Tourette Syndrome

Lord Jackson of Peterborough Excerpts

Tuesday 12th October 2010 Westminster Hall

[Mr Stewart Jackson (Peterborough) (Con)]

It is a pleasure to serve under your chairmanship for the first time, Mrs Main. I am pleased to have this opportunity to raise the important issue of Government policy on Tourette syndrome. I believe that this is the first time it has been discussed in this Chamber.

Most people understandably have little or no knowledge of TS, and what knowledge they do have is coloured by media reports which are either simplistic or exaggerated. The charity Tourettes Action achieved its highest profile and biggest income boost in 2006, when Tourette sufferer Pete Bennett was declared the winner of the seventh series of “Big Brother”, but even that was not without controversy: some commentators accused the show’s producers of exploiting Mr Bennett’s condition to boost ratings in a voyeuristic fashion.

What are the facts about this much misunderstood condition? Put simply, it is a chronic, inherited neuro- developmental disorder characterised by uncontrollable sounds and movements which are called tics. It affects about one in 100 schoolchildren, most of whom are undiagnosed. Tourette syndrome does not affect IQ, but people with the condition do exhibit co-morbidities such as obsessive compulsive disorder, insomnia, depression and autistic spectrum disorders. There is no cure for TS, but tics wax and wane and can change in their nature and severity over time. Despite what many people believe, not all sufferers have coprolalia, which is involuntary swearing or the utterances of obscene words—90% do not have it.

People with TS face many challenges, such as the physical discomfort and aches and pains caused by their tics: 87% of people with TS who participated in a Tourettes Action survey in 2008 answered “yes” to the question, “Do your tics ever cause you pain?” and 66% of children with TS are bothered by aches and pains and physical discomfort. Repeated movements and injuries resulting from tics cause pain, and sometimes children’s impulses are dangerous to themselves.

People with TS also suffer higher rates of unemployment as adults. According to a recent academic study, unemployment rates for people with TS are two to three times higher than those for the whole UK population. A study of the health economic burden of a cohort of adult hospital patients with TS in Germany over a three-month period showed that disease severity has no influence on costs. Additional TS-specific costs totalled €3,404 per patient. The cost was based on calculating direct medical costs, out-patient care costs, drug costs, ancillary treatment costs and indirect medical costs. Direct costs constituted about 18% of the total, while indirect costs comprised 81% of the total. Drug treatments constituted approximately 7% of the total costs and 36% of the total direct costs. Using those figures for adult patients with TS in the UK would correlate to costs of some £1.5 billion a year. Obvious provisos are that health economics estimations may not transfer well from country to country and, just as importantly, the experience of patients seen in a particular clinic cannot necessarily be extrapolated to the number of adults as a whole who are believed to have TS, as many do not receive specialist medical care.

Since preventive therapies are not in sight, possibilities for direct cost reduction are improbable. Nevertheless, a better integration of patients with TS in the working environment has the potential not only to improve patients’ quality of life but substantially to reduce indirect costs, yet wide access to clinical psychology services and specialised habit reversal therapy is not available due to a lack of funding and trained professionals.

A Swedish study of juveniles sentenced for serious offences revealed that 2% had TS, which is double the 1% prevalence figure among schoolchildren up to 18 years old. That could be the tip of the iceberg, as most crimes committed by TS offenders are more likely to be minor offences. TS on its own rarely leads to criminal behaviour, but patients with TS who have behavioural co-morbidities are at risk of being involved with the legal system. Symptoms of TS such as jerking and shouting out could be thought to be antisocial or alcohol-related and waste police time, as well as being embarrassing for the individual.

Likewise, people with TS often have to bear social ostracism, which manifests itself in ridicule, bullying and social exclusion from an early age. Sixty-two per cent. of children with Tourette’s withhold themselves from taking part in social activities because of TS-related problems. Children and young people in particular suffer a generally worse quality of life than healthy young people without TS across all the following areas: psychosocial health, emotional functioning, social functioning and school functioning. Similarly, the burden for parents and carers is significantly higher than it is even for parents of children with other chronic disorders such as asthma, according to a 2003 research paper produced by the American Academy of Child Adolescent Psychiatry entitled “Psychological Morbidity and Caregiver Burden in Parents of Children With Tourette’s Disorder and Psychiatric Comorbidity”.

Above all, education is a major problem for children with TS. Attention and concentration problems are common, and tics are easily misinterpreted as deliberately naughty behaviour by untrained teachers, who are rarely aware of strategies for managing TS in the classroom, or who do not understand that tics can be suppressed and children are often more focused on that than on learning. Tics, which peak in severity at around 10 to 12 years old, can typically be worse at home than at school, and children find homework tough as they are often exhausted by the effort of disguising or suppressing their tics in company. The Journal of Child Psychology and Psychiatry published an article last year which stated that 59% of children with TS have some sort of educational problem that needs support or special education.

