Barriers impacting access to NHS care for people with ME and Long Covid - we want to hear your experiences

1 hour ago, Anonymous said:

Thank you for asking these important questions. 

I've lived with M.E for 38 years, the illness hs progressed from moderate to severe/very severe over that time. Throughout the years that I've had M.E my trust in Doctors & HCPs has been eroded to such an extent that I completely avoid all but those who are widely known & recognised M.E experts.  The stigma surrounding M.E leads to an immediate perception that any patient presenting with this condition is not suffering from a serious biomedical condition & cannot be trusted, the repeated impact which that has is so devastating that a patient with M.E's trust is completely eroded.    A large part of the responsibility for this lays with the BPS proponents, Wessely, Sharpe, White, Garner, Chalder etc, who have done so much harm to pwME over many years.  The very public lack of support which the Royal Colleges have shown for the 2021 NICE guidelines continues to have an extremely negative impact on how M.E patients are perceived & treated within the NHS.     Healthcare settings are not designed to protect pwME from an increase in symptoms, reasonable adjustments are not made to accommodate us, PEM - PESE are misunderstood at best.   Healthcare for M.E patients needs an immediate & complete overhaul, M.E expert Drs must be allowed to lead on this, Dr William Weir, Dr Binita Kane, Dr Nigel Speight, Dr Claire Taylor would be the best placed. 

 

1 hour ago, Anonymous said:

Thank you for asking these important questions. 

I've lived with M.E for 38 years, the illness hs progressed from moderate to severe/very severe over that time. Throughout the years that I've had M.E my trust in Doctors & HCPs has been eroded to such an extent that I completely avoid all but those who are widely known & recognised M.E experts.  The stigma surrounding M.E leads to an immediate perception that any patient presenting with this condition is not suffering from a serious biomedical condition & cannot be trusted, the repeated impact which that has is so devastating that a patient with M.E's trust is completely eroded.    A large part of the responsibility for this lays with the BPS proponents, Wessely, Sharpe, White, Garner, Chalder etc, who have done so much harm to pwME over many years.  The very public lack of support which the Royal Colleges have shown for the 2021 NICE guidelines continues to have an extremely negative impact on how M.E patients are perceived & treated within the NHS.     Healthcare settings are not designed to protect pwME from an increase in symptoms, reasonable adjustments are not made to accommodate us, PEM - PESE are misunderstood at best.   Healthcare for M.E patients needs an immediate & complete overhaul, M.E expert Drs must be allowed to lead on this, Dr William Weir, Dr Binita Kane, Dr Nigel Speight, Dr Claire Taylor would be the best placed. 

We need Wessley out otherwise nothing will change. He has too much power in the NHS & government. 

I had a suspected TIA but am bedbound the stroke clinic was stretcher inaccessible so I couldn't get properly assessed. My GP and I have just treated with aspirin. I asked about hospital admittance but apparently thaf wasn't an option either because the event had ended. Fun times.

 

Also hospitals are a complete and utter nightmare for very severe ME. I have refused to go when I probably should because they are torturous

 

There are so many more instances. If you are bedbound there are almost no provisions for specialist care

Frontline worker.

Contracted C19 in the workplace

Waited 18months for spirometry

Diagnosed Post covid syndrome

Attended LC clinic - only self management techinques / pacing 8 weeks online only.

3 years on lost my Career / Health 

Fed up being told i am decondition

When i know i was exposed to a level 3 biohazard airborne virus.

Manadatory training for all HR & Health care professionals is required. 

Hepa airfilters in all public places.

Long covid is a chronic disease and must be classed as an occupational disease.

At present there is no cure, no treatment available. There must be more research, funding for a cure.

Moderate ME >10years (made worse by LC), PoTS, MCAS. Biggest barrier to accessing healthcare is the healthcare itself. It's just not fit for purpose when you have ME. Specifically, the lack of belief in ME, and knowledge of ME, from 99% of health care workers that have been involved in my care.

