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

It never ceases to amaze me
there is always post viral fatigue - the % seems to vary which may be to do with the nature of the virus, or a combination of virus and environment
there are always people who fail to fully recover - cue Victorian " invalids" to current day documentation - what may change, as was seen with SARS, is the % of people that this happens to -for new viral infections crossing species boundaries this may well be higher?

It's not rocket science by any means - it's incredible how many seemingly well educated people struggle to get their heads around this.
Are medics really this dim?

 

I agree. My concern is a LongCovid UK group, longcovidSOS, have as their strapline, Recognition, Research, Rehab. A few months back I tweeted the spokesperson for the need to be careful of a blanket call for rehab as some longcovid patients seemed to be showing similar PEM to what pwme experience. They said that the rehab they are calling for would take into account the post exertional problems and that GET is inappropriate. I still felt calling for rehab could be playing with fire.

I wonder whether they are still coming from the angle that they hope they can be rehabilitated back to full health and not ready to take on board that may not be possible. I know it is still early days and we don’t know whether longcovid will develop into a chronic condition v similar to ME but there are signs for a subgroup it could. I know some coming under the label longcovid could still be recovering from lung and heart damage and separate to those with longcovid showing some overlapping symptoms with ME.

I see on their website they wrote an open letter in July requesting the following, the word rehab is not used and they talk about receiving care, but the top of their website still has their recognition, research, rehab strapline:

“To summarise, we ask for the needs of these individuals to be addressed by

1. The establishment of a working group to investigate long-term Covid-19, headed up by a designated medical professional who will be responsible for implementing the following strategies:
2. The commissioning of urgent research into long-term Covid-19 disease in order to investigate its causes and identify a range of interventions to treat patients
3. The development of protocols and care pathways to ensure that all practitioners are empowered to treat long-term Covid-19 patients appropriately
4. The creation of multi-disciplinary clinics in all parts of the UK for the assessment, testing, diagnosis and care of long-term Covid-19 patients
5. Consideration of the economic implications, including making provision for long-term sick leave, financial support and taking steps to ensure employers are made fully aware of this situation“

https://www.longcovidsos.org/

 

In another thread (re the US Body Politic Long Covid Support Group):

https://www.s4me.info/threads/struc...gs-and-social-media.11138/page-79#post-293200

 

Chartered Society of Physiotherapy
@thecsp
Our reaction to today's announcement about the launch of 40 #LongCovid clinics in England.

Looks like another excuse to bid for more jobs for the girls.
Twitter seems to be a great propagator of advertising disguised in virtue signalling.

 

https://www.england.nhs.uk/2020/11/nhs-launches-40-long-covid-clinics-to-tackle-persistent-symptoms/

NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms
15 November 2020

Long term conditions

https://www.england.nhs.uk/2020/11/nhs-launches-40-long-covid-clinics-to-tackle-persistent-symptoms/

The NHS will launch a network of more than 40 ‘long COVID’ specialist clinics within weeks to help thousands of patients suffering debilitating effects of the virus months after being infected.

The clinics, due to start opening at the end of November, will bring together doctors, nurses, therapist and other NHS staff to physical and psychological assessments of those experiencing enduring symptoms.

The condition, which is thought to affect more than 60,000 people in the UK, can cause continuing fatigue, brain fog, breathlessness and pain.

NHS England has provided £10 million to fund the pioneering clinics, which will see patients who have been hospitalised, officially diagnosed after a test or reasonably believe they had COVID-19.

Ten sites have been earmarked for the Midlands, seven in the North East, six in the East of England, South West and South East respectively, five in London and three in the North West.

Patients will be able to access services through a GP referral or referral from other healthcare professional, allowing doctors an opportunity to rule out any other possible underlying causes for symptoms, such as suspected stroke, lung cancers or respiratory conditions.

The NHS has also launched a new taskforce, with patients, charities, researchers and clinicians, to help manage the NHS approach to ‘long COVID’ and produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition.

NHS Chief Executive Sir Simon Stevens said: “Long COVID is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands.

“That is why, while treating rising numbers of patients who are sick with the virus and many more who do not have it, the NHS is taking action to address those suffering ongoing health issues.

“These pioneering ‘long COVID’ clinics will help address the very real problems being faced by patients today while the taskforce will help the NHS develop a greater understanding of the lasting effects of coronavirus.”

