§ 7.45 p.m.
§ Lord Carter
My Lords, I beg to move that this Bill be now read a second time.
This Bill comes to this House from the other place with all-party support and agreement from the Government to support its enactment.
First, I must congratulate my honourable friend in the other place, Mr. Malcolm Wicks, the Member for Croydon North-West, for steering his Bill through the Commons. I was both pleased and honoured when he asked me to perform a similar task in this House. I was particularly pleased for two reasons. I was responsible from the Opposition Front Bench for dealing with the 1990 National Health Service and Community Care Act which put into law the present system of community care. My only sadness today is that serious illness prevents my noble friend Lord Ennals, my Front Bench colleague at the time, from being with us today to consider this Bill, which deals with an important aspect of community care which was much discussed when the 1990 Bill was before the House, and which has been discussed on many occasions since.
My other more personal reason relates to my own family. For seven years until he died, we cared at home for our own son who was disabled. We were immensely fortunate in having a network of loving and caring grandparents, relations and friends who provided support and help. But our experience then forcibly brought home the situation and the problems of that great army of carers who are often alone and do not receive the help that they should. This Bill will start to put that situation right.
The aim of the Bill is to give those who provide, or intend to provide, care on a regular and substantial basis a legal right under statute to have an assessment of their needs where the carer requests it. The statistics behind this Bill are familiar but they bear repeating. It is estimated that there are some 6.8 million carers in the UK of whom 1.5 million provide care for more than 20 hours per week. The peak age for caring is 45 to 64, with 27 per cent. of women and 20 per cent. of men in this group being carers. About one-third of care is provided by elderly people, mainly spouses, about half of whom are men. The more heavily engaged carers are likely to be sole carers receiving little help from others, living; in the same household and caring for someone with a mental impairment.
There are 360,000 disabled children in the UK of whom 98.5 per cent. are cared for at home by their parents. The Joseph Rowntree Foundation recently reported that most parent carers find that the stresses associated with the care of their disabled children are wide-ranging, unrelenting and sometimes overwhelming. There are about 400,000 629 carers who are caring for a relative or friend with dementia. About half of these spend more than 80 hours a week on this exhausting task. However, the demands of carers for help are often quite simple. A 69 year-old husband, who was caring for his wife, said,The sitting service means that I can get out on a Sunday morning, play a round of golf and have a drink in the club. It keeps me sane. With four hours a week on a Sunday I can manage the rest of the week".The Institute of Actuaries puts the annual value of unpaid care at £33.9 billion. Another survey, using a different method of calculation, puts the figure at £39.1 billion. To put those figures in perspective, the value of all institutional care in the UK in 1992 was £7 billion, and the value of professional home care was £3.1 billion. Those figures mean that nearly 80 per cent. of care was provided free by carers.
Before I go through the Bill to explain its purpose and structure, I can tell your Lordships that it is not my intention to seek to amend the Bill in its later stages. I shall therefore need to put a number of points to the Minister for clarification. I am afraid that that may make my speech a little longer than is normal at Second Reading.
The community care sections of the National Health Service and Community Care Act 1990, which were implemented in 1993, placed a duty on local authorities and social service departments to assess and provide or arrange provision of appropriate services for a person in need of community care services. However, there was no such provision in the Act for carers, although the statutory guidance from the department clearly recognised the role of carers and stated that:Carers who feel they need community care services in their own right can ask for a separate assessment. This could arise if the care plan of the person for whom they care does not, in their view, adequately address the carers' own needs".However, recent research carried out by the Carers National Association in 1994 showed that only 13 per cent. of carers had received a separate assessment.
In the Bill, adult carers, including people caring for children, will have a right to a separate assessment. Local authorities will have to consider the ability of the carer to provide and continue to provide care when deciding what services should be provided to the person being cared for. Services will be provided as a joint package for the user and the carer.
A carer is defined as an individual providing a substantial amount of care on a regular basis. Those are mainly the 1.5 million full-time carers, many of whom spend most of the day and night caring for their disabled, sick or elderly relative or friend. That caring force of 1.5 million people is a larger labour force than the entire labour force of the National Health Service and social services departments combined.
The Bill does not define carers by age or relationship to the person they care for, which means that young carers and parent carers are covered within the scope of the Bill. The Bill does not apply to paid carers or volunteers.
The local authorities, if requested, will look at the users' and carers' needs together when deciding on services rather than providing a whole new raft of services for carers. The provision for young carers and those 630 caring for children is also an important step forward. Young carers will be able to ask for an assessment if they are providing a substantial amount of care on a regular basis. If an assessment reveals that considerable burdens are being placed on a young carer, under the Bill a local authority will be obliged to increase the level of service provision to the person who needs care—for example, home care, bathing services and the like. Under the Children Act local authorities have to consider the needs of the young person in relation to the child's health and development and offer services directly to that child. I was pleased to note that the Chief Inspector of the Social Services Inspectorate, Herbert Laming, issued a letter on 28th April this year to all directors of social services advising them of their duties to children who are also young carers.