I lost 25kg in less than 6 months, involuntary, due to severe IBS (that turned out the be MCAS) - dietitian helped me stabilise, put me on a low fodmap diet, and told me to raise concerns with my GP.
His reaction when I shared my concerns? He heartily laughed and said "That's great, keep going!"
Sure I was overweight but ME and weightloss and food sensitivities is very scary territory and he wasn't taking anything I said seriously.
This same guy once asked me to come in that day for some tests, during a telephone consultation, and when I asked if that could be tomorrow morning instead of late that afternoon, for reasons of energy budget, he sounded offended and suggested maybe I should call him back when I was well enough!? Isn't that HIS job? And how can I ever get well enough when that is the GP's attitude and there's no cure, no treatment, and only a fraction of the biomedical research needed.

Or the physio who was amazingly caring, listened very well, accomodated all my needs including turning off the lights in her office - but then went on to suggest I do a 'graded activity therapy'. Of course she had no clue about PEM. Thankfully she was open to learning about it and even did dr Muirheads CPD course but then concluded that there was nothing she could do for me.
If I had been less well informed and followed her advice, that would have probably made me permanently worse. Instead I got the 'best' outcome of this situation which was No Healthcare, accompanied by a nice long PEM crash from the effort of attending.

Or when I emailed the surgery to explain how I struggled accessing care, how none of the GP there knew anything about my illness (by their own admission!), and how the royal college of physicians had a great training session upcoming on ME, delivered by one of the worldwide experts in this illness, and could they please try to get one of their GP's to attend this.
I didn't even get the courtesy of a reply.

I have genuinely had better medical advice, with bigger impact on my QoL, from social media than from the NHS.

Besides that, there's also the huge issue of infection risks that our NHS buildings all bring. My ME was stable for years, and then I caught Covid once and for the next 3 years just gradually started sliding towards severe. The NHS had nothing for me, but I thankfully managed to stabilise myself (yes, through advice from social media!). It is obvious to me that any infection could make me deteriorate again, and since the NHS have decided to completely ignore aerosol transmission and everybody walks around unmasked, with far too few air changes per hour, and no HEPA filters, any NHS building is a HUGE risk to my health.

So between those three factors, every time I have a new health issue, I have to evaluate the ROI of calling my GP. Would they take it seriously? Is it worth all the effort? Or am I getting disbelieved and fobbed off again with nothing but a PEM crash to show for it.

Luckily I've never had to endure inpatient care with ME - that's my worst case scenario. Pretty sure any inpatient stay on an NHS ward would have me in rolling PEM for months.
 

It took well over 10 years for a doctor to take me seriously. This was after I had Glandular Fever and Pneumonia, and, as it turned out, Lyme Disease (that took 20 years to find out). I had to go in with my own diagnosis, still got gaslit, until a different doctor agreed with me but only because he had it himself. 

He frankly told me the NHS would do nothing at all for me. He was right. Even he didn't properly explain what ME is, the difference in severity, PEM, none of it. 

Then, after being diagnosed and having to move in with my father for daily care, the local GP dismissed me anytime I had a symptom that was bad enough for me to need to speak to them. Couldn't have been less sympathetic. Everything was explained with "sorry, you have ME". Didn't care about weird spasms near my brain and spinal cord, didn't care about my very poor circulation. I now have a GP who is sympathetic but who has been honest that he doesn't know anything about ME. 

The NHS needs to do everything but what it does now for it to be an improvement. It had to relearn what it knows about disease, because ME and LC aren't normal. It needs to listen to the patients who have been advocating for themselves and each other for decades and realise that we aren't asking for much. I don't know any other disease or condition where the patients are treated with such cruelty. 

We need home visits and care, similar to Macmillan nurses. Going to a surgery takes precious spoons and most if not all of us don't trust doctors for all the reasons I have said. 

There is no care for people with severe ME. 
 

l can’t cope with a wait in A and E so don’t go. I need to see a specialist about reflux. The hospital is half an hour drive away and there are never any disabled parking spaces. So l don’t go.

 

l tried to go to an emergency eye clinic once. They made no allowances. In fact they said ‘if she can get here she can wait in the waiting room’ we complained and it was upheld.

 

l dread any sort of hospital appointment. I try not to go even though l need it.

