§ 8.40 p.m.
§ Lord Rix
My Lords, I beg to move that this Bill be now read a second time.
I am grateful to those who have stayed to this late hour to lend their support. In saying that, I am conscious of those carers who are now at home looking forward 752 not to a good night's sleep, but to the night shift, because they care 24 hours a day, seven days a week. In thanking your Lordships, may I say how grateful I am to the Officers of your Lordships' House for their very valuable technical advice on this Bill; planting my feet, as it were, in the paths of righteousness.
The Bill is about people who need help and people who give help. It has two elements: the first is to ensure that when an assessment is made under any of the nine pieces of legislation listed, that assessment will specify any need for short-term breaks. The second is to ensure that, in consultation with the disabled person and any carer, those recognised needs will be met. That is simple and powerful.
The difference from the current situation is striking. Existing legislation, including the new Carers Act, does not guarantee either assessment of the need or the provision of short-term breaks. This is an essential right if community care is to continue to function and to mean—primarily—family care.
I want to share the story of Gillian and her family with noble Lords because it underlines why this Bill is needed, and as Chairman of MENCAP, I can vouch for the story. In 1995, Jack and Ellen, Gillian's parents, had their first holiday in 40 years. It was made possible by Gillian's first short-term break at a small residential home. Gillian has Down's Syndrome and communication difficulties. Her mother says,In the early years no one even came to visit, let alone offer a break. We love Gill enormously and in fact we missed her last year when we went on holiday, but we had to look beyond that and say to ourselves, 'What about when we are gone?' … The longer you go without a break from each other, the harder it becomes to let go and the more protective you get. That's not to say that it will ever be easy, just that with a bit more practice it wouldn't leave you feeling so bad. We just hope that parents today don't have to feel as helpless as we sometimes did.I am afraid that all the evidence, regrettably, shows that they often do feel helpless. How would this Bill help Gillian and others? It would recognise the need; it would assess the need; it would meet the need where there were gaps. These would have to be recorded and tackled, and as a result the lives of people with learning disability and their families would be brought nearer to what most people take for granted.
Today, there was a lobby of Parliament asking the question, "Community care—is it working?". This Bill addresses one of the key reasons why it is not working as well as it should. The pressure on families continues to increase, with more dependent people being looked after by families at a considerable saving to the public purse.
As a crude measure, residential care for a person with severe disability will cost £500 or more a week, while a short break may cost £50 a week. Until we start assessing individual need, and recording the gaps, we shall never know the global cost of filling the gaps. However, if I take an arbitrary £50 for one short break for some 20,000 adults without even a day service. we are talking about a bill of £1 million. The better the services, the higher the costs.
753 Before this Bill is dismissed as too costly—and how can £1 million in this context be too costly?—let us balance it with the savings currently made by leaving families to cope, plus the cost of crisis care when families stop supporting each other or when a carer dies.
In the Government's own White Paper back in 1989, community care was defined as,providing the right level of intervention and support to enable people to achieve maximum independence and control over their own lives".Access to appropriate short-term breaks is key to that. Indeed, the practice guidance of those early days bolstered hopes that short-term breaks would become a normal way of giving severely disabled people and their families something closer to a normal life. Experience has been otherwise. There is more variety, certainly; but I know that there is, in many places, less opportunity for short-term breaks.
The Bill uses the definition of carer from the recently implemented Carers (Recognition and Services) Act 1995, and the definition of disabled person is that used in the Disabled Persons (Services, Consultation and Representation) Act 1986. I note in passing that attempts are being made in another place today to secure the implementation of the advocacy provisions of what we have come to know as the "DP Act"—now 10 years old and still only partially implemented.
Short-term break may be a less familiar term than respite care. Respite has come to mean the carer saying, "I need a rest". Short-term break has come to mean a shared desire for change. MENCAP is anxious the Bill should emphasise the need for short-term breaks or respite to be focused on the needs of the disabled person as well as those of the carer. The two things go together. In the words of one parent of a young child we need,somewhere where she is really wanted—no half-suppressed sighs on the end of the phone when I ring, somewhere which is fun for her too".I should like to quote one young woman with Down's syndrome:1 know about respite, because I have what I call my two-in-one mother … We support each other … I really look forward to seeing her as we have some really good times together … We go to the cinema … Respite is all about making friends and having fun".A short-term break can mean a break in the person's own home. For example, the MENCAP sitting services in Leicester, which specifically cater for ethnic minority communities; or the break might mean time with another family; for example, Enable's "Lend a Hand Scheme" in Fife, while Family-Based Breaks, with support from the Norah Fry Research Unit in Bristol, have achieved great things in recent years; or there are breaks based on doing things with friends. Liverpool Short-Term Breaks have become nationally known as an example of time away from the home with ordinary people, doing ordinary things in ordinary places.
Then there are residential breaks, usually now in a residential home catering for respite only; or holidays in holiday settings, of which MENCAP's own holiday service is one example. Often a holiday is the only time a person with learning disability can break with 754 day-to-day routine, and branch out with new friends and activities. The benefits are enormous. These are the possibilities.
Now, just a few examples of the problems which those possibilities address. The main problem is of course that only a minority get anything and few of those get very much. Example No. 1: a young man with severe learning disabilities, who can be violent and has severe epileptic fits, was offered a social services place in a home with pre-war glass in the windows and a fire door which led straight out into the main road.
Let me give a second example: a large town, which is now a unitary authority, has no respite available if one is over 17. That is a town which has 90 families needing short-term breaks. In those families were people with learning disabilities. As a third example, quite commonly breaks have to be hooked a year in advance with no emergency back-up.
I am grateful to Contact-a-Family—an organisation of which I am patron—for sharing the problems of two year-old Louise, whose mother was so desperate for a break that she refused to take Louise out of hospital until short-term breaks were offered. It took six months to gain three short breaks. I could continue, but I feel that the point has been made.
Perhaps I may say a word about scale. I deal only with the area of concern that I know best. Up to 100,000 adults with severe learning disabilities—I repeat, 100,000—live with their families. Only around one in five of them receive a short-term break or a holiday. Almost all children with learning disabilities live with their families of course—around 30,000 of them with severe learning disabilities, including children with high medical needs such as nasal feeding tubes who once would have been kept only in hospital.
In a recent study of 1,100 families with severely disabled young children, over two-thirds said that they did not get enough breaks, and about a quarter did not know anything about short-term breaks. That is one of the fundamental problems of the current system. All good practice suggests that disabled people will be fully consulted in their assessment, family carers will be involved and options discussed in full. However, MENCAP evidence from the report published last year entitled Britain's other Lottery shows that people lack information about services, that few disabled people play an active part in their own assessment and that the whole procedure is dominated by the availability of services in an area rather than the needs of the individual.
I am grateful to the many organisations which have given their support to the Bill, including the Carers' National Association, SENSE, Action for Dysphasic Adults, Age Concern, Marie Curie Cancer Care, the MS Society, the BMA and many more. Although I have concentrated on the need for short-term breaks for people with learning disabilities, the support of those organisations shows the very wide application of the Bill 755 and the need which exists. Let me quote the Alzheimer's Disease Society, which also welcomes the Bill:Recognition of need must be backed by firmer statutory rights to services and proper financing of services if the carer and the person with dementia they care for are to receive meaningful community care in the future".The Bill is about people with disabilities having an ordinary life. There is nothing odd or unusual about people wishing to have a break from their parents or their parents wanting a break from them. We ask for a right to have what other people take for granted. The Bill is an essential tool which people with disabilities and their families need, and they need it now.
Your Lordships will be aware of the proverb about lighting the candle being preferable to cursing the dark. There are too many families at present left cursing the dark. I hope that this Bill will light a few candles for those very families. I beg to move.
Moved, That the Bill be now read a second time.—(Lord Rix.)
§ 8.53 p.m.
§ Lord Swinfen
My Lords, I am delighted to support the Second Reading of the Bill, which is a very necessary Bill, so ably moved by the noble Lord, Lord Rix.
The Bill is a natural extension of previous enactments, notably the Disabled Persons Act 1986 and the Carers (Recognition and Services) Act 1995. Those acts entitle both disabled people and carers to have an assessment by social services of their needs and ability to provide care. However, neither Act entitles disabled people or carers to receive services such as short-term breaks. Provision of short-term breaks may only be made at the discretion of the local authority. Consequently, many carers do not receive respite care and short-term breaks, even though a clear need may have'been established.
In 1992, the Carers National Association carried out a postal survey, which revealed that 20 per cent. of carers never had a break. Of those who did have a break, 73 per cent. had regular or occasional breaks; 62 per cent. of regular breaks were for less than half a day; and that 36 per cent. of occasional breaks were taken just once or twice a year and 59 per cent. for a period of less than a week. How many noble Lords would want to work continuously without that kind of break? In follow-up research in 1994, the Carers National Association found that even when carers had received an assessment under the community care scheme, one in five carers ended up without a break.
