It's really important to ensure that people suffering from a wide range of disabilities, including people with Tourette’s Syndrome, are represented. Therefore, please do take just 10 minutes to share your views and do pass on to any family members or carers that might be interested as well as your GP, consultant, physical and occupational therapists and researchers etc.   
 
The survey is available online at www.TelehealthSurvey.com. It's a straightforward tick-box survey that guarantees absolute anonymity - no names or personal information is sought.  Two versions of the survey are available - please make sure you click "Patient and Carer Questionnaire". On the same website you can also find a short video explaining the project and its objectives.

Submit a dissertation of up to 4000 words (excluding references, tables or figures) on the topic of the Gilles de la Tourette syndrome - we particularly encourage applicants to write up original pieces of research or submit a review of the broad field of Tourette’s, or a specific area of interest. All entrants are encouraged to consider how their research or chosen topic area may develop in the future. The winner will receive a prize of £250

Submit your entry by 31st July 2012 to Dr Andrew Clempson: andrew.clempson@tourettes-action.org.uk

Eligibility

• A UK medical or research student with an interest in Tourette Syndrome
• We particularly welcome medical students who are intercalating with a BSc, MSc or PhD
• Students with experience working in the field (e.g. clinical experience) or have completed or due to complete elective modules covering Tourette’s.

Please tell us which University and course you are enrolled on.

All entries must include a statement of originality and that the work is primarily that of the applicant themselves.

We cannot accept work that has been published elsewhere or submitted to a journal pending peer-review. For original pieces of research, the candidate should explain their role in the relevant research team.

Please note that by entering the competition you agree to let us to publish your essay on our website.

Should you win, you will need to be available to collect your prize in person at our Tourettes Action Research Network meeting in 2013.

Give your views on the following points here:

• Where is the health service falling short for children and young people – what is the weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?

• With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?

• The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?
  

• What should key health outcomes for children and young people include?

One of the aims of the centre is to build up a clinical database of brain images across a range of neurodevelopmental conditions (including Tourette's) in an effort to better understand the etiology of the condition and investigate new treatment options.

For more information on the centre please click here: http://www.nottingham.ac.uk/impactcampaign/campaignpriorities/ingenuity/mriandthedevelopingbrain/mriandthedevelopingbrain.aspx

Although Tourette’s is not a mental health problem, some of the associated conditions make many of these principles applicable to those who are about to leave CAMHS and need support from the Adult Mental Health Services (AMHS) or alternative groups. Follow the links below to find out the best practices that health professionals should be following.

“Adolescence is a period of intense change for young people and a time when mental health problems may emerge or become more severe.  When young people receiving mental health services for children and adolescents move to adult mental health services or alternative this is known as transition.

The Social Care Institute for Excellence (SCIE) has produced a new guide: Mental Health Transitions for Young People. The guide identifies ten key principles for improving transition, these include:
•         ensuring that young people fully understand their mental health problem, proposed treatment and support options
•         the transition should take into account the young person's whole life including family, friends, housing and education
•         young people should move to flexible and age appropriate services
•         staff need to work collaboratively with other services such as social care, health and voluntary services".  
Patricia Kearney    
Head of Children and Families, SCIE

It brings together people employed in health, education and social services.

Lectures are given by NHS clinicians, specialists and service users who practice and/or research in each specific field.

You will gain experience in:

• Understanding a broad range of neuropsychiatric disorders
• The ability to effectively investigate and manage neuropsychiatric disorders
• Knowledge of the philosophical issues in neuropsychiatry
• Legal, ethical and policy issues within neuropsychiatry
• The ability to critically appraise research in the field in neuropsychiatry
• Interdisciplinary working in neuropsychiatry

Areas of study include

• Brain and mind
• Research methods
• Dementia
• Motor disorder including Huntington's disease and Tourette syndrome
• Epilepsy
• Sleep disorder
• Somatoform disorder
• Brain injury

Optional modules are also available from a range of other Neuroscience, Medicine or Health related courses including Intellectual (Learning) Disability and Forensic Mental Health.

Flexibility in mind

We understand the difficulties of fitting in study with work and home commitments so there are various study options to suit your needs:

• Study from 2 to 6 years part-time
• Study one year full-time
• Postgraduate Certificate
• Postgraduate Diploma
• MSc
• Certificate of Attendance only is also available to top up your CPD activity

Clinical Neuropsychiatry – short continuing professional development courses (CPD)

If a full masters course isn’t for you, there are short CPD courses in your specialist field to enhance your knowledge of a specific area.

Courses are available in:

• Huntington’s Disease
• Tourette Syndrome (http://www.birmingham.ac.uk/students/courses/postgraduate/taught/med/pg-modules/tourettes-syndrome.aspx)
• Epilepsy: An introduction
• Dementia

More information on any of the above is available at www.mds.bham.ac.uk/clinicalneuro or contact Rachel Howes on 0121 414 3310. Alternatively email clinicalneuro@contacts.bham.ac.uk or hugh.rickards@bsmhft.nhs.uk

With further research, I believe we can really make a difference to the lives of all those affected by TS, however big or small. If we are to achieve this, there is much to do. We need to improve the accuracy of diagnosing TS, gain a better understanding of what causes the condition and develop more effective treatments. It’s also important that these findings are disseminated to the public effectively and by doing this we can raise awareness of the condition and promote social equality.

