Monthly Archives: March 2016

Kat Dyke – Tourette’s syndrome: facts and fictions

Gilles de la Tourette syndrome (TS) is a neurological condition which affects approximately 1% of the school age population. To put that into perspective, if Wembley stadium were full that would be 900 people, which makes TS far more common than most people believe.

People with Tourette’s syndrome have ‘tics’, which are involuntary and difficult to control. Tics can involve movements (motor tics) or sounds (vocal tics), and are highly varied. blogFor example, a tic could be a simple action like an eye blink, or it could be a sequence of complex movements and/or sounds. Some people are able to suppress their tics for a short amount of time, however, this can be uncomfortable (like trying not to blink, or hold in a sneeze). Suppressing tics can require a large amount of effort, which can make it difficult to concentrate on other things; it can also lead to a feeling of tics building up and may result in more occurring later on in the day. This can be particularly difficult for school aged children, and is one of the key reasons why raising awareness and understanding of TS is so important. It’s a myth that people with TS can just stop their tics, although some people with TS can supress them for a short amount of time this does not make them go away. However, for about 70-80% of people with TS their tics will naturally decrease as they get older [1].

Causes of Tourette’s syndrome

The exact cause of TS is not yet fully understood, but it does seem to run in families [2]. Most people with TS will have a close relative who also currently experiences tics, or has done so in the past. There are also specific regions of the brain which seem to be slightly different in people with TS [3], and there are differences in some types of chemical messengers known as neurotransmitters [4].

Finding the cause of TS is a difficult task, which is made more complicated by the fact that TS is a disorder which is often accompanied by other conditions. In fact up to 88% of people with TS will also have at least one other diagnosis such as Obsessive Compulsive Disorder (OCD) or Attention Deficit Hyperactivity Disorder (ADHD) [5]. Despite this advances in science (like improved brain scanning techniques) are helping us to understand how TS develops. Discovering the neurological basis of TS has been hugely important in disproving some previous myths about the condition, for example, that people with TS have unresolved underlying psychological conflicts or are possessed. Both of which are clearly untrue!

Tourette’s syndrome and swearing

A common misconception about TS is that it involves swearing or making inappropriate comments. While Coprolalia (the use of obscene or unacceptable language) is a type of tic associated with Tourette’s syndrome, only 10% of people with TS have it. Due to some of the media coverage of TS, and the distinctiveness of this type of tic, many people think that it is much more common.

Are tics serious?

Tics can seem humorous, but to someone with TS they are often a source of embarrassment and unwanted attention. It’s important to remember that tics are not intentional actions. They are involuntary and can be surprising, even to the person with TS. Tics can also be physically painful; this is because some tics may involve repetitive actions or self-abusive behaviours such as hitting or scratching. The majority of people with TS typically prefer their tics to be ignored; but there can be times when it’s ok to laugh. This will depend on the person and your relationship to them, but if in doubt ask what they are comfortable with. For an insight into the humorous and creative side of tics I strongly recommend exploring the world of Tourette’s Hero (Jessica Thom) and following her on twitter for insightful commentary about living the TS and for ‘daily outbursts’ likeAl Murray wants your vote more than he wants a tortoise”.

TS is a complex and multi-dimensional disorder which effects people worldwide. It can have a significant impact on quality of life in a number of areas, including in educational and social settings. These are areas in which a little understanding could go a long way in reducing stigma and misconceptions, and that can only be a good thing.

Kat Dyke (@kat_s_dyke) is a PhD student within the School of Psychology. (lpxksd@nottingham.ac.uk)

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If you’d like to find out more about TS please explore the following websites.

Tourette’s action: http://www.tourettes-action.org.uk/

NHS: http://www.nhs.uk/Conditions/Tourette-syndrome/Pages/Introduction.aspx

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[1] Bagheri, M. M., Kerbeshian, J. A. C. O. B., & Burd, L. A. R. R. Y. (1999). Recognition and management of Tourette’s syndrome and tic disorders.American family physician59(8), 2263-72.

[2] Lennington, J. B., Coppola, G., & Fernandez, T. V. (2015). Genetics of Tourette Syndrome. In Movement Disorder Genetics (pp. 169-189). Springer International Publishing.

[3] Felling, R. J., & Singer, H. S. (2011). Neurobiology of Tourette syndrome: current status and need for further investigation. The Journal of Neuroscience31(35), 12387-12395.