It is clear that carers need a break for two main reasons. First, there are the physical strains connected with the responsibility for providing personal care and helping with the activities of daily living. The second reason involves carers' perceptions and interpretations of their experience as tiring, difficult or upsetting, which can be influenced by feelings of low self-esteem and strain.
756 As many noble Lords will know, I work for the John Groom Association for Disabled People. That organisation, for a number of years, had available respite care. Unfortunately we had to close it for the simple reason that local authorities were not prepared to pay and it was a wasted asset. We subsequently put it to much better use.
Although carers need a break from caring in order for them to be able to continue caring in the longer term, each carer's situation is different and each carer may need a different sort or length of break. For some carers, a sitting service would be the answer; for others, family-based respite may be more appropriate; still others may need the guarantee of a good night's sleep once a week; and others may need a two-week break once a year.
Carers save the community vast sums every year. There are over 6 million carers providing, for nothing, an estimated £39 billion-worth of care annually. Quite a number of those carers are children, caring for parents. They need time off for homework and revision for examinations and time for school projects, apart from the opportunity to be just children. Others are working full or part-time to keep their family as well as caring for one of the family members.
The average cost of a residential place in a home for a young physically disabled adult is some £530 a week, which approximates to £27,500 a year. For a frail elderly person, the cost is £250 a week or £13,000 a year. Often, an elderly parent is the carer for a young adult with a disability. If the elderly parent's health breaks down and he (or she) and therefore the young person have to go into a home, the combined cost would average out at £40,000 a year. The cost is a great deal more if one considers that the carer or indeed the disabled person might have to be hospitalised instead of going into a residential home.
Yet the cost of providing from a care agency a carer—not very highly skilled—averages out at only £6 an hour where the carer is used in the family home. I should have thought that £6 an hour was a worthwhile investment against a possible £40,000 a year. The Family Policy Studies Centre has concluded that if one out of 10 carers were to give up the cost to the public purse would be £2 billion a year.
We have an ageing population and improving medical services that enable people who are disabled by accident or illness to recover sufficiently to live at home. This means that the need for carers will continue to grow. The Government and the nation must take the matter seriously and make provision to support carers properly. That must include proper provision for breaks. I am delighted to support this Bill.
§ 9 p.m.
§ Baroness Dean of Thornton-le-Fylde
My Lords, I too am delighted to support this long-awaited Bill. I am surprised that it has not been before the House before, perhaps in 1985 or last year when the Carers (Recognition and Services) Bill was enacted.
I declare an interest as president of the Fylde Coast branch of the National Carers' Association. This Bill is welcomed by many of the members of that association 757 to whom I have spoken. One cannot draw in one's mind a profile of a typical carer. There is no such person as a typical carer. The person does not fall into a particular category. It is true that 3.9 of the 6 million carers mentioned by the noble Lord, Lord Swinfen, are women but 2.9 million are men. In Britain 8 per cent. of carers are aged between 16 and 29. Young people, who never anticipated that they would be carers, find themselves caring for members of their family. Across the board carers are often just thrown into that situation. They never expect that that is waiting for them in life, but they are willing to take on the responsibility because they love those for whom they care. I believe that it is at that point that society takes advantage of the situation. These people are willing to look after members of their family who are disabled.
I have heard it asked, "Why this Bill? In some areas there are plenty of models of respite care". We can all write lengthy lists of people to whom we have spoken who do not even know that this kind of care is available. They just do not know that it exists. Even when they do know it exists, they feel that they are asking for charity. They believe that it is not a right and they are a burden on the state if they try to get respite care. If the Government support this Bill, as I dearly hope they will, I believe that hand in hand with that there should be a major communication exercise to ensure that people know about it.
Another problem is that, because this is not a right or a requirement, when social service budgets are cut or expenditure exceeds what is available, the first areas to be cut are those that are not mandatory. That is another reason that it is absolutely essential that this Bill reaches the statute book.
The two contributors to the debate who have spoken so far have said that the Bill is for carers, as it is. It is said that it is for people who are cared for, as it is. But there are two other groups who will also benefit vastly from the Bill. I suggest that the third group is the family. Stress and pressure is put on a family where one member has the burden of caring for another member who is disabled. In many cases that brings relationships within the family to breaking point. If a child is being cared for, other children in the family may be neglected and do not receive attention from their parents. That may cause problems in the family. Parents who are entitled to have time with their children do not get it. They do not have the joy that they should have from bringing up the able-bodied members of the family. I believe that the family will benefit as a result of the Bill.
I believe that our health bill will also benefit. It is often said that one real example is worth a thousand words. For a while, my father was a carer. From her mid-40s, my mother had bad health because of rheumatoid arthritis. My father was a shift worker. He cared for my mother with family support. I also saw the deterioration in his health. As a result, he lost time from work. Not only did that mean an on-cost to the state but, because he was on a final salary pension scheme, he paid through his pension at the end of his working life. That is always the case when people stop work to be carers. They lose on pension at the end of their working 758 lives. People may not give up work but their health may he affected at the end of a long period of work, quite apart from withdrawal from normal social life in the community and the family. I believe that all of us will benefit from the Bill both directly and indirectly.
The two noble Lords who have already spoken have said that there is no one model of care that is required. It has to meet a variety of circumstances and arrangements which suit the carer and the cared for, as well as the family environment. In its implementation, the Bill calls for variety and discussion on the basis that it is not charity but something to which the carer is entitled and the cared for requires. The cared for needs a change of atmosphere and a break just like the carer. I look forward to hearing the Minister's reply. I hope that she will be able to say that the Government support the Bill.
§ 9.7 p.m.
Baroness Darcy (de Knayth)
My Lords, I support this short, simple but very important Bill with enthusiasm. The case for short-term breaks to be given higher priority has been well argued by my noble friend Lord Rix. I was interested in what he said about the wide variety of short-term breaks. My noble friend is a particularly appropriate person to introduce the Bill, which can be pivotal to the smooth running of community care.
Short-term breaks are essential for carers if they are to carry on being able to cope. They are important for disabled persons, enabling them to live longer in the community, perhaps to get out into the community at an earlier stage and to have a better quality of life along with their carers while living in the community.
As the noble Lord, Lord Swinfen, said, many people do not know that their local authorities can help to finance respite care, so they do not ask for help. The Bill will ensure that opportunities for short-term breaks are considered as an option and are not missed through ignorance of their existence. That will bring important spin-off benefits because MENCAP research issued last year, entitled Community Care: Britain's Other Lottery, to which my noble friend Lord Rix referred, showed that local authorities were reluctant to record the unmet needs of disabled people. As a result, the future planning of services is based on the present provision, which is already an underestimate of need.
The Bill could be instrumental in breaking the vicious circle of unmet needs, which are unrecorded, leading to more under-provision, leaving more people in ignorance and not being offered nor asking for help, ending with more unmet needs. The Bill will ensure that people know that local authorities can help to finance respite care. If the local authority refuses, people can ask the reason why and discuss what is the most appropriate provision, which may well be looking after the disabled person in their own home rather than removing them to another environment.
I should like briefly to quote an example given by MENCAP which illustrates both the short-term and the long-term value of such breaks and how they arc in ever shorter supply, along the lines of what my noble friend Lord Rix said with a great deal more authority. Arthur 759 is 82 and his daughter Susan is 42 and has Down's syndrome. In 1983 when Arthur and his wife moved to Exeter with their only daughter, there was no respite care. Within a year he and others had secured some short-term respite beds in a local long-stay residential home for people with multiple disabilities. By 1985 MENCAP had helped to secure a respite care home especially for people with learning disabilities. Arthur and his wife really value the time that Susan gets to spend at the facility, learning to adapt to life without them, as there will come a time when Susan will have to go into long-term care. Her breaks prepare her for that eventuality, teaching her the skills that she will need to cope with a more independent life. However, after a period of gradually reducing the number of beds from 16 to nine, the council finally announced last month that the respite facility was to close. Users will have to make the longer journey to proposed new sites which may have fewer beds. As Arthur says,We are nearly back to square one … Close those places down, you could be damaging a lot of people's chances of a more independent life".I gather that that pattern is being repeated around the country as pressure on resources and funding increase. Breaks both for those with severe physical disabilities and their carers play an important part throughout their lives. Some of your Lordships probably knew that extraordinary man, Robin Cavendish, who for 35 years enjoyed, contributed to and lived life to the full on a respirator, able to move only his head. Robin had the idea of starting a holiday home for "responauts"—that is, severely disabled people dependent on respirators—and with the backing of the charity Refresh, Netley Waterside House was opened in 1977. Netley provides responauts with care that is specialised enough to enable those who look after them to have an essential break. It probably caters for people more severely disabled than are accepted by any other establishment in the country.
