Limitation of Consent

Its only really something of value if you find yourself in hospital for ME symptoms and they aren't treating you within the guidelines. At which point you have prepared a withdrawal of consent from the current doctor causing you concern. I can see it having its uses, I avoid hospitals completely because their chance of hurting me is much higher than not given how the NHS treats ME/CFS patients. The last time I went into hospital I arranged transport and a series of adjustments to ensure the trip did not cause me PEM and every single aspect of what I had agreed was broken, from the transport through to the waiting, lighting, noise etc. There is good reason not to trust the NHS when it comes to treatment of ME/CFS patients at the current time and I think having a basic withdrawal of consent to hopefully avoid the need to have Action for ME or similar lawyers extract you from a Psychologists hold I think is valuable. I have seen too many ME/CFS patients tortured against their will and now we have the guidelines it should be possible to stop it without the need for malpractice lawyers sent into the hospital. It should limit the harm the cabal of psychologists who refuse to adopt the guidelines can do without putting themselves in legal hot water. They still represent the bulk of ME/CFS "specialists" you might see, things are only changing very slowly. What it wont do is make a hospital a safe place for an ME patient, until they can accommodate our needs its still a place more like to harm than help even when treating something else.

Edit: I can also see me using this against one of the GPs in my current GP office, I am pretty certain he doesn't believe in a biological basis for any chronic illness so I really want nothing to do with him and if I get to the stage to exclude him it will be a formal withdrawal of consent to be spoken to by this doctor. I have had quite enough of these types.

 

I love the idea of someone there to monitor safety, yes I completely agree, that should be looked at. But who where would it fit in the system? This is a safety issue, but there has not yet, to my understanding been a successful court case establishing damages for harm done by unsafe ME doctors even though deaths happen regularly, and probably far more than come to our notice. ARe we in the UK only ‘noticing’ when it happens to a young person and they have close family making a noise about it on social media? I do hope the upcoming inquest in Exeter will have some outcome that will make it safer for all of us to access healthcare. With regard to your second point all I can say is that the Lim. consent has been used apparently now in quite a few countries, including Uk,US, Canada, I think now in France , it has been passed to patients or their advocates in Austria, Singapore I think, Portugal definitely, with no negative outcomes anywhere to my knowledge, though two patients have been told there are simply no doctors with biomedical approach in their surgeries. (Does the local ICB then have a responsibility to find one?) The two problem areas are when there is no safe ME doctor anywhere within reach, and I am concerned about how it may be unpredictable how it works out in emergencies. But Im not as concerned about it hitting problems as I am about patients refusing care altogether without it? If that makes sense, a rock and a hard place. It has hit problems with the system in the Netherlands, where apparently state health care forces patients to go to the nearest doctor to whom they have been allocated by geography, regardless of how incompetent or dangerous they are with ME. It is that or pay privately, and many are too sick to travel. There are still many people who have to relocate to access doctors who would be listed as safe.
I am worried that there are not enough local ME groups monitoring local provision in both primary care and hospitals. My personal experience has been that here in the UK it has been respected by everyone encountered so far from orthopedics, to OTs to physios, to carers, to GPs to locums and all routine appointments. No problems, no hissy fits or acts of petty vengeance yet though I am under absolutely no illusions, that behaviour is certainly out there. I recognise how hard it is for those relying on advocates, it is easier to say ‘zero tolerance’ than for individuals to stand their ground while very ill.

 

I remember reading a Job Description (might have been historical) for Cornwall (ironic given I'm not sure what that ME/CFS clinic is like currently). It had as part of the description of the clinic that one part of the role for those in the ME/CFS dept was 'outreach' within the hospital.

I might well have had my hopeful imagination hat on but did think that if they set up decent medical arrangements then this should be part of it - basically if someone really ill with ME came in I'd assume it would be about adjustments but also recommendations on meds.

I've seen some really good feedback on social media from someone being treated for another condition entirely and the department at that particular hospital being exemplary in each stage of op, recovery post-op, rehab, and contacting them to say they'd read up on this or that re: informing the op and @PhysiosforME info regarding the next stage.

It doesn't feel beyond the imagination, particularly given the stigma issue for a senior to be made responsible for ensuring there is a system to keep PwME safe - and I imagine some of it begins with the admin side of them being 'visible' as is their treatment. And some sort of recommended regs or needing a safety officer who just knows what it is present that can be called in - even if it isn't an ME specialist but of the attitude and level of the example above.

I don't pretend to be an expert on how these places work but it feels better to 'call in the nominated ME safety officer' (someone who knows 'enough' on the basic dos and don'ts) who completes whatever reporting checks - at the point where it doesn't interfere with utter emergencies (that's the tricky one). Ryan's Law I think was about requesting a re-look at things and apparently taken seriously because of the 'weight' given to it. So it feels the right advice sources and the right 'weight' and transparency (people don't 'disappear into a different diagnosis' because they flag something when they come in) might be the lynchpins.

But I know ASD can have a hard time, as can set-up not be great for many disabilities. I get I'm naive, but on the other hand would be v intrigued to see what could be worked up as possible in any variation here.

