Practical classroom support for children with TS is the theme of an article in the latest issue of SEN Magazine, the UK's leading magazine for special educational needs. Co author Uttom Chowdhury is a member of Tourettes Action's Research Network and one of our listed consultants.  Download the full article here.

The Care Quality Commission has published a consultation Assessment of quality in 2010/11, which included neurology as one of the shortlisted topics for their future special review programme. The consultation closes 27April 2010.

This is a very exciting prospect for the millions of people with neurological conditions, including people with Tourettes Syndrome.

How can you help?

The CQC wants to hear personal stories of people with neurological conditions, including first hand experiences of local health and social care services - and where you feel quality could be improved.

Please help us to put TS higher up the Neurological agenda by telling your story.  And forward this information  to encourage others to do the same.  

‘Together we can make a difference’.

Tourettes Action will be at this event in Bishops Auckland, organised by the Northern Neurological Alliance on 16th March 2010.

The aim of the day is to provide an opportunity for people affected by various neurological conditions to meet and gain information and support.

You can download load a flyer here or, for more information, contact:

Neurological Alliance Coordinator Joanne Cole:

Tel: 01642 641825

Email: info@na-na.org.uk                                            

The latest edition of  the official monthly publication of The British Psychological Society features a letter about therapies for Tourette Syndrome by psychologists Liz Murray and Tara Murphy. 

We are very grateful to both the authors and the British Psychological Society for giving us permission to reproduce the text of the letter here:

Psychological interventions in Tourette’s syndrome

Tourette’s syndrome (TS) is a well-known neurological condition that features involuntary sounds and movements (tics). TS is often linked to other behaviours, such as obsessive-compulsive disorder and attention deficit disorders. We would like to highlight recent developments in behavioural treatments and psychoeducation in TS with a view to establishing a network of interested psychologists.

Since Mary Robertson’s 2004 article in The Psychologist psychological interventions for tics have been developed further in Europe and North America. These include a manualised package based on habit reversal therapy/training, cognitive behavioural therapy (CBT), exposure and response prevention (ERP) and psychoeducation.

Douglas Woods and the American TS Behavioural Science Consortium have developed a comprehensive behavioural intervention for tics with a therapist manual for the treatment of tic disorders entitled Managing Tourette Syndrome (2008). There are three additional workbooks to accompany the manual: for children, parents and adults. Kieron O’Connor takes a different approach and has applied CBT to the treatment of tics in adults. His book Cognitive-Behavioural Management of Tic Disorders (2005) is very accessible and also offers a client manual and a therapist manual with questionnaires and worksheets. A third approach draws on ERP strategies for treating tics. Cara Verdellen (2004) has developed a protocol that encourages the person with tics to endure the premonitory sensation for a period of time (exposure) and resist the tic (response prevention), therefore causing a reduction of tics through habituation.

Resources promoting psychoeducation for the individual, their family and school/workplace (Buffolano, 2008; Robertson & Cavanna, 2008) and group work (Murphy & Heyman, 2007) can be used as an important addition to behavioural treatments. For many people with mild TS, this approach may be intervention enough to enhance quality
of life.

Currently there is a significant level of unmet need for treatments for people with tics in the UK. We would like to help develop these treatments within UK-based services. Although specialist clinics exist, most psychologists working in applied settings will have contact with people with TS at some point. However, a recent survey by the charity Tourettes Action showed that few clinical services in the UK have specialist training in treating tic disorders. There is little contact amongst psychologists with an interest in this area within the UK, unlike other countries where psychologists have developed specialist networks. If you already work in this area or have an interest in learning about using psychological treatments for TS please contact one of us (lizgmurray@yahoo.co.uk or t.murphy@ich.ucl.ac.uk) to discuss the possibility of forming a network.

Liz Murray
Dumfries
Tara Murphy
Great Ormond St Hospital for Children

References

Buffolano, S. (2008). Coping with Tourette syndrome. Oakland, CA: Instant Help Books. Murphy, T. & Heyman, I. (2007). Group work in young people with Tourette syndrome. Child and Adolescent Mental Health, 12, 46–48.
O'Connor, K. (2005). Cognitive-behavioural management of tic disorders. Chichester: Wiley.
Robertson, M. & Cavanna, A. (2008). Tourette syndrome (The facts). Oxford: Oxford University Press.
Verdellen, C.W.J., Hoogduin, C.A.L. & Keijsers, G.P.J. (2004). Exposure with response prevention versus habit reversal in Tourette's syndrome: A controlled study. Behaviour Research and Therapy, 42, 501–511. Woods, D.W., Piacentini, J., Chang, S. et al. (2008). Managing Tourette syndrome. New York: Oxford University Press.

Letter originally published in 'The Psychologist', February 2010.

Two opportunities to have your say:

Carers Survey

Kings College London has been commissioned by the Department of Health to carry out a study amongst people who care for adults aged 18-65 years old with a long term neurological condition.  Do these carers get the replacement care / respite care they need to have freedom beyond their caring role?

If you are such a carer, take part in the nationwide survey. The survey questionnaire is available by post or online on the Kings College London website.

NHS review wants to hear from children, parents and carers

In October 2009, the Chief Executive of the NHS, David Nicholson, asked Sir Ian Kennedy to look at NHS services for children. Sir Ian is looking at recent initiatives to improve children’s health services, and, what needs be done for lasting improvements. 

Sir Ian wants to hear from children, young people and their parents or carers about their experiences of the NHS. He wants to find out about what is working well and where improvements need to be made.

Visit the Every Disabled Child Matters website to read the questions and find out how to submit your responses.