I understand that the most difficult time to secure residents is at the end of the financial year, January to March. It is possible that if assessment for respite care becomes mandatory, it could help to spread the demand throughout the year. It could ensure that all local authorities are supplying clients, not just those which already make use of the establishment, but with budgets which are obviously limited.
There is a lot to be said for encouraging the use of respite care as a half-way house. It is a useful means of helping newly disabled people out of hospital before they transfer to their homes. It is a means of getting them and those who will be looking after them used to their newly acquired disabilities. They may well find that they can do much more than anticipated. It could free expensive hospital beds earlier and could be jointly funded by health trusts and local social services departments. I understand that Netley is also thinking of writing direct to fund-holding GPs who could send clients there directly. Furthermore, the wider use of respite care facilities by local authorities could save money by putting off the day when a severely disabled person can no longer be looked after in his or her own home and has to be put into residential accommodation.
760 We all want community care to be a great success. This small Bill will help to get people into the community, enhance their lives in the community and enable them to remain longer in the community. It will be of real value to those with learning disabilities, mental illness, severe physical or sensory disabilities, to those who are very old or frail, and to all those who care for them, and to their families, as the noble Baroness, Lady Dean, said. I hope that the Government will respond positively to the Bill and that your Lordships will give it a safe and speedy passage.
§ 9.14 p.m.
§ Baroness Gardner of Parkes
My Lords, I too am delighted to support the Bill which we are pleased the noble Lord, Lord Rix, has brought forward. He introduced it clearly and so much has already been said that there is not a great deal to be added. Of all the points that he made, I was struck most by the reluctance of carers to leave the people for whom they care. That is true. They become so attached to the person, no matter how severe the burden, that they are concerned whether he or she will be in safe hands without them and whether or not they will feel a sense of guilt if they leave the person even for a short time. It is important that there should be respite care breaks during which the carer can be assured that the person will be thoroughly and carefully looked after. Carers will know that during a break they need have no sense of guilt or worry that they have neglected the person for whom they are caring.
A number of councils already do a great deal as regards caring but others do very little. Recently I met a friend who lives in the area covered by the Kingston-upon-Thames council. It is not an area about which I know a great deal, but I was most impressed to hear that her elderly mother is given respite care and is taken in for a day, or even for a few hours, if the family wish to go away. That has made such a great difference to the family that they can continue to have her living with them rather than moving her into a home.
Care in the community has been a victim of its own success. So many people have heard about what they can have and what they might like to have that the demands are almost insatiable. Not all stories about care in the community are good but a great deal is being done. Where it is being done well, it is working well.
When I was vice chairman of a regional health authority I visited a small health authority area in Essex. I was pleased to see that what had been a small cottage hospital, which had 'been closed down because more expert services were provided by a nearby hospital, had been turned into a respite care centre. All the people in the village were able to send their elderly relatives, or those needing any type of special care, for a holiday or break, enabling the carers themselves to have a break. It was used by a consortium of all the GPs in the village. When I visited, a new section was being opened and it was hoped to extend the services to other people nearby.
We all know the marvellous voluntary organisation, Crossroads, which gives people breaks for perhaps an hour or half a day. It illustrates clearly how valuable are 761 even the shortest breaks. It makes us realise of how much greater value would be a respite break longer than just a few hours. However, even a break of a few hours means that many people can survive.
Many years ago I canvassed as a council candidate and I remember meeting a lovely woman who had developed a heart condition. She was completely worn out because she had spent her whole life caring for her mother. Her mother had been well cared for and was still doing well, but the daughter had become almost an invalid due to the burden that she had undertaken. We must be sure that we prevent such incidents.
Another aspect that has not yet been mentioned are the number of children who are carers. When their parents are disabled, or are invalids, or have had an accident or an illness, a great burden falls upon the children. That is aggravated when there is a major language problem and the child is the only person who can act as interpreter for the family or parents. Usually the first person to notice the need for action is the schoolteacher who sees that the child is not progressing and is permanently tired. The alert schoolteacher will look around to see why that is happening because so many children take on a great burden at home. That applies even more today when so many families are one-parent families.
I was interested to receive a document produced by Carers Network Westminster in the Westminster council area. It estimates that there are 22,000 carers in Westminster. They say that surprisingly little is known about them because people do not call themselves carers; they say that they are a partner, a wife or a daughter. Often people do not know that services exist which can help them and they come forward only when they reach desperation point. The Bill will enable people to be discovered and to know about such facilities at an early stage. Many carers find themselves alone, unsupported and isolated.
Of course, all cases are not the same. Some people are born with a disability which requires care for a lifetime. Others may suffer from the consequences of a sudden road accident or a stroke which changes their lives overnight. We never know what will happen in those cases.
The leaflet from the Carers Network Westminster has an extremely interesting page which deals with ways and times to have a break from caring. It says:You might want to go away somewhere on your own or you might want to go away with the person you are looking after".When it refers to times, it says that thought should be given as to whether what is needed is a week or two occasionally but regularly or a holiday every year. I was very impressed by that.
There is a page on going away on your own or with the person you are looking after. It gives a list of places and mentions arthritis care holidays, the Carers National Association, the Holiday Care Service, the Winged Fellowship Trust and so on. I was surprised that such a document could be produced by a local carer's association. I am sure that similar texts must exist in other council areas.
762 But the merit of the Bill is that it relies not on a piecemeal effort whereby some provision may be excellent while other provision is hopeless. It provides a uniformity and creates an awareness of what exists and the fact that short breaks are available. That is extremely important and I have no hesitation in supporting the Bill.
§ 9.21 p.m.
§ Lord Murray of Epping Forest
My Lords, the case for providing respite care and particularly short breaks has been well made by the noble Lord, Lord Rix, to whom we are deeply indebted for this initiative. But the noble Lord is not alone in his advocacy. The case for respite care has been made regularly by the Government in the form of ministerial Statements, speeches, White Papers, Acts of Parliament and Department of Health circulars. I am sure that the point will be made again by the Minister when she winds up the debate this evening.
Even more relevantly, many noble Lords can speak from their own direct experience of caring or from that of their wives, as I can. They know about the strains which have been described so eloquently this evening which are imposed on carers and, as my noble friend Lady Dean reminded us, also on the families of carers.
The need for this Bill is great and nobody knows exactly how great. The General Household Survey suggested that about 1.5 million people are heavily involved in caring in the sense of providing more than 20 hours per week of unpaid care. But nobody knows the full extent of the unmet need because it is concealed by a veil of putting up with things and suffering. Carers just put up with the situation night after day and year after year.
As has been said, short-term care comes in a variety of forms ranging from care at home by paid or voluntary helpers to proper holidays. It includes staying with befrienders, residential care and proper holidays for carers and those for whom they care.
Some local authorities have set a marvellous example by providing their own facilities or buying them in from health authorities, from voluntary organisations or private agencies. There is a wide range of voluntary provision, some of which is good and some of which is tatty. I echo strongly what the noble Baroness, Lady Gardner of Parkes, said about the need for quality if those who care are to entrust their loved ones to care for a night or a week without being ridden with guilt and worry the whole time that they are supposed to be enjoying a respite.
Perhaps I may mention two examples of quality care. The first is the service provided by the Winged Fellowship Trust for severely physically disabled people. That is provided through purpose-built holiday homes and provides 6,000 weeks of holiday per year for disabled people and their carers if they wish to accompany them or to release their carers to have a completely separate holiday.
Another example is that provided by NCH Action for Children through its 28 schemes for children with disabilities. As has been said, that may include care for a few hours per week, for a weekend each month or for 763 a week's annual holiday in small residential projects. That is offered in ordinary homes, often in ordinary houses and in ordinary streets.
Therefore the provision of respite care is, and should be, varied and flexible: but the provision is, and should not be, very patchy. Some areas provide excellent services while others provide hardly any. It is interesting that the need for the provision of respite care services is well enough established to be accepted by the Audit Commission as a performance indicator for the effectiveness of local authorities. The 1994–95 figures for the number of nights of adult respite care provided show huge variations and have attracted the observation by the commission that:There are examples of Councils which provided ten times as much respite care as others. The public"—and this is the important comment from the Audit Commission—may question why there are such big differences".For example, in the London boroughs provision ranged from 120 nights per 1,000 adults in Brent to 17 in Hackney. Moreover, in the English counties, the figure varied from 167 nights in Lancashire to only 11 in Warwickshire.
