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§ Mr. David Cameron (Witney)I am grateful for the opportunity to debate this important issue, and I am pleased that a Health Minister will respond.
In the early years, the national health service and social services are the vital support services for families with disabled children, especially for people with very severely disabled children—the group on which I want to focus. My interest in the subject was first aroused by a very brave woman, Tussie Myerson, who lives in a neighbouring village in my constituency. She has a severely disabled 12-year-old daughter, Emmy, who is quadriplegic and has intractable epilepsy, asthma, severe learning difficulties, and recurrent infections that often require hospitalisation.
Tussie has fought hard to get the support that she needs to care for her child and to try to maintain some sort of normal family life. While trying to help her, I suddenly found myself perhaps not in the same boat, but at least trying to navigate the same sea. My wife and I have a son, Ivan, who is now 18 months old. He has chronic epilepsy, cerebral palsy, and severe developmental delay. One never knows about the future, but he is unlikely ever to be able to walk or talk. He is a magical child, with a smile that can make me feel like the happiest father in the world, but anyone who has experienced the elation of having a child and then the agony of watching them suffer and finding out about their disability will say that there is also a huge amount of pain.
It is very dangerous for a politician to say that one must experience something in order to understand it. By and large, I do not believe that, but there is something about being thrown into a situation that is so totally unexpected and having to face all the difficulties of coping, all the worry about the suffering of one's child, all the hospital visits, the different treatments, the hopes raised and then dashed, and everything else one experiences that makes one think about the issue with great intensity. Many other parents of disabled children have come to my surgery, both before Ivan was born, and especially since then. I am still a beginner in getting to grips with the wider issues—there are many in this place who are more expert than I but—much of what I have heard and read of others' experience jumps off the page because it fits so closely with what I have found and how I have felt.
Let me be clear; I am saying neither that the way in which we handle disability in this country is a disaster, nor that the Government are getting it all wrong. The care that my family have received through the NHS has, by and large, been superb, and many others would say the same. The help provided by social services can be much more variable, but the staff are good people struggling to do their best and to help. However, much more needs to be done, which is why I requested this short debate today.
As the Minister will know, there is a growing number of severely disabled children in this country. According to Mencap, there are 210,000 children and adults with severe or profound learning disabilities in England, of whom nine in 10 children and six in 10 adults live at home with their family. Those last two figures should be 97WH stencilled on the Minister's desk, because the vast majority of their care is provided not through the NHS or social services, but through families and carers. I am not talking about my own family: I can afford to get a great deal of help, and we get it. However, others cannot afford it, and they are, quite frankly, heroes and heroines who are doing an often impossible job. The disabled children about whom I am speaking are probably the most vulnerable people in our society. Many need support 24 hours a day, seven days a week, 52 weeks a year.
There are two fundamental points to make in this debate. The first is that support for families, especially that provided by social services, needs to keep up to date with advances in medical practice. More disabled children are surviving birth and more are living longer—a fact that all Departments need to register. The ACE—aiding communication in education—centre in Oxford, which I visited recently, does amazing work in developing new equipment and technology to help the disabled, but it receives pretty much the same funding today that it did eight years ago. Most children's hospices get very little support from Government funds. Helen house—also in Oxford and visited recently by me—gets none, yet it has never been so busy. It is building a new home, Douglas house, for those with life-ending disabilities or conditions who survive into their teens and beyond. The number of such people has grown remarkably, and policy needs to reflect that fact.
The second starting point is that because families bear the brunt of the work, there is an essential unfairness in the system. Often those who do the most receive the least help. The family of a child with cerebral palsy came to my surgery: they were receiving only one hour of support a week, because they were a magnificent family coping as best they could. As the truly excellent Audit Commission report puts it,
The services that disabled children, young people and their families are offered depend largely on where they live and on how hard parents are able to push.That cannot be right. Some parents who cannot cope inevitably throw in the towel, and the state is then left with more children in care and a huge bill. The cost of looking after a severely disabled child in residential care is often more than £100,000 a year, yet a fraction of that money, if delivered in the right way, could help a family to cope at home.What needs to be done? Here comes the shopping list, I am afraid. More priority needs to be given to helping families with disabled children. As the Audit Commission puts it:
Services for disabled children are still Cinderella services. Their level of priority remains low, with other priorities experienced as more pressing.That means money. I come back to my point about advances in medical science. Investment in the NHS over decades means that more of the children in question survive, and that they live longer—but has there been a corresponding increase in support? Of course not. If we are going to give those children life, we must also give them and their families decent lives.I am not a fan of ring-fenced funding, because I believe in local democracy and local discretion. However, we have a problem. Not unnaturally, social 98WH services departments are—rightly—most concerned about children at risk of abuse, but as a result disability services can become a Cinderella service within a Cinderella service. That is certainly not right. More planning and greater understanding of the numbers are essential in social services departments. If we do not know how many children we are trying to deal with, service provision will never match up.
