There is a free downloadable template Limitation of Consent with Notes kindly provided by Valerie Eliot Smith on https://valerieeliotsmith.com. It has been used as well by people with Long Covid, and has been adapted slightly here and there according to individual needs and preferences, but the gist is the to put on record ‘I do not consent to be seen or treated by anyone (ie doctor, nurse, therapist, carer) who regards ME as psychological or psychogenic’. On the date Im posting this I have not heard of any problems arising from it other than 1 there being situations where there is no ME-safe doctor within geographical reach that the patient can see, bringing it down to a choice between seeing an ME-unsafe doctor or nobody, and 2 it being uncertain when an emergency arises and paramedics are called. One hopes the ambulance service will ring ahead to A and E to ensure there is an ME-safe doctor available before setting off with the patient on a sometimes long trip to hospital with a long hand over time on arrival, because if this phone call does not happen and there is no mE safe doctor there and the patient decides not to waive Limitation of Consent then the trip has been a waste of valuable time and resources and may well have left the patient worse because of PEM. The ME Association has been asked to raise this question/issue with the APPWG to see if a recommendation can be made that an identified person at ambulance service can be responsible for making this phone call and ensuring the pwME is only taken to somewhere they can have safe treatment. My hope is that this would enable those very severely ill with ME to decide it is worth risking going in when they might otherwise have refused treatment because of the risks. Any other resources to help clarify this whole area of informed consent and the NHS duty of care when there are no NICE NG206 compliant doctors available would be welcome here, and points to bear in mind for future discussion.
I don't know how this would work. If you have an emergency and need to get to the ER immediately, if there isn't an ME friendly doctor available you are still going to need to go the hospital.
Record-breaking ambulance waiting times could get ‘significantly worse’ in winter, chiefs warn "The June figures also showed that almost 6,485 people waited in ambulances outside hospitals in England for more than four hours, while 3,925 waited over five hours. A further 494 waited longer than 10 hours, with the some waiting for up to 23 hours." The Guardian view on ambulance waiting times: signs of a collapsing NHS "This is a public service announcement: if you are one of the 5.6 million people in the West Midlands on 17 August, don’t have a heart attack or a stroke. The chances are that no one will arrive in an ambulance to help you. Unbelievable as it might sound, this warning was delivered last month to those served by the region’s NHS ambulance service. It’s not a one-off. The BBC reported on the case of Kenneth Shadbolt, 94, who waited more than five hours after a bad fall – an accident that proved fatal. The scandal is compounded by the deaths of patients in ambulances that have been kept waiting outside NHS hospital emergency departments." So, haggard faced Paramedic turns up at 2 in the morning, been on shift for 12 hours, no proper break, just lost a patient in the ambulance while waiting outside A&E for five hours, and someone says to them "I urgently need to go to hospital but could you check there's nice doctor who'll see me who's all clued up on my specific illness because otherwise I'll leave it".
Why? If you have very severe ME or even Severe ME then there is a risk to life - if you go in urgently with dehydration, malnutrition, bring seen by an unsafe doctor starts the cascade of misdiagnosis and PEM triggering that can lead to death, thats a pretty good reason to my mind to not risk going in! If you have a hostile environment at the hospital where once they think you are a psychosomatic patient they dont take any symptoms seriously they may well miss sepsis and other serious conditions, not to mention the psychological/verbal abuse dished out. Cases come to mind of patient being wrongly sent home with untreated heart condition crisis because labelled a time waster on account of ME, and at least one case of sepsis signs being ignored because having ME means its not urgent, all in the mind. Going to ME unsafe doctors is dangerous. Obviously if someone has a broken leg or something, they can choose to waive their limitation of consent, but that is a very different situation. Another situation, say they have really terrible pain from the ME, abdominal or neurological or whatever, whats the risk in going in to see an unsafe doctor? They will be sent home untreated because the doctor will consider there is nothing wrong. Wasted trip means PEM is triggered, patient may get much worse. Or the unsafe doctor will acknowledge the pain, but completely fail to grasp this is ME GI problem and put the patient through pointless tests and procedures rather than providing pain relief and assisted nutrition. We need the Lim. Cons. respected.
