UK - NHS England online tool and clinics for long Covid.

Again, going pretty much as we'd expect.

https://twitter.com/user/status/1398929435676614665

 

A patient group has conducted a survey of the LC clinics. Without surprise, they are a disaster. May as well be comments from any chronically ill population about medical care in general, just complete and total failure to even address the problem.

Has some data and many quotes, which are especially reflective of the experience of ME patients with the "fatigue" clinics".

This is UK only, showing some clinics are minimally competent, others fail completely, none seem to be fit for purpose, the best they do is investigate other problems, which while important is something that should be part of standard care already.

https://www.longcovid.org/impact/long-covid-assessment-services-patient-survey

 

Sometimes I think about the money that is being wasted on these clinics that could have been spent on other things to help us.

I am also a long covid patient (14 months). I don't know how much has been spent per patient; I have not sought referral to a "clinic" for obvious reasons - especially as one of my symptoms has been severe PEM/ ME/CFS relapse. (I'd rather they had just given me £5 or whatever my share is of resources!) I feel for these patients as they got sick and expect there to be treatment. My experience with ME/CFS has prepared me for the idea that you can be extremely ill - too ill to work or socialize or take care of yourself in the home - not have much by way of medical help (or belief). It takes a while for people to understand that this can happen, so I don't really blame them. It's a difficult thing to accept and come to terms with. Honesty is the best approach; they have likely not been told that not much can be done, and are left chasing this elusive "clinic" experience, where they have been led to believe help will be at hand.

The app seems insulting. I am very concerned by the idea that this is a model that is going to be promoted internationally.

 

The whole thread is .

https://twitter.com/user/status/1401942791064850435

 

I'm not sure if this has been posted elsewhere:

Long COVID:the NHS plan for 2021/22

It reads more like propaganda or a political advertisement. Had I drafted something like this in my public service career, I would have been soundly chastised.

Amid all the waffle and nonsense, this stood out:

UK long haulers are going to need a lot of luck.

 

I've seen this referred to as a comprehensive plan and frankly it seems like no plan at all, just a bunch of corporate feel-good outcomes with no actual substance on how to achieve them, as if just voicing those outcomes will make them happen and holy crap these people actually believe in The Secret's Law of universal attraction don't they?

 

If this hasn't been posted elsewhere:

https://www.england.nhs.uk/2021/06/...ces-in-100-million-long-covid-care-expansion/

NHS sets up specialist young people’s services in £100 million long COVID care expansion

15 June 2021

 

Regarding Long Covid care for children are parents going to have their children taken away if the kids don't get better? Or if the child refuses to follow instructions? Or if parents refuse to allow their child to do the treatment suggested because it has already made them worse?

Will children end up in psychiatric hospitals, doped up to the eyeballs on psychiatric drugs to give them all sorts of long-term life-altering side effects? I really don't believe that the UK government or the therapists who deal with ME/CFS will be able to resist poking their fingers into this new, enormous pie that could keep the therapists and doctors in employment for another 40 years.

 

>>>“Long COVID rehabilitation consists of a twice weekly, six-week programme of exercise and education which includes both strength and aerobic exercises. Topics discussed as part of the education are based on the information provided on the Your COVID Recovery website. The programme is delivered by the multidisciplinary team and tailored to individuals as community and hospital cases often present differently.” Leicester Long COVID Service

Is this just an example of a programme or is this something that is the standard of care and to be implemented everywhere? Or it just what is happening in Leicester? It is not that clear from this pamphlet.

Is it possible to do anything about this? It is genuinely horrifying.

 

Seeing other comments dissecting this and it appears even worse when you parse the language, this is full BPS, built entirely on the garbage research in ME but without even mentioning it, which is extremely dishonest. This is a political document, nothing to do with public health or medicine.

Duty of care? Duty of candor? Those words mean absolutely nothing, just cheap slogans worn as a blankie.

 

Does anyone know how this document came to be, and who authored it/in what kind of a role? It's frankly scary to read it as someone with LC in the UK, even though I know the history.

 

Gasp. The wait time for the local ME program is about 30 months. Meanwhile, 4 Long-Covid clinics have opened, patients so far get seen at 3 and 6 months (likely at 9 months too), on top of the education program and referrals to specialists

 

Sorry but what is the "education" program? Since when did "exercise" and "education" treat long covid?

 

Ariel, Long-Covid unfortunately do not have any approved treatment. The clinics that have opened in western Canada seem to focus on learning more about Long-Covid by using the clinics to recruit patients on their longitudinal study. The education part from what I know refer to the BPS stuff- how to cope, how to pace, how to deal with depression and anxiety etc.

I am not sure you asked me the question or whether you replied to someone else...

 

Was really an overall comment in reference to the NHS document shared earlier which outlines "exercise" and "education" as cornerstones of long covid "rehabilitation". I am concerned by the uncritical and apparent total acceptance of this framework. I am sorry to hear that this is also happening in Canada.

 

The 'education' part is learning that 'exercise' makes things worse, never going back, and therefore being put down on the records as 'cured'.

It is truly a wonderful system, unless you're a patient.

 

I doubt any such clinic keeps any record on any of those data, at least not in a useful way. I assume this will be similar to the "fatigue" clinics, with every clinic basically doing whatever they feel like doing.

But it's good to see activism from long haulers that goes beyond simply hoping health care will suddenly do a 180 and being nice about it.

https://twitter.com/user/status/1412096866557304834