Health Services (Disabled Children)

Anne Milton Excerpts

Thursday 15th December 2011 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

I begin by congratulating the hon. Member for Mid Dorset and North Poole (Annette Brooke) on securing a debate on this extremely important issue. I know that, like many Members, she has shown a very strong personal interest in it. I share that interest, and I thank her for acknowledging that. I hope that what I say today will reassure her that we are doing what we can to improve the availability and quality of health care for all children and young people, including those with disabilities.

I cannot answer all the questions that the hon. Lady asked. Interestingly, from listening to her questions we could hear the complexity of the current system. I share her sadness about the years that have been lost to many children, and I am sure we also share sadness about the terrible struggle and battle that a lot of parents of disabled children have faced. The debate provides an opportunity for us to put on record our tribute to those parents, who struggle in unbelievable circumstances and feel unsupported. I cannot quantify the traumatic nature of what they have to face, not only in dealing with a child with disabilities but in getting everything they can for them.

I do not think I will be saying anything very controversial by acknowledging that the NHS, as it currently works, does not get everything right for children and young people. The hon. Lady referred to Sir Ian Kennedy’s report “Getting it right for children and young people”, which made it clear that the quality of health care for children was very variable and that the outcomes for too many children were poor compared with those in other countries.

We have 12 million children and young people in England, which is a fifth of the total population, and the number of them with disabilities is high. For example, some 108,000 have been diagnosed as having an autistic spectrum disorder, and some 70,000 would benefit from mobility support, including wheelchairs. Their well-being, as with all children and young people, must always be at the top of our list. We must pay particular attention to services that help the most vulnerable children or those with the greatest needs. They are our future, and the NHS needs to do better for them.

I am particularly pleased that the hon. Lady mentioned children who are on the autistic spectrum. There is no doubt that those children and young people in particular, like adults with autism, often fall through the net. Child and adolescent mental health services do not necessarily fill the gap.

The Department of Health has simple but ambitious goals. It may be stating the obvious to say that they include the right start to life in the foundation years, improved support for mental health and well-being, more co-operative and joined-up services for children with disabilities, and improved health in adolescence. Those ambitions lie behind the health reforms that the coalition Government are proposing. We are moving towards a service in which the use of evidence-based treatment is adopted consistently and to the best effect; in which promoting good health is of equal importance to caring for the sick; and in which children, young people and their families are always involved in decisions about their care. “No decision about me without me” applies as much to children as to anybody else, and I think we often underestimate the ability of young people and even quite young children to be involved in decisions about their care. We also a want a service in which commissioning is underpinned by informed and expert knowledge. I believe that it is in commissioning services that we have often got things wrong.

As the hon. Lady will know, those ambitions are supported by measures such as the increase in health visitors by 4,200 and the expansion by 50% of the family nurse partnership programme. Health visitors and family nurses play a vital role in identifying, intervening in and sorting out babies’ and children’s problems early. We frequently hear about the need for early diagnosis so that we can have early intervention and support, which prevents problems later on. That includes children with disability and other special care needs.

I would also like children’s health to be built in throughout the new system, so that everything we do is geared towards supporting children. We have made our intention clear to put in place a system that achieves better outcomes for everyone, and one that delivers services for individuals, not organisations. We often end up believing that we need to get the processes right and the arguments on that continue without our seeing the outcome that we are trying to achieve.

Of course, not just the NHS has a role to play in the health of children with disabilities. Schools, children’s centres and wider children’s services all have a part to play. That is why we are putting in place a system of health and wellbeing boards in each local area, the job of which will be to achieve a truly jointly owned assessment of local need, which leads to a joint health and well-being strategy and commissioning decisions that span the NHS and local government. Joint leadership and joint responsibility is for the whole population, including disabled children. Local authorities have a key role to play.

I should take this opportunity to commend the work of Disability Challengers in my area, which is well supported by people locally and offers an invaluable service to parents. It is those sort of initiatives and third sector organisations that we can bring together to make joint leadership and joint responsibility actually work. We always talk about integration—we have been talking about it for years—but now we need to make it happen. We need to stop that fragmentation of services. We need to stop arguing about who will pay for what and ensure that people get what they need.

The hon. Lady and others have concerns about the priorities that general practitioners will give to children and young people when commissioning services, but in fact it is estimated that about 40% of the average GP’s work load is to do with children and young people. Nobody is in a better position to understand children’s needs. On top of that, the clinical commissioning groups will have access to advice from people with a broad range of professional expertise, including those who work particularly closely with children, such as paediatricians, nurses, other clinical professionals, and health and wellbeing boards, the membership of which will include, for example, directors of children’s services in the local authority.

The hon. Lady mentioned speech and language therapy, which is much talked about. Its critical role in meeting many children’s needs is much underestimated. The allied health professionals, which we often miss off our list after we have mentioned nurses and doctors, are critical in ensuring that those children get what they need.

To ensure that that happens, the NHS Commissioning Board will be accountable to Ministers for improving health care provision for children and young people. They will be judged on their delivery of improved outcomes. The NHS outcomes framework and the public health outcomes framework include measurable outcomes to demonstrate improvement in critical areas relating to children and young people. As the data get better and more meaningful—it is important to say that the data must be meaningful—we will refine the outcomes that the NHS needs to deliver, along with our understanding of the outcomes that are important to disabled children, young people and their families. That will be an evolving work in progress, but the focus on outcomes is important.

One important matter—the hon. Lady will be interested in this—is how the integrated care pathway can be used to provide children with disabilities, long-term conditions or complex needs with the best opportunities to make progress and live life more independently. A number of activities are under way at the moment to ensure that that happens. The learning network for health and wellbeing board early implementer programme includes a learning set on effective joint working to improve those outcomes for children and young people. That work is just getting under way—it was launched only about three weeks ago—but there is incredible energy and enthusiasm to develop and share innovative ways in which to change things for the better. One of the priorities for the network is tackling health inequalities and increasing access for those groups that traditionally have had difficulty in securing the provision that they need. I refer here to the group of children that we are talking about.

Similarly, there is a small group of early implementing clinical commissioning groups that are focusing on children and young people’s issues. With my colleagues in the Department for Education, we have set up 20 pathfinder groups, including 31 local authorities and primary care trust clusters, to test the ambition of the Government’s Green Paper to support children with special educational needs. They will test improvements to the current system, including the new single assessment process with a single education, health and care plan, along with the option of a personal budget. Things happen incredibly slowly in Government and it is very frustrating for the people who are in receipt of services. It is important that we use this opportunity to capture the enthusiasm and energy and to use the reforms that we are making to get this right once and for all. The lessons that we learn from those early implementers will be crucial. They will help inform more effective commissioning and service provision. Where these effective integrated care packages and personal budgets are available, the impacts are very dramatic.

I hope that the hon. Lady is reassured by the fact that we are committed to children with disabilities. I have a personal interest in the matter, and we want to ensure that the NHS plays its full part. It sounds a cliché to say that the NHS works in partnership with local authorities and schools to improve the lives of children and young people, but I mean it from the bottom of my heart. We have to ensure that partnership becomes a reality.

I pay tribute to organisations such as Every Disabled Child Matters. My noble Friend Earl Howe has answered a letter to that organisation quite recently. We are talking about special children with very special needs and some very special parents. We must ensure that those needs are met and that the terrible battle that the parents and young people face is halted and they get what they need to live those independent lives. There can be no better words to end this debate on than these: young, disabled and in control.

Question put and agreed to.