 

I read somewhere something like this. ‘ME is the only illness where the more severe you get the less medical attention you get’

There is no support or help for people with me. Nothing at all. We just don’t get care despite paying NI for most of my adult life.

As someone with moderate ME and also the carer of my wife, who has severe ME, one of the worst aspects of the NHS for me is the effort that goes into any kind of communication with them. It varies from service to service, but typically to get through to, e.g., change/cancel/discuss an appointment, there's an automated multiple choice labyrinth, followed by 10-20 minutes of jarring hold music, and then potentially several layers of "Oh, you actually need to speak to this person, let me forward you on." Sometimes it just rings through and hangs up with no answer, and you have to call several times per day for several days to get to speak to someone. It's exhausting. And email often isn't much better.

Another major issue, which others here have touched on, is the lack of flexibility in appointment timing or understanding that a patient might need to delay their care to ensure sufficient space to recover between appointments. Waiting-time targets have, ironically, led to my wife being seen far later than she would have otherwise, as hospitals have automatically discharged her when she's moved appointments too far from her original referral. When this happens, the GP has to send another referral and she goes to the back of the queue again. Hospital policy to see patients within a certain time frame has been directly cited to me as the reason for this on multiple occasions. Every time I have to delay an appointment, I have to fight to keep my wife in the system and am guilt-tripped by administrative staff.

In terms of the care itself, a lot of it feels like unnecessary box ticking: you can't try one thing until you've tried all these other, much less suitable things. Or, you need to do this test, which involves exercise, otherwise we won't be able to diagnose you (e.g., a stress echo in a cardiology clinic to diagnose POTS). Both my and my wife's health have worsened due to the number of superfluous medical appointments we've had to attend in order to get the treatment we need. In my experience, many of the consultants are actually quite understanding, but in order to even see them you have to deal with nurses and technicians who are anything but.

At the GP level, things are now somewhat better than we've experienced in the past, as they are able to do home visits and arrange for the district nurse to attend for blood tests. However, they are ill equipped to deal with anything particularly complex, and they do not have an appreciation for the cost of simply travelling to access medical treatment. When my wife had heart symptoms after her most recent vaccine dose, they refused to see her or send her for outpatient testing and instead insisted she travel to A & E, despite her having had similar symptoms in the past. We opted to risk those symptoms going untreated rather than incur the inevitable damage to her health that a trip to emergency services would have resulted in.

Where to start? It starts with proper knowledge of any HCP dealing with a person with ME, right from the initial contact with the receptionist/admin. If they don’t understand our limitations, the rest of the process can be impossible.

GPs:

if we can attend we are already vulnerable so offering to mask up would be good. 

If we can attend, we should be offered a quiet dimly lit area to wait in

If we can attend it would be nice to have our effort acknowledged rather than us having to explain every single time. 

we need longer appointment times because we never have just one issue to discuss

Home visits for non-ME issues like blood draws, smear tests etc shouldn’t be a battle.

Hospital appointments for things other than ME:

we shouldn’t have to waste our precious limited energy explaining time and time again our condition and needs. We are the sickest of people but we not only have to say we have ME but then explain what that means. For a day patient procedure I had to explain ME and what it meant to 2 nurses at the pre-op appointment, 2 nurses and a HCA at the hospital on admittance and then even to the surgeon and anaesthetist. I could barely speak by the time the procedure took place. 

Fatigue Clinics:

not accessible to any other than mild or top end of moderate. This needs sorting. 
 

 

 

I have balance issues and thought I had sciatica (now believed to be periformis syndrome) triggered by long covid.  Because I couldn't get to the hospital without help and they don't offer an ambulance service for that they way they do with some other departments, I had to wait months longer to have a community physio come to my home.  This means my issues were a lot worse by the time it happened and we're not 'nipped in the bud'.

Even with lots of help including ambulance staff and a wheelchair, any hospital visit leaves me laid up for days on end. Spasming episodes and crashes triggered by the journey there make it difficult to be fully engaged and communicative when talking to specialists or consultants.

