Health Services (Disabled Children)

Annette Brooke Excerpts

Thursday 15th December 2011 Commons Chamber

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I am extremely pleased to have the opportunity today to raise directly with the Minister, who I recall from previous debates has a significant interest in the area, a number of concerns about services for children with disabilities.

Earlier this afternoon, I hosted a function for the Council for Disabled Children, at which its young ambassadors presented a film that they had made. Their message was, “Young, disabled and in control”. They wanted to be seen as individuals, to be listened to and to have their views and needs taken on board. The function made me reflect on what I had written in my speech, because we should remember that I am talking about lots of precious individuals. It sounds generic, but, when one has the great honour and privilege of meeting amazing young people who are achieving so much, one realises that there is so much more that we as individuals can do for them. Indeed, one of them referred to the use of personal budgets, and as we bring health and social care together that will all become part of the same discussion.

Throughout my long political career locally and nationally, I have been very much aware that families with disabled children face constant battles to secure support, help and access to services. Not so long ago, I was supporting a family to make sure that they were supplied with sufficient and adequate incontinence pads for their growing child, and I asked myself, “Hasn’t anything changed over the years?” There have always been issues when services such as education and health have been brought together, with cross-service battles over who picks up the bill, rather than people putting the needs of the child first.

Given the coalition’s proposed policy changes, there are some potentially amazing opportunities—specifically within the Health and Social Care Bill, and in the delivery of the single assessment process, the education, health and care plan and the local offer, which are proposed in the “Support and aspiration” Green Paper. But we need to grasp those opportunities and address the issues that are seen as threats, and in that respect I hope that the Minister will be able to provide some reassurances today.

Disabled children and those with complex health needs are disproportionate users of health services, but they face long-standing barriers to accessing both universal and specialist health services. The evidence from professionals, the voluntary sector and families with disabled children is clear: if local areas are not required to have a clear focus on child health, disabled children are not given the requisite priority by local decision makers. As a mother of a child with complex health needs put it:

“What’s so sad is that years have been lost because there doesn’t seem to be any clinical leadership for services for disabled children or even children in this area. And there haven’t been any targets that they need to reach so they are not interested. They’re only interested in targets and services for adults.”

Sir Ian Kennedy’s recent report “Getting it right for children and young people” stated:

“Those caring for children ‘are not the biggest players in the clinical system’ and are not well placed within professional hierarchies. They often lose out to other, more powerful, professional and patients’ groups in the contest for resources and the attention of senior management.”

The Health and Social Care Bill represents an ideal opportunity to address these issues. However, it does not include measures to ensure that the Secretary of State, the NHS Commissioning Board, clinical networks and senates, health and wellbeing boards, clinical commissioning groups, HealthWatch or monitoring bodies will prioritise child health. There is a concern that that will perpetuate a system that is designed for adult health and social care but does not work for children’s services.

Campaigners feel that the Health and Social Care Bill has not indicated how health services for disabled children will be configured within the new system and wish to make sure that there is no confusion on the ground as primary care trusts close and health and wellbeing boards and clinical commissioning groups are set up.

I am aware that some issues should be resolved as part of the Department for Education’s “Support and aspiration” Green Paper pathfinder programme. But there are concerns that that is a long-term agenda that will not produce results for at least 18 months. In the meantime, there is already widespread confusion about how health service reform will affect disabled children. There has also been no demonstrable evidence that health and wellbeing board early implementers and clinical commissioning group pathfinders have been asked to link their work with the “Support and aspiration” Green Paper pathfinders.

There are particular concerns that the overarching proposals set out in the “Support and aspiration” Green Paper will not be deliverable unless the structures set up by the Health and Social Care Bill provide clarity on commissioning structures and accountability for child health. For example, the Green Paper proposes an education, health and care plan for disabled children and an overarching “local offer”, but the Health and Social Care Bill does not require health and wellbeing boards to include that in their local strategies.

I know that there are many concerns about the fact that although there is currently a statutory duty to provide education services identified in a statement, there is not the same statutory duty for the provision of health services. It is always difficult when professionals from two different cultures and backgrounds are asked to work together, but a number of issues could be resolved earlier. The Bill also does not provide a platform for education providers to take part in local decision making at health and wellbeing board level, which will make integrated commissioning more difficult. I would be really grateful for the Minister’s views on that.

The current scrutiny on the health service created by the Health and Social Care Bill represents a unique opportunity to address long-standing problems with the services used by disabled children. Families with disabled children describe these barriers in the latest report from Every Disabled Child Matters and The Children’s Trust, Tadworth entitled “Disabled Children and Health Reform”. They include delays in getting equipment—wheelchairs, for example.

This afternoon I met Becky, who is at university. She drives her own car and has a specially adapted wheelchair that comes apart. She puts all the wheelchair’s parts into her Mini. It is amazing how she has been able to use her skills and aptitude and access a university education, but the NHS could not provide that specialist wheelchair for her. That makes us think that we need to do more for so many children.

I have already mentioned the restrictions on vital support; it is just dreadful when a family contacts you to say that they cannot get large enough, or enough, nappies for children with continence issues. There are disputes over who funds the service, poorly co-ordinated appointments, poor communication across the system and a cliff edge in support at transition to adult services.

Some parents are quoted in the “Disabled Children and Health Reform” report. On the complexity of the health service, one said:

“I’ve had really good experience of Health and individual Paediatricians…The problems arise from the complexity of the system and the different services your child needs”.

There is always so much praise for the individuals who are doing the work, but it is about pulling it all together and the structures. On the delays to getting vital equipment, another parent said:

“My daughter has a helmet and boots supplied by the Child Development Centre. She’s outgrown the helmet now and it took them two months just to make an appointment to measure her head. In the meantime, she’s confined to her wheelchair. They said they had the money to do it, but didn’t have the means to order it.”