People who care for children with disabilities will be able to ask for a separate assessment when the child is being assessed for services under the Children Act and under Section 2 of the Chronically Sick and Disabled Persons Act. The carer does not have to be a parent. The only criterion is that the person is providing a substantial amount of care on a regular basis.
The Bill will apply to Scotland. However, because the Children Act 1989 is not applicable in Scotland it is not possible to give people who are caring for children in Scotland a right of assessment under the Bill. However, the noble and learned Lord, Lord Fraser of Carmyllie, has given an undertaking to incorporate those duties in the Children (Scotland) Bill, which is due for its Committee stage in this House on 6th June.
In Northern Ireland the framework of legislation is somewhat different from the rest of the UK so the provisions of the Bill cannot be applied there directly. However, an assurance has been received from the Government that the Secretary of State for Northern Ireland will issue directions which have statutory force to the health and social service boards in Northern Ireland asking them to apply the main policy intentions of the Bill. Therefore, the provisions of the Bill cover the whole of the United Kingdom.
The Bill does not seek to separate the needs of the carer and the person being cared for. Assessment must look at the circumstances of the whole family or the whole situation in which a person will be cared for. The services provided must reflect that holistic approach and avoid the possibility of two assessment procedures running in parallel.
Neither will the Bill create two rafts of services, one aimed at the carer and one at the person who is being cared for. The person who is being cared for will remain the centre of concern. Community care services will continue to be provided to these people, but the Bill will give the first recognition in statute of the fact that carers must be fully taken into account when decisions are taken as to what, if any, services are to be provided.
To go through the Bill, the details of its clauses are as follows. Clause 1 applies to England and Wales. It is a freestanding provision which does not seek to amend existing legislation. At first sight it is rather long, but that is to ensure that all the categories of carer—young and old, and the carers of children and adults—are covered by the Bill.
631 The basic philosophy behind the whole measure is that it is crucial to ensure that local authorities take proper account of carers' circumstances when carrying out an assessment of the need for community care services of the person being cared for.
There are two particularly important points in the clause to which I should draw your Lordships' attention. First, the clause makes it clear that the situation with which we are concerned is one where a carer provides or intends to provide regular and substantial care. That means that both those already caring and those who may be about to assume a caring role, perhaps following an accident or severe illness, will fall within the scope of the Bill. It is particularly important that we assure those about to assume a caring role that they are covered by the provisions of the Bill, for example, when someone is being discharged from hospital. We do not want the carers' needs to be considered only in the last resort. The local authorities must be able to respond to the needs of carers and those receiving community care services in advance of any difficulties.
Secondly, under this provision the carer will be assessed on his or her:ability to provide and to continue to provide care".That underlines what already exists in the Department of Health's policy guidance and in other statutes. It states that assessment should not assume a carer's willingness to continue to provide care.
Parent carers and other carers of children are dealt with under subsection (2) of the clause, which gives parents or other carers of disabled children the right to an assessment when their child is being assessed under the Children Act 1989 or Section 2 of the Chronically Sick and Disabled Persons Act 1970. Parent carers will then have the same right to an assessment of their needs as carers of adults.
Turning to the issue of young carers, large numbers of children and young people take on considerable caring responsibilities. It has been estimated that 40,000 children and young people act as carers. We must also give recognition to their role. While young carers are not mentioned specifically in the provisions of the Bill, I should like to reassure your Lordships that the Bill will give young carers the same rights as adult carers to an assessment.
In carrying out assessments of people being cared for, local authorities should consider all the circumstances of those people, including whether there are children in the families who provide care. The level of services provided should then seek to ease the burden on the children or young people providing care.
Clause 2 deals with the Bill's application to Scotland. As your Lordships will see, a slightly different approach is adopted by amending the Social Work (Scotland) Act 1968. The intention of this provision mirrors that in England and Wales in relation to those caring for adults and gives carers in Scotland the same rights as those in England and Wales. I have already pointed out that with regard to parent carers, the noble and learned Lord, Lord Fraser of Carmyllie, has confirmed that amendments to the Children (Scotland) Bill will be placed before your Lordships' House when it is debated to ensure that the 632 provision for carers of children with disabilities in Scotland will be the same as those proposed in the Bill for England and Wales.
The third clause is one with which we are familiar in health Bills. The clause is needed to clarify the unusual position of the Isles of Scilly which comprise a social services department but not a local authority. Clause 4 is a standard financial provision clause.
Clause 5 is basically self-explanatory, but I wish to deal with the question of carers in Northern Ireland. It is clear that carers in the Province have the same needs as those of carers in the remainder of the United Kingdom. However, noble Lords will see that the provisions of the Bill appear to be restricted to Great Britain to the exclusion of Northern Ireland.
The reason for that is that in Northern Ireland the Department of Health and Social Services has powers to direct that carers would have the same right to assessment as under this Bill. Therefore the aims of the Bill can be achieved by the Department of Health and Social Services exercising existing powers under the Health and Personal Social Services (Northern Ireland) Order 1972 to direct boards and trusts with which they contract for the provision of community care to carry out such assessments of carers' needs as the local authorities in England and Wales will be required by the Bill.
