It’s ME Awareness Week 2021 (#MEAW21) and we’re talking about health and social care for people with ME/CFS (#NHS4MECFS).
With the August publication of a new NICE clinical guideline and the possibility that it will provide better support for people with the condition, we asked for feedback about health and social care so we might all consider how things are now and what can be done to bring about positive change.
While it is true that we don’t hear as many good stories as we do bad ones, we know that good practice does exist. It would be to everyone’s’ benefit if – with the backing of a new clinical guideline – positive encounters with the NHS and social care become the norm and not the exception for everyone with ME/CFS.
In this blog, we have included a selection of comments that relate to relatively good healthcare experiences – although as you will see from the coverage this week, these are often isolated instances and in general are not good enough…
Relatively Good Healthcare Experiences
1. “A locum GP told me that he hoped with the rise of Long Covid it would also raise awareness among his colleagues about the very real ME/CFS, and that there would be more research. He was a star, and for the first time in a very long time, I felt I was listened to.”
2. “My GP said “Post Covid Syndrome” was ME/CFS and that the virus that caused my condition 11 years ago was most probably a similar virus to this one. Hooray! It was so good to hear that acknowledged!”
3. “I was diagnosed by the ME/CFS specialist service at a hospital (I was under them but have since been discharged because I'm too ill to attend!). I haven’t got a specialist to see or seek advice from now, but thankfully my GP is knowledgeable. He can't help further but at least he understands which is half the battle I think.”
4. “I have one great GP who helps with referrals with the PoTS and EDS side of things and is supportive. However, there’s another GP in the same practice who most definitely thinks ME/CFS is psychological and that antidepressants will fix it but they just make things worse. I’m glad I have one great GP.”
5. “I've been so lucky with my GP. There's nothing she won't try and she’s helped me come to terms with the reality of ME/CFS and that there's no end cure. Sadly, I know this isn't everyone's experience of primary care in the NHS.”
We want to publish a report of the recent health and social care experiences from people with ME/CFS.
- we are looking for good and bad experiences as they relate to primary and secondary healthcare (GPs, diagnosis, referrals, ME/CFS specialist services, management, etc.), and,
- experiences of social care provision (accessibility, local authorities, care need assessments, paid carers etc.).
- We also want to hear from people who have not been in touch with health or social care because previous experiences have made them decide to opt-out.
- And, we want to learn about the kind of changes you think need to be made that will improve the way in which people with ME/CFS are treated by the NHS and social care services.
Please join this week’s discussions on MEA social media, or you can write to us via email: Feedback@meassociation.org.uk Try and limit your emails to 200 words per story if at all possible. We can’t reply to every email we receive, but we do promise to read them all.
6. “I had to see a consultant at hospital for another health issue and I mentioned I had M.E. He said, “Oh that's that thing they diagnose you with when they don't know what's actually wrong with you”. I have had to become thick-skinned to this kind of response, but it still hurts when I hear such ignorant views from professionals who should know better by now.
“And yet, on another occasion, I had to see an Audiologist about my Tinnitus and Meniere’s Disease. When I said I had M.E. she was so sympathetic and kind (she has a friend who has it too) that I actually broke down and cried for the first time ever in front of a doctor. No doctor had actually listened to me or showed sympathy before – it was unexpected but very welcome and I was taken off guard.”
7. “I’ve moved around a bit since diagnosis. Two offhand GPs unable to use the office technology but helpful in a limited way. Then on to one good, and now one great GP, both at the same practice. Both happy to take me seriously and explore referrals, but there’s only so much they can do.”
8. “The GP I had when I was first diagnosed was brilliant but unfortunately left the practice for pastures new. I saw another GP in the same practice and, I swear, when I mentioned I had ME/CFS, she rolled her eyes and didn’t even try to listen to me. I was so upset. I spoke to the practice manager who suggested another GP and she’s excellent. Really engaged and understanding.”
9. “I've been very fortunate to have an amazingly sympathetic, compassionate and understanding GP who also added me to the Covid vaccine priority list without my asking to. He has always listened to me; taken onboard everything I've explained and always sent me for tests when a new symptom shows itself to make sure it's nothing else. I trust him to be there to help me and not dismiss me in any way.”
10. “My previous GP (and the one who first diagnosed me) was great – really knowledgeable and supportive. He had previously worked as a specialist in an ME/CFS clinic and his wife also had ME/CFS. I took that level of understanding for granted and thought all doctors must be the same.
“It came as a shock when we moved house and I changed surgeries as my new GP has been very negative towards my M.E. He told me most of my symptoms were down to stress and anxiety. He said I need to exercise more and spend more time outside in green spaces and download a meditation app.”
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?
11. “Which GP shall we discuss? The one who stood up saying they couldn’t help me whilst showing me to the door? The one who compared me to another patient who used to be a long-distance swimmer and now works full time? Or the GP who told me that I simply had to get my 13-year-old to empty the dishwasher and all would be fine? I have got a lovely GP now at least. She is young but full of empathy and she referred me to the specialist ME/CFS clinic.”
12. “After 5 years of no one taking me seriously despite me begging for help, I finally found an empathic nurse at my local surgery. She referred me to a physiotherapist who examined my spine and the osteoporosis and he wrote in his report, “Pain with ME is very complicated and will be adding a second level of pain on top of the pain caused by osteoporosis.” It was a small comment in the grand scheme of things, but it meant a lot to me.
“The nurse said, “I am glad the physio explained this as we still know very little about ME”. It is extraordinary that healthcare professionals still do not understand or believe in ME/CFS when there are so many suffering from it around the world.”
13. “GP is good although she is frustrated that there are no consultants in Wales. She's recently referred me without question to private consultant. My diagnosis was through a private ME/CFS specialist after years of struggling with the NHS. The CBT I had was one on one with her and I found it has helped me to cope and to accept the condition.”
14. “I am afraid most GP’s I have seen where not interested in ME/CFS except for one GP who treated me for 4 years. I was devastated when she left the surgery.”
15. “I was lucky, as my doctor was amazing and was able to diagnose me fairly quickly. It was in the days and at a surgery when you could actually make an appointment with a particular doctor and see the same one each time.The above are selected extracts from submitted stories. We will be including complete stories in a report on health & social care later in 2021.
“She came to know me fairly well. She knew I wasn't a shirker and after the first two two-week certificates, she signed me off for six weeks at a time until I was forced to take early retirement.
“She was understanding and sympathetic and lovely. Sadly, I had to leave her when I moved home 11 years ago. The doctors at my new surgery have shown complete indifference but judging by some of the feedback I have read, perhaps I should be grateful for that!
“We do have a good ME/CFS specialist service, which helps enormously. They and I wish there were something more that could be done to help people with this condition.”
Russell Fleming, Content Manager, ME Association