London Ataxia Centre Gains Accreditation as Centre of Excellence

Ataxia UK today accredited the London Ataxia Centre, which opened at the National Hospital for Neurology and Neurosurgery, part of University College London Hospital, in February 2005, following an award of £21,490 from Ataxia UK, as an ataxia centre of excellence.

Dr Paola Giunti set up the London Ataxia Centre in collaboration with Professor Nicholas Wood, both neurologists at the National Hospital for Neurology and Neurosurgery with expertise in the ataxias. Dr Giunti runs the monthly-specialised Ataxia Clinics and worked with representatives from Ataxia UK and the NHS to ensure that the criteria for accreditation were met.

Dr Giunti commented: “In order to become an Ataxia UK accredited centre we had to comply with a number of criteria. Indeed, these have been devised following consultation with people with ataxia and their carers and with neurologists. We are promoting the concept of the active patient - they are driving the development of the service.”

“The criteria include longer appointments, with a new patient’s appointment taking 45-60 minutes; continuity of care by seeing the same specialist at each visit; streamlined and fast referrals, as well as support both during and between visits via the neurogenetic nurse. The Centre offers support from Ataxia UK volunteers who are extremely helpful through their experience of caring or being close to people with over the years. Attending the Ataxia Clinic guarantees that a patient will receive treatment from a specialist with in depth knowledge of ataxia.”

Alastair Macdougall, Chief Executive, Ataxia UK, commented: “The Ataxia Centre will ensure that people with ataxia receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research into these little known conditions. Our plan is to open a UK network of Accredited Ataxia Centres of Excellence with consistently excellent services.”

Pit Rink, Chairman of Ataxia UK, made the presentation of the accreditation certificate. Also present were representatives from the National Hospital for Neurology and Neurosurgery, Friends of Ataxia UK and some Trust Members.

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Notes to the Editor

Ataxia UK

The ataxias are rare neurological disorders. It was previously estimated that around 5,000 people in the UK have the condition. This is now thought to be an under-estimate. People of any age may be affected, from babies to adults. People with ataxia may become progressively disabled, ultimately depending on others for their most basic personal needs. Many forms of ataxia are inherited. There is currently no treatment, and little that can be done to relieve symptoms.

Ataxia UK (http://www.ataxia.org.uk) is registered charity providing information, contacts and support for people with ataxia, their families, friends and carers. We fund world-class research into causes and treatments.

CRITERIA FOR ATAXIA UK ACCREDITED CENTRES

Involvement of clinician(s) with interest/expertise in ataxia over a number of years and seeing on average at least 8 ataxia patients per month. In this context 'ataxia patients' are defined as people with ataxia as their dominant clinical syndrome.
Involvement of clinician(s) with a track record of research on the ataxias or who can provide evidence that they keep updated on recent developments in ataxia research
Access to all relevant available genetic and non-genetic diagnostic tests

It is important that people attending any of the centres have access to the most up-to-date diagnostic tests and that there is equality in the availability of tests in all centres. In some cases, e.g. for rare genetic tests, it may be appropriate for all tests to be carried out through one centre.

Testing should include all relevant imaging, neurophysiological, biochemical, immunological and genetic tests.
Follow-up offered (at least once a year) with continuity of care (i.e.: see same neurologist at least 3 out of 4 visits).
Good, supportive handling of diagnosis and other sensitive information (monitored by feedback from people attending the centre and/or carers)
Evidence of good referral service to support services to include physiotherapists, OT's, speech therapists and Ataxia UK.
Direct referral to other specialist clinical services (e.g. cardiologists, orthopaedists, psychiatrists, ophthalmologists etc.) with fast track potential for relevant cases.
Evidence of good communication with primary care

Examples of good practice:

regular correspondence with clinic letters sent out within 1 month from visit

send GPs copies of correspondence with other specialists

telephone contact with GPs

copying letters to patients when helpful

copies of letters sent to GP to be also sent to other professionals working with patient (e.g. physiotherapists) when relevant

brief information on the natural history of the condition to be sent when a diagnosis is reached to help GP to manage the person with ataxia and for example help discriminate which symptoms are part of the condition
Mli>any useful information leaflets sent (e.g. Ataxia UK's leaflets)
Evidence of links with and support of local paediatric neurologists
Evidence of a system for providing both medical information and support /advice for people with ataxia and carers between clinic visits.
Willingness to input patient information to a local database
Willingness to collaborate with other Ataxia Centres in research (e.g. for recruitment to trials, validation of novel genes or other research projects).
Preparedness to accept GP referral from non-local patients.
Evidence that the relevant NHS Trust supports the development of an Ataxia Centre.
Agreement to implement an annual monitoring system based on patient feedback.
Willingness to attend annual meeting of ataxia centres (for problem solving, best practice and research discussions).

Further information from:

Dawn Giesler, Press Officer
Ataxia UK
Mobile: 07967 199465
Email: dgiesler@ataxia.org.uk

Hilary Box, PR Manager
Ataxia UK
Tel: 020 7582 1444
Email: hbox@ataxia.org.uk

University College London Hospital
Communications Unit
Tel: 020 73809897

For the latest news from Ataxia UK and to join our media mailing list, contact Ataxia UK Press Officer Barnaby Levy on 020 7582 1444 pressoffice@ataxia.org.uk.

Helpline: 0845 644 0606

London Ataxia Centre Gains Accreditation as Centre of Excellence