The important issue is that carers in Northern Ireland should have the same rights as those in England, Wales and Scotland. Reassurances have been given by the Government that the powers of direction will be exercised if the Bill reaches the statute book. With that reassurance, there is no need to make specific provision for the application of this Bill to Northern Ireland.
I should now like to put a number of points to the Minister for clarification when she replies to the debate. The first is a matter raised in another place and concerns a situation where a carer is unable to communicate; for example, as a result of severe deafness. Will that problem be dealt with specifically through guidance?
Will there be a further explanation in the guidance notes of regular and substantial care? We must avoid a situation where problems of definition give local authorities the possibility of not completely meeting their obligations in the Bill.
Does the department intend to address the situation revealed in the recent report by Binder Hamlyn Fry on community care information issues? It revealed that 60 per cent. of local authorities surveyed had inadequate or unsatisfactory information systems to deal with assessment and care decisions.
Presumably the department will interpret the Act to local authorities to make it clear that reassessment of carers' needs as circumstances change will be a statutory obligation. In the Bill the right to reassessment is exactly the same as the right to an assessment.
Finally, will draft guidance be issued for consultation? If so, perhaps the Minister will tell us when that is likely to be.
It is an important Bill. Its enactment will begin to deal with one aspect of community care and start to bring some relief to the 1.5 million carers who carry a great burden and, by so doing, relieve the rest of us of both cost and effort.
633 I cannot finish without thanking the many organisations which have provided information and briefing on the Bill. I cannot mention them all, but I must single out the Carers National Association. In many ways it is that body's Bill. It deserves great credit for all that it has done to bring the Bill before Parliament. The Minister and her officials have been immensely helpful with meetings, advice and briefing. I am extremely grateful for the help that they have given.
We all want to see a decent, properly resourced system of community care. The Bill is but one step in that process. I commend the Bill to the House.
§ Moved that the Bill be now read a second time.— (Lord Carter).
§ 8.4 p.m.
§ Baroness Seccombe
My Lords, I congratulate the noble Lord, Lord Carter, on introducing this important Bill in your Lordships' House. His concern for people who face difficulties in their daily lives is well known and respected and I am delighted to support him with the Bill.
I was also very happy to give my support to the reforms that came into force in April 1993 giving councils the main responsibility for funding and commissioning care.
One of the stated aims of the reforms was to ensure that service providers make practical support for carers a high priority. With nearly 7 million carers, that is an enormous challenge, but now that the reforms have bedded down it seems that this is the right time to put best practice onto the statute book.
The principle of care in the community, giving those in need the opportunity to continue life as close to normality as possible, must be right. But sometimes it is at a very high price for the carer.
In my experience the need for care can develop in two ways: first, as a result of a traumatic happening, perhaps at birth, an accident, or the onset of a debilitating illness such as a stroke. That dramatic change causes decisions to be taken quickly and often whole families and support services become involved. However, the gradual deterioration of those in the second group is often not noticed except, of course, by the carer who takes on more and more tasks.
Very often the carer, too, is elderly. It can be difficult to state exactly when a helping hand develops into a caring role. It just creeps up on them. The demands can be enormous and whereas many of us could cope for a short time, long term care can result in physical, mental and certainly emotional illness for the carer.
I am sure that most of your Lordships on all sides of the House could give illustrations of carers whose lives have been blighted as they have given 24-hour love and devotion. Careers and pleasures have to be dropped because of the demands on them and livelihoods obviously suffer.
There is one group whose needs deserve to be addressed with special concern. I refer to the children and young people who have been expected to cope with a sick relative. Such experience has forced them to grow up too quickly and consequently they have been denied the 634 natural pleasures of childhood. It has been extremely unfair and I am both relieved and delighted that the Bill seeks to eradicate some of the horrific situations that have come to light.
I hope that the required information for the assessment of carers will be acquired in a sensitive way. I understand that personal and private questions have to be asked. But officialdom must not be allowed to stop people who have reached the end of their tether from applying for help. A non-smiling person with a clipboard can seem absolutely irrelevant and intrusive. Perhaps I may suggest that those involved should receive guidance on their approach.
I am also concerned that the wishes of the carer should be listened to. The assessment should be the result of a genuine dialogue. The carer, after all, knows what help would be of the greatest assistance to him or her. It is very humbling to hear how little help is asked for. As the noble Lord, Lord Carter, said, it can be as little as four hours a week.
Before I conclude, I should like to mention the real need for respite care. Those responsible for round the clock care—many do not even have one unbroken night's sleep, or the chance to relax during the day—must therefore be given the chance of a break to recharge the batteries and to gather strength to cope again.
I congratulate Jill Pitkeathly and all her colleagues on raising the profile of carers. They have highlighted the extremely difficult conditions in many cases. In an aging population, it is essential that we address the problem now. Carers are often not appreciated by those for whom they care. So I believe that those of us who are fortunate enough not to be in a similar position have the responsibility to lighten the load when possible. Carers make a huge contribution to our society which should and must be recognised.
