UK: University College London hospitals (NHS)

The nice guidance includes a template care and support plan. I started a poll to see if anyone had got one filled in. They hadn’t.

 

This is what we are doing now - waiting for their "plan" and expecting to have to push hard for evidence (precisely because all they have provided so far is waffle). The person with ME (not me, a family member) has their own very clear and strong plan however, which is why we are demanding a NICE-informed plan to be drafted. NICE is crystal clear that the pwME must be in charge of their own treatment plan, which hasn't been the case thus far. They have a moral and legal responsibility (duty of care after all), but holding them to account is really a challenge.

Yes, they have no legal right, but unfortunately schools and other authorities (council etc) usually require medical evidence, and in any case place great weight on it. We will of course fight, and they really don't have any evidence to back them up (because there is none), but it becomes a massive struggle which consumes everyone's energy...which is in short supply.

 

Do you have a link to that template online? We only managed to find the BACME assessment document.

 

You need the “baseline assessment tool” and the third tab from left “data sheet”
https://www.nice.org.uk/guidance/ng206/resources/baseline-assessment-tool-excel-9265185613

 

Thanks. That isn't actually a template for a plan though, it's basically an assessment of how diagnosis and care has (or hasn't) been provided in line with the NICE guidelines. Useful to show how woefully poor care has been, but not to actually help create an effective, personalised, patient-led plan.

Surprisingly, this BACME document seems quite decent to me: https://bacme.info/wp-content/uploads/2022/12/BACME-Care-and-Support-Plan-Guidance-Dec22.pdf

Any suggestions of how it can be improved would be most appreciated, so we can push TRACCS to start following the NICE guidelines.

It is more than a little ironic that the chair of BACME is the Clinical Lead for TRACCS, but somehow the service can't manage to follow either NICE or even BACME recommendations.

 

I have heard of families being threatened with social serices if they don't do xyz. One example was a teen spending too much time on their phone!

Back in 2011, when we were at GOSH, which moved to or combined with UCLH, Anna Gregorowski, told us that screen time should not be more than an hour a day. This includes all tech, TV, gaming and phone. This was patently ridiculous for a teen, who is too ill to attend school or meet with friends etc.

When I asked at the next appt for literature references, she said there weren't any, and that the recommendation was mainly for boys who spent endless hours gaming.
This is separate from not using tech for an hour or so before bed, due to the ?blue light.

Then at a workshop in 2017, I moved to the table that included Anna G and a nurse (I think), from Bath. They were talking about screen time and at that point UCLH recommended a max of 4 hours daily and Bath 3, "because they needed time to do their schoolwork. (Could have been Bath 4 and UCLH 3)

"It is more than a little ironic that the chair of BACME is the Clinical Lead for TRACCS, but somehow the service can't manage to follow either NICE or even BACME recommendations."

It is VERY ironic and BACME seem to still be convincing the charities that they are wonderful!!

 

@Old Monkey are you on the Facebook Group: Parents of children with ME/CFS support Group?
https://www.facebook.com/groups/295809457153118

There are many stories on there re UCLH, Bath and others.

TYMES also has a great deal of experience of defending children from being pushed to do more school than they can. They are very busy, but may have useful references.

Good Luck

 

Also https://www.ipsea.org.uk/ is a great source of advice on statutory rights for young people with medical issues.

 

Thanks for all that info @MEMarge. I usually stay away from FB but will have a look at this.

What boggles the mind me is how BACME is supposed to be training/guiding ME care providers in "best practice" but cannot even be bothered to follow either NICE or their own guidance. Is there no independent body to whom we can report all this? The official complaints process seems largely useless (though we will try). I wonder if public protest would attract attention from the higher-ups.

We will need luck, but I fully intend to hold them accountable for their nonsense, and will not let them gaslight or bully my child.

 

almost everyone who can do any marching has been told and believes, somewhere in between where it comes to actually doing it and they think of the catches and what they might be doing instead, that we could really if we were that bothered - and after all, they think we don't have much on compared to them (two fallacies that couldn't be further from the truth )

 

Sounds also like you mightn't fancy putting either (what they actually want to do, or what they should be doing) down in writing.

The resource question then comes in about whether what is 100% vs 'this is all we can offer' has to be considered, but obviously that will become easier once they've done a few because whilst they should be individual they will have asked the questions and got a sense of what is available.

I thought a lot of what is in a plan isn't necessarily for the eg hospital or HCP to do themselves, but 'how' instructions too (ie to make people aware of not just going in and waking people up and banging round then causing exertion etc)?

 

So - Someone I spoke to on another forum said to find a specialist consultant at the Royal London, but reading above leaves me feeling quite vulnerable.
I'm looking for a thread advising recommended consultants or specialists in and around London that ARE good for ME/CFS. Is there any thread where people reflect on having found a good consultant that they are happy with, who doesn't specialise in acupuncture, herbal remedies, hypnotism, other psychology or rain dancing please?

 

What are you hoping for @SteveFifield ?
There isn't much physicians can offer.
All the reasonably sensible ones who had ME/CFS practices I know in London have fairly recently retired from them.

 

Has anyone had any experience of Dr Melissa Sargaison at UCLH?

 

The UCLH RLHIM fatigue service provides non-pharmaceutical and holistic therapy. I’m not sure why this isn’t advertised, but you can call the administrative team and ask about their service or ask your GP to request the clinics service policy. IMO you may as well see someone specialising in rain dancing.