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GETTING SUPPORT

There are many ways to get support if you or someone in your family has tics or TS. Below are some possible options.

Learning about tics and TS

Many people say that finally learning about tics and TS is the greatest form of support. It can make sense of what someone may have experienced for years but not understood, and can help family and friends understand your symptoms. It may also help resolve many fears and worries about tics and TS. Hopefully the information on this website will help, as may some of the links to other websites or books about TS (a selection of titles are included on our booklist).

Meeting or talking to others who are also affected by tics or TS

Groups are forming in the four provinces of Ireland of people and families who are affected by tics and TS. We hope this will give people the opportunity to meet, share experiences and ideas about living with tics or TS. Click on the tabs for the provincial groups for more details on how to contact the group in your area.

I think my child may have tics or TS – how do I do access assessment or treatment?

You have a number of options available to you. Which option suits best will depend on a number of factors. The best place to start is to discuss it with your GP, who will know what options (public or private) are available in your area. For most services a GP referral is also usually required. A Neurologist or a Psychiatrist can make the diagnosis (see our leaflet Medical Assessment and Treatment for more details on how a diagnosis is made).

Neurology

Neurologists specialise in the assessment and treatment of disorders caused by difficulties in the brain or nervous system. Neurologists often diagnose TS because TS is a movement disorder. The precise cause is not known, but is thought to involve an imbalance of a certain chemical messenger (or eurotransmitter) called dopamine in the brain. Neurologists may also then treat the condition with medication, or may refer to psychiatry for further assessment and management.

Psychiatry - Mental Health Teams

Psychiatrists are medical specialists who specialise in the assessment and treatment of mental health disorders. Public psychiatric services are provided by multidisciplinary teams called mental health teams. They include a range of mental health professionals including psychiatrists, psychologists, psychiatric nurses and mental health social workers. Usually a GP referral is required. In addition to mental health teams, some hospitals may have psychiatry and other mental health supports available within the hospital.

Mental Health Teams provide services to specific geographical areas, so where you live will decide what team provides services to you and your family. Child and Adolescent Mental Health Services (known as CAMHS) assess and treat children up to the age of 16 years. Adult Mental Health Services (AMHS) provide assessment and treatment for adults (18+). For those aged 16 and 17 years it depends on local arrangements as to whether you will be seen by child or adult services.

Many people are referred to psychiatry or mental health teams as they can diagnose and treat tics or TS, as well as having expertise in the assessment and treatment of other conditions commonly associated with tics or TS.This allows a holistic approach to understanding how tics and TS impact on a person and their family, and assists in choosing the best treatment option for a person. Through the multidisciplinary team a variety of treatment options may be available, such as medication, access to psychological treatments or support groups, or liaison with schools. The particular mix of options available may be affected by the resources available to the team.

What about Private Services?

You can of course go privately for service – you GP will be able to assist you in finding out about what private services are available, and may be able to refer you to one that suits your needs. Choosing private services may be influenced by a number of choices – below are some questions which may assist you in making a choice:

• What services can be offered by this provider?

• Does this service meet my needs?

For example if you have concerns about whether your symptoms are due to TS or a different medical cause, a neurologist may be most appropriate; if you have other mental health difficulties psychiatry may be a better option. Again your GP may be the best person to guide you. Ask if the service provider specialises in treating young people or adults? Finally if you are seeking access to specialist psychological treatments check can this provider deliver this service to you.

• What are the likely costs of attending this service provider?

Cost may be an important factor in accessing private services. If you have health insurance it may provide for part or all of the costs, depending on your level of cover, and whether your insurer covers the provider in question. This information can easily be acquired from either the health insurer or the service provider.

Medical Consultants (Neurologists and Psychiatrists)

All medical professionals working in Ireland are required to be registered with the Medical Council. Consultants are entered on the Medical Council Register according to their specialist qualification, known as the Specialist Register.Anyone can check the register online through the website www.medicalcouncil.ie

Psychologists

Psychologists are providers of specialist psychological assessments and treatments. These may include assessments of learning ability to provide school supports or to assess for specific learning difficulties such as dyslexia, or delivery of specific psychological treatments such as Cognitive Behavioural Therapy (CBT), or Habit Reversal Therapy (HRT). The type of assessments and treatments which can be offered will depend on that Psychologist’s specific area of expertise.

