Ben Braud - Work experience at the Institute of Mental Health: Studying and researching Tourette Syndrome

17 year-old Benjamin Braud has Tourette Syndrome (known as ‘tics’ or ‘TS’). He chose to spend a week long work experience placement at the University of Nottingham, specifically with researchers from the division of Psychology, based at the Institute of Mental Health. After he’d finished his experience we asked him how he got on…

How did you come to have your work experience at the University of Nottingham?

I came to the University of Nottingham because I wanted to see the variety of choices and skills they offered. In fact, when I contacted the research team (who I already knew because I’d volunteered to help them with Tourette Syndrome research in the past) they allowed me to spend a week with them, which I’m grateful for.

Were you already involved in research at the University of Nottingham?

Yes, I’ve done many exercises and relaxations on TS which were part of research studies that students were doing. Also, I’ve done a few MRI scans which enabled the researches to have a closer and detailed look at my brain.

Were you in a particular team or department?

I was involved in the department of Psychology where I helped Jane Fowlie, Dr Ruth Wadman, Amelia Draper and research students. I also went to the Institute of Mental Health, where the MRI scans were being done. It was extremely interesting and fascinating to take part in the research. I would be happy to do it again.

Why did you choose this work experience placement?

Since I have been helping the research teams with their study into TS, I wanted to see the other sides of their job, which in fact were quite interesting. It was great to find out about the other studies and opportunities they are involved in.

What did you hope to achieve from this work experience placement?

This work experience has given me a variety of skills. It has been extraordinary, fun and most all fascinating. I’d hoped to gain more knowledge to allow me to have a clearer idea of how to get on the path to my future career – which I did.

Can you give us an idea of the kind of things you did – any duties or things you were asked to do?

The activities I participated in were always interesting! I did research activities (games/simulations), learnt about new research studies, and I even learnt about Psychopaths! I also learnt about how research is conducted and learnt more detail on how Tourette Syndrome occurs with the human brain with Professor Georgina Jackson and Dr Elena Nixon. However, there is so much to talk about as it has been a great journey!

What do you feel you gained from the experience?

This experience has given me skills which I can develop, mainly confidence and communication skills because meeting new people has boosted my confidence. Plus everyone was friendly - the environment was great! There are plenty more skills which I have developed but the main one would be new knowledge about the outside world, which has enabled me to be more confident about myself.

Would you have any advice for anyone about to go on work experience?

My first thoughts were that they would treat me like a lab rat, however; I was wrong because the people have been kind, honest and friendly, which was great. The only advice I would give is just be yourself and look smart on your first day as it will give the people a good impression about you and what you are like. Also, don’t be afraid to ask any questions - I learnt a lot.

What are your future career plans/goals?

Before I went to work experience I wanted to go to University. But now I feel like I want to do an apprenticeship. Even though the University of Nottingham offers science based studies, I would prefer to do an apprenticeship in a lab in the same type of research, but maybe in a different disorder. Perhaps help with TS. But, nevertheless, this work experience has given me a lot of options and choices.

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The Reality of ADHD - CANDAL Researchers

In March 2014 the national media ran stories on the subject of ADHD based on interviews with a US academic. This article outlines the response from the Institute of Mental Health's CANDAL centre of excellence.

The Observer (30.03.14) headlined an article: Children's hyperactivity 'is not a real disease', says US expert. It reported an interview with Dr Bruce D Perry, Senior Fellow of the Child Trauma Academy in Houston, Texas.

Dr Perry is visiting Britain to meet cabinet members Ian Duncan Smith and Jeremy Hunt, as well as addressing the influential Early Intervention Foundation, chaired by Labour MP Graham Allen. Dr Perry is, to his credit, a prominent advocate of the idea that the way we treat children has profound effects on the way their brains develop physically, and that this has far-reaching consequences for their lifetime mental health. We entirely agree.

However, there are many things about the Observer’s report of its interview with Dr Perry that we find worrying, particularly the Observer’s rhetorical headline, and the potential impact of Dr Perry’s reported views on public understanding of and policy towards ADHD.

Dr Perry rightly says that ADHD describes a broad set of symptoms, and that many of us “at any given time" would fit “at least a couple” of the symptoms of ADHD. But this entirely misses the point that for a clinical diagnosis of ADHD, symptoms of inattention, hyperactivity and impulsivity must be severe, persistent and impairing. These difficulties present challenges that are all too real, and the role played by childhood trauma does not make them less so.

The NICE ADHD Guideline carefully reviewed evidence from numerous clinical trials and concluded that while behavioural interventions should be offered first to milder cases, pharmacological intervention is the most effective treatment for severe ADHD. As the Observer rightly notes, prescription rates for ADHD drugs in the UK have risen sharply in recent years. However, far from the rise being a scandal, it reflects a welcome trend towards greater access to care for children with ADHD, and prescription rates in the UK (in contrast to many parts of the US) remain well below the estimated prevalence of the condition.

Nonetheless there is legitimate cause for concern over long-term use of any drug during childhood. Dr Perry raises two concerns.