I have had ME for 5 years. I have never been seen by an ME/CFS clinic because by the time someone recognised I might have this illness, I was already severe and housebound and they don't take housebound patients. 

In the early stages of my illness I was given incorrect advice to continue exercising, which played a large part in me becoming severe and house/bedbound.

I have not been able to get treatment for comorbidities on the NHS (POTS and MCAS). The cardiology clinic had no knowledge of POTS and the allergy clinic discharged me for being unable to travel 30 miles to them for skin prick testing. I had to seek private healthcare to get diagnosed and treated with these comorbidities.

My smear test is 4 years overdue (ie. Last one was 7 years ago) and I have not been able to access it because I am housebound and my GP surgery will not offer a home visit for it.

Likewise my eye and dental care is non-existent, I last saw a dentist over 6 years ago and have no clue how I will ever safely attend a dental appointment ever again, as even aside from the energy limitations that prevent me attending, there is no infection control for covid and a single infection can be devastating (a covid infection lowered my baseline and made me less able to do things for myself at home). Although there is an option for home eye tests, I have struggled to communicate with services that insist on doing everything by phone when I am unable to communicate on the phone and need to use email to safely manage my energy. Finding a good time for an eye test is very difficult too, often I am not well enough even for the exertion that would be required from a home eye test. I have additional concerns over needing the optician to not come if they knowingly have a virus, to wear a mask and be fragrance free (due to my severe MCAS)

It took years of advocating to access blood tests at home as my GP surgery repeatedly denied that I was housebound. I paid a private nurse to take my bloods instead. Whilst I now do receive home blood tests when needed, this is still hugely challenging because of my delayed sleep cycle and the fact the district nurses only do blood tests in the morning. I usually sleep from 7am to 3pm so a district nurse turning up between 8 and 11am to take blood is literally like being woken in the middle of the night. This makes it hard to get blood from me too, as I am usually dehydrated from being asleep. The disruption to my sleep then causes PEM lasting 3 or more days in which my symptoms are greatly increased and my level of activity greatly reduced.

I have not been seen in person by a doctor since my ME became severe over 4.5 years ago. I have never had a home visit from anyone other than a district nurse for a blood test. Although telephone appointments with my GP are accessible to me, these still come with a huge cost. Because I am unable to function enough to speak to a GP in the morning, I have to book late afternoon appointments. Inevitably the GP is then running late and the time spent waiting for their call, trying to stay alert and ready to speak, takes a huge toll on my body. I usually crash (experience PEM) for 3-7 days after such a call.

You have to have the energy to make the appointment with a doctor in the first place, whether it's for your ME or something else. Then you need the energy to get to the appointment and explain what's up. Then the energy to get home. Then the energy to do follow up, get prescriptions etc. If you have someone to help do this, ring up, drive you there etc. it's easier. If you don't, then it's almost impossible, especially if everything is going on dressing, cooking and so on and you barely leave the house. 

My daughter has experienced a deterioration in her ME/CFS condition since she contracted it 3 years ago. She has been bedbound for many weeks last year, and was sleeping a lot through November and December. The GP recommended a blood test but we can't arrange for someone to come and take blood because she forced herself to leave the house to see family at Christmas time (and suffered for it afterwards), so they don't think she is housebound. We know that having blood taken will make her feel unwell, so adding to that the exertion required to get dressed and leave the house means that it would be something that will cause PEM and potentially cause further deterioration, so we haven't done it yet.

She also had to be admitted to hospital following a bad colonoscopy experience (pain meds not effective and the bowel preparations beforehand made her feel very unwell). I had to stay with her to make sure she was allowed to rest as much as possible. The doctor who discharged her was really unsympathetic about her massive deterioration- it was a very traumatic experience for both of us.

Travel is a big one; I've been discharged from one service because a test required that I travel across town to a hospital each day for three days and one trip would put in bed for days afterwards.
Waiting when you get to the hospital can also be a big problem; if I get to an appointment on time but then have to wait for an hour or more in an upright position I'm then so out of it that I can't do the appointment. 
Lack of modification for treatments can make things worse; being thrown a standard set of exercises from a physio or psychologist can easily trigger PEM and then if you don't do them you run the risk of being discharged for non compliance.
M.E. can flare up at any moment without warning but if you need to cancel an appointment because you are in a sudden flare and can't give the requisite 24 hours notice then again you run the risk of being discharged for non-attendance. 
Most of the things on offer for M.E. and L.C. patients are basic information for people who are basically fine not people with severe underlying conditions.
 

