Minister for Public Health (): I am pleased to announce
to the House that today the Government has published its final
delivery plan for myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS).
This government has 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
coordinated, 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 (NIHR) Application
Development Award focussed 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 multi-disciplinary
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.
Whilst 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.