The Specialist Ataxia Clinic based at the National Hospital for Neurology and Neurosurgery (NHNN) and is the first Ataxia Centre in the UK to be accredited by the patient support organisation Ataxia UK. These are Centres of Excellence, where the aim is for people with ataxia to receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research. Families have access to a more comprehensive support and advice service. Dr Paola Giunti and Professor Nicholas Wood established this centre at NHNN in 2005. The Centres have been set up in direct response to needs identified by people affected by ataxia, as well as clinicians with expertise in the condition. Centres must comply with a number of criteria.
Patients who are interested will be informed about research and given the opportunity to take part in appropriate research projects. The clinic team includes two clinicians, Dr Paola Giunti and Professor Nicholas Wood, and a neurogenetic nurse, Mr Colm Treacy. After the clinic visit patients have the opportunity to talk to a representative from the ataxia patient support organisation Ataxia UK. The representatives have direct experience of ataxia and will offer emotional and practical support, as well and information on the services Ataxia UK offers.
The clinic is held once a week. It is a specialised service for all patients with a suspected or confirmed genetic ataxia or other degenerative cerebellar ataxia.
Referrals are accepted from Neurologists and GPs throughout the UK. The clinic provides:
- Diagnosis of patients' conditions
- Longer appointments than standard general neurology outpatient appointments – 45 to 60 minutes for new patients and 30 minutes for follow-up
- Continuity of care by seeing the same physician
- Referral to the newly established interdisciplinary therapy clinic (allowing co-ordinated access to all relevant disciplines) Streamlined referrals to named ataxia specialists in a range of disciplines1
- Close links with primary, community and secondary care services for shared care and education on the ataxias
- Pre-symptomatic genetic counselling and testing
- Pre-natal genetic counselling and testing
- Validation of new genetic tests as they emerge
- Primary care liaison via the neurogenetic nurse, for specific local needs
- Establishment of an ataxia database, facilitating research
1. Streamlining referrals to other specialists already interested in the ataxias: Cardiologist Prof. McKenna at the Heart Hospital UCLH Neuropsychiatrist; Dr. J. Foong at NHNN Neurophysiologist; Dr. C. Cordivari at NHNN Neuro-ophthalmology; Mr. F. Bremner at NHNN Neuropsychologist; Dr. L.Cipolotti at NHNN Neurological and Spinal surgeon; Mr A. Casey at NHNN Orthopaedic surgeon; Mr. G. Etherington at the Middlesex Hospital Orthopaedic surgeon; Mr. Jig Patel at the Middlesex Hospital Orthopaedic surgeon; Mr. Nordeen at Great Ormond Street Hospital
There are opportunities for patients to take part in research projects. Current projects include an EC funded multi-centre natural history study (EUROSCA) ; a genetic screening study for identification of the gene responsible for SCA11; and verification of the value of validated ataxia rating scales for future use in therapeutic trials. A clinical trial for Friedreich’s ataxia is expected to start during 2006.