We know about the disputes over who funds the service. A parent said:

“Sometimes the local authority says, ‘Well, that’s a Health issue and so the PCT should pay.’ Then the PCT turns round and says, ‘No, actually that’s an Education issue.’ It feels like we’re having to fight and it wastes valuable time because we have to wait for the local authority and the PCT to meet somewhere in the middle about something which could be helping and making a difference now.”

Another parent commented:

“What’s so sad is the years that have been lost because there doesn’t seem to be any clinical leadership for services for disabled children or even children”.

There is a lack of targets and a focus on adults.

Then there are the problems with transition between child and adult health services, on which one parent said:

“My daughter’s been seen by 2 consultants at least twice a year for the last 17 years so it shouldn’t be a surprise to anyone that she’s going to need continued monitoring and support from Health as she moves into adult services. But the divide between health services for children and adults is significant. Many of the professionals we have come to rely on shake their heads about it…but there’s nothing they can actually do beyond offering to attend a meeting with us where they can hand over to someone who works for adult services.”

In the past few years, we have spoken a great deal in the House about the transitional period. We are aware of the issue but we must keep working at it.

The Health and Social Care Bill does not provide any clarity on how the reformed system will affect the child health system. Child health services operate on a separate system to that of adults, with separate structures and relevant partners—for example, education providers. Consequently, child health requires specific attention within the reform process, which the current legislation does not appear to provide.

The Every Disabled Child Matters campaign is very concerned that, unless specific attention is given to the health processes and professionals who work within child health, the modernisation of the NHS will perpetuate a system that fails children, particularly disabled children and those with complex and/or palliative care needs. The campaign believes that there is a clear choice: act now and use the opportunity of reform to create a system that works for disabled children, or proceed with reform concentrating solely on adult services and leave families with disabled children still struggling to fill the gaps.

The EDCM campaign asks for national leadership. It would like the Secretary of State to be required to set priorities for child health as part of his mandate to the NHS Commissioning Board. As a matter of urgency, it would like the Department of Health to set out a clear vision for the way in which the reformed system will meet the needs of disabled children and children with complex health needs. On commissioning, it would like an overarching clinical network for disabled children's health to be created in order to address long-standing issues, including barriers to commissioning specialist health care services. It would like health and wellbeing board early implementers to be asked to test and report on integrated working for the delivery of services for disabled children which includes all relevant partners. It would also like careful consideration to be given to the impact of current reforms on the commissioning of specialist health services for children and young people with high-cost, low-incidence conditions. The campaign would like information and support to be provided to disabled children and young people and their families to ensure that they understand the way in which the changing health system will affect them.

The report poses 10 key questions, which I would like to pose to the Minister. What role will the NHS Commissioning Board play in improving the national delivery of health services for disabled children? Where will the responsibility lie for designing care pathways and shaping local services for disabled children within the modernised system? How will clinical networks and senates support clinical commissioning groups to deliver high quality universal and specialist health care for disabled children? What practical steps are being taken to ensure that the experiences and interests of disabled people and families with disabled children are represented as an integral part of patient involvement at every level of the reformed NHS? How will the success of the modernised NHS in meeting the needs of disabled children be monitored in local areas and how should that information be published? How will health and wellbeing boards work with local HealthWatch and clinical commissioning groups to achieve integrated care for families with disabled children who use health, social care and education services? How should awareness of the particular needs of disabled children be built into the work force development programme being developed by health education England? How will the modernisation of the NHS work with pathfinders of the “Support and aspiration” Green Paper, particularly in the development of a single education, health and care plan and a local offer? What plans are being made to improve the collection of information about disabled children? Finally, how will families seek redress if the package of care for their disabled child is not delivered or integrated with other care, or if the quality of the health care they receive is poor? There are so many questions. We should try to provide answers and to improve the legislation that is going through Parliament, or at least the guidance that will go alongside it.

In the rest of my time, I would like to touch on two areas. Of course, one could talk about every possible condition and make lots of points, but I will touch on two areas that have been on my agenda over the past five years or so. The House has debated the provision of mental health services for children, with particular reference to autism. There has been improved provision of child and adolescent mental health services over recent years, but I believe that the gap between needs and provision remains. I would be grateful for the Minister’s comments on the future provision of these vital services. So often, as we know, mental health services have been a Cinderella service. If we can intervene early with children, we can save a great deal of money, pain and anguish later on.

Specifically on autism, what steps will the Government take to ensure that child and adolescent mental health services staff are trained in autism and that specialist support is available? On a previous occasion, the House has discussed the problem that even when parents have accessed CAMHS, they have not had satisfactory outcomes because of the lack of training.

I would also like to touch on speech, language and communication needs. To return to my starting point, the lack of joint working between education and health has, over the years, been apparent in speech and language therapy and in the battles over who pays. Will the Minister comment on the importance of integrated commissioning for speech, language and communication services, not just within the health sector, but between health and education commissioners? What role will health and wellbeing boards play in ensuring that there is effective and co-ordinated commissioning of children’s services? Will the Minister confirm whether health and wellbeing boards will be encouraged to consider the use of pooled budgets and joint commissioning arrangements for speech therapy services for children?

As an aside, I would like to mention some adult speech therapy that I have seen. I was privileged to visit Poole hospital following the lobbying by the Royal College of Speech and Language Therapists in Parliament. A display had been set up for me and patients had been invited in to cover all the aspects of speech therapy for adults in the health sector. I would like to tell the Minister and place on the record how impressive that was.

Returning to the subject of children’s services, there is so much that could be said, but I have one overriding question for the Minister. Will she and the Secretary of State do everything they can to improve the provision of services for children with disabilities and special needs, and to ensure that the new structures deliver what is needed so greatly?