Discussion in 'Information for NICE guidelines' started by lunarainbows, Aug 5, 2019.
@Russell Fleming is this something the ME Assocation could work on?
Yes, I mean the hospital passport would be adaptable. That would be about 5-6 pages long and A4 pages. That is specific to the individual and we can write a lot in it and use points we need, while also having the template.
The “alert card” (from my first post) wouldn’t be adaptable - they usually cant be adaptable because of the very nature of the card material? It is like a sort of credit card material and is a similar size or a bit bigger. So you could write for example a name on it , or sign it or write a persons contact number. But the rest of it is general information on the condition as well as what people can usually do to help us, to look at with a glance. I think this is actually important to have, as it shows both the range of severity as well as how there is just one condition called M.E.
Edit: we could include space in it for saying what our issues are. But because handwriting is quite big (compared to typed writing which we can make very small), im not sure how much could actually be written - and whether it’s better to make it a general alert card which would have all the info.
But this is what I mean about the two pronged approach -
1) getting the severity of sensory processing difficulties included in NICE guidelines so it would be recognised
And then 2) having an alert card as well as an M.E hospital passport that emphasises the sensory difficulties . If it’s included in the NICE guidelines; then these things can start be recognised. We have to start somewhere, we can at least document our sensory issues and have documents that include them, and I fear we cannot keep waiting until GPs and the everyone else is educated.
And I’m afraid I don’t agree with the similarity to migraines. Migraines are terrible, yes, I get them too. However in my opinion they are nothing at all like the sensory processing difficulties we get as a result of M.E, and I think comparing them to migraine - if we start doing that, it does a disservice to what we are going through and in educating people. It’s like saying people with autism or with sensory processing disorder have migraines. Which of course they might do. But it’s still not relevant.
There are generic cards for symptoms and issues as well so you have a few and show the one relevant to circumstance https://stickmancommunications.co.uk/product/too-much-card/
Re; cards and 'passports'.
Whilst theoretically a good idea the problem I have with all this sort of thing, especially when expected to 'work' with the general population, but also when dealing with your average doctor, government or welfare agency employee, etc. is that they don't, in my experience, actually work.
When presented with such an item the recipient starts asking questions, unanswerable questions for someone who's far enough down the rabbit hole to have felt the need to present it.
They do not, in my experience, make life easier, simplify a situation, or allow a graceful exit when overloaded.
Not the fault of the idea, but the fault of reality when combined with free range people.
The only exception is likely to be the multipage version of the 'passport' in specific contexts, but even then you're relying on the medical staff etc. being fully on board with the whole idea.
I think if we had an M.E alert card though that specifically gave information on the condition and why (I note the NAS card has a wallet - one credit sized card and then another mini fold up piece of paper with info inside - this would be even better than just one card). It works quite well. And like I wrote in my post before, saying how “I may not be able to speak much or at all”, well then they can’t ask questions.
And personally I believe this can really go some way to reducing harm done to us. Especially in the case of severe or very severe; when we absolutely need to have our sensory environment controlled in a way so that we can survive and access hospitals.
I have tried a couple of this sort of thing over the years and all that's ever been the result is complicated, and sometimes very personal, questions - or a complete refusal to acknowledge it.
Even a simple thing, like an 'official' card for use on public transport lead to questions, a driver trying to 'befriend' me, and then getting arsey because I couldn't reply/deal with him, and most importantly, not supplying the one piece of information I had asked for on the card.
Meaning I was overloaded because of the situation, I was overloaded coz he was trying to talk to me, and then lost, for hours, in the middle of a strange town, because he hadn't told me where to get off and dealing with him had caused me to lose count.
It was not a good day, and the card was a major contributor to that.
I understand people’s scepticism. Maybe it’s because before I fell ill I was involved in a small political party which was about helping the most vulnerable people as well as environmental policies, and I believe in things so much and without trying we won’t get there.
The whole point of this is we have to try. We have to do something.
if anyone is interested in taking this forward - with some sort of M.E alert card with much more specific info than the ones that already exist, as well as a hospital passport and how we can go about it - I really really want to do this.
I’m not very well though so need to be mindful as even writing these posts over the past few days has worsened my M.E quite a lot.
