Russell Fleming, Content Manager, ME Association
The New NICE Clinical Guideline for ME/CFS
Last November we had our first look at the new NICE clinical guideline for ME/CFS. It will provide an important framework for health and social care and we believe it to be a long-awaited improvement on the current guideline.
The ME Association as stakeholders in the review process formally responded to the draft with over 170 observations and suggested amendments.
The next stage of the process is for the guideline committee to review all the responses from stakeholders and then make a final recommendation to NICE.
The full guideline should be published at the end of April – although the committee do have a lot of comments to consider and the process might be delayed.
We want to use the guideline to raise awareness of best practice during ME Awareness Week in May and beyond.
While the guideline might represent at least in part how health and social care should be for people with ME/CFS and is likely to contain examples of desired best practice, we know that your experiences of the NHS and social care can and do vary.
We could be entering a period where we have a clinical guideline that we can all support to a greater extent than we have done previously, and we deserve to have a guideline that we can believe in.
But we’d like to explain to others what your experiences of health and social care have been in the recent past in order to demonstrate just how much needs to change at the ground level.
Health and Social Care Awareness Campaign
ME Awareness Week gives us an opportunity to highlight the desired position while reminding people of the current situation.
We receive regular feedback about health and social care provision and many of the reports describe unsatisfactory and distressing experiences, but this is not true of all of them.
There are good GPs, good specialists, good paid carers, and examples of good practice already embedded in the NHS and social care services.
What we think the new NICE guideline will do is reinforce best practice and that this will lead to the bad experiences becoming less and less as time goes on.
We hope the new clinical guideline can be used to ensure more health and social care professionals approach ME/CFS with greater understanding. That they can turn to the guideline and help people with more confidence and compassion.
And, as people with ME/CFS, we should also be able to use the guideline to help build mutually beneficial relationships with the professionals who are charged with our care.
How you can help
We all have stories to tell about the good and bad experiences we have encountered with the NHS and social care as people with ME/CFS.
While we hope that the new clinical guideline will help to reverse bad practice and increase understanding, we’d like to raise awareness of recent experiences and demonstrate what life is really like for people with the condition when they engage with the NHS and social care services.
We’d like you to focus on a single good or bad experience that you have had in the last 2 years with the NHS and/or social care services.
- You might want to explain how your GP, specialist or social care provider has provided good support with regard to understanding ME/CFS and your individual needs.
- You might have experienced distressful and inappropriate advice and a lack of support or care from a GP, specialist or social care provider.
- You might like to focus on accessibility, perhaps you do not have access to a local ME/CFS specialist service or found that appointments required too much travel, or were too long or even inappropriate.
- You might also like to explain why you have not engaged with the NHS or applied for social care during this time (we know that some of you choose not to do so because of the lack of understanding about ME/CFS and earlier bad experiences).
You can submit more than one example, but each should be no more than 300 words. We will not publish your full identity when using your story, and similarly we will not identify the healthcare professional you might mention.
Please send your stories to: Feedback@meassociation.org.uk and title your email: ME Awareness Week 2021.
If you could include one or more personal photographs it would help us promote your story, although we can use library images if necessary.
It would also be helpful if you could tell us:
- where you live in the country,
- your age or the age of the person you care for,
- whether you would be willing to speak with the media, and,
- your phone number in case we are able to place your story in the press and need to contact you beforehand.
The deadline for stories is Monday 29 March at 5.00pm
We will aim to feature all the stories we receive on the website blog and social media during ME Awareness Week and in ME Essential – the magazine for members of the ME Association.
They will in turn be used to reach health and social care professionals who form part of our quarterly mailing.
We will also be doing our best to get stories in the press where we have your permission to do so and we’ll be producing a series of online posters about the new NICE guideline and your recent experiences of health and social care during the week beginning Monday 10 May 2021.
Thank you for your continued support!
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, campaign, and invest in biomedical research, then please donate today.
Just click the image opposite or click here for one-off donations or to establish a regular payment.
You can even establish your own fundraising event on JustGiving.
ME Association Registered Charity Number 801279