In recent years there has been an overall, if patchy, expansion. But recently there have been two very worrying trends. First, there is some evidence of absolute reductions in the amount of respite care provided. Winged Fellowship, to give one example, logged a 3 a.m. call from a disabled lady in deep distress cancelling her booking and saying that her social services were unable to pay towards a respite break for her as had been done every year for a long while. The reason, of course, was continued pressure on local authority finances. The report from Scope last year on the disabled in Britain entitled, Counting on Community Care, gives further evidence in that respect.
The second related trend is the evidence given by Scope in the same report on the spread of and increases in charges for respite care. The report records the deep appreciation felt by disabled people for the provision of respite care, emphasising how that reduces their feelings of being a burden on their carer; and, indeed, a burden on their family.
However, the Scope report also comments that charging for respite care services can put them right out of the reach of many disabled people. The provision of such services should, in principle, be regarded as normal and should be free. Not only do disabled people and their carers typically have very low disposable incomes; but, also, we should not send out the message that the person being cared for is, or should be regarded as, a financial burden on his or her family.
Therefore, while we welcome the extension of respite care in recent years, we must recognise that the rate of progress and the patterns of provision and of charging vary very widely from one area to another. As I see it, one of the central purposes of the Bill is to establish that such provision is a normal part of a local authority's services and to ensure that the standard of provision is brought up to that of the best authorities.
764 Many local authorities deserve high praise for the positive attitude that they have taken in the face of all the financial difficulties confronting them. The Scope report that I mentioned showed that two-thirds of disabled people and their carers were satisfied with their respite care, and that most complaints were about the inadequacy of provision rather than about unsatisfactory experiences of services where they were provided.
However, it is becoming more and more difficult for local authorities to adopt pro-active policies and too easy for them to avoid having to meet the assessed needs of clients. Indeed, it is widely believed that some councils are keeping quiet about the availability of assessments, or they are delaying making appointments. It is claimed that some local authorities which provide short-term breaks do not publicise them properly, as has been said already.
It is right to give credit for the progress that has been made in this field. It is right to give credit to the legislation which has contributed to that progress. However, the provision is still patchy in relation to the extent and type of assessments, the provision of services by different local authorities, and the form and extent of their support. Assessments must be more than a process to allocate inadequate resources. It is now time to put flesh on the bones of this critical aspect of community care and, to use a figure of speech, to "beef up" the effects of the legislation, to generalise good practice, to bring backward local authorities up to the standard of the best or, at the very least, in the first place, to that of the average performers. This Bill is not about giving disabled people and their families something extra; it is a way of ensuring that they get the quite simple things which—as the noble Lord, Lord Rix, and others have said—the rest of us, individuals and families, take for granted: an occasional break.
§ 9.31 p.m.
§ Baroness Masham of Ilton
My Lords, it has been a hard day in your Lordships' House with a six hour debate on the worrying situation of BSE, and then two Second Readings. However, every day can be a hard day for a severely disabled person and his carer. If there is no gleam at the end of the tunnel by giving the people concerned short breaks, there will no doubt be serious problems. This Bill could illustrate that a stitch in time saves nine. The demands on each other can become a burden and the carer can lose patience and say things to the disabled person for which he feels guilty and reproaches himself for so doing afterwards. Without a much needed break relationships, apart from health, can break down.
I thank my noble friend Lord Rix for the work he and MENCAP have done on this Bill, and I thank my noble friend for bringing it to your Lordships' House and explaining it so clearly and with such humanity.
The British Medical Association and, I am sure, your Lordships who are supporting this Bill tonight are committed to the community care philosophy of enabling all people who have a disability to live as independently as possible in the community whilst maximising individual choice in the care received.
765 I think we would all agree that good quality day and respite care is of paramount importance. A full range of facilities should be available to facilitate choice and to cater for the varying needs of the people with disabilities and their carers who use the services.
I hope that the Government will support the Bill. However, I shall not be surprised if they say that it is not necessary. They may well say that these needs are already covered, but I shall try to explain how patchy services can be throughout the country, and the attitudes of professional people who assess an individual's needs, and provide the services which can differ considerably.
Last night I heard from a couple I was with that a relation of theirs who lived in the Cambridge area and had a chronic disability received respite care when it was needed. They were grateful but they added that the disabled person had worked all his working life paying taxes and national insurance and they felt that the care provided was due to him and his family. The disabled person happened to be a doctor. Further up the country where I live in north Yorkshire, a paraplegic lady who became ill and weak with ongoing diarrhoea was assessed by a community nurse who said that she could have a bath only once every two weeks. This lady lived with an alcoholic brother and her friend and neighbour had a bad back and could not lift her. When her GP returned from holiday, she was admitted to hospital where she died the next day from an undiagnosed perforated ulcer.
Assessments by professionals who are trying to save money and place their own jobs as a priority by not speaking out for the needs of patients are of great concern to provision of services in the community. What guidance and training is given on assessments? Should there not be a national standard?
Disability is so varied. There are so many complicated disabilities. If one looks at only one section of, say, neurological patients one will find a very long list. There are all the other disabilities such as the mentally ill, mentally handicapped, frail elderly with arthritic conditions, people with AIDS, and numerous other conditions. The subject of disability can merge into grey areas of who does what. Is it a health or social services responsibility?
The language of social services and health differs. In fact, some people find the modern day jargon difficult to understand. For example, with health an ill or disabled person is a patient; with social services they are clients; so perhaps they should be called "clipats". They are individual people with differing needs, but they can easily fall through the care net.
Recently I was told that there was a situation when a clipat needed washing. The social services came in to do the top half, and because the individual was incontinent the health service came in to wash the bottom half. What a ridiculous situation. But if rigid rules are adhered to, one can understand how that sort of thing can happen.
There is a need for flexibility. Different users have different needs. But a user may also wish to vary the type of help received from time to time. 766Many carers find themselves locked into a deal which provides services in a rigid way and is almost impossible to adjust"—so says the BMA.
If the person receiving care resents the request for respite services, it becomes very difficult for the carer to force the issue. Many carers seem to be in a catch-22 situation: either upsetting the person needing care or exhausting themselves, which sometimes ends up with hospitalisation for both parties.
Yesterday I was an invited guest to a lunch given by the Cheshire Foundation. When discussing the needs of disabled people, the guests were unanimous in telling the Cheshire Foundation to keep its flexibility and independence. With the contracting culture with which many voluntary organisations are now faced, they could be at risk of losing this independence if they are not careful. That could stifle some ingenious initiatives which derive from voluntary organisations.
Some years ago, the Spinal Injuries Association set up an emergency care agency where trained helpers in the needs of paralysed people with bladder and bowel problems can provide two-week help by coming into the person's home or going on holiday with them. Those are the kind of initiatives which grow out of the need seen by organisations with specialised membership.
I feel that the Bill is necessary to make providers look at the needs of the people for whom they are responsible. It would also make hospital trusts work more closely with the community. Some years ago many hospitals had young disabled units attached which were useful for short-term respite breaks, because they kept some beds for that purpose. Also, cottage community hospitals could be used for that purpose. But so many of those facilities have closed down as hospitals thought social services should be the providers. Now many of the hospitals such as the London Hospital have about 5 per cent. of their beds blocked by patients who cannot be discharged into the community because there is nowhere for them to go.
This is a need which the Government and hospital trusts should be looking at urgently. A country like Norway provides short yearly respite rehabilitation for their paralysed patients, to give them refresher courses in rehabilitation and to check that all is well. Our rehabilitation could be greatly improved with projects like that.
This short Bill could give the impetus needed to make service providers work more closely together to look at the needs of disabled people and their carers. I hope that it has a safe passage through your Lordships' House and that time is found for it in another place. The people who need respite care are the most disabled in our community, the ones we do not see out and about doing the London Marathon or competing in sport. They are often tucked away out of sight, out of mind. We must not forget them and their helpers.
§ 9.40 p.m.
§ Lord Astor of Hever
My Lords, I declare an interest as president of MENCAP in Kent as well as being the father of a child with learning difficulties. I can thus see the benefits of the Bill and the practical help it would 767 provide for carers of disabled people. As my noble friend Lord Swinfen said, it complements the provisions in the Carers (Recognition and Services) Act 1995.
It must be sensible to ensure that, when a disabled person is assessed, the need for short-term breaks—one of the basic components of community care—will be specified and, where possible, those needs will be met. However, I very much hope that putting one particular service compulsorily into the assessment would not stop another service being given.
Short-term breaks are the one service which most disabled people and their carers identify as being needed but which they cannot receive unless assessed and unless the local authority is able to meet that need. The breaks offer a number of advantages. The disabled person has a chance to build on everyday living skills such as handling money and cooking and the carer gets a welcome respite.
More and more people with learning disabilities are living in the community rather than in hospitals. Many people live in supported accommodation, but up to 100,000 adults with severe learning disabilities live with their families. As the noble Lord, Lord Rix, said, almost all children with learning difficulties in the United Kingdom live with their parents. That includes children who would have been kept in hospital some years ago.
