A new support pack for anyone with ME/CFS going to hospital (MEA)

https://meassociation.org.uk/2024/05/a-new-support-pack-for-anyone-with-me-cfs-going-to-hospital/

In response to increasing requests for advocacy support from people with ME/CFS in hospital, including those more severely affected, The 25% ME Group, Action for M.E., Blue Ribbon for the Awareness of ME (BRAME) and The ME Association have co-produced a new resource.

Supporting people with ME/CFS in hospital is designed to help patients, carers and family members advocate for their needs, choosing which sections of the resource they would like to share with the health professional treating them.

 

I like some aspects of this, however it is LONG.

 

I will use this pack as my "hospital passport" (whether or not it is officially recognised is another question).

It says "Recognise that symptoms of severe or very severe ME/CFS may mean that: • people need a low-stimulus environment, for example a dark quiet room with be, interaction at a level of their choice"

And
"People with severe or very severe ME/CFS are likely to have severe orthostatic problems -they may need to lie flat at all times"

This does seem to infer that mild and moderate don't come with those issues. It goes on to mention the sensory stuff more generally later but doesn't mention orthostatic intolerance again. This confuses me.

 

I haven’t been through this all but it’s good to see copying and pasting from the NICE guidelines rather than trying to rewrite things.

I didn’t quite read it like that. “Severe” and “at all times” seems to be quite specific.

But I can understand the concerns of people who are mild/moderate and have orthostatic intolerance and need accommodations made too. So perhaps more an omission rather than anything else.

A lot of these things feel quite difficult to communicate without muddying the water and making the document even longer.

I wonder, how would you suggest covering the issue and highlighting the similarities but the differences?

 

I honestly don't know, but as you say - as a mild/moderate with OI I'll have to think about how I make sure my orthostatic intolerance-related needs are met

 

Definitely. It’s rubbish that we even have to think about this. Educating the healthcare professionals we interact with is just another challenge we don’t need.

I guess one of the challenges in these documents, is that they can’t cover everything, they can’t be one size fits all, so some choices have to be made about what to include and how to word it. The more is put in, the more comprehensive they seem so the more anything missing stands out. And the more likely they are to be less useful for patients or professionals due to length.

I’m not sure what the answer is either. But finding some sort of minimum, punchy and effective core list that makes it clear individuals have individual variations and needs seems the goal.

Maybe much comes back to the oft overlooked “listen to and believe what the patient tells you.”

 

Er...do they really think any busy HCP is going to read multiple pages on how to accommodate pwME/CFS?

While it's not specific to hospital care, CDC actually has a half-decent ONE PAGE review of severe ME/CFS (though I see they've rather unfortunately added pictures; the earlier version was much better suited to being printed out).

 

You’re not meant to share the whole thing with them just the bits most relevant to your own specific situation.

 

Agreed. Though I could imagine all they would need to do is add a sentence or two stating something about in extreme situations extraordinary measures such as PEG tube feeding or total parenteral nutrition may be necessary to avoid starvation?

 

I agree. I can't imagine handing this over, especially because the 90% that doesn't apply to me would drown out the 10% that does. It says on the MEA website that you should choose the useful sections to show, but most of each of the sections wouldn't apply. I wonder if the best use for it would be to use it as resource from which to build your own list of needs and vulnerabilities.

Any thoughts about this, @Jonathan Edwards? What would you have done with this if a patient had given you it in your hospital?

 

I suspect that now that patient notes are computerised it would go straight in the waste bin for hygiene reasons.

I share the concerns about length and both that much of it may not apply to your own case for particular admission and that it may be quite hard to know which bits do apply. I think it would be pretty stressful for the average patient trying to work out what to do with it.

There is a need for hospital staff to understand better the needs of people with ME/CFS but I doubt this is a practical way to fulfil that need. Like so much stuff these days it is written in a bullet point style that gives little sense of perspective or emphasis to any content, or how it links together. There are a lot of general statements that are fairly obvious and may not need saying. Some others aren't particularly well grounded in evidence. Doctors get bombarded with iformation every minute of the day. They rapidly develop a defence screening system to pick out things they think are actually going to tell them something new and well grounded. Lots of committee-speak preamble is likely to be a signal to go for the bin.

It is easy to criticise but I think there are better ways to do this. Maybe I should try to come up with something else simpler and more to the point. As I said recently, maybe S4ME should produce some literature. There is no shortage of people here who know how to write clearly and forcefully.

 

When I knew I was going to be admitted to the Brompton a few years ago for heart tests over several days, it was very helpful to have a letter from Dr Bansal for the heart Consultant explaining how to ensure the illness was not made worse by the investigations.

He wrote a letter about two thirds of a side long, advising spreading out tests so that I had rests in between for recovery, that physio should be not be too pressured, I can't remember more, but I was very glad to have it when on coming round from anaesthesia, I was asked to immediately do an additional test, a stress echo. They were perplexed when I refused but in the context of the letter explaining that testing should be spread out, it was understood and was arranged for me to come back to complete that test which I did. I had no ill effects from the testing.

A useful document.

 

That would be fantastic, and hugely valuable.

I agree, but having a name on it like yours would really help get it taken seriously.

That's more like it!

 

That doesn't surprise me.

 

The autism passport might be a useful starting point for some pwME/CFS. It lists some of the things we might want to draw attention to—specially as a brief summary for nurses, who'll be handing over to others at shift changes.

Most important things to know about me

How I would like you to communicate me

How I would like to communicate with you

Things that cause me distress

Ways you can help me avoid distress

 

So, it seems that what we need is about two thirds of a side - I guessed it would be something like that. You don't still have the letter I suppose @Binkie4 ?

 

Maybe Dr Bansal would, if @Binkie4 doesn't?

 

It was many years ago Jonathan. I'll have a think and have a search if I come up with any ideas. I have remembered ( I think) that he recommended saline during all tests. I certainly had saline for any stressful test because I had to be admitted when I went back for the stress echo so that saline could be administered.

 

All trusts now have a version of an autism passport e.g. here's one