Referrals - Ataxia UK


Research, Appendix & References

Following the referral to a neurologist, in many cases it may be relevant for either the GP or the neurologist to refer patients to other specialists. Depending on the symptoms experienced, and the type of ataxia a patient is diagnosed with, a variety of different specialists will be involved in their care. Section on Medical Interventions gives an overview of some of the symptoms people with ataxia can experience and the referrals recommended. Section Allied health professional interventions highlights the importance of allied health professionals in the care of patients with ataxia and early referral is recommended.

A summary of referrals is shown below:

  • Community paediatric multidisciplinary team
    Children should be referred to the community paediatric multidisciplinary team.
  • Spinal surgeon/orthopaedic surgeon/orthotist
    Patients with Friedreich’s ataxia often develop scoliosis. Referral to spinal surgery and/or orthopaedic surgery may therefore be appropriate in some cases; referral to physiotherapy may also be helpful. Patients with Friedreich’s ataxia may develop pes cavus, therefore referral to an orthopaedic surgeon with specialty in foot and ankle surgery and to an orthotist may be appropriate.
  • Cardiologist
    Cardiac abnormalities are common in Friedreich’s ataxia, therefore a referral to a cardiologist is required. Other ataxias are not normally associated with cardiological problems.
  • Urologist
    Bladder problems can be a feature of some of the ataxias. They occur, for example, in multiple system atrophy. Also, in later stages of various spinocerebellar ataxias urinary incontinence can sometimes be experienced.
  • Audiology services
    Some people with ataxia (eg: Friedreich’s ataxia and some spinocerebellar ataxias) experience hearing problems so referral to Audiology services, hearing therapist and/or speech and language therapist is recommended.
  • Neuro-ophthalmologist
    Many of the ataxias are associated with eye symptoms such as reduced vision, diplopia or oscillopsia due to nystagmus. A referral to a neuro-ophthalmologist and other specialist services is recommended since in some cases treatment may be available.
  • Neuropsychologist/ neuropsychiatrist
    Some ataxias may be associated with cognitive problems; therefore in selected cases a referral to Neuropsychology department is recommended. Referral to a neuropsychiatrist is recommended in patients with ataxia and severe cases of dementia or psychosis.
  • Allied health professionals
    Patients would benefit from a referral for neurorehabilitation at the early stage of the disease in order to establish strategies to maintain function (eg: balance, upper-limb coordination, speech and swallowing).

Physiotherapy is often valuable, particularly to preserve mobility, and to avoid other problems, such as ones associated with being in a wheelchair. Regular follow-up is important. Patients will also need advice on walking aids at the different stages of their condition. Referral to a wheelchair clinic for specialist seating advice is important at the appropriate stage of the disease.

Patients with progressive ataxia often experience dysarthria, which later in the disease may cause communication difficulties. A referral to a speech and language therapist is therefore important. Dysphagia becomes more common as the disease progresses; therefore this should also be assessed by a speech and language therapist or other appropriately trained professional.

Ataxia patients benefit from regular assessments by an occupational therapist. Occupational therapists have expertise in assessment of daily tasks and providing specific interventions which may include teaching strategies, recommending equipment or adaptations. Occupational therapists work in various health and social care settings. As a general rule, local authority based (social services) occupational therapists have a prime focus on home adaptations and equipment provision. A referral to a community rehabilitation team or neurological outpatient setting should be considered for further assessment of specific areas. Specialist neurological hospitals may offer expert assessment via clinics. For further information on referrals contact the College of Occupational Therapy.

  • Specialist palliative care team
    When an individual with ataxia has a limited lifespan and/or distressing symptoms it may be relevantto refer to a specialist palliative care team.
Patient Support groups
Referral to a patient support organisation is recommended.

  • Ataxia UK provides support to people with all ataxias (apart from ataxia telangiectasia where there is a dedicated charity).
  • The AT Society supports people with ataxia-telangiectasia
  • The MSA Trust provides support solely to people with multiple system atrophy
  • The Niemann-Pick Disease Group supports people with Niemann-Pick Disease.

When progressive ataxia is first diagnosed often patients will not have heard of the condition and will not know anyone else with it. At this stage the support that can be provided by patient support organisations can be crucial. The possibility of meeting others in the same situation, receiving emotional support and information from a Helpline and finding out how others cope with the symptoms can be of much benefit to people with ataxia. Although each support organisation provides its own services, many will also provide the opportunity for patients to be informed about research developments and take part in research projects.

Contact details
  • Ataxia UK (registered charity in England and Wales (number 1102391) and in Scotland number (SC040607).12 Broadbent Close, London N6 5JW. Helpline: 0845 644 0606
  • MSA Trust for multiple system atrophy (registered charity number 1062308).MSA Trust 51, St. Olav’s Court, London SE16 2XB. Tel: 0333 323 4591
  • Ataxia-Telangiectasia Society (registered charity number 1105528) IACR-Rothamsted, Harpenden, Herts AL5 2JQ Tel: 01582 760733
  • Niemann-Pick Disease Group (UK) (registered charity number 1061881) 11 Greenwood Close, Washington, NE38 8LR Tel: 0191 415 0693

This information is taken from Management of the ataxias - towards best clinical practice third edition, July 2016. This document aims to provide recommendations for healthcare professionals on the diagnosis and management of people with progressive ataxia. To view the full document, including references, click here.

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