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Dystonia Clinic – Walkergate Park

Dystonia is a neurological movement disorder. This leaflet has information about what to expect when attending the Dystonia Clinic at Walkergate Park.

This leaflet may not be reproduced in whole or in part, without the permission of Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

  • 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.

  • 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

  • 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

  • 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.cntw.nhs.uk (click on the ‘Contact Us’ tab)
    • telephone the Complaints Department 0191 245 6672
    • email complaints@cntw.nhs.uk Please note that information sent to the Trust via email is sent at your own risk
    • 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.
    You can provide feedback in the following ways:
    - the quickest way for you to do this is to complete our short online survey at
    www.cntw.nhs.uk/poy
    - complete a Points of You survey, available from staff

  • Information about content, other formats and version control

    Further information about the content, reference sources or production of this leaflet can be obtained from the Patient Information Centre. If you would like to tell us what you think about this leaflet please get in touch.

    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 Centre Tel: 0191 246 7288

    Published by the Patient Information Centre
    2020 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
    Ref, PIC/117/1018 October 2018 V5
    www.cntw.nhs.uk Tel: 0191 246 7288
    Review date 2021