I have a slight concern, however. We want to give help to carers in every way. But sadly, of course, it will never be possible to answer all the demands. It is important not to build up expectations which cannot be fulfilled. I wish the Bill every success. I feel that its arrival on the statute book will be a real achievement, much needed and much appreciated.
§ Baroness Seear
My Lords, I must declare an interest—as is fashionable at present—as the President of the Carers National Association and say how delighted I am that the Bill has come to your Lordships' House tonight. I hope it will have an extremely quick passage. We have been waiting for it a long time and do not want to wait any longer.
It would be most ungracious not to say how grateful we are to Malcolm Wicks in the House of Commons for having pioneered the passage of the Bill through the other place and acquired the support not only of all parties there but, most important, of the Government. I thank the Government for giving the Bill their support and for making it possible for the Bill to pass swiftly through both Houses. We are grateful for the help and sympathy that they have shown; Mr. Bowis has gone out of his way to be helpful. I remind noble Lords—perhaps some may not know it, so I cannot remind them—that many years ago 635 when I was chairman of the carers' association, I had a promising young vice-chairman who was very helpful. Her name was Virginia Bottomley. That being so, I am not altogether surprised—it was just what I expected—that we should have good support from the department. Thank you very much.
It is not surprising that the subject calls for a great deal of support from all sides of the House. After all, I suppose all of us have been a carer, are a carer, will be a carer or with any luck, will he cared for. So it is not a matter which divides people. Essentially, it unites us with a common anxiety as to what will happen' to our own families and ourselves. So we give the Bill a warm welcome, with our grateful thanks.
In recognising the needs of the carer and giving the carer the right of assessment in her or his position as carer, the Bill is both symbolically and practically of great importance. It is symbolically important because it recognises and shows that the carer's position is at last— I say deliberately at last—understood for what it is. The carer is not just an appendage of the person who needs to be looked after. Of course, there is an important relationship between the two, but carers have their own rights and needs; they must be considered and given the right to be heard independently. Yes, ultimately the assessment will be a joint one, but carers will be able independently to put their views as to what they need and will have the right not to be given secondary consideration, after consideration has been given to the person being cared for. There is a recognition of the role of the carer as being independent although, of course, it is always in relation to the person who is being cared for. Those of us who have worked in the field have been struggling to obtain that for a long time and the Bill recognises the position. For that we are grateful.
However, the Bill is of practical importance too. As other speakers have said, it is important that the practical needs of carers are understood and met so far as possible and that what carers want is taken into account, rather than the carer being offered such services as are conveniently available from the authority with whom the carer is dealing. The carer's needs must be listened to.
On previous occasions I have mentioned a case where a husband was looking after his disabled wife. He asked for help with the cleaning and maintenance of the house. He was told, "No, no, we cannot give you anyone to clean. We can give you someone to bath your wife and get her up". He said: "But I bath her and get her up and she prefers that I should do that. I prefer to do it. I want someone not to bath my wife but to clean the floor". That was not available. For my part, if I were housebound I would far rather have someone cleaning the floor and doing the washing up than almost any other service I can think of. The more one is confined to the house, the more important it is to have the floor clean. Even I—a notorious slut—can see that that is important if you have to be in a house as much as is necessary, looking after someone through long hours, day after day.
I emphasise respite care which has already been mentioned. Caring day after day is bad enough; night after night is infinitely worse, with interrupted sleep. I have been fortunate, I have had little of that myself. However, I know that you can stand being woken up three times 636 during the night; but when it is 10 or 15 times you get into a mood which is not far short of murder, however fond you may be of the person for whom you are caring.
Those are serious considerations. We are assuming that some people have an indefinite ability to strain their resources in the care of someone else. The fact that they love that other person does not make it easier; indeed it makes it more difficult. So the need for carers to have their requirements properly studied and met in the order of priorities that they have is of the greatest importance. This is an opportunity to do something of an Oliver Twist. We are now being given what we have been seeking for some time.
Perhaps I may remind the Government of another issue connected with caring which has been shelved for the time being but which, like this Bill, will, I hope, be revived in due course. I have talked about the importance of people caring for someone obtaining help on the domestic side. We know that the meeting of these domestic needs is difficult and the resources are not available. Sometimes it has been possible to give financial help so that the carer or the person being cared for can make their own arrangements for getting the help they need in the house. That is often welcome. However, in response, a number of private organisations have been established commercially to sell those services. That can be good but it can also be bad. It is extremely important that there should be a register of such organisations so that we can be confident that people coming forward and selling the services are of the standard that we would require if we were going to employ them ourselves.
There was a Bill in the House of Commons which did not see the light of day. It was intended to bring in registration. While thanking the Government for what they are doing, I ask them to think again about that Bill and the possibility that, having had one Private Member's Bill in the interests of carers, we might have another. That would be very good indeed.
Again, I thank the Government. May the Bill go through quickly so that action can be taken in the near future.
§ 8.18 p.m.
§ Lord Mottistone
My Lords, I too wish to congratulate the noble Lord, Lord Carter, on so skilfully and clearly introducing the Bill. I should like to congratulate Mr. Wicks on giving us a Bill which we hope will not require amendment.