Well they had better suck it up because the matter of life or death, or risk of lasting deterioration may be meaningless to the tired paramedic but it matters a great deal to the patient in question. And in a collapsed NHS the need to save wasted trips to hospitals becomes very much MORE urgent. The harmful doctors who gaslight ME patients may actually be useful and safe seeing someone else, a patient who doesnt have ME. So yes, a patient with ME in an emergency should be able to be certain they are able to be seen by an ME safe doctor , or at least one who is not substandard because they ignore NICE , before they agree to go in. That is what is already happening. Patients, sometimes very seriously ill with ME , are refusing to go in.
I don't understand - who is going to "suck it up" ? Patients wanting paramedic supported transport to an emergency department aren't in a position to demand which clinicians will treat them in A&E - either the patient is in need of emergency intervention in hospital or they are not. Having a doorstep debate with paramedics on whether or not the patient wants to be taken to hospital, or the bizarre proposition that overworked paramedics are going to be having phone calls with overworked A&E doctors about those doctors qualifications and medical opinions is not going to be received sympathetically either by the NHS, or the wider public. Wanting the NHS to be better for ME/CFS patients is fine - it's what many of us UKers talk about here, but denying the realities of the UK in 2022 isn't going to get anybody anywhere.
I wouldn't tell them I have M.E. and would describe the symptoms I'm experiencing. They could explain that they have autonomic issues and can't exert themselves? Most provinces in Canada can't even get an ambulance service at this time ("code zero"), let alone securing a doctor that understands M.E. I understand your concerns though
I'm very fortunate that I live in BC, Canada, so that, thankfully, isn't an issue for me. I forget that it's different in the UK. I've never once been treated poorly by anyone at any hospital when I've been having tests, procedures, surgery, or seeing a doctor in the ER even when they are aware that I have ME.
It's been fragile for years, but nothing like we are seeing now. Here in BC if they want to attract new doctors they've got to start paying them a salary, instead of the 'per service' system they have at the moment. A GP averages $31 per visit regardless of whether it is a 10 minute visit or a 45 minute visit. There are approximately 900,000 people in BC without a GP at the moment, and there are so many doctors who plan on retiring within the next couple of years.
I can't see this working in the UK. Anyone who is considered to have conditions that are "all in the head" has almost certainly been flagged on the NHS computer systems as being a lazy waste of space, mentally ill, and a drug-seeker. I thought I might have broken my arm as a result of a fall a few years ago, so I went to A&E. When I gave my name at the reception desk the receptionist found me on her computer and then immediately looked up at me and scowled. I was called in to the triage nurse, and as I approached the doorway of her room she called out in a sing-song voice with a big cheesy grin on her face that "I can't give you any pain killers". Now, I wasn't asking for pain relief, or screaming, crying, pleading, begging, shouting, threatening, fighting, making a fuss, or any other behaviour I guess is expected from drug-seekers. But she assumed that was what I was there for, and it can only be because that is what my records are flagged with. What I actually wanted was an X-Ray, which I got, and it didn't show any evidence of a break. What I had was a haematoma, but I didn't know anything about them, never having had one before. Once I knew I didn't need a cast I left. But if I had been in terrible pain when I arrived I would have been stuffed and I would have struggled to get any treatment because they had obviously decided I was a waste of space. But luckily for me haematomas aren't invisible so I got the X-Ray I wanted. Edit: Grammar
I don't agree. If it's an emergency, you see whoever is assigned to you. I don't see how a doctor can refuse to treat a patient in an emergency even if they do have ME. If you are having a heart attack, a stroke, had a bad fall, running a high fever, etc. no doctor is going to refuse to treat you ME or not. And you can't expect the EMTs to stay with you for longer than necessary because an ME Safe doctor isn't available because they are busy with another patient. If the ambulance service is anything like ours here at the moment, the EMTs are very short staffed due to covid and stress leaves. They can't afford to wait around for several more hours because someone wants an "ME Safe doctor".
The doctor is not refusing to treat. The patient is not consenting to be treated by a doctor who is not safe to treat someone with ME because they need to ensure they dont get made much worse! This is absolutely the patient’s right to decide, to give informed consent. There is no reason in an emergency any patient should be grateful for substandard or dangerous treatment. Being confronted by a non NG206 compliant muppet might just be mildly irritating if the patient is only mildly ill with ME and been admitted for something else. However, it can be a matter of doing significant harm, sometimes contributing to a cascade of misdiagnosis and mistreatment leading to death if the patient is very severe. The issue of handover delays needs thought, as does the risk of leaving a very ill patient in a PEM inducing environment for a long time because the NG206 compliant doctor has just gone off shift or is dealing with someone more urgent. This is why it needs raising, thinking through, and solutions to be found that are better than patients simply doing what has happened before and refusing to go in at all when they actually need to, discharging themselves in despair and going home to die because they cannot find a safe doctor who is safe with ME patients. Those are my thoughts and why this needs to be raised. There have been far too many deaths, at least some of which may well have been avoided.