[4] Jackson, G. M., Draper, A., Dyke, K., Pépés, S. E., & Jackson, S. R. (2015). Inhibition, Disinhibition, and the Control of Action in Tourette Syndrome. Trends in cognitive sciences19(11), 655-665.

[5] Freeman, R. D., Fast, D. K., Burd, L., Kerbeshian, J., Robertson, M. M., & Sandor, P. (2000). An international perspective on Tourette syndrome: selected findings from 3500 individuals in 22 countries. Developmental Medicine & Child Neurology42(7), 436-447.

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Emma Nielsen – Self Injury Awareness Day #SIAD

After reading her IMH Blog Mind your ‘C’ and ‘S’s, the charity Rethink got in touch with our editor Emma Nielsen and asked her to write a contribution for their blog to mark Self Injury Awareness Day 2016 (#SIAD).

We are delighted that Emma took up the invite – check out her piece for Rethink here.

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Emma Nielsen (@EmmaLNielsen) is an Associate Fellow of the Institute of Mental Health and PhD student in the School of Psychology (Lpxen@nottingham.ac.uk)

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If you need someone to talk to, Samaritans are available round-the-clock (and free to contact) on 116 123 (UK & ROI)

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Katherine Brown – Stigma and Self-Harm: Why, and What to do?

Self Injury Awareness Day, 1st March 2016

For most people reading this blog, the notion that mental illness is stigmatised will not be new. You may be one of many who are fighting to end the stigma – particularly if you have lived experience of mental illness, work in a sensitive field, or both. Yet stigma continues to be a pressing issue for those affected by self-harm. Service users have identified stigma as a barrier to help-seeking as well as a problem with services themselves [1]. CAMHS staff report that stigma continues to hinder their working ability [2] and the relatives of those who self-harm highlight stigma as a key concern for the future of their families [3]. So why, if it is so widely acknowledged and with many working tirelessly and passionately to eradicate it, is stigma around self-harm still present?

handsFirstly, although societal discussion regarding mental health has increased over previous decades, self-harm does not seem to be receiving sufficient attention relative to the number it affects. Recently there have been some well-received television shows aired regarding suicide, such as the BBC’s documentaries Suicide and Me and Life After Suicide. However, coverage of self-harm without suicidal intent, or with ambivalence towards suicide, remains lacking. Mental health is not a compulsory part of schools’ curricula, despite the number of young people experiencing psychological distress themselves or supporting friends and family members facing difficulties. While estimates vary, research suggests that one in every two to ten adolescents [4-7] has self-harmed and those who self-harm are most likely to seek support from friends, not professionals [8]. Insufficient discourse regarding self-harm is detrimental for a variety of reasons: it reduces the opportunities to debunk myths; it can increase feelings of isolation for those who self-harm and it can lead to those who hear disclosures of self-harm feeling unequipped to provide effective support. The restricted discussion about self-harm also means that messages of hope and recovery are limited, which is particularly detrimental as such messages could make a huge difference.

Even when self-harm is publicly discussed, inappropriate language and irresponsible media reporting is rife. Terms such as “commit suicide” remain common on mainstream television even though this carries criminal connotations. Guidelines for how newspapers should report suicides have been established but are rarely followed [9], even though poor media reporting increases the likelihood of more people taking their lives [10]. Even lived experience testimonies can be stigmatising and divisive if not delivered carefully; although many pieces are sensitive and insightful, some assert that self-harm and related issues are “like this”, rather than “like this for me”. Everyone’s experiences are unique and deserve to be treated as such. The omission of a few simple words has the potential to shape preconceptions, while including them can increase understanding by empowering people to ask what someone else’s world is like. Language is complex, but careless use does far more damage than may first be thought – especially when research has shown that conversations about self-harm can alter a person’s self-perception [11].

Media is not the only agency through which stigmatisation of self-harm is facilitated. Those in other positions of authority have a role in shaping and maintaining ideas and, although many in authority are helping to end stigma, research suggests that some individuals still hold stigmatising beliefs. For instance, a study of youth justice staff found that some hold dismissive attitudes towards self-harm which they considered to be socially-motivated [12]. Nurses too have been found to hold more stigmatising attitudes towards those who self-harm than those treated for other reasons, such as for eating disorders [13]. Negative attitudes towards self-harm are also common amongst Accident and Emergency staff [14].

So what is the way forward? How can we get further on in our efforts to end stigma?

