Tourette Syndrome

Paul Burstow Excerpts

Tuesday 12th October 2010 Westminster Hall

[The Minister of State, Department of Health (Paul Burstow)]

I congratulate my hon. Friend the Member for Peterborough (Mr Jackson)on securing this debate and on bringing the attention of the House to a rare and poorly understood condition. He has done a good job of outlining the scope, scale and cost of the condition and the personal impact that it has on many children and their families.

I will set out some of the changes that the Government are making in the NHS that we think will have a significant impact on and will benefit people with Tourette’s. My hon. Friend talked about education, which I will briefly mention, too, particularly in the context of the difficulties that can be faced by children suffering from the condition, which can be, as he said, misinterpreted by teachers. He is right to describe the sheer feeling of exhaustion in children who are trying to suppress and hide the condition. Socially and emotionally, Tourette’s can lead to ridicule and bullying and can often cause difficulties in forming relationships. Although some children grow out of the condition, it is a barrier in many ways, particularly to employment in later life. We need to ensure that we have a psychosocial-physical approach: we need to look at the whole person when designing services around the needs of individuals and their families.

My hon. Friend is right to mention stigma: that is a big challenge that we have to tackle. Today’s debate is a helpful starting point. I welcome his demolishing some of the myths that surround Tourettes syndrome, most notably his confirming that, despite the popular caricature, involuntarily swearing is only present in a tiny minority of cases.

I join my hon. Friend in commending the work of Tourettes Action, which is doing excellent work to build awareness and skills in health and children’s services. As he says, that work demonstrates that better awareness, timely diagnosis and good access to specialist care are critical in improving people’s quality of life. Of course, early detection makes it less likely that the child gets blamed for what might otherwise be mistaken for bad behaviour. Indeed, the condition is stress-sensitive and the relief a child can get from teachers and their classmates understanding their condition can actually improve their symptoms.

The NHS has not always got diagnosis right. My hon. Friend is right to mention the range of services that are provided and their patchiness. The Government have to grapple with that inheritance and ensure that we build on those services and improve them significantly in the coming years. It is clear that young people and children affected by Tourette’s have not always had the right support and services. We need to get better at identifying the condition, referring children to specialists and providing the long-term, integrated support needed to reduce the wider effects. I cannot promise a dedicated strategy specifically for this condition, and I do not think that that is what my hon. Friend is asking for, but I am keen to see that the issues he raised are properly fed into our future plans for the NHS, particularly into developing our thinking on child mental health. In addition to the reassurances that I hope I can give in the time left, I will ask officials to meet Tourettes Action and my hon. Friend to continue this conversation and discuss in more detail the issues he has raised. This debate is not the end of the discussion, but just the beginning of a process leading to the sort of improvements that he has been talking about.

The proposals for the NHS set out in our White Paper give us a powerful opportunity to improve the care and support received by children with Tourette’s. First, patients will have much greater power in the reformed system. We want to give people more information about services, more choice about their treatments and more influence over how health care is shaped in their community. Local health watch organisations will ensure that views and feedback from patients and carers feed into future decisions about shaping local health and social care. By devolving responsibility for commissioning to GP consortiums, decision making will be closer to patients and more responsive to their individual needs. Of course, we have to ensure that GP commissioners are ready and have the skills and awareness that they need to take these decisions. The NHS commissioning board will work with a range of expert organisations to ensure that GP leaders get the right support. There are certainly opportunities for Tourettes Action to contribute to developing family doctors’ understanding of the condition and how to commission for it effectively.

Secondly, there will be a much bigger role for local government in promoting integration and partnership working between the NHS, social care, public health and other local services and strategies. In particular, local government will take on the function of joining up the commissioning of local NHS services, social care and health improvement, and providing greater local democratic accountability for the community.

My hon. Friend mentioned identification and planning of care for children with Tourette's. Under our plans, councils will ensure that GP consortiums and their local partners work together on joint strategic needs assessments for local populations, looking not just at who is on the patient list, but at the wider needs of the population in the locality. That will mean that councils and health organisations will become much better at identifying children's needs, and putting the services in place to meet them. Our proposals for health and well-being boards will provide a place where children’s services, health services, social care and other agencies may come together to ensure that we are better at planning services and dealing with some of the issues that my hon. Friend mentioned.

The third key point is that the new NHS will focus on outcomes, not on processes. The trouble with a top-down and target-driven system is that it creates a culture in which, as my hon. Friend said, what gets measured gets done. If it is not measured, it seems to be neglected. He described perfectly what we have seen and how services have developed over several years. Our proposals will create a level playing field in the NHS between mental and physical health, and will encourage a much more constructive relationship between health and other public services. That is important, and my hon. Friend rightly said that we must ensure that we do not treat mental health services as a poor relation of the NHS. The Government are determined to ensure that that does not happen.

