In July 2019, The Neurological Alliance published the results of the 2018/19 National Neurology Patient Experience Survey. The Neurological Alliance, of which Ataxia UK is a member, is the only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition.

The research represents the largest ever survey of people with neurological conditions in England with 10,339 responses.

The report written using the survey results - entitled ‘Neuro Patience’ to highlight the fact that people with neurological conditions are running out of patience - has three key messages. Care and support for people with neurological conditions must be:

  • Accessible – the speed of access to specialists must improve overall and should not vary depending on where you live.
  • Personalised – and tailored to the needs of each individual.
  • Holistic – addressing people’s mental health, social care needs, and their financial security.

The findings show that people’s experience of care and support for neurological conditions remains poor. For example, 39% of respondents saw their GP five or more times before being told they needed to see a neurologist. A staggering 43% of respondents were not given written information when they were told they had a neurological condition. These findings are disappointing, but probably not surprising to those living with a neurological condition.

What recommendations have been made?

The experience of over 10,000 people cannot be ignored. As such, the report also details a number of recommendations aimed at improving care for people with neurological conditions. Among these, is the recommendation that a national neurology plan be urgently developed, to address delays in the system, and regional variation in access to services. The Neurological Alliance also recommends that neurology should be prioritised for mental health improvement initiatives aimed at people with long term conditions.

The full report

Ataxia UK’s Chair of Trustees, Dr Harriet Bonney, and CEO, Sue Millman, were invited to attend the launch of the report, and joined in discussion about the implications of the report.

Sarah Vibert, Chief Executive of The Neurological Alliance wrote in the report: “The Neurological Alliance is waiting, somewhat impatiently, for people with neurological conditions to be prioritised by the health system, recognised by the benefits regime and given access to appropriate social care. This report sets out what we want to happen to ensure that people with neurological conditions do not have to wait much longer for care and support that is accessible, personalised and holistic.”

To read a summary of the report, or the full report, go to The Neurological Alliance website.

 Posted on 19/07/19