The Bill will help local authorities better to identify the problems facing carers generally, as well as the needs of particular carers, in dealing with particular sufferers. I suspect that in many cases carers soldier on over many years under ever-growing strain, without the local authorities or the health services being fully aware of the problems or of the vital support that the service of the carers is giving to the public bodies.
As noble Lords will know, my concern is in the main with the carers of those who are mentally ill. In particular, I am advised by the National Schizophrenia Fellowship. It sees the benefits in the enactment of this Bill to be a greater understanding of the problems of carers, which most of its members are, and of the ways of alleviating 637 those problems. An example of alleviation that it gives is the provision of respite care, about which my noble friend Lady Seccombe and the noble Baroness, Lady Seear, have already spoken.
Respite care is when the sufferer goes into hospital or into a respite hostel or hotel, freeing the carer to have a much needed holiday and have the respite himself or herself. One such respite hotel is Forresters, near Southampton, which has just been saved for two more years from closing down because the National Schizophrenia Fellowship, which owned it, could not afford to keep it going. So far, it has found 35 local authorities willing to pay up to £275 a week for a sufferer to stay at Forresters. But it costs £200 a week more, an amount that the NSF has to try to find. Even that cost is cheaper in total (£275 plus £200) than the cost of a hospital stay for a sufferer or for care in a local authority home.
I hope that this Bill will show local authorities how important respite is for carers. It will enable them to compare the full cost of a respite home or hotel with the much greater amount that a periodically refreshed carer saves them or saves the health authority.
The noble Lord, Lord Carter, gave some figures that match what I have just said and provide the detail that endorses the point that I am trying to make. This is a good Bill, with great potential for opening the eyes of officialdom. Let us speed it through this House without amendment.
§ 8.22 p.m.
The Earl of Balfour
My Lords, I, too, thank the noble Lord, Lord Carter, for introducing this Bill. I hope that he will thank his honourable friend in another place for introducing it there. It is extremely encouraging to hear that carers will be fully taken into consideration for the very first time. I am very glad to see that within the provisions of this Bill users and carers are taken together.
Looking back through my life, I feel it was often so very sad to see young carers growing old before their time because of the burden of looking after an elderly relative. I am also very glad that amendments will be introduced to the Children (Scotland) Bill to meet the points that have been raised tonight. I shall read Hansard with great care.
One of the matters about which I feel very strongly is that a nurse in a hospital looking after a person who is severely disabled mentally or physically goes off duty at the end of her watch. Carers have no such break. It is the tremendous strain sometimes of their not getting any help or relief in those wee small hours between dinner and breakfast that can wreck their physical health very rapidly. Although it is sometimes extremely difficult to get the disabled person—on this occasion I shall refer to such people as patients—to go into hospital for a short break to give the carer a break, if the carer, particularly in more serious cases, does not have a holiday, the result is that the National Health Service, for example, may eventually be looking after two patients instead of one. That should be taken into consideration.
In view of the provisions of this Bill, and particularly the figure of 80 per cent. free care being given today, I wonder whether Her Majesty's Government—I know that 638 this is not a function of this House—would consider giving tax relief where assistance is being paid for out of the patient's funds or the funds of other relatives in that same family. Otherwise, any care that is paid for has to come out of one's net earned income and cannot be set against anything else. I feel that there need to be tax considerations in those cases where it can be provided. Otherwise, I welcome this Bill. It should go through unamended. It is definitely a step in the right direction.
§ 8.26 p.m.
§ Lord Thurlow
My Lords, I apologise for not having put my name down on the list of speakers. I missed the bus with the Whips' Office. Very briefly, I should like to give my warmest possible support to the general approach of the Bill and the particular hope that it extends to all those who are engaged in the sometimes horrendous responsibility of caring. It is a responsibility that I have shared with my late wife. I know what can be involved.
Like other speakers, I should like to mention particularly the need for respite care. Can the Minister tell us anything about the kind of guidance that may be given to local authorities on this matter? We know from the remarks of the Minister in the other place his deep commitment to the extension of respite care. I am not at all surprised to hear from what the noble Baroness, Lady Seear, said about the Secretary of State's former incarnation that she also has a personal commitment. We know that the Minister who will reply shares that commitment. We also know that the understanding among local authorities of the priorities to be given in community care is patchy. There are some very good authorities and there are many that have not yet woken up to the priority problem.
I very much hope that the guidance that will be issued will include specific reference to the need to consider the contribution that possible provision of respite care may give to make it possible for carers to take on the responsibilities that they would like to take on. Here, I venture to quote the words that the Minister in the other place used at Second Reading. He said that in talking to a carer the carer had said,Don't take away this responsibility for caring. I … just want … a break". [Official Report, Commons, 3/3/95; col. 1370.]That is what most of the speakers tonight have emphasised as a necessary and cost-effective condition for enabling carers to make the contribution that they wish to continue to make.
§ 8.30 p.m.
