English ME/CFS Delivery Plan published

Delivery plan for ME/CFS in England

After a long wait – over 3 years – the strategy for ME/CFS in England has been published by the DHSC in consultation with a wide range of stakeholders. The Parliamentary Under-Secretary of State for Public Health and Prevention, Ashley Dalton acknowleges that:

“we have not been able to include every ask of that group in the final delivery plan, which must of course reflect what is practically feasible and financially viable and affordable.”

As with the Interim delivery plan it focuses on:

research
attitudes and education
living with ME/CFS
language

It includes a list of actions to be taken, measures of success or indicators of progress and proposed delivery timelines. This applies only to England but Welsh Government civil servants have been monitoring the development of the plan and WAMES will be discussing it with them and with NHS planners.

Key points from the plan:

Research

4 problem areas identified – low capacity in researrch community, need for health & care research, little bioledical research funding, perception of bias about prioroties.
plan to explore links with other post-acute infection conditions
ambitions to stimulate further research in this area
build a vibrant ME/CFS research community
ensure those with lived experience are at the heart of research
announce new research investments

Attitudes and education

6 problem areas are identified – patients not believed or treated equally, professionals attitudes are largely unknown, the impact of ME/CFS is not acknowledged, NICE guideline not widelty utilised, little healthcare professional training, little training for other professionals
Further e-learning modules will be developed and shared throughout NHS England, NHS websites, Medical Schools Council, Dept of Education, networks, British Association of Social Workers, GMC, RCP
Ways to raise public awareness will be considered
Ways to assess public sector professionals’ current attitudes will be considered
Developing a shared learning resource on ME/CFS, which could be held in an education hub will be considered
A ‘Language Matters in ME/CFS’ guide will be co-produced

Living with ME/CFS

Key areas to address from the draft plan are restated:

quality of life
support for children and young people
provision of health services
provision of adult social care
welfare
employment support

Key actions:

NHS England will co-design resources for systems to improve services, including the development of the template service specification for mild and moderate ME/CFS
NICE has published a Clinical Knowledge Summary topic on ME/CFS
The 10 Year Health Plan set out 3 shifts in service provision: hospital to community; analogue to digital; sickness to prevention.
A National Neighbourhood Health Implementation Programme (NNHIP) has been launched
Led by NHS England, neighbourhood multidisciplinary teams for Children and young people YP could help ME/CFS

Reception to the Plan amongst patient and research charities in England has been muted. It is seen as a positive first step but lacking in commitment, funding and ways to ensure immpplementation and accuracy of future actions.

Read the Delivery Plan, Announcement and letter from UK Government Minister and written statements in Parallel Parliament

Read about the Interim Delivery Plan

Reactions to the Plan – charities:

Action for ME: DHSC publishes the Final Delivery Plan on ME/CFS

MERUK:Delivery Plan for ME/CFS Published – Research Details

ME Association: The ME Association’s statement on the Government’s Delivery Plan on ME/CFS – The ME Association

Reactions to the Plan – media

BBC: ME/CFS Final Delivery Plan Video: Sarah Boothby and Dr Binita Kane.

BBC radio Scotland: Delivery Plan & ME/CFS

Channel 4: ME Delivery Plan – will it make a difference? Video: Nick Benton tells his story of severe ME & hopes for a clear care pathway. Dr Binita Kane is looking for better education & Sir Sajid David expresses disappointment the plan doesn’t go further.

ITV: Government pledges to ‘transform care’ for people with ME