A new specialist nurse has begun supporting patients with ataxia across the South West of England.
Ataxia is a rare neurological condition that primarily affects balance and coordination. While the nurse cannot provide treatment, the role focuses on guiding patients to services such as physiotherapy, speech therapy, and other support that may improve quality of life. The service, offered via video call or telephone, aims to link local NHS providers with ataxia specialists in Oxford, Sheffield, and London.
The pilot scheme covers the NHS-defined South West region, including Cornwall, Devon, Dorset, Somerset, and parts of Hampshire, Wiltshire, and Gloucestershire. Ataxia UK, the charity behind the initiative, hopes it will provide a supportive connection for patients who previously lacked local specialist resources.
Malcolm Race, an artist from Totnes, Devon, has lived with the condition for many years. In his case, his body reacted to gluten, producing antibodies that damaged the cerebellum, the part of the brain controlling balance. He first noticed symptoms while working at an art college, struggling to stay upright. Malcolm said his diagnosis, made in Sheffield, was “devastating,” and that walking remained exhausting, requiring conscious effort for every step.
The charity estimates around 10,000 people in the UK have the progressive form of ataxia, with approximately 500 patients identified in the South West. Nurse Camilla Notley hopes to bridge the gap between specialist NHS centres and local neurology teams. She said: “A lot of these patients will have had a lifetime battle, with trying to ensure they can access the right service for whatever they need at that time. If I can bridge that gap and make their lives easier, then I’ve done the job that I’m here to do.”
Notley emphasised that patients often cope with symptoms without realising they are related to ataxia. “Unless you are asked about it, you don’t realise that [a symptom] is being caused by your condition. So you don’t think to ask for help, you just cope, and your quality of life could be better. You just need to know where to ask for help,” she said.
Specialists such as Professor Andrea Nemeth, a neurogenetics expert at Oxford University Hospitals, highlighted the value of allied health input. “Medical input is relatively limited to the diagnostic phase, so seeing a neurologist and, or a geneticist; but actually the long-term management is much better addressed by allied health professionals,” she said. She added that the ataxia nurse can signpost patients to vital services including occupational therapy, palliative care, respiratory support, and dietitians.
For Malcolm and his wife Mandy, the support has been transformative. Mandy described the help as “lifesaving,” providing access to local services and easing feelings of isolation. The service is funded by the National Lottery Community Fund, and if successful, Ataxia UK hopes to expand similar support nationwide.