Evidence of training and expertise can be shown when a professional is accredited by a professional body. In Ireland the professional body for psychologists is the Psychological Society of Ireland (PSI). A list of accredited psychologists can be found on the PSI’s website www.psihq.ie.

Assessments of learning ability and difficulties may be done by Educational Psychologists. Clinical psychologists have specialist skills in clinical assessment and treatments. Many Psychologists have expertise in more than one area, (for example both clinical and educational) and it is worthwhile discussing what their areas of interest and expertise are before making an appointment.

Cognitive Behavioural Therapists

In recent times there has been increasing evidence that a specific form of Cognitive Behavioural Therapy (CBT) known as Habit Reversal Therapy can be beneficial for adults with TS. Studies assessing its benefit in children and adolescents are too few and limited to date to provide clear evidence of benefit, although interest in this area is growing. CBT has also been shown to be of benefit for both children and adults in many conditions associated with tics and TS such as anxiety, OCD or depression.

Cognitive Behavioural Therapists come from a variety of professional backgrounds but are usually psychologists, nurses or psychiatrists. A directory of accredited cognitive behavioural therapists in Ireland and in the UK can be obtained from ‘Find a Therapist’ section on the website of the British Association of Behavioural and Cognitive Psychotherapy (BABCP), www.babcp.com.

Cognitive Behavioural Therapists do not need to be accredited by the BABCP and many do not bother, but it does guarantee certain minimum standards of training. It is very important that you clarify the degree of training your therapist has. Some therapists in Ireland claim to be CBT therapists based on skills acquired at short duration courses, but training in Cognitive Behavioural Therapy requires meeting certain minimum training standards. These are not limited to but include certain basic requirements such as “cognitive/behavioural elements of training of 450 hours of which 200 hours should be provided directly by recognised trainers through a recognised course or other programme of study”. For more details see BABCP Mininium Training Standards. (If possible create a link here) Hence CBT training is often encapsulated in a Postgraduate Training programme of 1-2 years or more duration from the Postgraduate Diploma to Masters level.

Further information on CBT training courses and standards in Ireland may be sourced from the following;

National Association for CBT Contact: Kathleen Barry or Sligo Mental Health Services, Tel: 071 55120

Irish Association for CBT (branch of the BABCP) Secretary: Andy Giffney, St Otterans Hosp, Waterford

University College Cork (Masters in CBT programme - Edith Quayle is in charge) Dept of Applied Psychology, UCC, Cork.

Trinity College Dublin (Pg Dip in CBT programme - Dr. Brian Fitzmaurice is the person in charge), Dept of Psychiatry.

Trinity College Dublin (Doctorate in Counselling Psychology programme) Dept of Psychology.

University College Dublin MSc in Cognitive Behavioural Therapy (CBT) for Children & Adolescents. Contact Point: Dr. Yulia Zyrianova

Education

“Information is the essential lynchpin in treatment. It doesn’t matter what other strategies you use, the first thing you should do is … educate about the disorder. Education brings about more change than any other psychosocial intervention.” R Barkley -1998

If you are struggling with school, linking with the school to help them understand tics can be an important first step. For many young people linking with school psychology services can be very helpful, as practical supports for young people with TS are available. See our powerpoint presentation from Dr. David Carey for further details.

Will tics or TS stop me from doing things into the future?

Many young people and adults worry about the future. While we can’t say what the future holds for any particular person, it is important to remember some things. First for most people tics get better as they get older, and they can learn to manage tics they still have much easier. Secondly, tics are just one small part of who you are.

Finally there are many people out there with TS (although you may not have known it), including people who have careers in things you may not have imagined, for example premiership football players, actors and actresses, surgeons and so on.

So whatever you want to do, good luck!

Support