Just having call surgery for this that and ableist systems causes me meltdowns / PEM

They no idea how is for folk who are mostly housebound / chronic ill 

We can’t afford such energy costs it’s destructive and makes illness worse 

Not getting easier 

My daughter needs a neck scan due to thyroid issues. She has severe m.e. and is not well enough to travel the 15mins to the hospital at the moment. GP has seen her at home (after some initial issues). Consultant has phoned, which we are grateful for. 

It took her 6 months (2 years ago) to return to her dreadful baseline after a 5 hour visit to a&e due to chest pain (had single room, lights off when not being treated and able to lie on the hard 'bed' for most of the time). The recovery was AWFUL. The chest pain was classed as viral as all tests came back OK. 

She is on waiting list for cardiology but again she is not able to travel into the hospital for tests and monitors to be fitted. She has had her place paused on the list. Most appts have been for 8.30-9am. She is unable to make those times. 

 

On 28/01/2025 at 12:24, Patient Safety Learning said:

For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid.

 If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences:

• Have there been times where you delayed or were unable to access the care you needed due to these or other challenges?
• Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare?
• What would make the biggest difference to you to make care more accessible?
• Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care?

  On 28/01/2025 at 12:24, Patient Safety Learning said:

  For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid.

   If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences:

  • Have there been times where you delayed or were unable to access the care you needed due to these or other challenges?
  • Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare?
  • What would make the biggest difference to you to make care more accessible?
  • Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care?

  Please share your experiences. You can post anonymously below or you can sign up to the hub and become a member which will allow you to post on other topics too.  Sign up is free and easy to do. 

  The more we need healthcare, the more inaccessible it becomes. Eg. I can't get up the steps of the mobile mammogram van, so instead of allowing someone to help me up the steps, they wanted me to make a 50 round trip to the nearest hospital and cope with the parking, noise, delays etc. I couldn't do that at all, the journey alone was beyond me. Now I'm bedbound and have no access to health screening or dentistry.

• I also have such an extreme dread to any meetings with healthcare professionals (due to years of denials, gaslighting and dismissal) that I won't have anything to do with them.

• Whats the point? They make it very plain that they don't believe me.

Please share your experiences. You can post anonymously below or you can sign up to the hub and become a member which will allow you to post on other topics too.  Sign up is free and easy to do. 

 

I have ME and fibromyalgia diagnoses. I had to change GP several times to get anyone to take me seriously and listen to me when I first approached with a wide range of symptoms and a hypothesis, having knowledge of the conditions due to a family member having it too. I experienced unnecessary suffering at the hands of GPs who were not interested in what I had to say, some who seemed to want to frame me as a depressed young perosn who just wanted an excuse to be signed off sick from work. I only got a GP to listen to me after a mental health charity's advocate helped me to make a complaint. It should not have come to this. That advocacy service has of course since being decommissioned so what would I do if this happened now, I don't know. 
The current culture does not value patients as experts in themselves or as potentially intelligent people. 
After many years I made it to a specialist ME + fibro service. I have had to contact PALS recently due to poor administrative processes giving patients additional unnecessary burden. I had to be the messenger between my Dr and his secretary, had to ask for specific times for appts so that we could do x and y test during the appt. I have to repeatedly call and email when clinics get cancelled and rescheduled. It is a waste of spoons. It is baffling that the Dr and his secretary don't have the channels to communicate between themselves and that I am brought into it all.
 

I had severe long covid 3 years ago, though I’m now mainly recovered.

6 weeks post-covid, bedbound but able to do a few things, my GP sent an ambulance to take me to hospital for tests.  I was left in a noisy corridor all day, made to sit in a wheelchair to go to the toilets, made to talk to the doctors. All tests were done one after the other, with minimal rest in between.

