Ataxia Centre 

Covid-19 is a new virus and there is much that we do not know or understand about it, however we do know that people with ataxia can experience a temporary worsening in their ataxia symptoms (balance, coordination, vision, speech, etc.) when they are suffering from any infections that cause flu-like symptoms or pneumonia. Therefore, we would expect that if a patient with ataxia develops symptoms from the coronavirus infection, their symptoms of ataxia may get worse while the flu-like symptoms or pneumonia persist.

Ataxia UK has updated information on their website regarding Covid-19 for people with ataxia.

People with a long term neurological conditions such as ataxia are classified as vulnerable in terms of Covid-19 according to the guidelines set out by Public Health England. This does not mean that people with Ataxia are more likely to acquire this infection, but would be expected to present with more severe symptoms due to a worsening of their underlying health problems. Information and advice is constantly changing, and we would recommend regularly reviewing the government website for updates on social distancing for vulnerable people.

Public Health England further outline that people with a number of other health conditions should be classified as being extremely vulnerable, such as people over 70 and those with certain conditions. These people will be notified by the NHS from 23 March with specific 'shielding' instructions to stay at home for at least the next 12 weeks. We would suggest that anyone with an ataxia diagnosis plus any of the below should also be included in this category and follow the same strict social distancing measures as this extremely vulnerable group:

 - Ataxia with any additional comorbidities including: diabetes, cardiac complications such as cardiomyopathy, or respiratory complications

 - Ataxia with significantly reduced mobility i.e. wheelchair bound or living in a care home

 - Ataxia with bulbar weakness i.e. difficulties swallowing
- Ataxia taking immunosuppressant for comorbidities or autoimmune ataxia

 - Ataxia with pregnancy plus underlying cardiac complications

 If you believe you fall into one of the above categories and have not been notified by the NHS via text or mail, you should contact your GP to discuss this further.

  • Clinics

    Two clinics are currently offered; a consultant-led general ataxia clinic (PG203/4) for the investigation, monitoring of ataxia and genetic counselling, and a multidisciplinary clinic (PG201) for the assessment and holistic management of patients with ongoing therapy requirements.

    The Multidisciplinary Ataxia Clinic comprises a lead clinician in Ataxia (Dr P. Giunti), an occupational therapist, physiotherapist and speech and language therapist with particular expertise in adult neurological rehabilitation. The clinic runs fortnightly and provides specialist assessment focussing on the functional impact of ataxia in relation to the individual’s everyday activities. The aim of the clinic is to provide a comprehensive assessment of each individual’s needs, offer specialist advice and optimise access to community services in a timely manner. Individuals are referred locally if appropriate or followed-up for therapy needs at the National Hospital for Neurology and Neurosurgery. In a formal survey conducted by Ataxia UK (over the period April 2006 – January 2007), 93% of patients reported satisfaction with the service they had received from the Therapy Interdisciplinary Ataxia Clinic.

    We also have very close links with the Neurogenetics Unit which provides a regional genetics service for inherited neurological diseases and a national and international diagnostic service for rare neurogenetic disorders. The Unit has Clinical Pathology Accreditation (CPA) and is a member of the UK Genetic Testing Network. The staff have many years’ experience in the analysis and interpretation of molecular genetic results. This link with the Ataxia Centre allows the development of new genetic tests.

  • Conditions treated

    • All forms of ataxia, particularly genetic and progressive degenerative causes, including:
    • Spinocerebellar ataxias (SCAs)
    • Friedreich’s ataxia (FRDA)
    • Autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS)
    • Ataxia with oculomotor apraxia (AOA)
    • Ataxia telangiectasia (ATM)
    • Dentatorubropallidoluysian atrophy (DRPLA)
    • Multiple system atrophy (MSA-C)
    • Idiopathic ataxia (including idiopathic late-onset cerebellar ataxia, ILOCA)
    • Autosomal dominant cerebellar ataxia (ADCA) and autosomal recessive cerebellar ataxia (ARCA)
    • Paraneoplastic ataxias
    • Autoimmune ataxias (including GAD-related ataxia)
    • Coeliac ataxia
    • Ataxia with vitamin E deficiency (AVED)
    • Ataxia with co-enzyme Q10 deficiency (ACoQ10D)
    • Ataxia related to hereditary spastic paraparesis (HSP)
    • Ataxia related to mitochondrial disorders
    • Ataxia related to metabolic disorders
  • Research

    The NHNN Ataxia Centre participates in many of the principal international clinical and basic science research consortia on ataxia, including the European Integrated Project on Spinocerebellar Ataxia (EUROSCA), the European Friedreich’s Ataxia Consortium for Translational Studies (EFACTS), as well as the 100,000 Genomes project of Genomics England and some of the most significant interventional (drug/therapy) trials in ataxia. We are therefore able to offer participation in research and up-to-date information on the current state of research in the various forms of ataxia.

    The Ataxia Centre has very strong links with Ataxia UK, the principal charity and support organization representing patients affected with ataxia in the UK. Representatives of the charity attend clinics within the Centre and can give patients practical and emotional support.

  • Service performance

    There were more than 800 patient visits within the Ataxia Centre last year. We are one of only three specialist Ataxia Centres in the UK accredited by Ataxia UK. To achieve accreditation, centres have to comply with criteria devised following consultation with patients with ataxia and clinicians with an expertise in ataxia, to provide ‘excellence of care for the diagnosis and management of the ataxias, and access to a wide range of integrated services, as well as links to research programmes’. NHNN has recently been awarded centre of expertise status as part of the European Commission’s European Reference Network for Rare Neurological Diseases (ERN-RND). Dr Paola Giunti is the UK representative on the Board of the Network

Prof Paola Giunti
Consultant

 Contact details

Ataxia Centre
National Hospital for Neurology and Neurosurgery
Queen Square London, WC1N 3BG

General enquiries
Telephone: 020 3448 3100 or 020 3448 3141

GP enquiries
Telephone: 020 3448 4777 (Patient Referrals)
Fax: 020 3448 4723
Email: kelly.uckac@nhs.net

Service manager - Leigh Palmer
Email: leigh.palmer@nhs.net