I give as an example a neighbour of mine, a teenager who has cerebral palsy but is very, very mobile. That makes life very challenging for his parents who have not had a break together for 15 years. The availability of a short-term break would mean that they had a brief respite from the very demanding role they play, both physically and mentally, in their son's life—particularly as the needs of a young brother and sister also have to be considered.
For many disabled children there will obviously come a time when the parents, either because of age or illness, are unable to care for their child. The ongoing provision of short-term breaks allows a disabled person to experience life with a new carer. Such breaks could be of an enormous help to a disabled person. They could open many doors that are not otherwise available, such as sports and leisure activities. They would also provide a disabled person with the opportunity to meet people in the same situation and help him or her gain independence. I look forward to hearing my noble friend the Minister's reply.
§ 9.45 p.m.
§ Lord Ashley of Stoke
My Lords, it is inconceivable that the Government should oppose this Bill. They should have introduced their own Bill long ago. It is a dereliction of duty that they failed to do so. The Minister ought to have responded immediately this Bill was published. He ought to have said that, in principle, they accepted a very modest and necessary proposal. Therefore this evening, after this rather truncated debate, I expect a very positive, affirmative response from the noble Baroness.
Many Members of this House have received some splendid briefing material from the various organisations: from MENCAP, the Alzheimer's Disease 768 Society, SENSE, and many others; and we have heard the wisdom enunciated by Members giving their own opinions and extracts from those various briefs. It was embellished by the very moving experience of the noble Baronesses, Lady Dean, Lady Darcy (de Knayth) and Lady Masham, and the noble Lord, Lord Astor. That personal experience cannot be contradicted in any way. It is the basic proof of the need for this Bill. I do not propose to repeat the kind of material that we have received in the briefs. It has been explained so eloquently by so many noble Lords.
It may be helpful to try to anticipate what the Government will say and how they might respond. What sort of briefing have the Government received from their civil servants? It is so easy to take it for granted that the response will be intelligent. But it would be an awful mistake. Not the noble Baroness herself but the Government have given some very bizarre responses to some very good Bills.
Let us take, for example, the Disability Discrimination Bill. When that was first mooted, all of 12 and 13 years ago, Ministers in this Government said that there was no evidence of discrimination. Then, when the evidence was produced, they changed their tune. Then they said that all that was required was education and persuasion. When that was proved to be absolute nonsense, they said they would bring in their own Bill. They put forward an inadequate Bill. So we had bizarre responses to an excellent Bill brought forward in another place by individual Members. The Government's own Bill was unsatisfactory. Therefore we cannot be complacent and sanguine that there will be a good response tonight, although I am still hopeful.
Putting ourselves in the mind of those who advise Ministers, and whose advice will possibly be accepted, let us run through a list of possible excuses that could be advanced. First, they could say that the Bill is unnecessary. They have said that so often about various splendid Bills that have been introduced. All the evidence has been put forward by speakers on both sides of the House, and of course we all know that there is no legal right to respite care so it is obviously necessary.
Secondly, the Government could say that it is bureaucratic—that is their usual excuse for savaging constructive Bills. In fact, this Bill will reduce bureaucracy; it will enable disabled people to help themselves. Another spurious and feeble excuse to oppose good Bills is that they are badly drafted. This Bill is very well drafted, even if the Government can find one or two piffling holes in it. I am sure that the noble Lord, Lord Rix, who made such an excellent speech in introducing the Bill, will willingly consider constructive and positive, but not destructive, amendments. I must be careful what I say in this regard; I do not want to invite too many amendments from the Government. In another place, with the excellent anti-discrimination Bill, they brought forward a couple of hundred wrecking amendments. We do not want wrecking amendments; we want constructive amendments. I am sure the noble Lord, Lord Rix, will accept them if they are offered. Please, therefore, no objection to the drafting.
769 The other excuse often brought forward is that the Bill would be costly. As the noble Lord, Lord Rix, explained, along with other noble Lords, this Bill will actually save the Government money. The noble Lord is doing the Government a great favour by saving them money. They should thank him for bringing forward something which is helping this Government.
By a process of elimination I have worked out, in the best Sherlock Holmes tradition, that the Minister will accept and endorse the Bill. She should then award the noble Lord, Lord Rix, a medal to pin on his ermine. The Government could then perhaps offer him a little holiday. It could be called the "Rix short-term break", and they could thank him.
I am sure that the noble Baroness will give a helpful reply. The All-Party Disablement Group has long campaigned for this specific issue. It is therefore a matter, in this House and in another place, which genuinely has all-party support. Millions of disabled people will be watching the debate because they are extremely concerned to know what the Government decide. It is therefore a matter of public relations as well as humanity.
We know that carers are victims of their own dedication and they are the people who need help. But, as my noble friend Lady Dean said, it is not only disabled people and carers; it is also the families involved. I therefore wish to close on this note. I will not give more case histories because we have heard some marvellous examples and the last thing I want to do is to be repetitive. However, I am sure that this illustration will be appreciated by the Minister.
The Alzheimer's Disease Society sent me a copy of a letter sent to Age Concern by an old man. He wrote,I would very much like to know your feelings towards the Government's policy of 'Care in the Community'. My wife is a Parkinson and Alzheimer's sufferer and I am her sole carer. In the same street I have a friend, Albert"—and he gives his full name—who is in exactly the same situation. We often meet in the street and discuss our problems and how to go about tackling them, we are both the same age, 74"—just a little older than me, but only a little—and can therefore reminisce about the good old days when our dear wives would have been nursed by a band of devoted nurses with only a Matron in charge who never ever mentioned shortages of funds but just got on with the job of nursing the sick and elderly.However, a few days ago we were both going through a particularly difficult period and in our endeavour to find a solution we came up with the theory that the present situation was a ploy by the government to reduce the present population of OAPs by giving them the responsibility and therefore the worry of being carers. Having made this deliberation Albert said 'I must go the wife will be waiting for me' and with that he went indoors and dropped dead from a heart attack—how right he was. So I wonder if the carers have to look after the patients, who looks after the carers, nobody in Government seems to care a damn.Well I don't suppose it will be long before I see my old pal again, and no doubt we will take up the discussion where we left off but I don't suppose we will have any more influence than we have had already".That depends on whether he goes upstairs or downstairs. When he kicks the bucket, if he goes upstairs, he will have a great deal of influence with the Angel Gabriel—he can possibly intercede with the Government and try to persuade them to accept this kind of Bill.
770 I do not suppose the Minister will agree with this man and his friend Albert that the Government are trying to indulge in genocide. Possibly he gilded the lily a little. But I suspect that the dim view of the Government held by this man and his friend Albert will be lightened just a little if the Minister finds it possible to accept the Bill.
§ 9.56 p.m.
§ Lady Kinloss
My Lords, I congratulate my noble friend Lord Rix on his introduction of this Bill and I am very pleased to support him. There are many people who support the need for respite care. There are Members of your Lordships' House as well as organisations for disability. SENSE, the National Deaf-Blind and Rubella Association, has just celebrated its 40th birthday. It has grown from the work of two mothers who had children born both deaf and blind who established a support group to help each other and to press for support from the Government for research and services. SENSE is to be congratulated on the many projects it has developed over the years.
Clause 2 of the Bill states that "carer" has the same meaning as in the Carers (Recognition and Services) Act 1995, which came into force on 1st April 1996. A short-term break for family carers and the disabled person they care for is essential if the carer is to be able to care effectively and not collapse through exhaustion when an emergency could be created.
One of the most significant achievements of recent years has been the long overdue recognition of the work of carers. Carers in many cases provide the heart and soul of community care.
Clause 4 of the Carers (Recognition and Services) Act 1995 states the financial provision for the Act. The Government recognised the absolute necessity for legislation to require local authorities to assess and meet the needs of carers. Can the noble Baroness the Minister say whether extra financial help will be given to local authorities to meet these needs, as many local authorities find that financial pressure already forces them to restrict some services? As the noble Baroness, Lady Dean of Thornton-le-Fylde, said, the physical, emotional and financial stress which results from caring for someone who is deaf-blind or has any other disability is profound and cannot be underestimated. Would the noble Baroness the Minister not agree that it is the carers themselves who often underestimate their own needs?
Carers often feel guilty about needing a break away from their disabled son or daughter. They feel guilty about the burden and stresses which are placed on their other non-disabled children. They feel that the effect of caring for a disabled young person on siblings goes largely unrecognised. Often siblings perform a great deal of the caring functions in a family providing in their own way short-term breaks for their parents.
