Today, the Neurological Alliance launched the report from their 2018/19 National Neurology Patient Experience Survey The report: Neuro Patience; was chosen with intended irony – the results show that the experience of people with neurological conditions remain poor.

The main message in the report is that care and support for people with neurological conditions should be accessible, personalised and holistic – but the survey findings show that this is far from the reality for many people.

The headline findings are:

  • People with neurological conditions are facing long delays in the health system, and a lack of access to specialists. Around a third of respondents waited more than 12 months to see a neurologist.
  • Care for people with neurological conditions is not tailored to their individual needs. Only 42% of people with neurological conditions were given written information at the time of diagnosis; this compares to 83% of people with cancer. Just 10% of people with neurological conditions have been offered a care plan.
  • Experience of social care are worse than their experience of health care. Many people with neurological conditions are dependent on unpaid carers.
  • Disability discrimination continues to be widespread in the workplace, with almost a third of respondents saying they had their contract of employment terminated due to their neurological conditions.
  • Many respondents report problems accessing welfare benefits. This perhaps contributes to the 43% who said their financial needs are not being met.

The survey received over 10,000 responses meaning this year for the first time the results are broken down to regional level, based on the Sustainability and Transformation Partnership (STP) footprints. The findings reveal wide geographic variation in the experience of people with neurological conditions, representing a postcode lottery in access to care. People living in the most deprived areas report the poorest experiences of care.

The National Neurology Patient Experience Survey presents a comprehensive picture of the experiences of people with neurological conditions in England. The largest survey of its kind, it has been run by The Neurological Alliance biennially since 2014. Find out more online.

  

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