South West
Specialist Ataxia Nurse
What can the Specialist Ataxia Nurse do for you?
- Provide information and support about ataxia for you, your family, carers and friends.
- Advise on recognition and management of symptoms like mobility, speech, swallowing, bladder and bowel changes, sleep, sexual function and diet.
- Provide emotional and psychological support.
- Offer one-to-one consultations by phone or video.
- Assess your individual needs and care priorities.
- Advise and support you with decisions about treatments and interventions.
- Give guidance on ongoing care at home, future planning, and end-of-life care.
- Assist you in accessing local services and healthcare professionals.
- Provide advocacy and support when dealing with health and care services.
- Attend specialist clinic appointments with you (where appropriate).
The Specialist Ataxia Nurse cannot:
- Visit you at home.
- Take the place of your GP or neurologist.
- Provide an emergency service.
- Manage the treatment of your ataxia.
Who is the service for?
To be eligible for the Specialist Ataxia Nurse Service:
- You or a family member has a confirmed diagnosis of a progressive ataxia, or a suspected diagnosis based on family history of ataxia.
- You must live in the NHS-defined South West region of England. This includes postcodes beginning with: BA, BH (excluding BH24 & BH25), BS, DT, EX, GL (excluding GL17), PL, SN (excluding SN7), SP (excluding SP6, SP10, SP11), TA, TQ, TR.
If you are unsure if you meet this criteria, please get in touch with us.Â
Your multidisciplinary team
There are many health professionals and services that may be involved in your care to help maximise your independence, dignity and quality of life. These can include: community nurses, dietitians, occupational therapists, physiotherapists, palliative care, respiratory services, social services and speech and language therapists. The Specialist Ataxia Nurse works closely with these services and will be able to assist you in accessing these services.
The Specialist Ataxia Nurse is not part of the NHS and cannot manage the treatment of someone with ataxia, but they can speak with the health professionals who do treat patients with ataxia.
It is important to continue accessing care from your local neurology team. Where possible, you may also benefit from referral to a specialist ataxia centre, where consultant neurologists with expertise in ataxia can provide additional support.
For a referral to the Specialist Ataxia Nurse service:
Please fill out the form below. Depending on your needs, our Advocacy Service may be better placed to support you than our Specialist Nurse. Once you have filled in this form, our Helpline and Advocacy Manager will assess your referral and ensure that either the nurse or an advocate gets in touch to provide appropriate support.Â
If you need urgent advice, you should contact your GP or the out of hours GP service on 111. In the event of an emergency, please contact 999.