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 people 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 these are often isolated instances and in general are not good enough…
Relatively Good Healthcare Experiences (2)
1. “As a partner and carer for someone with ME, I have carefully read the new draft NICE Guideline on ME/CFS. I keep (very diplomatically!) mentioning the new recommendations in conversations with medical professionals. They've bristled a bit at times, but overall, I think it's helping to generate a better relationship. So, many thanks to everyone at the ME Association for your tireless work on developing the new document and making it so understandable for lay readers as well as doctors.”
2. “When I first became ill 18 years ago my GP was great, completely believed me. A couple of years later when he retired my next GP was also amazing, very understanding, and honest. He told me not many people would help me and that I was doing a better job managing it all on my own. He referred me wherever I asked even though he didn’t believe they would help. Turns out he was right the whole time.
“Unfortunately, he then retired too. Since then, I’ve pretty much seen every GP that has worked at the practice, most of them don’t believe in ME. The GP I see now is nice enough, she was upfront the first time I saw her and admitted that she didn’t know much about ME only what she’d been told about GET and CBT. I explained to her they were not the right treatments and she’s never brought them up again.”3. “I had a GP who said she really wanted to help me even though she might not know exactly how to do so. She was happy to hear anything I could suggest as I obviously know my body best and that I had done extensive research. I really appreciated that she genuinely wanted to help.”
4. “I have an excellent GP, very helpful and willing to listen to my needs. Another part-time GP actually told me I have a neurological illness. After I put the phone down, I wept. I couldn’t believe what I was hearing.
“It was in complete contrast the way I had been treated previously. I was variously *told*, for example, I was, ‘trying to get off work’, ‘looking things up on the internet’, and asked derogatively, ‘what would you know about swollen lymph glands?’
“A specialist who is meant to be on my side, said I suffered from Hysteria and it was all down to having PTSD (an expert PTSD doctor rubbished this notion and was fully supportive of ME as a neurological illness).
“Sadly, at the time, the negative attitudes hurt and took a toll on my health. They damaged the trust I had with the NHS at a time when I needed it.”5. “Bad healthcare was when my GP did not listen to me or even try to understand the symptoms I was dealing with or the life changing effects they were having. His comments were detrimental. It’s been a very hard journey and I felt largely unsupported and worthless.
“Good healthcare came only when a nurse at the surgery noticed a dramatic change in my functional ability. She identified what was wrong with me and finally I began to receive better treatment.
“But it’s all been trial and era and learning to know what was happening with my body. I did most of the work and the research, and, while it often felt like there was no light at the end of the tunnel, I’m finally seeing progress.”
Feedback
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 a wonderful doctor who did all she could after we moved to her area 5 years ago. She made a diagnosis of ME which came 3 years ago after 20 years of being ignored and sent to Mental Health which I also had issues with but partly because I felt so unwell and no one would listen to me.”
7. “I’d never even met my GP. I kept getting directed to different doctors and being misdiagnosed for 3 years with viral Infections/needing voice rest/chronic tonsillitis etc. I finally had enough as I kept getting worse and was still getting a lot of infections and needed to sleep all the time and asked for an appointment with a senior GP.
“This was a good decision. I finally had loads of tests done and an ME/CFS specialist service referral. I then received a diagnosis of ME/CFS. But I’ve been on the waiting list for months and haven’t heard from the ME/CFS specialist service in all that time, even though I keep trying to chase them up.”8. “My daughter’s first GP told her that all teenagers suffered fatigue and depression and did nothing. My daughter left in tears and refused to go back.
“Second GP tested for everything and referred for coeliac diagnosis. She then had a wonderful dietician and gastroenterologist who helped her with her coeliac disease and as soon as it was clear she wasn’t recovering on a gluten free diet they advocated strongly to the GP for her to be investigated for ME.
“From there on in the GP has been fully supportive giving her all the time she needs in consultations, referring quickly for rheumatologist for fibromyalgia assessment, answering all symptom questions and staying in touch when she is in serious relapse.
“We have more faith in our GP than we do in the ME/CFS specialist service she was referred to.”9. “From day 1 of coming to my GP with symptoms that had been increasing over months (thought I was ‘just' stressed and overworked) he diagnosed my M.E. and told me to go home to bed, to pace myself (he told me to research it to get a better idea as it's not the same as pacing in sport), no running, no cycling, stop activities.
“He actually had a clue! I didn't. I had to research the condition because it was so alien to my life to be bedridden, inactive, and not working. It didn't make sense. Still doesn't.
“He admitted there wasn't any treatment he could give me save symptom relief via pills. His diagnosis was later confirmed by the ME clinic. He has been a great support these past three years. Referrals where needed.
