Dystonia Clinic Patient Information Leaflet
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Introduction This leaflet provides you with information about the Dystonia Clinic at Walkergate Park. We hope you will find it useful. Appointment Your appointment card gives the time of your appointment. If this time is inconvenient please telephone the number shown on your appointment card 0191 287 5100. An alternative appointment will be made for you. Please let us know otherwise a valuable appointment will be wasted. What is dystonia? Dystonia is a neurological movement disorder. Dystonia is characterised by involuntary and sustained muscle spasm, causing abnormal movement or postures (Geyer and Bressman, 2007). Dystonia can affect just one part of the body or several different areas. Although dystonia is a neurological condition, other functions of the brain are not affected. For example intellect, personality, memory, emotions, sight, hearing and sexual functions are normal (Pountney 2009) There are several types of dystonia. Some of the common ones include: Blepharospasm Cervical dystonia Writer s Cramp Hemifacial spasm A full explanation of the type of dystonia that you have will be given when you attend the clinic. Further information will be provided for your reference. 3
What to expect You have been referred to the Dystonia Clinic by your Consultant or General Practitioner so that we can consider the use of Botulinum Toxin injections. However we can not make a decision about this until you have been sent to the clinic and been seen by a clinician. On your first visit you will be seen by a consultant working here at the clinic. A qualified nurse highly trained in the condition and treatment of dystonia may see you after your second to third visit if your treatment is successful and stable. This does not affect your right to see a Doctor. If you wish to see a Doctor please ask the nurse. Information you should bring with you It would be valuable to know what your current medication includes and any known allergies you may have. Please bring a list to the clinic with you. It would also be useful to know which doctors you have regular contact or follow up with. This allows us to provide information to them about your treatment. Questions you may wish to ask? If you have any concerns please ask the Doctor or nurse you see at the clinic. It is often useful to make a list of questions prior to the clinic so you do not forget. Further information If you don't understand any part of this leaflet or have any further queries please contact the Outpatient Department, Walkergate Park. Telephone: 0191 287 5100 4
Useful websites The Dystonia Society www.dystonia.org.uk A.D.D.E.R. Action for Dystonia, Diagnosis, Education and Research Northern Region Support Group www.actionfordystonia.co.uk Dystonia Society Helpline Tel: 0845 458 6322 or 020 7793 3650 References Geyer, H.L and Bressman, S.B (2007) Diagnosis of Dystonia Chapter 1pp1-14 in: Warner, T.T and Bressman, S.B (2007) Clinical diagnosis and management of dystonia: Informa Healthcare, London Pountney, D (2009) Causes, characteristics and management of dystonia. British Journal of Neuroscience Nursing Vol. 5, Issue 5 pp 205-208 5
What if I have a comment, suggestion, compliment or complaint about the service? If you want to make a comment, suggestion, compliment or complaint you can: talk to the people directly involved in your care ask a member of staff for a feedback form, or complete a form on the Trust website www.ntw.nhs.uk (click on the Contact Us tab) telephone the Complaints Department Tel: 0191 245 6672 We are always looking at ways to improve services. Your feedback allows us to monitor the quality of our services and act upon issues that you bring to our attention. - Points of You - available on wards or from staff. Some areas of the Trust have electronic feedback touch screens, staff can help you to use these. - Friends and Family Test - available from staff or online at www.ntw.nhs.uk/fft 6
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Further information about the content, reference sources or producti on of this leaflet can be obtained from the Patient Information Centre. This information can be made available in a range of formats on request (eg Braille, audio, larger print, easy read, BSL or other languages). Please contact the Patient Information Centree Tel: 0191 246 7288 Published by the Patient Information Centre 2018 Copyright, Northum mberland, Tynee and Wear NHS Foundation Trust Ref, PIC/117/0815 August 2015 V4 www.ntw.nhs.uk Tel: 0191 246 72888 Review date 2018 @ntwnhs 8 NTWNH S