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.
We do tend to hear more bad experiences than we do good, which is perhaps not surprising given the current, inappropriate and outdated guideline, the continuing lack of medical knowledge, lack of research advancement, and no diagnostic test or effective treatment options. But there is no excuse for ignorance and a good standard of care and support should be offered to anyone with suspected symptoms or a diagnosis of ME/CFS.
In this blog, we have included a selection of comments that relate to bad healthcare experiences. We will be featuring other stories including more positive experiences as we move through ME Awareness week…
Bad Healthcare Experiences
1. “No good experiences with a GP at all unfortunately. I remember one GP saying, “ME is an emotional illness there is no reason why you cannot work.” Another recently said, “There is nothing wrong. It is all psychological.” The best reaction I've experienced is one of indifference.”
2. “Only one good GP in the 20+ years I have had ME/CFS and she left a long time ago. Since then, I only go the doctor’s for infections or something I can’t manage and for the most part I am left to manage on my own with the support of family and friends. It’s a terrible situation but even the ME/CFS clinic I attended was inadequate.”
3. “My old GP said that ME/CFS was controversial and refused to give me a sick note. He said work would be better for me. This was 2 weeks after I lost my job to Covid-19. What a way to kick a person when they’re down!”
4. “No real help from GPs since 1994, after glandular fever left me ill for over a year. Yearly bouts since then. Just getting over another episode of fatigue, joint pain, and other symptoms. I think I've just got used to it and do what I can when I can on my own without any support from GPs.”
5. “My GP took me off tramadol and replaced it with co-codamol when I was at my worst pain levels. There was no sign of dependency. Essentially I had one of the few effective medications taken away because a pop-up-box appeared on his screen and he didn’t consider me as an individual just as a target to hit.”
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. “The one thing that ticks me off more than anything is GP's clearly don't look at the records of the patient before they enter the room. They don’t take M.E symptoms into consideration. I have been humiliated twice by two different GP's. Quite frankly I don't involve them with my M.E any more. I just deal with it on my own.”
7. “Nobody has really helped. All they keep doing is suggesting I lose weight, try to sleep, or take painkillers. There’s no empathy or understanding of what I am going through. I wonder if it is even worth going to see them as they don’t listen.”
8. “Which doctors should I talk about? The GP who told me I should give up work, claim benefits and get used to a life on a sofa (I’m self-employed and have been lucky to be able to continue working from home)?
“Or the one that rolled his eyes and said it’s all in my mind and its depression and I need to get out more and do things (I'd previously been a very sporty active person) who then sighed heavily when I suggested that maybe any depression might be a result of having my life taken away?
“Or the one who commented, when I said walking my dog was about the most I could do on good days, suggested I rehomed my dog?
“Or the one that said if I didn’t want to take the prescribed drugs for related pain because they made me incapable of functioning coherently enough to work, that I clearly didn’t want help ( I’d simply asked if there was a more holistic approach to the pain management)?”
9. “I have seen many GPs since I first became ill (it all started in 1993). One or two have had a little understanding of ME/CFS but the rest have been dreadful! Gaslighting has been common (especially once I moved north of the border), as ME/CFS just provokes a lot of eye rolling, and the instant reply that it’s stress and/or anxiety and/or depression (and worse still laziness) without them asking about my history.
“I wonder where most of us would be if we had been treated with respect and dignity in the first place? If we had been believed and told to rest a little (or a lot) when we first developed these crazy symptoms? it really doesn't take much effort on their part but could have made all the difference to me.”
10. “If I am getting unrelated treatment and need to mention ME/CFS as an existing condition, I always minimise its relevance because it avoids potentially negative reactions.”
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. “Last time I mentioned M.E. to a GP, I was enquiring about pain relief. She said I was too overweight for pain medications and asked what exercise I did. I told her I swim a few times a week when possible and I try to walk too but it's difficult with M.E. She dismissed it with a wave of her hand and told me I need to exercise more, cook healthier meals, and lose weight. She didn’t understand M.E. at all!”
12. “My experiences of the healthcare system has been poor for anything to do with ME/CFS. I’ve had the condition for over 10 years. It was mostly mild or non-existent since 2013 but it got worse again in 2019.”
13. “My GP sent me to A&E late last year as, during a phone appointment, he couldn't be sure that I wasn't having a heart attack. I finally saw a youngish doctor who asked about my health. I told her that I had ME and she replied, ‘M ..?.. what's that?'”
14. ”After a house move I changed surgeries a few years ago. At an appointment with one of the GPs, she told me that if I went for a gentle 10 minute walk every morning I would soon be better. The practice also refused to put me in Group 6 for the Covid priority vaccination. I'll be changing GP as soon as my vaccinations are complete.”
15. “I work at a doctors surgery part time (can only work part time with my ME and even that’s a struggle at times). My GP doesn’t believe ME/CFS is a chronic neurological condition, despite me showing him the information produced by the ME Association.”The above are selected extracts from submitted stories. We will be including complete stories in a report on health & social care later in 2021.
Russell Fleming, Content Manager, ME Association