A study from King’s College London found that older people, women and those with a greater number of different symptoms in the first week of their illness were more likely to develop long COVID with one in 10 still unable to shake off the side effects eight weeks after infection.

More recent evidence is also showing that long COVID can be categorised into four different syndromes: post intensive care syndrome, post viral fatigue syndrome, permanent organ damage and long term COVID syndrome.

 

A good start would be to produce something grammatical.

Is that more-recent evidence or more recent-evidence or is it maybe no real evidence at all?

If in doubt, blather, it seems.

 

So that's 25K per clinic.

Edited to correct:

So that's 250K per clinic.

 

?250K
£160 per patient. Which is about two clinic visits with one professional, or half a visit with a multidisciplinary team of 4.

 

They appear to be quoting from the NIHR Review:

https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

From BBC report:

https://www.bbc.co.uk/news/health-54540544

"Based on interviews with 14 members of a long-Covid support group on Facebook and the most recent published research, the review found recurring symptoms affecting everything from breathing, the brain, the heart and cardiovascular system to the kidneys, the gut, the liver and the skin.

These symptoms may be due to four different syndromes:

• permanent organ damage to the lungs and heart
• post-intensive-care syndrome
• post-viral fatigue syndrome
• continuing Covid-19 symptoms"

 

Whoops, missed out a nought. Will correct post above.

 

Indeed. I wonder how many of the 14 had each syndrome?
3, 4, 4 and 3?

 

Some of the more vocal professional Long Covid advocates were scathing about the

"These symptoms may be due to four different syndromes:

• permanent organ damage to the lungs and heart
• post-intensive-care syndrome
• post-viral fatigue syndrome
• continuing Covid-19 symptoms"

 

Once there is a Concept code for whatever they agree to term "Long Covid" available in SNOMED CT UK Edition, IAPT will be all over this "Long Term Condition" cohort.

 

The roll-out of low-budget clinics suggests the formula and conclusions have been set and there will be no learning, only doing. Roughly the model of CFS clinics. Rolling out even before any serious research has begun, starting from a conclusion. Not the conclusion, of course, a conclusion: it's boom time for the business of rehabilitation. Nobody can say rehabilitation from what, of course because it's assumed to be deconditioning, duh! Even though a very basic check would show this to be nonsense.

Over the months I have heard of many rehabilitation programs in many countries. No reports, no word out. Are they just merrily chugging along? No one is doing any research, just trying a bunch of stuff and hoping it sticks but everything's a personal journey? Do they even follow up on their patients once they complete the program?

Meanwhile acute care has produced several drugs and treatments, cut deaths and complications massively. It's a true learning experience that builds on itself. It's not perfect but it has delivered results, measurably.

What a massive contrast.

 

And why would they when they already know that their therapy can't cause any harm? [Sarcasm]

Seriously though, whatever "treatment" is on offer at the very least patients should be able to report adverse events and have them recorded properly. An adverse event being something meaningful like having to spend a week in bed recovering, or intolerable side effects from the meds offered or whatever. Not just being rushed into hospital.

 

https://twitter.com/user/status/1339685744097505282



Long COVID pathway

https://remedy.bnssgccg.nhs.uk/covid-19/long-covid/


Pretty bad. Links to BACME and the YourRecovery site.

Sadly, it looks like the worst case scenario of maximum incompetence. That makes for a rough start.

 

https://twitter.com/user/status/1340196831926640642

 

Long COVID patients to get help at more than 60 clinics

https://www.england.nhs.uk/2020/12/long-covid-patients-to-get-help-at-more-than-60-clinics/

With 69 + 12 on a £10M budget this gives roughly £123K per clinic. Which likely includes facilities. McFakeMedicine.

 

After the announcement of COVID clinics in Englas and Wales, Scotland's first minister was asked at her daily briefings why Scotland had not set up similar.

Her response was that as this was a new disease, research was initially needed to discover what would be effective before instigating treatment.

I don't know if things have changed since given the overwhelming BPS push to claim it as their own .

 

Excellent article on Long Covid. It has information, examples and quotes from both the UK and the US.

One UK doctor mentioned in the article is really unimpressed with the NHS roll-out of Long-Covid Clinics.

Title : The many strange long-term symptoms of Covid-19, explained

Link : https://www.vox.com/22166236/long-term-side-effects-covid-19-symptoms-heart-fatigue