Ending stigma lies in helping people to understand self-harm and talk openly about it. Big changes may be required to address stigma in some areas, particularly those at an organisational or political level. However, there are small steps that we can all take, which I believe can have just as important an impact:

Be brave enough to ask
Talking can be therapeutic and talking about self-harm/suicide does not increase the risk of someone hurting themselves. If you’re concerned about someone, don’t be afraid to ask them how they’re feeling and – if you both wish – to talk to them about their experiences. A listening ear can make all the difference.

• Refuse to accept inappropriate language
Explain why a term is inappropriate, write a complaint letter, correct yourself (we all make mistakes).

• Remember the person
Self-harm is a behaviour. Don’t lose sight of everything else that makes the person who they are. Just as it can be beneficial to talk about self-harm, it can be positive to spend time together focusing on other things too.

• Look after yourself
It may be cliché but it is true. Understanding your own mental health can help in understanding others. If you feel you’d like support, remember that you deserve it as much as anyone else. Show the same compassion to yourself that you’d show others and be as open about your experiences as you can, whilst still feeling comfortable.

Mental illness stigmatisation is beginning to be reduced. With enough effort and time, it will be eradicated – not only from self-harm, but from distress in all forms.

Katherine Brown (@Kat_E_Brown) is an MSci student and Research Intern in the Self-Harm Research Group, School of Psychology (lpykb5@nottingham.ac.uk)

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If you need someone to talk to, Samaritans are available round-the-clock (and free to contact) on 116 123 (UK & ROI)

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[1] Plaistow, J., Masson, K., Koch, D., Wilson, J., Stark, R., Jones, P. & Lennox, B. (2014). Young people’s views of UK mental health services. Early Intervention in Psychiatry, 8(1), 12-23.

[2] Hay, A., Majumder, P., Fosker, H., Karim, K. & O’Reilly, M. (2015). The views and opinions of CAMHS professionals on their role and the role of others in attending to children who self-harm. Clinical Child Psychology and Psychiatry, 20(2), 289-303.

[3] Ferrey, A., Hughes, N., Simkin, S., Locock, L., Stewart, A., Kapur, N., Gunnell, D. & Hawton, K. (2016). The impact of self-harm by young people on parents and families: A qualitative study. BMJ Open, 6(1), e009631.

[4] Edwards, S. D., & Hewitt, J. (2011). Can supervising self-harm be part of ethical nursing practice? Nursing Ethics, 18(1), 79–87.

[5] Hawton, K., Rodham, K., Evans, E., & Weatherall, R. (2002). Deliberate self harm in adolescents: self report survey in schools in England. BMJ (Clinical Research Ed.), 325(7374), 1207–1211.

[6] Madge, N., Hewitt, A., Hawton, K., Wilde, E. J. De, Corcoran, P., Fekete, S., … Ystgaard, M. (2008). Deliberate self-harm within an international community sample of young people: Comparative findings from the Child & Adolescent Self-harm in Europe (CASE) Study. Journal of Child Psychology and Psychiatry and Allied Disciplines, 49(6), 667–677.

[7] Calvete, E., Orue, I., Aizpuru, L. & Brotherton, H. (2015). Prevalence and functions of non-suicidal self-injury in Spanish adolescents. Psicothema, 27(3), 223-228.

[8] Armiento, J., Hamza, C. & Willoughby, T. (2014). An Examination of Disclosure of Nonsuicidal Self-injury among university students. Journal of Community & Applied Social Psychology, 24(6), 518-533.

[9] Schafer, M. & Quiring, O. (2015). The Press Coverage of Celebrity Suicide and the Development of Suicide Frequencies in Germany. Health Communication, 30(11), 1149-1158.

[10] Notredame, C., Pauwels, N., Walter, M., Danel, T. & Vaiva, G. (2015). Media coverage of suicide: From the epidemiological observations to prevention avenues. Presse Medicale, 44(12), 1243-1250.

[11] Gregory, R. & Mustata, G. (2012). Magical thinking in narratives of adolescent cutters. Journal of Adolescence, 35(4), 1045-1051.

[12] Knowles, S., Townsend, E. & Anderson, M. P. (2013). ‘In two minds’ – socially motivated self-harm is perceived as less serious than internally motivated: A qualitative study of youth justice staff. Journal of Health Psychology, 18(9), 1187-1198.

[13] Emerson, A. (2010). A brief insight into how nurses perceive patients who self-harm. British Journal of Nursing, 19(13), 840-3.

[14] Timson, D., Priest, H. & Clark-Carter, D. (2012). Adolescents who self-harm: Professional staff knowledge, attitudes and training needs. Journal of Adolescence, 35(5), 1307-1314.

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