One source of enjoyment to all the family—carers and the cared for—is a holiday. MENCAP finds the attraction of a holiday is that it can often make use of ordinary resources, although there is need for special support and careful planning. The needs of other children in the family must not he overlooked. They 771 need a break from the obvious pressures that they will suffer, no matter how much everyone tries to minimise them.
SENSE also arranges holidays. In both cases volunteers, who are well prepared, are happy and willing to give their time to help with the holidays. We should all be truly grateful to these caring and kindly volunteers who give their time so willingly. I am sure that we all recognise the reluctance of many carers to agree that short-term respite care is advisable. There is also the question of the person being cared for not wanting their carer to leave them and showing reluctance to agree to go away even for short periods. This does in some cases create quite a problem and makes the carer feel even more guilty. I look forward to hearing what the noble Baroness the Minister has to say. Meanwhile, I wish the Bill every success.
§ 10 p.m.
§ Viscount Bridgeman
My Lords, I must first apologise to your Lordships for not being in my place at the start of the Second Reading of the Bill. The hour is late and I will not detain your Lordships. My noble kinswoman Lady Darcy (de Knayth) has given an excellent and eloquent account of REFRESH. There is, for example, a particularly disadvantaged section of disability: the quadraplegic responauts, by the very nature of their equipment, immobility and high technology, have a very limited number of places where they can be; very often, it cannot even be at home.
Among this section I know of several distressing cases where the spouse has been unable to take respite so the sufferer not only has his or her disability but also the breakdown of the family. For such people somewhere like Netley is absolutely indispensable. Here is a place which is fully equipped. It has all the breathing apparatus and technology to take the sufferer. It is not alone in having the flexibility to have the carer cared for and friends and relatives as well. As regards Netley, it is happy coincidence that it shares its premises with Winged Fellowship, which is a centre of excellence if ever there was one.
This is an example of the voluntary sector marrying up with the public sector. We need more of these centres for this class of disability. I very much support this Bill. I hope that it will have the effect of bringing into line less conscientious authorities, to which reference has been made by several noble Lords. The Bill will have the effect of enhancing what can only be described as a partnership between carer and cared for, and improving the standard for which we all look. I very much hope that your Lordships will give the Bill a Second Reading.
§ 10.3 p.m.
§ Lord Addington
My Lords, when winding up there are two things which one begins to dread. In conversation with a friend I predicted that both would happen as regards this Bill. The first is that one would have absolutely nothing original to add to the debate and the second is that any anecdote that one intended to use had already been used or had been made totally superfluous by earlier speakers.
772 Both those things have happened today. For once, I do not mind very much for the very simple reason that it all had to be said, and said often. We are dealing with something which goes to the basis of economic and human dignity. Economically, the carer, the family, the family support unit, the partner, the child and the parent are vitally important to ensure that people get the correct, loving care they deserve if they have a disability.
The second factor is that these people save us vast amounts of money. In purely economic terms, it would be insanity for the Government not to support this very well drafted Bill. When one can read through a Bill and know exactly what it means and the terms it is using, that is a very well drafted Bill. Legal experts may disagree with me on that but I suggest that we should disagree with the legal experts in that case.
We need this Bill. It gives us exactly what we want. It provides us with the opportunity to keep a caring efficient system in operation, a system which the Government do not have to invent or create. They merely give maintenance to a system. In terms of looking after the public purse, it provides for exactly what we have heard for years from the Government Benches; namely, that we must not waste public money. I shall not repeat the figures but it costs very much less to provide the appropriate breaks and respite, and to make sure that we have sufficient units to provide the care, if nothing else, than it does to place people in institutions. I am sure no one can argue with that.
We know through experience in other fields—for example, the field of educational needs—that unless one says, "You shall do this", it will not happen across the board. Even when one does say that, it takes a long time before anything like an appropriate system is in place. I am afraid that that is a sad fact. Such measures have to be pushed through. Decisions might be made which give a low priority to such matters or take into account prior commitments. Unless a legal requirement is made to drive through this kind of measure, it is not realised. So we have a situation in which there is an economic imperative to give that type of support and it will not take place unless someone drives it forward.
There is a more appropriate subject and another way of looking at the matter; namely, the human level. On that level such support and care is absolutely essential, for the simple reason that a quality of life is given to the carers and in many cases to those they care for. If one person is utterly dependent on another, and that other person is locked into a situation where he (or she) cannot get away, it results in very unhealthy interaction between them. When all is said and done, man is a social animal. We need other people around us to function properly, if nothing else. Surely it is not healthy at any level for two people to be so close and dependent on each other.
There is a depressing number of cases in which people who find themselves in positions of care end up, through frustration, as abusers. That might be an extreme form of reaction but certainly it can arise in a situation where conversation becomes utterly monosyllabic, is not designed to meet a need and there 773 is no interaction. When one person cannot go out, the carer and the person for whom they are caring are tied in together. Surely the Government should do their best to address such a situation. Allowing people to have an occasional weekend for themselves, or even an afternoon or an occasional two week holiday, is vitally important for the health and well being of both carer and cared for.
Stress and overwork are regarded as damaging to health, and are probably just as deadly as cigarettes. Stress probably kills as many people and puts as great a stress on the heart as the demon weed. We must allow a break from such stresses. We must stop people being pushed into a very bad environment. Surely we can give our wholehearted support to the Bill.
Every speaker so far in the debate has supported the Bill. I support it and my party supports it. Indeed in Section 6.2.4 of one of our policy documents entitled A Caring Society there are headings: "Access to information", "Support and respite care" and "Partnership". We support those measures. I very much hope and expect that the noble Baroness, Lady Jay, will say that her party gives a similar commitment. I invite the Government—though I should be even more grateful to hear something more tangible tonight—to join in and do something about the situation. I hope that the Government will say that this is a measure that they must support. It is necessary because, with the best will in the world and all the legal support at present available, such provision is not guaranteed and is not a right.
As many noble Lords who have spoken in the debate have said, unless one has a right and people are told that it is something to which one is entitled, it will not be obtained. Indeed, unfortunately, there will still be people, I suspect, who think that they can carry on by themselves and stoically drive themselves into the ground. I invite the Government to support this measure not only because it is just but because it will save them money. What more could anybody conceivably want?
§ 10.10 p.m.
§ Baroness Jay of Paddington
My Lords, I too thank the noble Lord, Lord Rix, for introducing this short but significant Bill. I apologise profusely to him—and indeed to other Members of your Lordships' House—for not being in my place when he began his remarks. I am afraid that I underestimated the time when what might be called the third House would begin tonight. I am also sorry that the noble Lord has drawn the short straw on timing. I am sure that had we been considering this Bill earlier in the day he would have been supported, not only by the authoritative and interesting speeches that have been made from every corner of your Lordships' House, but by a large number of people. After all, this is a central issue for anyone who is involved in any type of care for another person. Many of your Lordships' debates on issues as diverse as mental health, childcare, the young disabled and frail elderly people often include discussion of the need for respite care, or short-term breaks as they are now called.
774 As is customary with a Private Members' Bill, this evening I speak from the Front Bench in a personal capacity. However, we on these Benches very much welcome the proposals of the noble Lord, Lord Rix. We believe that the Bill usefully complements and extends the Carers (Recognition and Services) Act 1995 which was introduced in your Lordships' House by my noble friend Lord Carter and in another place by my honourable friend Mr. Wicks.
With hindsight, I agree with my noble friend Baroness Dean that perhaps the provision for short-term breaks should have been explicitly included in that earlier Act. Neither the Carers (Recognition and Services) Act 1995 nor the earlier disabled persons Act includes entitlement to receive particular services. Needs must now be statutorily assessed, but services to meet those needs are provided only at the discretion of each local authority. Importantly, as has been pointed out by many noble Lords who have spoken tonight, sometimes services that are available are not adequately publicised. However, under the new proposal the assessor must ask whether short-terms breaks are needed, required or wished for by the carer or the cared for.
The noble Lord, Lord Rix, and many other noble Lords who have spoken tonight have painted a graphic and moving picture of why the need for this particular service is so great and well established. The noble Lord, Lord Swinfen, referred to the survey of the Carers National Association. Although I recognise the concern of the .noble Lord, Lord Addington, about repeating points made earlier in the evening, I believe that the points revealed by that survey bear repetition. The survey showed that although 73 per cent. of carers had occasional breaks 62 per cent. of those regular breaks lasted for only half a day or less, and 20 per cent. of those who were caring never had a break at all.
My noble friend Lord Murray of Epping Forest pointed out the ways in which patchy provision in different parts of the country made carers' lives very difficult, depending on where they lived. That point was also drawn out by the examples provided by the noble Baroness, Lady Masham. The situation may often be worse where people live in rural areas and local help may be difficult to find and families and friends may be separated by long distances. I, and I am sure other Members of your Lordships' House, well remember the disturbing survey by the National Federation of Women's Institutes that we debated about two years ago. It revealed that among their members living in the countryside fewer than half the carers had even an occasional one week break from their caring roles.
