For ME Awareness Week 2021 we will be discussing health and social care and the recent experiences of people with ME/CFS. We need to raise awareness of what is happening now and try to discern how the new NICE clinical guideline might help to change current practices for the better or build on existing good practice.
While we wait for the new guideline to be published (18 August 2021), we have time to consider what we want to change and how we might work with the NHS to bring about improvements in primary and secondary care for everyone with, or who has suspected, ME/CFS.
Help Raise Awareness
We have produced an MEAW21 Media Toolkit that contains posters and graphics you are free to use during ME Awareness Week and beyond. We’ll also update it with all the blogs and other information we will be sharing from Monday 10 – Sunday 16 May.
New Website Poll
Consider the last time you had any contact with the NHS about ME/CFS. How would you rate this experience?
The NICE Clinical Guideline ME/CFS
For the last 14 years, ever since publication of the current NICE clinical guideline, the ME Association has had to adopt a far more negative position than we would have liked with regard to clinical recommendations and the way in which healthcare provision has been implemented across the UK.
The clinical guideline is important as it affects us all. It is primarily aimed at providing a framework of recommendations for health and social care in England, but it has also had an effect in the devolved nations.
Prior to the 2007 clinical guideline, and again in England, funding was made available that established a clinical network of ME/CFS specialist services and regional coordinating centres – similar to the network now established for Long Covid clinics and costing a similar amount of money.*
Such provision was not made available in Wales, Scotland, or Northern Ireland and patient referral options have been limited as a result.
ME/CFS Specialist Services are not now available in every county of England, as the network has been in decline in recent years, meaning that not everyone is referred appropriately, but provision is still better than elsewhere.
GPs and/or paediatricians remain the primary points of contact with respect to ME/CFS, but the current guideline has meant that for a lot of people the care received has been inadequate or even inappropriate especially with regard to management recommendations. Delays in diagnosis, misdiagnosis, and misunderstanding or lack of medical knowledge are also key concerns that need to be addressed.
In November 2020, NICE published a draft of the new ME/CFS clinical guideline which was accompanied by a press release and featured in many UK media publications. One of the most welcome changes effectively removed graded exercise therapy as a key recommendation – something we have campaigned for since 2007.
We won’t know for sure what the new guideline will look like until August, but if it at least reflects the draft, then it could mark a new beginning for the patient community and a more positive relationship with the NHS.
We have always tried to work with the NHS in the best interests of the patient community, but this hasn’t been easy with the current clinical guideline and the recommendations it contained.
There are certainly aspects of the draft guideline we feel could be improved upon. It is not perfect – as stakeholders we submitted 171 comments in 13 specific areas that we felt could be made better – but on the whole it is a significant improvement and far more reflective of the patient experience with a focus on safe and realistic management.
We hope to build on this publication and re-engage with primary and secondary care to ensure best practice is brought to the NHS and to social care for people with ME/CFS. People with this condition should have had a clinical guideline like the one now being considered.
Imagine how different things might have been with a guideline we could all support. We have spent 14 years fighting to change the current guideline, and we finally have a chance to work with the NHS and not against it.
The NHS and social care services are there to support people with ME/CFS. Nobody should experience disbelief or have their very real symptoms dismissed. Having to fight especially when we are unwell for the care we all have a right to expect is wrong and should not happen.
It is our hope that with the new clinical guideline, people with, or who are suspected of having ME/CFS, can also re-engage with the NHS and that awareness of the condition will mean more instances of best practice are felt by more people.
* Following the recommendations in the 2002 Chief Medical Officer’s Working Group Report on ME/CFS a central ‘ring-fenced’ budget of £8.5 million was announced in 2003. It had the specific aim of developing new secondary referral services for people with ME/CFS in England. The funding from the Department of Health was released in two phases in 2004/05 and 2005/06 and resulted in the establishment of 13 Clinical Network Co-ordinating Centres and some 50 Local Multidisciplinary Teams.
Please join the discussions about health and social care on MEA social media during ME Awareness Week.
If you’d prefer to send in your stories about recent health and social care or about the kind of changes you want to see, then email: Feedback@meassociation.org.uk
We can’t promise to reply to all of your emails, but we do promise to read and to use them to help influence future policy.
We hope to produce a report in the near future that highlights good and bad practice in health and social care together with your ideas about how health and social care should be improved for the benefit of everyone with ME/CFS.
Russell Fleming, Content Manager, ME Association