I am pleased to announce to the House that today the Government have published their final delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.
This Government have a clear commitment to ensure that people with long-term conditions like ME/CFS can live as independently as possible and see their overall quality of life enhanced. This plan will help us take an important step towards achieving this.
ME/CFS can be an incredibly disabling condition to live with, for as many as 390,000 people living in the UK. Its fluctuating symptoms can make it difficult for those affected to take part in everyday activities, enjoy a family or social life, access services they need and engage in work or education. Those with severe or very severe ME/CFS face particular challenges, finding even the most basic daily tasks or activities impossible.
The aim of the final delivery plan for ME/CFS is to improve the experiences of those affected, with a focus on boosting research, improving attitudes and education, and enhancing care and support. The plan sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
People living with ME/CFS often face stigma and misunderstanding, stemming from a lack of awareness and education about the condition. This lack of awareness and understanding can significantly impact the quality and availability of services and support for those affected.
Research too will be particularly important in helping to improve understanding of the condition, informing improved diagnosis, the development of new effective treatments and better support for patients.
In this respect, the plan sets out a long-term vision for a co-ordinated, well-funded, and inclusive research environment that reflects the complexity and severity of ME/CFS. As part of this, we will launch a new funding opportunity with a National Institute for Health and Care Research application development award focused on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS.
On education and awareness, the plan commits to increasing knowledge of ME/CFS among public sector professionals, as well as the wider public, by ensuring that information and learning resources are up to date, publicised and signposted.
Through a range of measures, the plan also commits to: improving the quality and accessibility of health services and adult social care; appropriate and timely support for children and young people in education; and helping people with ME/CFS to find and maintain employment.
While many actions in the plan are specific to ME/CFS, others relate to wider initiatives that will benefit people with long-term conditions, including those with ME/CFS. The recently published 10-year health plan set out the three big shifts our NHS needs to be fit for the future: from hospital to community; from analogue to digital; and from sickness to prevention. Services will be moved closer to, and into, people’s homes, providing faster diagnosis and faster access to treatment for patients with long-term conditions like ME/CFS. By 2028-29, neighbourhood health teams will be organised around the needs of their patients. Joined-up working across hospitals and into community settings will be created, with multidisciplinary teams, which can provide wrap around support services.
I would like to thank the many people with ME/CFS, carers, health and care professionals, researchers and research funders, charities and patient groups, and other interested organisations and individuals who contributed to the public consultation on the interim delivery plan. Their insights into the realities of living with the condition will help ensure that the agreed actions will meet real needs and help address the health and care inequalities people living with ME/CFS can experience.
I would also like to thank members of the ME/CFS task and finish group, who so generously gave their time to contribute to the development of the plan, and for their continued support in agreeing further actions where these will be required. We have listened very carefully to group members and recognise that further work will be needed, and we will continue to build on the foundations of these actions well beyond the publication of this plan.
While the final delivery plan covers England, the devolved Governments have considered the policy implications arising from the consultation on the interim delivery plan and discussions within the task and finish group for their own nations.
A copy of the final delivery plan will be placed in the Libraries of both Houses.
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