 

The NHS is being squeezed in a vice

"During June of this year, 102,000 people waited 12 or more hours in A&E, almost four times the pre-pandemic average for the same month. A further 441,000 waited between four and 12 hours, double the typical number. By my calculations, June’s waiting times alone are likely to have resulted in more than 2,000 additional deaths during the following days and weeks due to the significantly elevated mortality risk associated with waiting so long for urgent care or admission. The total number of additional A&E-linked deaths since waiting times rocketed is an almost perfect match for the missing 12,000."

 

My thought there is that it makes a great deal of sense to argue for ME safety officers in every hospital, and also for docs to be aware of limitations of consent / biomedical approach only flags on ME patients records. My concern is that it could work well in Cornwall where there is a safe-listed ME clinic, but the real dangers to life happen where consultants are likely to flip diagnoses, ride roughshod over safety advice and ignore patient requests for input from national experts with decades of experience with very severe ME patients. Fragile egos hold sway over safety concerns, patient requests and plain common sense, not to mention NICE NG206. It is going to take more than a safety officer to make some hospitals I can think of into safe enough places for ME patients to be admitted even in an emergency. There are a lot of doctors around who might give a notional nod to the possibility there are biomedical ‘aspects’ to ME but these same doctors are often those who have never seen Very Severe ME patients, are clueless about the multisystem nature of the disease and simply dont grasp how serious a disease ME is. Much of their perception of the disease is still revolving around ‘this patient has been complaining of feeling a bit more tired than normal lately’, as referral letters have been known to put it! But the suggestion of safety officers is great, and put together with NICE NG206 and the limitation of consent it addresses the problem then from three directions, NICE. It would be interesting to see a fragile ego’d consultant trying to explain to a Coroner how the death of a patient came about when all three of those safeguards were in place.

 

Earlier discussion in this thread was focused around the fact that the Limitation of Consent form was of no use in an emergency hospital setting. However, the form was not designed for emergency use as clearly different considerations would apply in an A&E situation.

Background: A few months ago, I was asked by another advocate to help with designing a suitable form which patients/parents/carers could prepare in advance where they are uncertain, or simply anxious, about an imminent appointment. This is only for when the appointment is wholly, or at least partially, ME-related.

Initially, I was sceptical about how useful this form could be but then I thought about it and realised it could be a legitimate support tool for patients to have available. Its main utility is as a memory aid and also to help in situations where the appointment may not be going well but the patient's cognitive functions are collapsing and/or freezing, a syndrome which I am very familiar with myself.

This is not a legal document and its use is limited, as is explained in the blog post. However, the hope is that it could help in preparing for what might be a challenging situation and provide a small amount of reassurance as a document to which the patient can refer if they are feeling vulnerable. It also provides some information generally about how consent works, capacity and the relevant sections of the 2021 NICE guideline.

Anyone who is interested and wants to discuss this further should read the relevant blog post (it's quite short), look at the form template and, most importantly, read the guidance notes which I prepared.

The post + form and guidance notes are at https://valerieeliotsmith.com/2022/...-template-form-guidance-notes-with-downloads/

ETA: Some long Covid patients have adapted the form for their own use. The feedback generally is that some patients with ME and LC have found it helpful.

 

Agreed - I'm not sure that is what was in place in Cornwall, or on what basis but my probable misreading of it inspired me a bit.

And it is 'those hospitals' (ie all but some are particularly worrying) where I think putting responsibility for 'knowing' and 'logging that they know' if they have someone with ME and what happens to them on someone who is senior - by which I mean management and not doctors to report on and explain might provide the right 'friction'. It's more about transparency, removing the 'debate' concept and giving someone high up accountability - and clear instruction on what will be seen as dodgy 'standard of treatment-wise'.

It's up to them how whether that is training and rules for all staff or safety procedures to oversight patient from these issues. I think the message that someone is going to turn up and say 'why is this person .. not here or being refused x or being treated by y with that approach or been diagnosed with hysteria' and the chain-of-command and clarity meaning that it isn't aspects that are 'oh that's up for debate.. BPS could be right bla bla'. It's putting safety on the hospital, not just covered by 'the doctor's opinion'?

If a senior manager knows that claiming 'they had no idea, didn't receive an email or whatnot' is going to be no cover for them it tends to create a switch from 'responsibility of the attending or whatever' to 'need proper process in place'. I'm not saying that they do the care, but put in place the processes where at all times e.g. in a hospital there are staff who log someone has ME when they enter, and involve a safety officer - who doesn't need to be a specialist themselves but I guess a list of things could be provided (biomed approach being key, but lots of sources of good info to cross-check with) and has a check-list to complete but also it's transparency making sure someone isn't shoved out the door or to certain depts or treatment types due to stigma. I'm sure there are some common-issue case studies where protocols could be asked to be prepped for

 

The thing is that these are both correct.

That is a scary and inappropriate situation to exist. Most healthy people could not accept a situation where emergency care came with such risks you might be better off not going. And this is people who are seriously ill - and potentially misdiagnosed or haven't had other diagnoses looked into due to nature of historical issues, so hugely more likely to need it.