At the moment, we have several research projects that are advertised on our website. I’d really like to encourage you to get involved - only your participation can make these projects a success! There are also a few surveys I’ve set up – again please visit the website to take part and share your experiences.

We have some big plans to increase our participation in TS research as well as improving how we report the results back to you. Please stay tuned for more details in the coming months. Also, if you have any questions about the latest TS research, please contact me and I will do my best to answer them. Alternatively, if you have suggestions of how we can raise the profile of TS research or maybe an idea of another survey or project, do let me know. Your participation is always appreciated, no matter how big or small and it really will help shape the future of TS research.

I look forward to speaking to you all

Andy

Over 70 delegates attended, with an excellent programme consisting of key note speakers, plenary sessions and short talks.  This year’s Mary Robertson Prize  was awarded to Kate David and Ben Savery – congratulations to them both!  Below is a short summary of the conference presentations.

Professor Veit Roessner gave an excellent update on clinical guidelines for Tourette’s syndrome and suggestions for further action. Prof. Roessner talked about quality of life which is an important issue, especially for people with Tourette’s. Measuring quality of life is also thought to be more important than measuring tic severity (which is often too variable both within and between people ). Quality of life could also be self-assessed, which may be more accurate as a person’s own view of their quality of life could be very different to that of someone else’s. Self-assessed quality of life could be measured frequently and inexpensively and could offer a more accurate way to assess the impacts of Tourette’s syndrome.

Dr Michael Orth gave an interesting talk on whether a Huntington’s disease type registry would work for Tourette’s syndrome. This may provide a useful network by which people could be connected. Following this, Dr Tammy Hedderly and Neil Williamson discussed a new venture called HealthTracker – a web-based self rating tool that could assists in measuring quality of life. In particular, this tool seems very user-friendly for children. It is hoped that the tracker can assess quality of life over a longer period of time.

Dr Gary Heinman and Pieter Hoekstra talked about the international genetics collaboration, based in the New Jersey Centre for Tourette syndrome Sharing Repository. Here, a highly useful DNA bank could be used by researchers to identify associations between genetic variant with Tourette’s syndrome. Dr Heinman also stressed the importance of rare genetic variants (i.e. <1% in the population) that may be very useful to identify such associations.  Similar advances have been made in the field of autism and schizophrenia, and it is hoped that this repository will provide a useful platform to achieve similar success with Tourette’s.

Professor Michael Trimble gave an excellent overview of the neuro-anatomical concepts of behaviour revealed through Tourette’s syndrome. Particular themes covered were the role of the basal ganglia and cortex, as well as the complex interactions between different regions of the brain. Discussions then moved on to the proposal for the use of Tiapride in Tourette’s syndrome by Adrea Ludolph.

The conference also incorporated a series of short talks, the first of which was Christos Ganos, who discussed tics in autism. Interestingly, these tics appeared to double in frequency when participants took part in tasks – the opposite of what usually happens in Tourette’s syndrome. Following this, Kate David gave an insight into the childhood predictors of quality of life in Tourette’s syndrome. No evidence was reported to predict tic severity, although tics tended to decrease in severity with time. The main childhood predictors of health related quality of life were tic severity, premonitory urges and family history. Collectively these 3 factors accounted for 33% of health related quality of life variance. Interestingly, OCD and ADHD were not found to be predictors for quality of life. Rhiannon Worrall discussed treatment practices for Tourette’s followed by Dr Jeremy Stern who gave an account of the long term follow up and extra-pyramidal side effects of Aripiprazole for Tourette’s syndrome. The short talks were concluded by Alan Apter who discussed objective and subjective measures of the influence of environmental factors on tic expression. Professor Andreas Hartman and Gavin Giovannoni concluded to conference with two key note sessions entitled Gilles de la Tourette Syndrome; back to the future and autoimmune mechanisms in Tourette’s syndrome.

Overall, the conference was a great success. The feedback from the meeting has been very positive and we hope to build on this in future years. Next year, the TARN meeting will probably be in July in London and we will be in touch as soon as we have more details.

The quality of entries this year was so high that two prizes were awarded!

Many congratulations to:

Kate David who won first place and Ben Savery who was a highly commended runner up.

Kate David, from the University of Birmingham, wrote the following essay:

Health-related quality of life in Gilles De La Tourette Syndrome

Ben Savery, from St Georges Hospital, London, wrote the following entry:

‘His body was in perpetual motion’: A historical perspective on Gilles de la Tourette Syndrome through literature and the arts

Both were awarded prizes at the Tourettes Action Research Network / European Society for the Studies into Tourette’s Syndrome conference on 13-14^th May.

We also acknowledge Mana Doyama, from Westbourne Sixth Form College, Penarth who wrote an excellent account entitled ‘Tourette Syndrome – what I have seen’

To download the essays, just click on the titles. For further information regarding the prize please click here.  Good luck and we look forward to receiving your entry!