A report from a survey conducted by the Neuro Alliance Scotland includes issues faced by people with ME/CFS when accessing social care. The report ‘Together for the 1 in 6: findings from My Neuro Survey' is available from the link below together with a petition to ask the Government to set up a Neuro Taskforce to deliver real change.
This report analyses the Scottish responses to the 2021/22 National Neurology Patient Experience Survey (known as #MyNeuroSurvey). This is the first-time neurological experiences have been collected in this way across the whole of the UK. The survey was designed to capture the experiences of both adults and children living with neurological conditions. The questionnaire also captured the experiences of carers.
There were 7881 adult responses across the UK to this survey, of which 10% (784) came from Scotland. 629 children and young people responded across the UK, of which 8% (50) came from Scotland.
This report summarises the responses in relation to existing NHS Scotland Neurology services. It draws conclusions and makes recommendations for systemic change.
There are particular issues for those conditions where there is no care pathway. For example, people with ME often struggle to access social care support. 70% of adult respondents with ME had multiple conditions. Many of them commented that their ME diagnosis obscures their doctor’s ability to help them with their other condition.
There is no care path for myalgic encephalomyelitis. There is no acknowledgement in primary care of vulnerability or care needs. Disability denial is common in primary care, within the DWP for financial support and in social care provisionPerson with ME/CFS
This survey assumes that there are services – health and social – for people with ME. There aren’t any services. None at all. Not only is there no interested neurology clinician in my area there are none in the whole of Scotland, where I live. Clinicians – in neurology and in wider healthcare – and civil servants simply have no idea of the size of the disease burden, which is large, nor the impacts on individual lives, which are usually severe. There is a desperate need for actionAdult with ME/CFS
Discussion on BBC Radio Scotland Lunchtime Live (49.55)
Listen to the interview about the report from Neurological Alliance Scotland (NAoS) released today. The radio presenter interviews Mia Granger, Aberdeen who was diagnosed with ME aged 12 and Alice Struthers from NAoS who provides comments on the findings of the report.