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M.E. in Northern Ireland: our NVTV interview

August 17, 2017

Less than half of UK NHS boards commission a specialist service for M.E., and Northern Ireland has no provision at all, leaving thousands of desperately ill people unable to access to care and support.

That's the message shared by Action for M.E. on last night's Focal Point Extra, broadcast in Belfast on NVTV.

Clare Ogden, Head of Communications and Policy, was interviewed on the programme alongside M.E. patient Sally Burch, Hope 4 Fibro and M.E. Northern Ireland; and Louise Skelly, Chief Executive, Patient and Client Council.

Sharing the findings of our Spotlight on specialist services report, we highlighted that less than a third of UK commissioners collect any data on the number of people with M.E. in their local area, and questioned how the right level of services can be commissioned if they don't know how many people need those services.

Action for M.E. is now undertaking work to

  • ask NHS commissioners across the UK to work with us on developing a framework for collecting data on M.E. prevalence and clinical pathways. We want to build a model that can be replicated in other areas, and we will be speaking to key policy-makers about how we can work with them to take this forward.
  • explore how we can collaborate with people affected by M.E., health professionals and other patient organisations – like the Patient and Client Council, and Hope 4 M.E. and Fibro Northern Ireland – to develop a national blueprint for appropriate, patient-led specialist M.E. services that consistently meet the needs of children and adults with M.E.