needs, not only of carers but of personal social services in general.
My hon. Friend is right to keep up the pressure for services for carers. However, some of the practical examples that hon. Members will have seen in their communities this week show how the carers grant is beginning to provide much more respite. That speaks for itself.
One issue highlighted by all hon. Members is the need for services for young carers. A range of projects in communities tries to support young carers.An example that I should like to highlight is that in Gloucestershire, where for the past few months a project has been implemented to try to help young carers who are preparing for their GCSEs and who have not had time out for study and training, to ensure that they have the chance to get the qualifications that will be so important for them in future. They have had a residential weekend away, with support and respitea real break from their day-to-day responsibilities. Such projects are being implemented throughout the country. Several projects deal especially with the needs of black and ethnic minority groups. Hidden carers are a top priority for the Government.
Hon. Members mentioned culturally sensitive services and ensuring that services are provided in languages that people can understand. The services are extremely personal, and we must ensure that they are as culturally sensitive as possible. In Kensington and Chelsea, a night-sitting service is available, especially for Bangladeshi, black African and Caribbean, Chinese, Indian and Pakistani families. Such services were not in place years ago. There is real innovation and support in the field.
Lincolnshire has a hospice-at-home project, whereby carers care for terminally ill friends and members of their families and communities to try to ensure that at a desperate time for many people, care and respite is available. Indeed, many voluntary organisations, such as CrossroadsCaring for Carershave a night-sitting service in Wigan, which provides a huge amount of help to people with dementia, which my hon. Friend the Member for Brighton, Pavilion (Mr. Lepper) mentioned. We must be aware of the huge stresses and strains on people.
One of the top aims of carers' week and of the Government's priorities is tackling the issue of hidden and young carers, who have never before been on the agenda. For young carers, we have the quality protects programme, which is designed to ensure that we consult young carers in devising policies. We must ensure that the structures put in place reflect the needs that they tell us that they have. We want not a system whereby the Government or local authorities provide a one-size-fits-all service, but one that is flexible and responds to communities' needs. We now have learning mentors in schools to help young carers get the most out of their education and the early years, when they should be enjoying making friends, having a social life and doing all the things that children in other families sometimes take for granted. We have the Connexions service, with personal advisers for 13 to 19-year-olds, which is again designed to involve young carers.
The matter involves not only the Department of Health and local government but the Department for Education and Skills and important benefit issues, which are the responsibility of the Department for Work and Pensions. I shall certainly bring the matter to the
Another important aspect that many hon. Members mentioned is supporting carers in employment. The measures that we have introduced to enable people to have time off work for family emergencies are a real innovation. We must ensure that employers are aware of carers' needs, and we have a mountain to climb. Our £1.5 million project on work and family life balance is designed to ensure that employers are sensitive to carers' needs and can adapt their working practices to fit in with people's family demands.
Work is also being done to provide a new national helpline for families with disabled children, which many hon. Members mentioned, and a system that can put them in touch with all the different agencies that can provide a package of care and support, whether relating to education, health, support in the community or transport. We are funding Contact a Family to the tune of £500,000 a year for the next three years to set up that national helpline, which will be a huge step forward. We are also match funding Carers UK's employment project to support carers in work. The Department for Work and Pensions has introduced the new ONE series, which is designed to get carers back to work and to give training, support and advice.
I pay tribute to the tremendous work that carers do. We have made significant progress on the strategy, the carers grant and practical projects. However, I acknowledge that we have much more to do to ensure that we give carers the right support, information and care for their health. We must ensure that they keep well so that they can do their fantastic work. I look forward to a continuing dialogue with carers on these important issues.