The Kent Association for Respite Care has identified the main reasons why people need short-term breaks. They include such obvious factors as needing a break from each other for both the carer and the cared-for; getting out of the house; having a holiday; having an opportunity to try something new or to meet new people and having an opportunity to unwind and to pursue new interests. Each of those needs could be fulfilled in the different ways mentioned by noble Lords. Noble Lords have referred to traditional residential respite care. Sitting services at home have also been discussed, as 775 has the provision of overnight care one night a week for a disabled child or an elderly person. There is also the much longed for two week annual holiday. As the noble Lord, Lord Rix, said, all of those can work towards a more ordinary life for both the carer and the cared-for.
I look forward to hearing how the Government will respond to the calculation of the noble Lord, Lord Rix, that the Bill will save public money. We usually assume that there are bound to be resource constraints on any new services. Noble Lords who took part in our deliberations on the Carers (Recognition and Services) Bill will remember that those who spoke from these Benches were concerned throughout that the assessments offered would not become empty promises because local authorities could not afford to fund the provision properly. It was generally agreed that in those circumstances there would be the worst of all situations because false expectations would be raised, which would be a cruel irony for the vulnerable people concerned. The same problems concern us with this Bill. It is a particular problem today when local authority budgets are under such unprecedented stress.
My noble friend Lord Murray of Epping Forest referred to the important and useful survey last year by the Scope organisation. One of its more significant findings was that it recorded that where hard-pressed local social services departments found that conscientious informal carers were in place, they were inclined to withdraw statutory services—and certainly not to extend them. It seems that however optimistic the noble Lord, Lord Rix, is being in his financial calculations, additional burdens might be placed on local authorities if the Bill becomes law as it stands. It seems to me that without additional central funding local authorities might well seek to marginalise their commitment to carers and those for whom they care, thus making the provision somewhat inadequate in their recognition of the letter, if not the spirit, of the law.
However, I do not believe that we should accept that all of the suggestions that have been made tonight about the ways in which people could be helped to achieve short-term breaks would incur vast financial implications. It is also true that many of the simple measures that have been proposed this evening could be achieved as easily by good management and good administration as by large sums of money.
Having raised perhaps somewhat pessimistically the resources caveat, I should nonetheless like to conclude by re-emphasising the crucial importance of these proposals and our welcome for them. The noble Lord, Lord Rix, in his introduction, my noble friend Lady Dean, and others have recounted the enthusiasm among many of the voluntary organisations working in this area for these measures. I echo that from my personal experience. My most recent example was attending the annual general meeting of the Parkinsons Disease Society earlier this week where senior officials said that their highest priority for their members and for the organisation was to achieve better short-term breaks.
The Bill could add significantly to the existing legislation in this area. As the noble Lord, Lord Addington, said, every speaker this evening has 776 supported the Bill. I very much hope that the noble Baroness, Lady Miller, will follow suit. Indeed, my noble friend Lord Ashley trenchantly dismissed the possibility of opposition from the Government Front Bench. After all, the aim of the Bill is to achieve the extraordinary in making the lives of carers, their cared-for and their families more ordinary. That is a very important goal. I hope that the Minister will be able to offer the noble Lord, Lord Rix, government help and assistance in ensuring that his Bill rapidly reaches the statute book.
§ 10.20 p.m.
§ Baroness Miller of Hendon
My Lords, I congratulate the noble Lord, Lord Rix, on his industry in introducing the Bill. That is entirely consistent with the concern that he has always shown for the interests of the disabled. I thank all noble Lords for their excellent and thoughtful contributions to tonight's debate.
I am pleased that there is support for the principle of community care and recognition of the successes which have been achieved. That has been shown by our monitoring and has been confirmed by the independent Audit Commission. I am grateful in particular to the noble Lord, Lord Murray, for acknowledging some of our successes. During the past few years, local authorities have made great strides, as my noble friend Lady Gardner said, but we know that more needs to be done. Our community care development programme, "Building Partnerships for Success", addresses that. Its primary theme is improving outcomes for users and carers. That means improving assessments, services and provisions. Having listened to the noble Baroness, Lady Masham, that is apparently necessary in many areas. As the noble Lord, Lord Murray, said, bringing standards up to those of the best is essential everywhere.
None of us here today can doubt the value of short-term breaks for the carers of disabled people and the parents of disabled children. Many of us here either are or have been carers or know someone who has caring responsibilities. As the noble Baroness, Lady Dean, said, caring for a disabled person can have an impact on the whole family. I know that only too well because for the last 10 years of my father's life he suffered from Alzheimer's disease. He moved in to live with my husband and myself, as did my mother. The strain upon my mother, my sister and myself cannot be measured, in particular as we saw someone whom we loved dearly suffering in such a way.
Often those responsibilities are taken on willingly; but, as my noble friend Lord Swinfen reminded us, they can create stress and tension, especially when the need continues over a long period, often for many years. It is vital that both the disabled person and the carer receive the type of support that they need. I agree with the noble Lady, Lady Kinloss, that often carers themselves undervalue the work that they do.
It is also vital that carers and parents are reassured that the short-term break provides care of a high standard and promotes the wellbeing of the people for whom they care. They need to be certain that the person not only enjoys the break and returns happy but perhaps 777 also benefits from experiencing the stimulation of a different environment. That reflects a most important principle that a short-term break must be of value both to the disabled person and to the carer.
As far back as 1987 the Social Services Inspectorate reported in Care for a Change? on an inspection of short-term care and emphasised the potential of providing a more effective service for the disabled person. That was later enshrined in guidance on standards for short-term breaks issued by the Social Services Inspectorate in 1993. The guidance underlines the importance of making sure that the short-term break is part of a total plan of care to help the individual and that in particular the change of carer is handled sensitively.
The Scottish Office has recently issued guidance which seeks to assist in the planning and provision of respite care services and to encourage local agencies to work together with other providers to develop new and flexible models of care which meet the needs of both users and carers. A local authority circular in 1992 on social care for adults with learning disabilities refers specifically to short-term care.
Local authorities have responded positively to the need to develop good quality respite care. Sunderland Council, for example, has replaced a large hostel with two new facilities to provide active, holiday breaks for adults with learning disabilities. One is a seafront hotel which has been refurbished with ensuite facilities. Guests enjoy an active week based on their individual needs which might include day trips and social events. Some more active weeks are specifically provided for 18–26 year olds. There is also a country bungalow which is run on the same basis for people with more complex, multiple disabilities.
The voluntary sector has contributed many valuable initiatives. Penumbra Respite Care provides guest house accommodation with appropriate support for people with mental health problems.
My noble friend Lord Swinfen has drawn our attention to an important fact: where carers receive the support that they need, they are better able to continue caring. Support for carers is a key aim of our community care reforms. Local authorities are aware that a failure to support carers often results in a breakdown of the caring relationship, resulting in a disabled person having to move to expensive residential accommodation.
The noble Lord, Lord Murray, suggested that respite care services should be available free of charge. The legislation requires that the charges levied must be reasonable. The person concerned can make representations if he finds the costs difficult to meet.
The Government have recognised, through additional funds, the importance of respite care. An extra £20 million in 1994–95, rising to £30 million in 1995–96, has been made available for respite and day care as part of community care funding, and 97 per cent. of authorities have reported to us that they are able to offer better support for carers.
778 We have also funded a range of initiatives which are of value to those working in the field. This includes the funding of a research study into respite care services for confused, elderly people which was published in 1994 as Better for the Break.
En November 1995 my honourable friend the Under-Secretary of State for Health opened a conference at which the Council for Disabled Children launched a report called Positive Choices. This document, funded by the Social Services Inspectorate, is a summary of what service providers need to know in order to improve respite care services for children.
We have supported the development of family-based short-term care through funding to Shared Care UK, and most recently funded it to produce Stronger Links—A guide to good practice for children's family based short-term care services.
Therefore, the Government have paid particular attention to the need to develop opportunities for short-term breaks. For what can be more valuable to carers than to know that while they are getting a much needed break, the people for whom they care are being properly cared for and happy? No one can answer this question better of course than carers themselves. There have been many examples of how much the carers have benefited from the relief of having time exclusively for themselves, knowing that all is well with those they normally care for.
There are cases when some domestic emergency occurs such as when a pipe bursts followed by a period when emergency care is needed. There are some schemes where a carer can ring direct for a stay of one to four days—and for longer stays something can be arranged by a social worker.
