The Neurological Alliance of Scotland has released a report which analyses the Scottish responses to the 2021/22 National Neurology Patient Experience Survey (known as #MyNeuroSurvey) which was open from October 2021 to February 2022. 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.
‘Together for the One in Six’ report summarises the responses in relation to existing NHS Scotland Neurology services, draws conclusions and makes recommendations for systemic change. It is estimated in the Report that One in six people in Scotland live with a neurological condition – that is, any condition affecting the brain, spinal cord or nervous system – hence the Report’s title.
Some of the key themes in Scotland were consistent with the findings for the UK as a whole and applied to all neurological conditions (of which there are etimated to be 600) but include meningitis, MS, Parkinson’s, MND, epilepsy, long-COVID, and M.E.
- Delays to treatment and care. In Scotland almost half of the adults (49%) and more than half of children (55%) experienced delays to access a routine neurologist appointment. However, children experience delays across more services than adults, and five times more children were awaiting diagnosis than adults.
- Mental health support crisis. In Scotland, 4 out of 10 adults (40%) and 3.5 out of 10 children and young people (35%) reported that their mental health needs were not being met ‘at all’.
- Lack of information and support. Receiving a diagnosis is often life changing and requires ongoing support and information. Yet in Scotland a third of adults (30%) and over a third of children (38%) were given no information at diagnosis, and a quarter of children (26%) and a fifth of adults (18%) said they received no explanation.
M.E., as a neurolgical condition (ICD 11 under code 08 Diseases of the nervous system – 8E49), is referenced specifically in the Report on a number of occasions e.g. “Adults in our survey waiting over 12 months to get a diagnosis are most likely to be those with peripheral neuropathy (64%), ME (58%) and fibromyalgia (49%). Neurological conditions are often hard to diagnose, and a recurrent theme in the survey is the lack of knowledge amongst GPs, with some dismissing symptoms as anxiety rather than referring onto neurology.”
There is even a highlighted quote from an adult with M.E. which lays out starkly how far behind other neurological conditions support for those with M.E. lies.
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 action.”
In summation, Alice Struthers, Programme Director, Neurological Alliance of Scotland says
It is clear from survey responses that people with neurological conditions are further than ever from accessing care and support which meets their needs to live well. It is imperative that the recommendations in this report are adopted to truly improve the lives of families living with neurological conditions in Scotland.