#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

"Six things you’d like to see in the Delivery Plan for ME - Sharing feedback from our readers about their priorities for the Delivery Plan":

https://www.thereforme.uk/p/six-things-youd-like-to-see-in-the

It appears #ThereForME are in the "Task and Finish" group for the DHSC effort. (They also posted a list of other organisations that were invited to that DHSC group).

 

The problem is that if most patients are not well-enough informed to know what they really want or need you end up with the same old mish-mash.

How do you 'prevent' people with ME/CFS getting worse?

 

By stopping the use of GET and curative CBT which is widely reported to lead to deterioration. Obviously this won't protect everybody but I and many others would likely still be mild If not for psychosomatic/bps interventions.

And by teaching people and their carers how to manage their condition and rest more, so they don't do what is natural for human beings and push and push until they cant function anymore.

Obviously this does not account for other factors which might cause worsening, and I'm aware it's not entirely clear why we get worse sometimes. But it would go a long way.

 

I think PIP and benefits is a really good demonstration of why people don’t slow down.
Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years.
Are you well enough to wash, dress, cook, walk etc yes but it tired me out and cumulatively that will probably lead to making me permanently disabled.

Yeah, you’re not entitled to anything. Good luck finding a sucker to finance your life whilst you sit about meditating and “trying not to get really ill”.

 

Exploring the barriers that impact access to NHS care for people with ME and Long Covid

https://www.pslhub.org/learn/improv...are-for-people-with-me-and-long-covid-r12677/

 

Took me 8 months and all the stages to get basic PIP. I would probably have given up at the first stage had I scored any points. I was so shocked to score all zeros that I went for the mandatory reconsideration. Scored all zeros on that too so went for the appeal.

It was an absurd process where they don't listen to what you're saying and look for key words instead.

 

It’s a horrible process, yes. I had to go to appeal to get basic level. But in order to actually “pace” I need higher level. I’m not sure that “well yes I can do x, y, z but I shouldn’t” will wash.

 

Yes, but that is not what it says under prevention. It talks of things like personal care plans and 'learning from existing practices'. And this is going to be in a multidisciplinary framework in 'the community'.

Sounds like same old, same old...

We need specifics.

 

Again, this seems to completely miss the point that there is no care to be worth accessing at present. The problem is NOT access, it is that the care is worse than useless. There is also a thing about how difficult hospitals are. But they needn't be if there is an easy access bungalow style ME/CFS clinic with plenty of wheelchair space etc.

It seems a lot of words missing the point.

 

There is no care. You can’t access something which doesn’t exist.

Social services assessed I can have one visit per day for 15 minutes, the carer will microwave food and pass it to me. Any other domestic assistance I need to pay for myself.
Adult services assessed my home as adequate, no aids adjustments they can think of.
Community physio told me if I can’t sit up rigid straight with feet on the floor, then I should stay in bed until I can, all day if necessary, every day. If I want to put my feet up I should take to my bed.
Dietician told me to eat anything I can, no matter how much weight I gain, in case I lose the ability to eat the weight will keep me alive.
ME clinic want me to attend 12-18 month group sessions online to write my care plan, must stop private counselling during this time, I’m not willing to do that. GP will not write care plan.

So Ive “accessed” care and “accessed” a care plan. As a result, I’m receiving neither.

 

Quite.

 

It’s a shame S4ME isn’t on the list, although I am assume there will be quite a few active members of the forum who are involved as members of other groups.

Do we know if it’s too late for other groups to be included?

@Jonathan Edwards Are you involved with the Task and Finish group?

 

Have there been attempts at patient-designed care? @Suffolkres has been trying to get suitable services for Suffolk and NE Essex but I think that has been more about the structure of care (e.g. getting a physician-led service, that kind of thing)? (Sorry if I've got this wrong, @Suffolkes - I'm struggling to read long things at the moment.)

[Edit: Also, I haven't read this thread and have just realised it might be all about the question I've just asked, in which case, apologies!)

 

No, I probably made too many uncomfortable comments at the Working Group stage.

 

But that is all there is to suggest isn't it? A functioning long term support system based on hospital clinics plus domiciliary care.

 

That's a good question. But at the moment, we don't have physican-led clinics, and PwME are being offered all sorts of dangerous rubbish. So I wonder if it would be worth patients trying to specify at this point what care they'd want provided (for example, for sleep, pain, OI, etc.) on the basis of good evidence, and maybe asking for non-evidenced treatment only to be given as part of a clinical trial. For example, we've discussed the use of electrolytes for OI recently, and it doesn't seem to have any strong trial evidence or ongoing trials. It might be useful to point out what shouldn't be offered as much as what should be offered - including approaches based on gradually increasing activity.

This might be another thing that could be crowdsourced from the forum, potentially.

 

It's notable that AFAIK, we don't know the specifics of what the ME/CFS clinics are actually offering PwME and PwLC.

 

I think we know that. They want anything for any of these that has some evidence of working.
NICE gives a reasonable guide.

The problem is that the vast majority of patients are unaware of the problems of ensuring that treatments actually work. If advocacy groups keep saying we should have services everywhere and patients should be consultant you can bet your shirt you will end up with physios getting them to do just a bit more activity and OTs saying they better not have a wheelchair just yet and why not let's have some psychologists to blow away those unhelpful thoughts and we are back to square one.

The government is all for lots of free physio - they keep saying so, and apparently have no interest in whether it does good or bad in reality.

Rather than these vague rallyings for more services in the community to prevent worsening what we need is focus on what is actually going to be of use. The pubic have no idea of what. Probably the most useful thing is to have some committed physicians who can learn enough about the condition to be able to develop useful treatment in the future.

 

I just had a look and was surprised to see that it did, but it includes, 'Do not offer people with ME/CFS ... physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS'.

That doesn't seem to be happening in at least some places, with the whole 'pacing up' thing, which makes me wonder what else in the NICE guidelines isn't being observed.

I wish we knew what was actually going on. Is there no tracking within the NHS of whether units in any speciality (cancer, diabetes, etc.) are following the relevant NICE guidelines or not? Or is it all just, 'They're only guidelines, not rules'?

 

Any thoughts about how we can get some? We seem to be deeply unpopular as a set of patients.

Or is it the case that if we ever get physician-led clinics being set up, that's when we'll get the physicians?