Care and Support Plan template free to download, Action for ME

It’s brilliant, Trish. Simple, clear, NICE led.
If I wasn’t very crash I’d do a side by side

 

The BACME care plan has a section for you to rate symptoms and how severe they are. Which struck me as a lot of work to keep updated, with little pay off. (See example below)
However I want to do a care plan based on NICE like Trish did, but I’ll refer to my monthly FUNCAP and reports in my visible app for latest data.

 

Doesn’t matter where they’re kept as no clinician looks at them or has the slightest interest

 

Reads more like the old trope of goal-setting to me. It certainly fits with the "they can do anything they want, they just think they can't", and that putting it in writing provides the motivation to blah-blah-whatever.

Damn is hope just being used as a toxic weapon nowadays.

 

I wonder if this document being offered “free to download” fulfils charity obligations to pwME where the content fulfils obligations to other allegiances.


I can imagine that they got feed back from people with ME somewhere along the line. But whether they got feed back from pwME who walked on tip toe out of habit so as not to get the medical professional involved offside, or else pwME who don’t know much about the details in the history of ME or the specific BPS phrases that are used, or whether they just got a couple of very polite people who didn’t really know what was going on, or whether any criticism from pwME was brushed aside, or whether no direct input was taken at all, instead surveys put out, out of context questions asked and possibly leading ones too, this document obviously doesn’t represent an offer in any way able to benefit the lives of pwME. It reads like cover for the continued blight upon our lives that is BPS and self-help related paperwork.

 

I wonder if #thereforME would put out a rival one (the NICE one)

all the film flam in the care plan is for the BSP brigade’s benefit, not ours, as others have pointed out.

Nothing about us, without us.

 

Good suggestion are you in touch with them?. They are looking for input and ideas I think.

 

Indeed. It feels like a very important - given other scandals that have been going on - campaign to highlight how much coercion, peer pressure, perceived threats are not even being acknowledged nevermind 'made safe' and potentially, along with not recruiting patients who are either representative or 'qualified' (in the research sense - you don't know how ME/CFS works until you've been through the mill for enough years that you've experimented to find out how PEM works, and we've all been in situations where you are one-foot-in-front-of-the-other with a fixed grin in rolling PEM because we can't cope with having the world slight us on top of that lack of adjustment), have been depended upon for 'results' from studies focused on subjective replies for ME.

It has to stop, and people have to stop being allowed to design either patient groups where they are not revolving around the limitations of patients who fit the appropriate representation of what is being studied or written for (you can't have mild patients talking for severe, except for the few who have been there and slowly recovered due to years and years of extreme care in resting - and both need the timescales and methods to stop revolving around what is convenient for healthy investigators and admins).

Non-medics manage it. It would be the norm in good market research, so I find it pathetic. There's no excuse. It doesn't matter whether funding is a grant (we should have charities requiring a set of protocols that must be ticked ethics-wise to get these, and this should be in it) or just people on tenure who can use this methodological move forward in their write-up.

Thanks but no thanks for having some old-schooler writing something 'for us'. That encourages people to imagine themselves in mental health terms that aren't applicable. Which isn't helpful or healthy. Are we supposed to carry on being required to feign being grateful for the paternalism?

My number one question is how much did this cost them? And if not then they might want to ask why not? And if so why is it not being used to form something far better and more sustainable for future projects, putting in the resources and infrastructure to get experienced patients and useful people who manage these things well like PhysiosforME?

There were so many other ways to do this, given it's 3 years and @Trish has shown there was a framework there already - with this not adding anything useful (where having examples for different severities might have, but then Pete works in a clinic which I assume doesn't deal with those who can't get there so... mild and the rest maybe just 'fatigue'?)

 

Afraid not, I’m all ideas and no action. I’d be thrilled if someone else did contact them though.

 

Great, this could be filed next to

• my WRAP plan (for which I had to sit on a call for two hours with a recovery navigator who wrote down what I said and which hasn't been read by anybody but myself since it's creation)
• my PIP application and renewal form
• my access to work forms, my work 'reasonable adjustments' passport (useful), my work reasonable adjustments agreements form thing
• my half completed care act assessment forms which I abandoned and asked for a verbal assessment, my social care care and support plan (pending)
• my list of current medications and diagnoses I keep and print for every hospital visit (useful) (because the info is known by my GP but NOT all visible on shared systems or perhaps people don't want to bother to look)
• my asthma plan (useful)

None of which can be subbed for one another, none of which any separate party are interested in, many of which say similar things, most of which I had to write or invest significant time and energy into.

 

Yes.

• Filled out by health/care worker, not patient
• Succinct
• Lists patients' important NEEDS that health and care professionals need to meet/respect, hence then...
• ACTIONS

Eta because I accidentally pressed post...a section could be "reasonable adjustments related to accessing healthcare services" and an action could be "get reasonable adjustments needs flagged on shared care record"
Eta Trish already included that

 

IF a document had been filled out by the ME service which included the RIGHT things for e.g. PIP, social care, and it was kept up to date at least annually, THEN it may have been useful for me when applying for e.g. PIP. However, I have many conditions, many of which affect me in ways that feed into PIP and social care needs, many of which have various management strategies plus medications, and cause me to need reasonable adjustments, require reviews etc., so really there needs to be some sort of master, main source of information that specialist areas feed into, that is a concise summary and record of care and....wait...a summary care...something...record? That's it, a Summary Care Record!!!

I know there are initiatives underway in the NHS to try to make this happen smoothly, but it is slow, and the record has very limited information. Even end-of-life wishes forms are uploaded by GPs or nurses in the community but not accessed/downloaded by hospitals for some reason or other to do with a) knowledge and will and b) technology.

 

I dunno, I think the NHS are working towards computerised records but it’s not all talking to each others GP/hospital/trust. So, paper it is!

I spent a time filling in a load of my useful info on some app from my GP which has been replaced by the NhS app so that’s a waste of effort from me.

 

Apart from the asthma plan, none of them are medical care plans either. This is supposed to be for healthcare professionals in medical settings.

Nobody has time to look at this stuff, not even in primary care. For many patients, they have what they need in the summary record—age, sex, diagnoses, meds, recent issues—and the only way to improve that usefully would be to add equally brief notes about access and care needs.

The DWP approach to this is that unmet needs are still qualifying needs, which is quite helpful. A lot of pwME don't have care support, for instance, because they can just about scrape by without it. This ought to be captured somewhere; one small additional burden can completely change their landscape in a way that's currently invisible to everyone.

 

I'm not.
see

This is ME (Feb 2022)

Living with M.E. | Action for ME

 

Yes, but the afme thing seems to want to gather information that is not medical information as such and would theoretically be useful for the DWP (very useful in fact, because they could easily use the information against you - as discussed).

 

It is all happening in pockets. Every GP surgery uses one of a few different systems, trusts have their own overall systems and each department has its various systems that suit their care processes, there is THE summary care record which all can see but is very limited as you say, then there are entirely different softwares/apps that are designed to plug in to all of these for specific reasons e.g. with a RESPECT+ form for end of life care. But everybody wants to do their own thing.