People need to know that help is available when they need it and how to get hold of it. I so agree with the noble Lord, Lord Rix, my noble friend Lord Swinfen and the noble Baroness, Lady Darcy (de Knayth), who all raised that point in their speeches. They also like to have some control. One authority which I heard about had allocated a respite care bed to a local carers group. They then arranged between themselves who should use it and when. Planning is also important. Some disabled people find it very helpful to be able to book breaks throughout the year and then reserve a place in a residential care home for a fixed period of time on a regular basis. For older people coping on their own with, for example, the effects of severe arthritis, a regular break where they are looked after and can rest or relax can be of enormous value.
Of course, needs vary and, as my noble friend Lord Swinfen pointed out—as indeed did the noble Baroness, Lady Dean of Thornton-le-Fylde—what suits one person will not necessarily suit another. Short-term breaks have to be provided in a variety of ways. I have been struck by the variety already available, the imagination with which some services have been developed and the way in which disabled people and their carers have been involved in planning. I thank my noble friend Lord Bridgeman for drawing my attention to such an innovative scheme. I fully agree that the 779 voluntary sector, in co-operation with health and local authorities, has an important role in providing short-term breaks.
Short-term care in families is tremendously valued. The idea is that the family with a disabled adult or child is linked to a family which has been assessed as appropriate to provide short-term "foster type" care and is paid by the local authority do so. Time spent matching families with people using the service, and careful preparation of both, seems to pay off. Carers praise this sort of care. Such schemes tend to be those most favoured by parents of disabled children. An example of this can be found in Tower Hamlets where Barnardos runs a "Families Together" project which offers family-based respite care. It is widely used by all the different ethnic and cultural groups in Tower Hamlets and is seen as accessible, culturally acceptable and consumer friendly.
Sitting services provided in the home can also be of enormous assistance. Crossroads Caring for Carers provides valuable sitting services in many areas of the country. It is also encouraging to see the development in some places of night sitting services which can enable carers to go to the cinema, visit friends, go out for a meal or just get a good night's sleep. A mobile respite care service run by the paediatric community nursing service in Nottingham provides a 24-hour bookable and emergency respite care service in their own homes for families who have a child with a life-threatening or life-limiting disease.
I have mentioned a few examples of good services. However, I must disagree with the noble Lord, Lord Addington, when he says that local authorities will not provide respite services unless they have a mandatory obligation to do so. Of course we know that the right kinds of services are not available everywhere which is why we have taken, and will continue to take, steps to encourage the development of good quality, flexible short-term breaks. However, this is a matter of practice, service development and provision. For, worthy though the intention of the Bill certainly is, the Government do not believe that it is the right way to improve the provision.
In the case of both community care and children's services, access to those services is through assessment. That is underpinned by a complex framework of legislation which includes the Children Act 1989 and the National Health Service and Community Care Act 1990. The question of assessment for carers is covered in the Carers (Recognition and Services) Act 1995, which came into operation less than three weeks ago on 1st April 1996.
The noble Baroness, Lady Masham, asked about guidance on assessment. The Department of Health issued a policy and practice guidance on assessment in preparation for the community care reforms. This makes absolutely clear that assessment must be needs-led, involve both the user and the carer, and promote individual choice and self-determination. It emphasises the need for flexibility and for sensitivity.
780 The noble Lady, Lady Kinloss, asked about resources for the carers' Act. The Carers (Recognition and Services) Act enshrines in legislation what is already existing good practice. As good practice there should be no significant cost to an authority which has been following this good practice. The noble Baroness, Lady Jay, asked why the carers' Act does not give a right to services. This Act has placed on the statute book what is already good practice which the authorities should be following. It reflects the fact that carers are best supported by the provision of services to the person they care for. It would be confusing and indeed wasteful to create a raft of new services for carers which essentially duplicate the services already there for the users. The challenge to authorities in implementing the Act is to listen to what carers have to say about assessment and improve practice without increasing bureaucracy.
My noble friend Lord Astor of Hever said that he was attracted to the idea of mandatory respite care. However, authorities already have comprehensive powers to arrange for short-term breaks under existing legislation. Section 2 of the Chronically Sick and Disabled Persons Act 1970 imposes a duty in certain circumstances to arrange services, including the provision of practical assistance in the home and arrangements to help the disabled person take holidays.
Powers to provide breaks in a residential setting are to be found in the National Assistance Act 1948 in respect of adults, and in the Children Act 1989 in respect of children. A disabled child is a child in need for the purposes of the Children Act, triggering a duty on the part of the local authority to provide services for the child and his or her family. A specific power is given to authorities to meet this duty by means of assisting the child and their family to have a holiday.
We believe that this Bill would be contrary to the ethos of both community care and children's legislation. This seeks to encourage a holistic and comprehensive approach to assessment which is needs driven not services-led. By identifying a particular service and requiring assessment to identify the need for the service the assessment process is likely to become service driven again, undermining important principles in the community care reforms and the Children Act. Those principles are of flexibility, tailoring the services to individual needs and not to a rigid pre-set menu. And why an assessment for just this service? Why not for other services? Obviously an assessment which fully considers a person's problems and circumstances will take account of the need for a short-term break.
Furthermore the Bill is confusing. It is not clear who is doing the assessment. Phrases such as "health and social needs" have no meaning in terms of the cited legislation. There are also problems with the Scottish legislation cited and the attempt to apply the Bill to Northern Ireland. To introduce yet another assessment is an overly bureaucratic and expensive response to what is essentially a question of good practice. The Bill is therefore likely to he confusing to practitioners and so will not improve the services provided.
781 The Government have shown their commitment to carers by their support of the carers Act and their responsiveness to service users to have greater control over their lives by the introduction of the direct payment Bill. After only 17 days in force we have yet to see the impact of the 1995 carers Act or the implementation of continuing care guidance which addresses the question of health service responsibilities for respite care.
The noble Lord, Lord Rix, raised the question of non-implementation of the 1986 Act. Most of the major provisions of the Act have now been implemented bringing substantial benefits to disabled people and their carers. The requirements of the non-implemented sections of the Act are now to a large extent reflected in the new arrangements.
At times of change and development we do not wish to place additional administrative burdens on local authorities which, frankly, will not have the effect of improving services. The Government know how important respite is. We know that it can really enhance the life of the disabled person and their carer. The Department of Health through guidance and development work recognises this. Legislation already exists for assessment and service provision. The Bill, as I have said, runs contrary to the philosophy of community care and children's legislation.
We do not believe that this legislation is necessary to achieve what the noble Lord, Lord Rix, is asking for, and, having listened to all noble Lords, what we all hope and believe will come. We believe that the existing framework will undoubtedly work.
§ 10.42 p.m.
§ Lord Rix
My Lords, introducing a new Bill into this House reminds me of presenting the first night of a new play at the other end of Whitehall—which certainly achieved more laughs than this evening. It reminds me of theatrical terms in other ways. I am now in what is known as my fifth side-splitting year in your Lordships' House. I have attended many debates, in particular on disability; and in that time I have never heard such unanimity expressed from all sides of the House on a simple Bill. We have had 12 star performances, if I may so say, excluding my own, from all sides of the House. The 13th performance, regrettably that of the Minister, began like a star performance. Indeed, when she told the story of her own parents, one began to hope that this reflected the Government's response to the Bill: that the obvious need for carers to have short-term breaks be written into legislation.
782 However, regrettably the script was written otherwise, and composed by people who have been taking lessons from the great comic performance of the evening—that of the noble Lord, Lord Ashley of Stoke. He listed exactly the contra-indications given by the Minister as to why the Bill should not be accepted. Possible excuses he gave were these: it was unnecessary; it was bureaucratic; it was badly drafted; it was too costly; there was no need; guidance, and so on, had already been given to all local authorities through various Acts; it was contrary to the ethos of community care and it would become service-driven as opposed to needs-driven, etc. All that we heard from the noble Lord, Lord Ashley of Stoke, earlier in the evening. Word for word, those excuses came from the Minister at the end of the debate.
I find it extraordinary and unacceptable that that should be put forward by the Government as a reasoned excuse. I can only hope that the Bill will now be read a second time and that the Government will have the good grace to go away, read Hansard and look at the many varied reasons given as to why the Bill is necessary and the many opportunities which it would make available to people. We know that there are many schemes around the country; we have all said so. We want to ensure that the schemes are made obligatory for carers and people who are disabled and cared for.
I trust that the Government will have a change of heart before the Committee stage, if the Bill succeeds in obtaining a Second Reading, and will come forward with amendments to the bad drafting that they indicate, or something similar, but otherwise accept the Bill. Without further ado, I repeat the words of the noble Baroness, Lady Jay. She said that the Bill seeks to give ordinary people with special needs and special responsibilities more ordinary lives. I should have thought that that was a perfectly reasonable demand or request to the Government. I commend the Bill to your Lordships and ask that the House give it a Second Reading.
On Question, Bill read a second time, and committed to a Committee of the Whole House.