§ Baroness Jay of Paddington
My Lords, I too would like to congratulate my noble friend Lord Carter on introducing this important Bill and on the very clear way in which he explained its provisions. As is customary in a debate on a Private Member's Bill, I am speaking from the Front Bench this evening in a personal capacity. But I must emphasise that this Bill is strongly supported by the Opposition. Indeed, many of its principles were included in the Labour Party's consultation document Making Carers Count, published last September. That document said that carers must be the focus of support just as much as the people for whom they are caring. Therefore I am 639 particularly pleased that my noble friend Lord Carter and my honourable friend Mr. Malcolm Wicks in another place have successfully piloted the legislation thus far in both Houses. Both of them have a longstanding commitment to the issues addressed in the Carers (Recognition and Services) Bill and it is gratifying that the Government have been so helpful in ensuring that the Bill is likely to become law during this Session.
Several noble Lords who have spoken have recognised the crucial role of the Carers' National Association in campaigning for many years for the rights of carers and in framing the original provisions of the Bill. The CNA is, of course, powerfully led in your Lordships' House by the noble Baroness, Lady Seear, its president. Like her, I wish to pay special tribute to the association and particularly to the work of the association's director, Jill Pitkeathly, and the assistant director, Francine Bates.
As my noble friend has explained, this short Bill is relatively complicated because it seeks to cast the net as widely as possible to include all carers. Last year my honourable friend in another place, Mr. David Hinchliffe, sought to amend the National Health Service and Community Care Act to include statutory assessments of carers. But my noble friend's Bill goes much wider, particularly, as has been mentioned by several noble Lords this evening, to cover parents and young carers through the 1989 Children Act. That broader scope is very welcome because it acknowledges that heavy responsibilities may be carried at every stage of life. This Bill deals with the idea of informal family care in the round rather than in compartmentalised slots through different departmental statutes.
As has been explained by several noble Lords who have spoken, demography and social change make that holistic approach an essential feature of any legislation. Already, as more and more people live to a great age, we are seeing very elderly people trying to look after each other. Increasingly, parents in their 80s and 90s are being cared for by their children, who themselves are in their 60s and 70s. At the other end of the age span, we see a vast increase in the numbers of single parents who may need to shoulder alone the burden of a disabled child, or maybe it is the child who must become the primary carer for a parent without a partner.
The plight of the young carer has been emphasised by several speakers this evening. It is especially poignant. The measures in this Bill to support the young carers are very important as they will now be designated as children in need under the carers' Act. The Carers' National Association has been trying for a long time to raise awareness about their special needs and has pointed out the problems for the 40,000 or so children and young people who find themselves in that role. The CNA has written to me to say that:Young carers are coping with the stresses of caring many hours for a parent or sibling at the same time as trying to continue with their studies. The disruption to their education can have serious consequences for their future … The emotional consequences of the child taking on the caring role, who may be performing intimate caring tasks and suppressing their own needs, clearly gives rise to serious concern … Many young carers and their parents are reluctant to come forward and seek help from local authorities fearing that officials will come into their home and break up the family".640 It is good news, as my noble friend Lord Carter said when he introduced the Bill, that since the Bill completed its passage through another place, the chief inspector of the Social Services Inspectorate, Mr. Laming, has issued a letter to all directors of social services reminding them of their duties to children who are also young carers.
The force of this Bill, as it applies to all age groups and not just to the young carers of whom I have been speaking, is that there is now a statutory obligation on local authorities to take the initiative in discovering their needs and creating a unified package of services for both the cared-for and the carer. Until now only the lucky few carers have had the individual assessments that the Department of Health guidance has suggested that they can ask for. As has already been mentioned, nearly 80 per cent. of those who have been surveyed have said that so far the community care reforms, including the ability to ask for an assessment, have made no difference to their lives.
One of the major factors has been that most carers have been stoical in bearing demanding responsibilities without complaint. One of the strongest comments recorded in the debate on this Bill in another place was from somebody quoted as saying, "Nobody ever asks me how I am". Most people seem to have felt guilty about drawing attention to their needs until they had reached breaking point. Now there must be a formal obligation for social services not only to ask but to act.
Several voluntary associations working in this field—and every noble Lord who has spoken tonight—have emphasised that carers' needs are often modest and may revolve around the need just to find a way of having a break. I was appalled last year to see a survey by the National Federation of Women's Institutes which showed that more than half of carers were not able to take even an occasional one week away. Respite care, as every speaker who has contributed tonight has said, should be a statutory right for carers with continuing responsibilities.
But having mentioned the relatively modest need for respite care, I must add a note of caution about the potential for raising false expectations in the wake of this Bill. Noble Lords are all too familiar—it comes up in one debate or another every week—with the particularly difficult financial problems that local authorities face in implementing community care. It would be especially tragic if those measures of positive commitment to improving the lives of carers could not be properly implemented because of resource constraints. There are many recorded instances, particularly in the recent report by Scope (formerly known as The Spastics Society) of hard-pressed local authorities withdrawing statutory services when social workers identified that in certain instances there was an informal carer already in place.
