Ataxia UK has worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of specialist ataxia centres in Europe. This was part of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of Europeans with brain conditions.
The project so far has involved gathering feedback from people with ataxias or their carers on the impact of using specialist ataxia centres (SACs), compared with using standard neurological clinics, looking at treatment and care, costs, and healthcare resource use. SACs are places where people can see a clinical team of experts in ataxia, discuss their symptoms and their needs, receive medical advice and specific interventions to manage their conditions Feedback has been collected from people with ataxias in the UK, Germany and Italy.
Recently, a new paper was published sharing the results of the second part of the VoT project, focusing on the UK only. 277 participants took part in the survey, aged 16 years old and over, living in the UK. Participants who attended a specialist ataxia centre reported better management of their symptoms and more personalised care compared with participants who never attended a SAC.
Most participants had to wait to see a neurologist, with a delay from six months to over five years in referral after their first symptoms occurred. This is a concern, and there is a need to improve the referral rate time so more people can access a neurologist sooner. In this study, only 29% of participants attended a SAC. This low proportion, similar to the third of patients attending a SAC reported in a previous Ataxia UK survey, needs to be addressed.
The majority of those currently attending a SAC have been attending for a least 2 years. 96.8% of those attending SACs gave positive feedback on the role of the SAC in understanding their condition. 86.6% gave positive feedback on the role of SACs in coordinating referrals to other healthcare specialists. 85.2% gave positive feedback on the role of SACs in offering opportunities to take part in research studies.
77% of those attending a SAC gave positive feedback on symptom management compared to 55% of those not attending a SAC. This significantly higher satisfaction with symptom management among those attending SACs was not seen for participants in Germany and Italy. This difference may be due to the unique involvement of Ataxia UK and UK patients in shaping the SAC services, including monitoring and accreditation of UK SACs by Ataxia UK. Â
Costs were not significantly different between those attending a SAC and those who did not. There were some barriers for patients in accessing the SACs, and some gaps in the care provided, including long travel times to attend a SAC, lack of access to benefits and social workers, and financial difficulties.
Overall, the results showed significantly higher satisfaction with care in those who attended a SAC compared with those who did not, at similar costs. The findings can be used to inform policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases. Improving access to SAC for patients across the UK is one key policy recommendation of this study.
Read the full paper here.
Read the results from the first part of the VoT project here.