“If there was a real, available treatment plan, I know he would have offered it. The ME/CFS specialist service discharged me as I was too poorly to deal with their weekly sessions on site. The irony, of course.”10. “I have a lovely GP who really listens to me. He freely admits there is little medical intervention he can offer (I’ve been through the ME/CFS specialist service already and have learnt pacing etc.) but is always willing to listen and sympathise and definitely believes in the illness. I worry about what will happen once he retires as he must be coming up to retirement age and his monthly telephone appointments are a real lifeline for me.”
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. ”The best advice I received from an advanced nurse practitioner, ‘You probably know this already, but make sure you rest.’ I was hoping for more than I already knew but compared to other experiences I have had; it wasn’t so bad!”
12. “After a failed tribunal appeal, I decided to take up an opportunity via my GP to get support from a local NHS scheme to help people find volunteering opportunities within the community.
“I got a good support worker who helped me to access suitable things to try, one of which I particularly enjoyed – a couple of hours’ light cleaning duties at an animal shelter, once weekly.
“The only cloud was that after a short time I was finding that particular role too physically demanding. When I began really struggling with the walk to the bus stop after my shift, I knew then that I shouldn’t continue.
“Later in the summer I decided to leave the scheme. I was already at full stretch with activities by then and knew that I couldn’t add to them.
“Without understanding the dreaded ‘PEM’ it must be impossible to know how someone could get physically weaker from doing a little bit more of really easy activities. I can hardly believe it myself but it happens.
“I have mixed feelings about my experience. My tailored volunteering role did suit me, I enjoyed it greatly, and maybe I can go back some day. At the same time, the outcome came as no surprise to me given my current state of health.”13. “I was formally diagnosed with ME/CFS by my GP in December 2020, after extensive blood tests ruled out other possibilities. Several years ago, I had been diagnosed with Fibromyalgia by a Rheumatoid specialist at my local hospital. I also have other diagnoses.
“My GP said that ME/CFS and Fibromyalgia symptoms are similar and to picture them as 3 overlapping circles – pain, exhaustion and I think the 3rd one was brain fog… the irony that I'm not certain of the 3rd! Her explanation was that you move in and out of the circles as the conditions fluctuate. Sometimes you have more pain, sometimes more fatigue etc.
“She said right now I'm bang in the middle, hit with it all. She entered the diagnosis on my medical record and advised me that (sadly) they can't fix it but could refer me to the pain clinic for advice on management. I told her that I simply did not possess the energy to leave my house and that I often couldn't leave my bed.
“She suggested I join an online support group, that they were good and would assist me with management techniques. She added that it's about pacing yourself, not pushing yourself. I've contacted her a couple of times since. I was prescribed muscle relaxants and given sympathy, but that was all.
“I'm used to coping with illness and pain. But nothing prepared me for this ton weight of exhaustion, weighing down my body and mind. I can do so very little now, despite pacing. The little I can do today; I can't do for another 3 days. Life is no longer life as I knew it. When does it get better? Thank heavens for the ME Association.”14. “I am 81 and have had ME since 1996. I am severely affected and have been unable to use a wheelchair for 23 years. I haven’t consulted GPs about ME for years as there’s nothing new and my ME has been about the same. However, they do know I need a stretcher ambulance and will do phone consultations and home visits if I need them.
“A new GP visited to check a suspicious mole recently, and I took opportunity to tell him that the new draft NICE ME/CFS Guideline had just banned Graded Exercise as it has put so many of us in bed for years, and about our struggle to get it banned and the ongoing disbelief and even family rifts it caused by the stigma.
“He had not been aware of this but listened, believed me, and took copies of the comic strip showing effect of PEM, and ME awareness leaflets (in larger print) for the surgery.”15. “I had great faith in my GP as she also had ME, appreciated my concerns and was very understanding and helpful. We worked through any problems that arose and agreed that there was little point in referring me to any consultants as the help just wasn’t there and I had become good at helping myself.
“Unfortunately, she then retired and it later transpired that a lot of the information, discussions, and concerns about ME had not been recorded in my medial notes. On top of this, because I wasn’t under a consultant, the notes were inadequate as evidence.
“Therefore, my health issues were not recorded as they should have been. I felt very let down. The help we deserve just isn’t there and everything is an unnecessary battle.”16. “I’m seeing a GP at the moment and she's remarkable. She helps me a great deal and I’m in touch with her every month by phone – the Covid situation has helped in this regard at least.
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 tries to keep me positive and forward thinking, but most days I’m not even in the mood to talk. I know it's important that I keep in touch, but it’s hard to talk with her when I'm either suffering with a major headache or I’m just so lethargic and snappy. Nobody is to blame. My concentration is so low and it’s now too hard to think clearly, so I’m cutting this short…”
Russell Fleming, Content Manager, ME Association