Health services will be judged and, increasingly, paid not just according to the number of procedures or consultations that they carry out, but on the value that they bring to patients’ health and their wider life—my hon. Friend made that point well. That will be a powerful catalyst for bringing services much closer together around the needs of the individual. A child with Tourette syndrome often has multiple and complex needs, as he said. More often than not, they will also have symptoms of attention deficit hyperactivity disorder, obsessive compulsive disorder or depression. They may be seen by a range of health care professionals, including psychiatrists, psychologists and so on. An outcomes-based approach will ensure that all professionals are geared to work together to achieve the best results for the child. Our proposals will be a potent catalyst for change and improvement in this area.

Fourthly and finally, we are in the process of developing a new mental health strategy, which will be cross-governmental and will examine how to support people's emotional well-being and mental health at all ages and across all services, not just health. One of my criticisms of the “New Horizons” mental health strategy was that it did not do enough to tackle discrimination and stigma. We are determined to make sure that in a more public health-oriented mental health strategy, we begin to address those issues more effectively. That must certainly be the case for Tourette’s.

[Mr Jackson]

I am grateful for the Minister’s positive response. Will he undertake to share the results of the wider review of mental health and Tourette syndrome with his colleagues in the Department for Education? An holistic approach is incredibly important, as is the close working relationship between specialist psychology and mental health services. Local education authorities are particularly important in ensuring that children’s educational attainment is the best possible.

[Paul Burstow]

I certainly undertake to ensure that the Minister of State, Department for Education, my hon. Friend the Member for Brent Central (Sarah Teather), who has responsibilities in this area, reads this debate. We recently met the National Advisory Council for Children’s Mental Health and Emotional Wellbeing, and we are discussing its thoughts on how to move forward and to ensure that child and adolescent mental health services are properly reflected in the new mental health strategy that we are developing. That is an issue for further discussion. I have made it clear that I want mental health to achieve parity with physical health in NHS thinking about care. I also want to ensure that CAMHS are not overshadowed by adult mental health services, which should help to drive up the quality of care for children with Tourette’s.

My hon. Friend talked about transitions, which are important. We so often get the transition from children’s services to adult services wrong. I agree that that continues to be a serious weakness and that child and adult mental health services do not work seamlessly together. That was identified as an area requiring improvement by an independent review in 2008 and in the report of the National Advisory Council for Children's Mental Health and Emotional Wellbeing, “One Year On”, which was published in March. One difficulty is that not all child mental health services are replicated in adult mental health provision, and my hon. Friend described some of the services that are rarely available for children. The new commissioning arrangements, particularly the new role for local government, with an outcomes-based approach, give a new impetus to developing better transition services. We must get that right for children, regardless of their condition.

We are also working with the royal colleges and others to promote higher standards of education and training throughout the clinical community. My hon. Friend rightly focused on that, and I welcome the fact that a network of psychologists and other therapists is being established to work with people with Tourette’s. That is a powerful way of moving the agenda forward. I understand that the network hopes to establish a specialist training workshop, led by experts in behavioural treatment for tics, during 2011. I commend that work and look forward to hearing the results.

My hon. Friend mentioned the role of schools and the need to collaborate across Government. I do not have ministerial responsibility for this area, but I draw his attention to the Green Paper on special educational needs and disabilities that the Minister of State, Department for Education, my hon. Friend the Member for Brent Central, is preparing. The aim is to make the system work better for parents, so that they do not have to battle to obtain the necessary support for their children. A call for evidence was launched last month and is due to close this Friday 15 October. If it has not done so, I hope that Tourettes Action will contribute its views. I am sure that this debate will also be a useful contribution.

I thank my hon. Friend for introducing this important debate. He raised some points that are important not just for children with Tourette’s, but for children with a wide range of neurological and mental health problems. Our White Paper provides the chance to refocus the NHS on achieving better results for them all. The outcomes framework will be a central driver for improvement and will ensure that the NHS treats the person, not just the disease, but meeting people’s needs effectively depends on good partnerships with groups such as Tourettes Action to give us the expert knowledge that we need about rare conditions. I am keen to have a strong dialogue with the voluntary sector, and indeed the White Paper is all about opening doors to organisations such as Tourettes Action. I hope that the group’s first step will be to take the opportunity to meet my officials and to respond to the call for evidence by my hon. Friend the Minister of State, Department for Education. I hope that by working together in that way, we can do much better than the legacy that we inherited from the past.