I beg the Government to aim to achieve some simple goals. They have produced good documents, like the new Green Paper and the national service framework, which I am sure the Minister will mention, but a clear focus is needed on a few areas that would make a real difference. I suggest two. The first is ensuring that parents have clear rights and understand them. Trying to find the right services for a child is like trying to shop in the high street in a blizzard: people know that there are doors they are meant to open and places they are meant to go, but it is all desperately unclear. When events turn lives upside down, people need to know straight away what benefits and services are available and the level of service they should expect. Services should lock on to them like a laser-guided missile as soon as their child's needs and their own needs are assessed, yet six out of 10 families have never had a carer's assessment.
If the relevant rights were set out clearly, and were nationally available and well understood, the problem of the lack of ring-fenced funding would be much less serious. Instead of national rights, however, we have locally set eligibility criteria, and in recent years those criteria have often been tightened. It is hard to blame local social services departments for setting them, given that they are trying to provide services out of very tight budgets. In Oxfordshire, substantial cuts have recently been necessary because the standard spending assessment is so low. However, the lottery of provision that results is simply not good enough.
The second simple goal is respite. One thing agreed on by almost everyone I have spoken to who cares for a disabled child is that they desperately need a break. I think that Mencap's "Breaking Point" campaign is one of the most persuasive and well targeted campaigns that I have ever seen. Mencap has found that eight in 10 families caring for disabled relatives are at breaking point, yet six in 10 get no short break service at all, or one that is so minimal that it does not meet their needs, and three in 10 say that they had less in the way of breaks last year than the year before because of reductions in services. Different ways of delivering breaks suit different people. For some, respite consists of care in a residential centre; for others, it means a carer going to work in the home so that the parent or usual carer can get away for a bit. Whatever the method, breaks there must be.
Parents cannot but be struck by the difference between the amazing care within the NHS and the often rather sketchy care that they receive from social services once they are outside the NHS. One minute, their child is in hospital having magnetic resonance imaging scans, being cared for by nurses and visited by speech and language therapists and physiotherapists, and so on; the next minute, the family are back at home trying to cope, often alone. Better integration of health and social care is essential.
99WH The teamwork model, with a consultant leading one's case and all the other specialties attached, must be the right way forward. That is what I have experienced at St. Mary's hospital in Paddington, and I praise it. Not all hospitals can deliver that model of care, however, and they should be able to. Easy access to hospital is essential. My family are on our 14th hospital admission in less than a year, and doctors and nurses have told me of many other similar cases, so our experience is not untypical. All too often, however, parents with children who frequently need to be admitted to hospital wait for hours in accident and emergency, sometimes in the middle of the night. Can the Minister say what more can be done to give more automatic access to wards to such people?
A further issue is waiting times for social services. Everyone talks about the same things: the wait for an assessment, the wait for a decision, the wait to see if funding can be put in place, and the wait for equipment that often no longer fits by the time it arrives. The Audit Commission's study contains a powerful quotation from a mother, who says:
Once you get a service it's usually quite good, but the problem is getting it. The first problem is knowing about it. The second problem is persuading someone you need it. And the third problem is finding someone who can deliver it".I have one or two further suggestions, the first of which is about waiting times. When a family are close to breaking point, it is an emergency, but there does not seem to be anything like an emergency service. Almost anyone—a nurse, a carer, someone to help—would be better than nothing for some of the parents who have come to my surgery in west Oxfordshire. They ask, "Can't the assessments, the form filling and all the bureaucracy be short-circuited just to throw in someone who could actually help for a few nights, or even a few hours?" It is difficult to answer them, so we need to consider the issue closely.Secondly, although I pay tribute to the Government for trying to move ahead with the idea of individual payments—giving families the money and letting them decide how it is spent on the services that they need to cope at home—I understand that the idea has not taken off as fast as they hoped it would, possibly because of the bureaucracy involved. I wonder whether the Minister has considered the idea of personal trusts, which MacIntyre Care, among others, is proposing. The concept is quite straightforward. Disabled people have around them a network of relatives, carers and friends who can be trusted to act on their behalf. Creating a personal trust involving those people would ensure that much of the state bureaucracy would not be needed, because the trust would have to provide a full account of the money raised and the money spent. Setting up a trust would make it possible to access extra support from the community and other organisations. I commend what MacIntyre Care has said and can give the Minister details if he wants to consider the idea, as I hope he will.
I apologise that, with my passion for the subject, I have thrown off ideas like sparks from a lathe, but I plead with the Minister to have one guiding principle—to make the lives of families who are struggling to cope with severely disabled children easier. When I spoke to our carer this morning, she gave me another idea. She said, "Why do we wait until severely disabled children are two years old before giving their parents disabled 100WH parking badges?" Most of those kids cannot have immunisations because of their illnesses and cannot go on public transport, but they have appointments all over the place for services that I am sure the Minister will tell us about. It may be a small thing and, as I have said, there is much to do, but the Minister is a sensitive soul and will want to start somewhere.