Yet it is not known about enough for some reason, numbers are not even logged (although how we log all the variations on how it affects access to care is a more difficult one - as some may refuse and be allowed, others end up potentially under mental health, others don't do well but as it might be 'other things' - just as many dementia patients die of heart problems).

What are we going to do for these situations as a stop-gap that could make it safe/what do we need to be asking for as a bare minimum? And how do we described this situation well in order to make that obvious it needs to happen?

 

Thank you. It makes sense as a back-up for when you've run out of cognitive ability and 'given it a go' in good faith in a non-emergency setting and does a better job of saying 'no thanks' effectively than you might if caught on the hop and out of energy. The last thing anyone would want is to feel they are bringing up a verbal debate so having it written is useful.

I do think that it is worthwhile us having a discussion thread on here, but also hopefully picked up in other places too, on how we make the more emergency-type situations less risky. And by that I don't assume it is down to the patient or aiming for 'perfect'

The in-between issue is also present for people who have serious physical symptoms (which could be enough to 'scare' physicians in level of seriousness) that are ME-related but the how of that not well-understood. There is no choice in getting to the bottom or treating it eventually (or at least having a good explanation and someone responsible for care) and the absence of 'good choices' and front-line knowing these are the most appropriate ie education on this, is a massive issue.

It is pretty scary having ME when it affects you to a certain physical level because you become aware of the 'refusing treatment' issue not looking good, nor helping.

One obvious necessity is developing a register and cohort of physicians across the commonly needed areas and some sort of creative interim set-up to work out how that can then provide safety into geographic areas that they aren't - no small job or concept.

 

For me it is a matter of putting unequivocally on record that I absolutely Do NOT consent to any appointment, consult, treatment or anything else involving a doctor, nurse, OT, carer etc etc who regards ME as psychological. I only consent to a biomedical approach to ME. If I am in a consult with a doctor who is leading me up the garden path somehow , pretending they are taking it seriously when they are not ( been there,been fooled, got the scars)he or she is seeing me AGAINST my wishes, I will walk out. I will make a written complaint, I may (depending on how they handle it) put it up on social media. If they lay a finger on me to examine me in a consult to which I have made it utterly clear I do not consent I will report them to the police and say that I consider this to have been assault even if the police and cps will almost certainly ignore it. I have already made absolutely clear my limitation of consent stands even if there is a medical emergency, and it is next to my bed. I am saying no. I am saying no after forty five hellish years of abusive gaslighting by wilfully ignorant doctors who even now treat the few experts in the disease with rudeness and contempt. My policy is ZERO tolerance. There are some really good doctors out there, including in my local surgery, but I also intend to keep myself safe at all times, and that also means making a risk assessment and taking steps to make sure I am safe if I have to go to hospital in an emergency. You know - this doesnt just apply even to ME/cfs. I sat in the local park earlier and was talking to a stranger who has a heart condition. She had such terrible experiences when she had her heart attacks she would never go to (named) hospital again even in an emergency. Trust can be shattered in a few minutes and take decades to recover. She was being gaslit when she was actually having a heart attack. Enough. It stops now!

 

I think safe lists are incredibly important and this is where we need good local groups because they will be able to keep up with rapidly changing locums and gps who do very part time hours. I think it is very important that doctors become familiar with the reality that patients can, and may well, say no to biopsychosocial approach in clinical practice (I dont know that anyone would object to its use in public health) as well as to false psychologization of ME. I think doctors are going to need to get to grips with the fact they have, actually, very little to offer. Surgery can be lifesaving, Im alive today only because of it, but they can do virtually nothing for ME except alleviating some symptoms now and again and providing assisted nutrition even while they are all too often denying at the same time that it can cause organ failure! It is time to get real, and be honest about the reality out there. They may have spent a decade or two training and practicing, but but when most of the chronic conditions are beyond them to help. Nothing wrong with honesty, nothing wrong with humility, and I’m all for treating professionals with respect - I appreciated receiving respect in mine - but gas lighting has to stop right now.

 

Agreed. Although of course the issue with local groups is the energy-limiting nature of the condition combined with lack of support meaning there are few with it, or who care for someone with it who have any spare bandwidth whatever the severity vs the significant demands of such a group. We need to look into ways that these can be bother better supported and of course have tips to make sure that governance-wise they aren't susceptible to people with personal agendas (one of the risks if you had a non-ME person running one).

My thought was particularly on specialists in things like heart and lung, general medicine/bowel, endocrinology and so on - and how it might be there are some very good ones across the country should someone have ME and issues in those areas but access to that particular individual might be difficult for obvious reasons. I'm thinking how could 'outreach' be possible or something - because I get what you are saying but people have unavoidable issues they might need to address. And that issue might need to be more national I guess?

 

It's unfortunate that we women have different symptoms of a heart attack than what men have. Sadly a lot of doctors are not aware of this, even doctors working in the ER. You would think that in 2022 this would be common knowledge by now.