It would have helped to be given a quieter, less stimulating place to wait (though I know the NHS is struggling) and spacing the tests out over the day.  Understanding that communication to me should be only on things my husband couldn’t answer.

This, and the trip home exhausted me - I couldn’t eat anything for dinner even though I’d lost a lot of weight and was hungry.

2 days later I crashed and got worse again from the trip.  I had to lie in a darkened room and could only minimally communicate - I felt I was losing the ability to have the energy to eat.

A GP did a home visit and was very sympathetic, but unable to help themselves - they arranged for me to go back to hospital that evening, and see a neurologist the next day.

Unfortunately, we got taken to A&E as my husband didn’t know where the bed was allocated.  Their computer systems were down so we were admitted to A&E instead - I waited on a very noisy corridor and then in A&E itself all night, not sleeping, feeling dreadful.  The A&E consultant then said he’d discharge me as there was nothing they could do in A&E, despite my husband explaining that I should be in a ward bed.

We managed to stay there until the GP opened, after which it was sorted out - but I’d missed the neurologist appointment.  Another was found but entailed waiting until the afternoon, the last 2 hours on a reclining chair, not a bed.

The neurologist was no help, and then we had to pay for a private ambulance to take me home.  I slept 20+ hours a day for weeks after this, and was bedbound for a further year.

without these two horrendous visits, I firmly believe I would have been less severe and put my body through a lot less.  I don’t blame my family or my GP, but do feel there should be processes in place for the NHS to do this differently.

When living with severe ME for 5 years I had no healthcare. I couldn't visit GP or dentist. I was unable to attend smear tests, and my yearly monitoring by cardiologist and specialist ophthalmologist were non existent. I have been monitored all my life due to connective tissue disorder and my risk of aortic dissection, retinal detachment and glaucoma. Yet nothing was done to enable continued health monitoring.

My mental health declined in 2019. By this time I was moderatly impacted by ME and had been referred to Community Mental Health Team. They initially recommended 12 weeks of group anxiety managment. However, when I explained that it was unlikely I could attend 12 consecutive weeks of a 2 hour session, they denied me access to the group. I was told that if I didn't attend more than twice I'd be discharged. No adjustments were considered, I offered to do things at home or asked if I could link in with class online, this was denied despite me explaining the impact repeated, in-person attendance would have on my physical health.

A year later I was referred again by GP to get help with my mental health. By then I able to access 1:1 psychological therapy online but only because we were in pandemic lockdowns and NHS were FORCED to adjust there way of working.

I struggled with my mental health again early 2024 this time being referred to Health Psychology. Health Psycholigists work specifically with people who have long term health problems. During the pandemic they ran online, group interventions and courses for people with chronic illness. By the time I was referred to them they were transitioning all their group work and courses back to in-person, again denying me and others in my position, the psychological help the may need to deal with the emotional toll of chronic illnes. Ignored and forgotten about again.

 

I have MANY negative experiences at the hands of the NHS and the medical system as a whole, including where I went from mild to moderate-severe following a shambles of an 18-month period attempting to seek treatment for what was originally dismissed as 'probably just M.E.' (that old chestnut) to actually being a gallbladder that was so inflamed, and 100s of gallstones stuck in various places in my digestive system, that the surgeon said I had been a "walking time bomb".

Perhaps a moot point in comparison to the above, but also I have to continually ask the admin teams to please, pretty please, put a note on my records the fact that I can't make morning appointments at all due to the severity of my symptoms. But guess what? Each and every time, I am booked in for 9am appointments, which I then have to re-schedule, and as that can take many months for a new appointment, yup, you've guessed it... my symptoms and energy-levels have deteriorated. 

Thank you to everyone who has shared their experiences. We have highlighted the main themes that came out of those experiences in a new blog on the hub.

Key themes:

• Lack of energy to make and attend appointments.
• Reasonable adjustments not being made.
• Insufficient infection control measures.
• A need for greater knowledge and empathy from healthcare professionals.

This was also shared on the #ThereForMe website: Improving access to healthcare services for people with ME and Long Covid