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New report: specialist NHS services for M.E. in the UK

July 25, 2017

A new report by Action for M.E. into specialist services has confirmed that vast numbers of people with M.E. do not have any specialist services in their local area.

The report, titled ‘Spotlight on specialist services: UK healthcare for people with M.E.’, also highlights that many services lack the capacity to make home visits, which restricts access to specialist services for the severely affected.

Furthermore, the report shows that:

  • less than a third of health commissioning boards across the UK confirmed they have any data on how many people in their locality have M.E., leaving service commissioners unable to identify the scale of need for specialist services
  • less than half of all health commissioning boards in the UK commission a specialist service for M.E., and current services are overwhelmed by the level of need
  • less than half of UK commissioning boards refer people with M.E. onto other secondary services; those that do named 25 different examples, suggesting uncertainty about treatment and care pathways, and patients potentially being routed to inappropriate care.

You can view the data shared by your local Clinical Commissioning Group (CCG), Health Board or Health and Social Care Trust via our interactive maps showing:

Our findings are based on a Freedom of Information request we sent to CCGs, Health Boards and Health and Social Care Trusts in England, Wales, Scotland and Northern Ireland, requesting the data each held on M.E. prevalence, specialist health services, and secondary care referrals.

Based on these findings, Action for M.E. will take action to address the ignorance, injustice and neglect experienced by patients with M.E. We will:

  • work with policy-makers and NHS organisations to develop and implement a method to collect data on M.E. prevalence and clinical pathways
  • work with health professionals, other M.E. organisations and people affected by M.E. to explore how we can develop a national blueprint for appropriate, patient-led specialist M.E. services that meet the needs of people with M.E.

If you are interested in working with us to take this forward, please contact our Policy Officer, Katie McMahon.