I understand that you cant comment on this much although I am hopeful you will be able to present anecdotes written here to the nice committee, it shows just how difficult people find things. @Samuel s report of how he is unable to access life saving care because of this. the things we love like music can be unbearable. How it gets worse with exposure. And how it’s not just due to being shut up in dark rooms (infact that’s the only thing that helps). But I wonder if you are able to comment on the workings of NICE and if there’s any potential scope for getting any kind of hospital passport acknowledged in any way? @Keela Too @adambeyoncelowe
I understand. People can be horrible. I’m really sorry. But in other situations, people can also be understanding and the more they see these cards - hopefully the more they can understand.
At the moment, I think the hospital passport is the most important thing. As for cards, some alert cards already do exist, although with not enough information, but we could always use the cards used for sensory processing or on that website that people have shared above, in the meantime - until we can figure out a way to get cards made.
But the hospital passport, the one that is amendable and we fill in, I think could make a big difference esp for severe M.E, I think that is very important and should be done more urgently. And potentially needs NICE acknowledgement. Shall I contact the ME patient association? This can also be given to care workers and GPs, as the info it contains will be relevant to them.
If focusing on severe ME would be good to contact 25% group to see if they have something on these lines or would be interested in working on developing one. @lunarainbows
@lunarainbows thank you for sharing your ideas on this. I hope someone with more energy can pick it up and run with it. Please don't wear yourself out and make yourself sicker.
I think you are right. I’ve been on these S4ME forums and written quite a few posts over the past few weeks, but I think I’ve ocerexerted myself a lot . I was working on sitting up for 2 minutes but am now struggling even with a few seconds and haven’t been able to eat solid food again. I think it’s probably best I need to take a break, apart from the occasional post. I think it will be too much for me to liaise with charities + deal with things atm.
Would anyone please be willing to do this? Don’t want to tag anyone in case of putting pressure. To write to 25% charity + other charities with this thread, about the M.E hospital passport (a copy of autism passport for examples)& how to deal with NICE? Thank you Xx
Recommending passports may be outside of the scope of the guideline, but I think mentioning sensory issues is something it probably should consider.
There will be a severe patients focus group or something similar (bearing in mind the access needs of severe patients) at some point, so that would be a good place to raise these issues, too. (I believe the outcome of the tendering process will be published in the public minutes soon.)
I honestly expect that in most cases this would only lead to more mistreatment from medical professionals. Most would just laugh it off and go out of their way to "test" patients showing those, actually thinking they are doing the right thing.
It's a good idea because it is very relevant to our well-being but in practice it would unfortunately not work. Our limitations are basically something that does not exist according to medical literature and it would only reinforce the denial. Things that work in ideal conditions often don't when they meet the randomness of everyday life.
I would actually recommend against using those because the potential for inflicting deliberate harm is too high. Eventually I think the medical profession will understand and adopt but not until patient engagement becomes a genuine thing and the by physicians for physicians model of medicine is replaced with one that places illness at the center of health care, rather than the current floating ethereal disease.
Maybe I’m being too optimistic. It’s just I have seen how dramatically different my experience was, with an autism passport, compared to my experiences in hospital before I was diagnosed with autism. It was a complete change.
And it was specifically about my sensory sensitivities too. In the case of the autism passport, I have heard that without it - lots of people don’t actually get the support they need. But with it, they do - and are able to request a lot more. This is genuinely my experience as well as what my autism counsellor has said from the people she works with.
However, you are right that with M.E, the literature on sensitivities just does not exist. So it is a very different case from autism at the moment. Maybe, we should first work on getting the NICE guidelines updated and literature updated to reflect the severity of the sensory processing difficulties. And getting our illness accepted.
Then, maybe, having a passport and/or alert card wouldn’t be detrimental. I feel quite confused on the whole issue now
I wish it wasn’t such an uphill battle for us.
I am sure in principle an ME card and passport are an excellent idea. The problem at the moment, as others have said, is we are up against disbelief and gaslighting, so unless the documents are backed by an organisation recognised by the medical and care professions, like NICE, I suspect we would get a very mixed reception to using them.
Yes. I can understand that. I think you are right that without backing of an organisation which is recognised by medical bodies, medical staff won’t take the passport seriously. And like @rvallee said the threat of harm. I had never thought of it but yes I can imagine some horrible doctors doing that.
So the first step is to getting our serious sensitivities recognised. Then the other things could follow and awareness can happen. I guess that’s what happened with autism.
At the same time though I do hope the ME association can update their alert card in the meantime to include the sensory symptoms, in some form.
I hope the NICE severe focus group can happen as sensory issues can be brought up then too. Has the focus group already been picked @adambeyoncelowe ?
I believe in your ideas and suggestions, @lunarainbows! Definitely worth a try!
Separate names with a comma.