Legally, this Bill should prevent that cruel practice ever happening; but, as always, if local authorities genuinely cannot afford to provide proper practical support, the carer may be little better off. In another place, the Minister, Mr. Bowis, replying to the debate, said that messages about resources had been delivered to him to be passed on to what he called the "avid followers" in the Treasury and the DSS. Perhaps when the Minister replies 641 tonight, she will say whether, since that debate, there has been any response from the "avid followers" to the request for resources.
The resource caveat is always with us. But, in conclusion, I should like once again warmly to welcome the Bill and to thank my noble friend for introducing it. I also thank the Minister and the Department of Health officials for giving it such a fair and encouraging wind. Informal carers play a pivotal role in community care, which we all want to succeed. This Bill will help them to help those for whom they care. I wish it every success.
§ 8.39 p.m.
§ The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege)
My Lords, I am delighted to be able to welcome the Carers (Recognition and Services) Bill. In supporting the Bill, I am very pleased to be able to reaffirm the Government's commitment to ensuring that the selfless and sometimes heroic contribution which carers make is recognised. I would like also to congratulate Mr. Malcolm Wicks on his skill, deftness and flair in introducing the Bill and taking it through the other House. I also congratulate my honourable friend John Bowis, whose determination to see this Bill succeed should also be recognised. I also thank the noble Baroness, Lady Jay, for her warm welcome and for a powerful speech full of insight and perception.
As in so many debates, I know that there are people in your Lordships' House who have first-hand experience of this subject. Many of us arc or have been carers. We know members of our families or friends who have taken on caring responsibilities. We recognise the hard task that it can be, especially if they are feeling isolated; it is not only physically draining, but emotionally taxing. But there is also the other side—and I agree with the noble Lord, Lord Thurlow—that caring can involve affection, and many carers, given enough support, would be reluctant to hand over their responsibilities to another. We recognise that when that occurs some carers feel that they are failing in their duty, albeit it is a feeling that is not justified. Nevertheless, it brings them deep unhappiness and guilt and we want to avoid that at all costs.
Your Lordships will no doubt be aware, as I am, of the considerable contribution made by the noble Baroness, Lady Seear, to the cause of carers through her work as president of the Carers National Association. I join with others in paying tribute to Jill Pitkeathly and her staff at Carers National for their effort and persistence in achieving the Bill.
The noble Baroness, Lady Seear, highlighted graphically the rigidity and lack of sensitivity of some of the services provided, especially for those upon whom the demands are the greatest. Her comments in relation to broken nights struck a personal chord with me and I regret to have to tell your Lordships that I have been near to committing murder—fortunately my three children are still intact.
The Government have been particularly concerned to ensure that those carers who are providing the most care are the ones to benefit. For example, we want to ensure 642 that the 78 year-old man who is caring for his 77 year-old wife, who suffers badly from arthritis and dementia and who cannot be left safely alone, does receive the support he needs through the home help service, meals-on-wheels, respite care and other services that are available. However, we recognise that it may not be those services which give him the support he wants, but something quite different which he believes to be more appropriate to his needs. The Bill will not only concentrate on those carers who are providing "substantial and regular care", it will also encourage the flexibility and sensitivity that we all seek.
The Bill outlines what we have already said in policy guidance. It underlines what is universally acknowledged to be good practice in carrying out assessments. It has the potential to ensure that the circumstances of the person being cared for and the carer are properly considered together by stating that carers should now have the right to an assessment on request when the cared-for person is assessed. Once that has been done, the results of the assessment should be taken into account in deciding what services, if any, should be provided for the user. In other words, the services provided should reflect what sort of help the carer needs to assist him or her to provide care for their loved one.
Not quite two years into the full implementation of community care I am pleased to report to your Lordships that local authorities are aware of the need to recognise and support carers. It is encouraging that 97 per cent. of local authorities believe they are now better able to support carers than they were 18 months ago. And there has been an overall improvement in the provision of respite care. but that does not mean that we should become complacent. To help with support for carers, we made available an extra £20 million last year and £30 million this year to provide more respite and domiciliary care—issues raised by the noble Lords, Lord Carter and Lord Thurlow, and other Members of your Lordships' House. But something that always strikes me when talking to carers is how very modest their requests are. What they cannot understand are the rigid "take it or leave it" packages which are not only expensive but inappropriate. For example, there is little point in providing only day care from 9 to 5 when what the carer wants is a sitting service one evening a week so that they can go down to the pub or club and meet friends or have a drink with them—the normality of social life referred to by my noble friend Lady Seccombe. Such rigid and inflexible packages of care and the attitudes which accompany them, need to be compared with innovative approaches such as in Bradford where carers are given vouchers which they can use to buy respite care as and when they want it.