Firstly, he is reported as claiming that the evidence suggests there are no long term benefits of psychostimulants. Dr Perry may be referring to the rigorous Multi-modal Treatment study of ADHD (MTA)1,2. While results after 14 months of randomly allocated treatment showed clearly that carefully crafted medication treatment was more effective than state-of-the-art psychosocial treatment alone, or routine community care. However, naturalistic follow-up of the MTA sample after random treatment allocation ended at 14 months found that differences between the treatment groups diminished over timeand that serious functional impairments often remained3,4. Importantly, the results showed that treatment benefits were only maintained while carefully crafted medication was maintained. The implication is not that medication doesn’t work in the long term, but rather that effective treatment needs to be maintained for benefits to persist. This is similar to the management of other long term conditions such as hypertension and diabetes – where benefits are only persist if the treatment is given.

Secondly, Dr Perry reportedly argues that psychostimulants raise reward thresholds. But substantial evidence 5–8 indicates that raised reward thresholds are typical of untreated ADHD , a dysfunction attributable to an underlying deficit in the dopamine system, and that methylphenidate, which increases the amount of dopamine at brain synapses, actually lowers those thresholds, helping children to engage and concentrate better on less immediately rewarding activities such as school work, and be less distracted by the immediate stimulus or buzz provided bycomputer games, mobile phones and social media. 

Dr Perry states that we should be cautious about medication “particularly when the research shows you that other interventions are equally effective and over time more effective and have none of the adverse effects. For me it's a no-brainer.”  Of course if this were true he’d be right, as no one should medicate children if other interventions that are safer and just as affective are available.  But research does not show that other (behavioural) interventions are “equally effective” for ADHD – indeed a recent study9 showed that even what evidence there was for the effectiveness of non-pharmacological interventions for ADHD largely disappeared when the children’s behaviour was rated by observers who did not know whether the child had received the intervention. Although politically unpalatable, it appears that the evidence for the effectiveness of existing behavioural interventions for ADHD has been oversold.

At CANDAL we are committed to developing and evaluating novel cognitive and behavioural therapies of exactly the kind that Dr Perry advocates, aimed at breaking the negative cycle of dysregulation, but clearly much more work needs to be done to make them effective.

We entirely agree with Graham Allen that “if you can diminish adverse childhood experience, then we eliminate a lot of the causes of dysfunction.”  We applaud Graham Allen’s efforts to focus public attention and government resources on “evidence-based programmes” that will help improve children’s mental health and reduce the “costly and damaging social problems”that can result from conditions such as ADHD.

Children with ADHD and their families in the U.K. deserve betterpublic understanding of the complex, multifactorial nature of this disabling condition and access to better treatments, not sensationalist and stigmatising headlines that suggest that these children and young people do not have a “real” condition.

 

Signed:

Professor David Daley (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Professor Cris Glazebrook (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Professor Chris Hollis (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Professor Georgina Jackson (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Dr Elizabeth Liddle (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Professor Peter Liddle (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Professor Kapil Sayal (This email address is being protected from spambots. You need JavaScript enabled to view it.)

 

Members of CANDAL Centre for ADHD and Neurodevelopmental Disorders Across the Lifetime, Institute of Mental Health, University of Nottingham.

 

References

  1. The MTA Cooperative Group. A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Arch. Gen. Psychiatry56, 1073–1086 (1999).
  2. Conners, C. K. et al. Multimodal treatment of ADHD in the MTA: An alternative outcome analysis. J. Am. Acad. Child Adolesc. Psychiatry40, 159–167 (2001).
  3. Molina, B. S. G. et al. The MTA at 8 Years: Prospective Follow-up of Children Treated for Combined-Type ADHD in a Multisite Study. J. Am. Acad. Child Adolesc. Psychiatry48, 484–500 (2009).
  4. MTA Cooperative Group. National Institute of Mental Health Multimodal Treatment Study of ADHD Follow-up: 24-Month Outcomes of Treatment Strategies for Attention-Deficit/Hyperactivity Disorder. Pediatrics113, 754–761 (2004).
  5. Rubia, K. et al. Methylphenidate normalises activation and functional connectivity deficits in attention and motivation networks in medication-naive children with ADHD during a rewarded continuous performance task. Neuropharmacology57, 640–52 (2009).
  6. Johansen, E. B. et al. Origins of altered reinforcement effects in ADHD. Behav. Brain Funct.5, (2009).
  7. Liddle, E. B. et al. Task-related default mode network modulation and inhibitory control in ADHD: effects of motivation and methylphenidate. J. Child Psychol. Psychiatry52, 761–771 (2011).
  8. Groom, M. J. et al. Effects of Motivation and Medication on Electrophysiological Markers of Response Inhibition in Children with Attention-Deficit/Hyperactivity Disorder. Biol. Psychiatry67, 624–631 (2010).
  9. Sonuga-Barke, E. J. S. et al. Nonpharmacological Interventions for ADHD: Systematic Review and Meta-Analyses of Randomized Controlled Trials of Dietary and Psychological Treatments. Am. J. Psychiatry170, 275–289 (2013).
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