Before asking the Minister to reply to this debate, I ask him to recall the last time that we faced each other across this Chamber, when I asked about group B streptococcus infections. In answer to an intervention from me, he kindly said that he would entertain a delegation of parents who have lost children to such infections. He said that we could pick a suitable time to see him, and I hope that we shall be able to do that, either later this year or early in the new year, when he has more of the medical and other evidence that he said would be necessary to respond. I look forward to hearing what the Government intend to do to support families with disabled children.
§ The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman)It is a pleasure to answer a debate initiated by the hon. Member for Witney (Mr. Cameron). I congratulate him on raising such an important issue and on his continued interest in the health and care of children. He says that it is not necessary for anyone to have personal experience of something in order to speak authoritatively about it, and I entirely agree. However, it is important that we learn from those who have such experience, so I welcome the fact that he used his experiences as well as those of his constituents to illustrate his speech, and I look forward to further exchanges on the matter, both in the Chamber and in private.
I have not forgotten my commitment to meet parents and others involved in the group B streptococcus campaign. The timing mentioned by the hon. Gentleman—towards the end of this year or early next year—is what I had in mind. By then, we will have concluded or at least made progress in our review, and we will be able to have a more meaningful discussion than we could now. As soon as I have the information, I promise that a date will be entered in my diary.
For those interested in the machinery of government, if we had had this debate last year, my predecessor in this post, my right hon. Friend the Member for Redditch (Jacqui Smith), who is now the Minister for Industry and the Regions, would have been answering as the Minister responsible for children's health and for children's social care. We now have a Minister for Children at the Department for Education and Skills, but my right hon. Friend the Member for Barking (Margaret Hodge) is responsible only for children's social care; I, a Minister at the Department of Health, have responsibility for children's health.
The hon. Member for Witney mentioned the need for joined-up services, and my right hon. Friend the Minister for Children and I are trying to lead by example. We have joint meetings on the various issues that concern us both, and we make decisions and keep each other informed of progress on our respective responsibilities. On many issues, we work in tandem, so not only can I speak with confidence about children's 101WH health issues, but I can answer on behalf of my right hon. Friend about social care matters. She will at some point be answering questions or debates on children's social care, and I have no doubt that she will be equally happy to answer questions on children's health.
I shall deal later with the Green Paper and the national service framework for children. The hon. Member for Witney mentioned the Audit Commission's report and Mencap's "Breaking Point" report, which raise serious issues. I wholeheartedly agreed with much of what he said—indeed, I heard nothing that had not already crossed my mind and is not already on my agenda. We may dispute our priorities over the coming year, because I cannot work on everything at once, but I assure him that our minds are working along similar lines.
The Audit Commission found a lottery of provision in health and social care support. I acknowledge that the quality of service depends on where one lives and how well the local council is working. That is not acceptable. I want high-quality services to be available everywhere. I promise the hon. Gentleman that, far from slipping down the Government's agenda, children's social care and children's health—not only for children at risk, as dealt with in the Green Paper, but for those with disabilities and all other children—are at the top of our agenda. I am sure that he listened to me when I had Adjournment debates on the subject as chairman of the all-party group on autism, before I was promoted to my present post. He will have found common cause with me on the need for joined-up services.
The example that I always gave was what I called the bag ladies. Hon. Members will immediately recognise the bag ladies from their surgeries. They are the mums—occasionally dads, but usually mums—who into our surgeries carrying bags full of letters that they have had to write to get all the services that they need for their disabled children. We need to arrive at a system in which, as the hon. Gentleman identified, there is an early assessment of a child's disabilities and we immediately plug in all the services that that child needs, so that mum does not have to become a bag lady to get the required level of service. A good example of progress is the national initiative for autism: screening and assessment, which became the national autism plan for children. It identifies a process of early intervention for disability, which the Government are considering. Of course, the national service framework is intended to consider such issues and the way in which we join up all those services.
Over the past couple of years, the Government's quality protects programme has been the key vehicle for driving upward the quality of services. Disabled children have been a priority in the programme. Over three years, £60 million for the children's services special grant has been earmarked for services for disabled children and their families. We have had some success. The national overview report for quality protects shows that more family support services, particularly home-based respite care and sitting services, are being provided. The majority of councils have started developing proposals in collaboration with partners from other agencies and sectors, such as the NHS and the voluntary sector, and there are numerous examples of improved provision around the country. We need to 102WH build on that success and ensure that all disabled children have access to excellent services. That is why we have doubled the earmarked funding for disabled children from quality protects from £15 million to £30 million.