Good point about notes - I think in the UK we have the right to have a copy, and can at least make complaints afterwards. Interesting that this has been interpreted as ‘making demands’ about which clinicians will treat them. Not the case I think, as they are willing to see anyone complying with NICE guidelines which is what defines the normal standard of competent medical care here in the UK. Anything else in the case of ME we know is substandard and potentially harmful. People (Im assuming we are talking about Severe/Very Severe) cannot be expected to go in blindly and agree to be treated by a doctor without checking to see if the doc is following NICE NG206 2021 or 2007? Do we honestly expect patients to consent to that, specially when they are very ill and vulnerable? This issue needs to be raised, I would argue, because the alternative is someone needing to go in by ambulance in an emergency but after an EMT assessment and some idea what was probably happening, because the patient doubts there is a doctor in the hospital who is safe to see patients with ME, they decide not to risk going in and stay home against medical advice. Something not dissimilar happens when patients discharge themselves against medical advice because there is no doctor available who is safe to see patients with ME. These are real situations. (NHS setting, the patient may well have no alternative provision just as in other countries).
agreed. But just because the NHS has fallen apart doesnt mean we dont attempt to get safe health care to as many ME patients as possible,I would suggest it makes it more urgent, not less urgent.
Someone has helpfully suggested an alert for notes consisting of a red stop sign and ‘M.E. Biomedical approach only’ maybe ‘consent limitation’ beneath, or something similar.
Personally, I think we need to be lobbying for something that is 'in the system' - a safety officer (someone mentioned Ryan's law in Australia) who has different obligations and ergo isn't under the hierarchy pressure and has some weight, as the interim. I struggle to see how a vulnerable patient who cannot advocate for themselves - and if they do could be deemed as, if their opinion differs to the medics of that place's orthodoxy, 'deluded', with their level of illness affecting their ability to communicate well backing this up with those who aren't familiar with how ill ME can make people etc - could present something that mightn't be well understood or taken and for it to make things better. If someone has a medical issue that needs treating then delaying that for reasons they might see as difficult to understand or not relevant could just make that worse. It could also get people's backs up, as I suspect one issue with ME myths is 'difficult patient'. I'm absolutely 100% behind us needing protections. I fail to see how this one is anything more than a 'yeah try presenting that and see how it goes' fob off for those who aren't in unusually fortunate situations or have significantly more power or clout than the average ME person who has to tip-toe carefully around health services due to all the things that they could get labelled with. If there is noone behind them giving that weight this feels a distraction (unlikely to work) from getting that minimum sorted. There are lots of situations where we can be told about 'rights' we have - whether ME specific or not - where the reality of the situation makes it impossible to enforce those due to power differences and fact someone could rewrite history because there isn't evidence of what was said or happened. Rarely is it those who obviously look so ill and vulnerable to certain tactics that they couldn't win a fight who do well out of going into one.
I have been to the emergency in Canada years ago for different reasons, and whether you have M.E or not isn't going to change their protocol- ever.
Yup. I've only ever been in an ambulance/A&E once in my life - over 20 years ago, even then 10+ years of having ME - I certainly wasn't concerned about whether any staff were ME aware or whatever. I was however (reasonably so) concerned that I may have lost permanent function in a hand. It was utterly irrelevant whether the surgeon, anaesthetist or surgical nurses knew anything about ME, what mattered was whether I was or was not going to have irreparable nerve damage. Thankfully all those people knew what they were doing and I eventually got full function back. And as it happened the ward staff where I spent a couple of days post op were not unsympathetic to my ME state but the idea I'd have delayed urgent surgery while trying to find out if everyone from weekend A&E reception to weekday physio discharge were all up on the latest guidance is crazy - I wanted my hand fixed, stitched and pain relieved all of which was delivered - thank you NHS !
One time in the early years of M.E I went to the ER for dizziness. When I mentioned I had just recently been dx with CFS, he said with a smile, "oh you don't want that". What did that even mean?
