Clinical Guidelines on Best Practice

Charity rolls out new ataxia guidelines
National guidelines have been launched for the treatment and care of ataxia. The 50-page guidelines are now available free of charge from national charity Ataxia UK.

“Although more than 10,000 people in the UK have a type of ataxia, many doctors and medical professionals may not be aware of the condition or how to treat it,” said Dr Liz Harrison, Chair of Ataxia UK.

“From what our members tell us, there is a big need for the guidelines. Covering a wide range of topics including genetic testing, occupational therapy, and palliative care, we hope that any professionals with an interest in ataxia will take up the offer of a free copy.”

The guidelines have been drawn up with the help of neurologists, geneticists, and experts in other disciplines including speech and language therapy and physiotherapy. For the first time the guidelines have a section on occupational therapy that is accredited by the College of Occupational Therapy.

Dr Harrison said, “Improving treatment and care for people with ataxia is one of our main aims as a charity, along with funding research and supporting people who live with the condition. Although we are not a big charity, we believe the professional standard of our new guidelines shows that smaller groups can still influence and improve care.’

Ataxia UK also aims to roll out a system of accredited Ataxia Centres round the UK, and has just opened the third in Oxford. The model offers specialist clinics with neurologists and support from a dedicated Ataxia Nurse, with the aim of providing integrated care and referrals for ataxia patients.

Notes
• Ataxia means ‘lack of order’. People with ataxia have a type of degenerative neurological disorder that affects walking, speech, and co-ordination. Over 10,000 people in the UK have ataxia and there is currently no cure. A recent study showed that just 7% of the public know what ataxia is.
• Ataxia UK is the national charity for people affected by ataxia, providing support services and funding ground-breaking research. In the past five years they have spent over £3 million on research into treatments and a possible cure for ataxia, with several important breakthroughs. Charity no: 1102391 www.ataxia.org.uk
• Guidelines for the management and treatment of ataxia are available now from Ataxia UK, contact 020 7582 1444 or email research@ataxia.org.uk

For more information please Claire McGowan on 020 7587 3925 mob 0779 2214508 email cmcgowan@ataxia.org.uk