The aim of this debate is to develop at least rudimentary cross-departmental working between the Department for Education and the Department of Health, and a commitment to work towards a strategy for Tourette syndrome focused on a few key areas. The first is increased access to services. TS crosses traditional public service boundaries such as physical health, mental health, education and social welfare. That is a challenge for local service providers, who should ensure that individuals do not fall between service gaps. In reality, however, the challenge often falls on the individual with TS or their family.

Access to psychological therapy is particularly difficult for most people with TS. For example, a member of Tourettes Action has waited more than 16 months for a decision on whether she can get habit reversal therapy. Provision of specialised services is sparse throughout the country; that is a second barrier, in addition to the stretched state of psychology services generally. She finds herself caught between various NHS bodies that are reluctant to allow resources to be used for her, and seemingly reluctant, up to chief executive level, to communicate with her in a transparent manner.

That experience is not unique, but more common is the simple lack of use of psychological treatment for TS, although there is a strong evidence base for its efficacy. Such treatments have been proven to be about as effective as drugs in reducing tic severity, but without side effects. Psychological services need to be provided on the basis of evidence in the same way that medical or surgical treatments are expected to be. This is an issue of both funding and professional awareness and training.

That brings me to the awareness of TS by those who work in primary care—the so-called gatekeepers of diagnosis. Commonly, tics will not be observed during a visit to the doctor. They are often suppressible, especially in the general practitioner’s office. Some children will substitute more apparent tics with less apparent ones in the clinical setting, or will wait until they are not being observed to release tics. Others may disguise tics as seemingly purposeful movements such as brushing hair out of the face in concert with head jerking.

Half of the people participating in the Tourettes Action survey, “Evaluation of use of Consultants’ List”, in 2009 did not receive a referral to a specialist or a consultant. Old-fashioned notions of “habits” from which a child will recover, although appropriate to commonly seen transient tic disorders, are sometimes applied inappropriately to children with full-blown Tourette’s, who need further medical attention. Although clinical expertise is not expected of general practitioners, in practice people in primary care are undoubtedly suffering from a lack of awareness.

That brings me to national recognition of the need for consistent specialist services. The Department of Health has not yet perceived Tourette syndrome as an area meriting consideration. There are no National Institute for Health and Clinical Excellence guidelines or other measures commanding the attention of commissioners, which means, effectively, that they do not feel the need to recognise the condition as a distinct issue. Consequently, patients receive different support in different regions, essentially based on the interest or otherwise of local clinicians.

Tourettes Action holds a list of only 44 consultants in the whole of the United Kingdom who have a special interest in seeing people with TS. Those consultants are a mixture of child and adult psychiatrists, neurologists and paediatricians. The list is much in demand by patients and families and has been cultivated over many years. To reduce the problems of a delayed diagnosis and treatment, it would be beneficial if that expertise were spread more widely. A possible strategy would be for a NICE appraisal of treatment options, including psychological therapies, to give support to less-experienced clinicians and to exert top-down pressure on local secondary care services to provide a suitable standard of expertise and provision. Local professionals are key figures, but currently local engagement is patchy.

Better transition from child to adult services is crucial. We need to ensure that appropriate support and services are available after a child turns 18. Tourettes Action receives helpline calls from young people with TS who have become addicted to alcohol and drugs, which they use to self-medicate their symptoms. Those young people have been discharged from children’s services with no ongoing support.

TS-specific support in schools is vital. Children with TS have to live with the consequences of their education. If they are not given the right support in school to which all children are entitled, they are at high risk of ending up facing unemployment and social exclusion. Special educational needs teachers are currently not given any specific training on Tourette syndrome, even though TS prevalence in SEN classes is high. Under current legislation, including the Disability Discrimination Act 1995, schools are obliged to make reasonable adjustments, which could mean measures as simple as exit cards or extra time for examinations, or as demanding as extra staffing. Some children are fortunate to already receive a high standard of support in the education system but many, sadly, do not.

Tourette syndrome has hitherto been treated as a subject of risqué jokes and ribaldry, but for the children and young people afflicted by the condition, who are fearful of its effects on themselves and of the understandable fear and ignorance of strangers, it really is no laughing matter. They, too, deserve a hearing from our policy makers. I hope that the Minister, who has a strong record in his parliamentary career of intervening in cases involving vulnerable people, will reassure us today that there is at least a commitment to develop a policy on the condition, not least because a coherent strategy across government will not only save taxpayers’ money in the long run, but will help to relieve TS sufferers and their families of a lonely burden that they have carried for too long.

[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.