My noble friend Lord Mottistone highlighted another alternative; and he is right in wanting a range of services and a range of choices open to carers. My noble friend Lady Seccombe, in her compelling speech, highlighted the needs of young carers. The Bill provides a right to assessment for young carers and parents who care for their disabled children. In doing that, I am delighted that it recognises some of the very real stresses and strains which these families are facing. The Children Act 1989 also applies and it is essential that links between community 643 care legislation and the Children Act are made. A local authority should therefore carry out an assessment of either a parent or carer or a disabled child or a young carer, within the framework of the Children Act. That establishes in law the child-centred principles which should guide our work with children. These include the importance of the child's wishes and feelings, and that the child's welfare is paramount. Young carers are children first; their needs are very different from those of an adult who is caring. They must be allowed to be children and not grow up too fast. They must be able to do all the things that children do; play, or as teenagers go out with their friends without worrying about a dependent father or mother. All too often in the past young carers have not been recognised. I am pleased to say that that is changing, and their needs both as children and as carers are becoming more visible. The Social Services Inspectorate has work in hand to spread good practice in this area and, as the noble Lord, Lord Carter, said, the Chief Inspector for Social Services has just issued a letter which emphasises local authorities' responsibilities.
In establishing a right to assessment for parents who care for disabled children, the Bill is consistent with the Children Act. Guidance emphasises that social services departments should carry out assessments in a manner which takes account of the child's and the family's views and circumstances, and that plans should be made in agreement with them.
We can all appreciate what an extremely difficult time it is when a parent, wife or husband becomes sick or disabled through accident or illness. Sorting things out for the return home from hospital can be both distressing and stressful. It is vital that the carer's voice is heard in planning the hospital discharge, and the provision in the Bill will assist with this.
I should like to reassure my noble friend Lady Seccombe that this is not an invitation to increase bureaucracy. That is not what carers want. Rather, it is an Opportunity to improve practice. An integrated approach should enhance the carer's ability to provide care as well as the independence of the person whom they are looking after. I am sure that those staff in local authorities, some of whom may have caring responsibilities themselves, who are in contact with carers, want to provide the best possible help. Additional forms and procedures will not help them to achieve this.
I should like to respond to the points raised by the noble Lord, Lord Carter, and to thank him for his courtesy in giving me notice of his questions. In doing so, I pay tribute to the way in which he has handled this Bill. If I can say so, his parliamentary knowledge and expertise in promoting, and regrettably sometimes opposing, legislation is much respected. We also readily acknowledge his personal commitment to caring for others and his expertise in the field. I agree entirely with what the noble Lord said about the need for guidance. It will be important that guidance encourages a practical, holistic assessment and avoids a bureaucratic approach. We shall of course be consulting on the draft guidance which will be available later in the year. The guidance will be aimed at assisting local authorities to identify the carers whom we are seeking to help through this Bill. I can assure the noble Lord, Lord Thurlow, that the guidance will encourage local 644 authorities to consider the full range of services that will help carers. He is so right about the need for respite care and the lifeline that that offers to carers.
I am glad that the noble Lord, Lord Carter, asked about reassessment. The Bill makes it clear that a carer may request their own assessment at the time of the user's assessment. If, therefore, either as part of a review or because of a change in circumstances, an individual is being reassessed, the carer can, naturally, ask for their own assessment to be carried out at the same time. The results of the assessment will, as the Bill says, be taken into account when decisions are made about services to be provided to the disabled person. We shall be seeking to make that clear in any guidance produced.
The noble Lord raised the question of carers with communication difficulties. This is an important matter which will most certainly be addressed within the guidance. The noble Lord also drew attention to information technology and local authorities. We fully realise that more work is needed on local authority information systems. I should like to reassure the noble Lord that we shall be looking at this important issue as part of the Community Care Development Programme.
My noble friend Lord Balfour raised the interesting point of tax relief on the costs of caring to carers and their families. As I am sure my noble friend anticipates, it is an area on which, though I find it intriguing, I shall need to seek further advice before giving a response.
The noble Baroness, Lady Seear, asked whether the Government will think again about legislating for the regulation and registration of commercial care agencies. We have accepted that there is a need to develop common standards for domiciliary care. The Social Services Inspectorate published guidance on developing standards in October 1993. We do not consider, though, that the time is right to introduce compulsory registration but we are to review the position this year as part of the overall review of regulation of inspection services.
In conclusion, this is an important Bill for carers and, I am sure your Lordships will agree, a significant step towards more responsive community care. I commend it to the House wholeheartedly. In doing so I should like to echo the words of my noble friend Lord Mottistone that your Lordships should speed this excellent Bill through the House without amendment.
§ Lord Carter
My Lords, I am extremely grateful to all noble Lords who have taken part in the debate and I shall be extremely brief in my response. First, I thank all the speakers for making it clear that they share the intention that I expressed of not wishing to amend the Bill so that it will have a quick passage through your Lordships' House. One point that was touched on which we should not overlook is that demographic trends mean that this is a problem which will grow in the future. As I said when I opened the debate, this is one step in a long process.
The point about expectations is an important one. We are placing a great responsibility on local authorities. But as a number of speakers said, resources are important but often the requirements of the carers are quite simple. Local authorities can meet a number of the problems with flexibility and at no great cost. Every speaker without 645 exception mentioned the importance of respite care. All of us who have been involved in caring know how important it is just to get a break.
I thank the Minister for her very thoughtful and helpful speech. She dealt extremely fully with the points that I put to her. I commend the Bill to the House.
§ On Question, Bill read a second time, and committed to a Committee of the Whole House.