We are also increasing support through the carers grant. That is leading, in particular, to increases in the levels of provision of short-term breaks for carers, including parents of disabled children. Last year the total number of carers helped via children's services was 52,000. The carers grant is increasing annually, and by 2005–06 it will have nearly doubled to £185 million. I assure the hon. Gentleman that I was equally interested in the "Breaking Point" report. I am determined to do even more to support carers and am looking for further opportunities for the Government to be able to help them in future.
The hon. Gentleman mentioned direct payments and the views of MacIntyre Care about setting up disabled people's trusts. I have not seen that work and I would welcome details of it. I will certainly consider the idea. My immediate instinct is that I am not sure that it will be necessary to go down that route because the legislation is absolutely clear, although it is often misinterpreted. It says that councils have a duty, not to offer, but to make a direct payment. Councils should presume that they are going to deliver care through a direct payment; they should not presume that they are going to provide care directly. Direct care should be provided only when people—whether they are the parents of a disabled child, or older adults—have turned down the opportunity of a direct payment.
The legislation is equally clear in relation to judging whether somebody can manage a direct payment. It states:
with such assistance as may be available to him".That assistance is family, friends, carers and the local council itself. I have met people with severe learning disabilities who are managing a direct payment perfectly in order to provide themselves with an independent life. They are plugged into a network of assistance that helps them to manage that payment. I hear what the hon. Gentleman says, and I will certainly consider the idea of a personal trust, but the legislation makes it possible for us to deal with that in other ways. If that is not working, we need to find out why.I intend to exert major pressure to move forward on direct payments. This week, I received an email from an old friend whom I have not seen for 15 years. About 10 years ago, he had an accident that left him severely disabled and in a wheelchair. He emailed me to say that direct payments have transformed his life. That is the experience of disabled people and parents of disabled children all over the country who have had access to direct payments. We need to push ahead on that agenda.
The hon. Gentleman raised the subject of the benefits of fostering compared with residential care. I know that he is concerned that residential care is occasionally not an option and that fostering always seems to be preferred. When a family cannot cope with a disabled child any longer and needs some extra help, we usually prefer the fostering environment because it keeps the child in a family setting, and the sort of family support that we believe a child needs continues to be provided. 103WH However, I accept that the option of residential care should sometimes be on the table and that it needs to be kept available.
On equipment and therapy services, we are taking specific action to improve services for disabled children. The Audit Commission said that many disabled children have had to wait long periods for equipment services. The NHS plan set out our commitment to modernise community equipment services and, backed by additional funding, we are working towards the development of integrated equipment services.
As the hon. Gentleman rightly said, therapy services are another key service for disabled children. In the NHS plan, we recognised that the shortage of human resources is the biggest constraint faced by the NHS today, and we set out our commitment to increase the work force. With the extra investment that we announced in the 2002 Budget, we will build on that target. By 2008, we expect the NHS to have had net increases of at least 30,000 allied health professionals and scientists over the September 2001 staff census. The plan also announced an increase in the number of training places for therapists and other health care professionals. It set a target of 4,450 extra training places for therapists and other key professional staff by 2004. I must add that recruitment will be our biggest challenge; I cannot turn on a tap and magically produce trained professionals. It takes time to attract people to that type of career, and to train and deploy them, but we have a strategy to bring them into the NHS as rapidly as possible.
The hon. Gentleman mentioned the Green Paper, "Every Child Matters", which I spoke of earlier. It is essential that we have a strategic framework to protect children and to ensure that they have all the services that they need. The Green Paper provides us with that framework. It specifically states that we will shift the balance of services towards early intervention, 104WH particularly in the early years. It also states that we will improve support to parents and provide targeted services, specifically mentioning the families of disabled children. We have set out proposals to integrate education, health and social care through children's trusts, extended schools and children's centres. They will be particularly important for disabled children, who often need the support of all of those agencies. Whether the starting point is health, education or social services, we expect coherence in the planning, commissioning and delivery of services.
The hon. Gentleman also mentioned the national service framework for children, which will be published next year. It will set national standards for health, education and social services and will help to tackle the problem that he mentioned: the postcode lottery of provision. It will also ensure better access and smoother progression in the provision of services for children. The leading external working group on such work has established seven task groups to address specific issues such as early diagnosis and intervention, family support, equipment, housing, therapy, transition, participation, and support for children with complex health care needs. They are all issues that the hon. Gentleman raised today. The framework will lead to disabled children having access to modern health and social care services designed to meet their needs—services that give choices to them and their families.
We recognise the agenda that the hon. Gentleman has set out today. That is my priority and a key priority of my right hon. Friend the Minister for Children. I give the hon. Gentleman an absolute commitment that we will work hard on every issue that he has raised. We may not be able to solve all the problems instantly, but I promise that we will endeavour to do so.
§ Sitting suspended until Two o'clock.