UK Long Covid Clinics

Dolphin

Dolphin

Senior Member (Voting Rights)
This post has been copied and responses about the Nuffield program moved from the Paul Garner thread.

 
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The Herald article alt text says: "A private healthcare group is offering Long Covid patients free rehabiliatory support after a pilot led to positive results."

Concerningly, Nuffield Health do seem to be aiming this specifically at those with Long Covid, and not just for post-hospital rehab.
They even mention PEM in this video:

Here are more details about the service evaluation: https://www.isrctn.com/ISRCTN14707226

At least the exclusion criteria include "diagnosis of chronic fatigue syndrome", but I doubt they are actively excluding people on that basis if they mention PEM as one of the symptoms that may be present in those they are trying to treat. :(
 
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Post copied from the Long Covid in the media thread

New service launched to help Wigan patients suffering from long Covid
Expert health professionals are joining forces to launch a new service for help Wigan patients recover from the lasting effects of coronavirus.

Greater Manchester Mental Health NHS Foundation Trust (GMMH) has created the Post-Covid Syndrome Service (PCSS) for people suffering from long Covid.

It brings together a multi-disciplinary team to help people improve their physical and psychological well-being, as well as daily functioning.
Dr Dale Huey, consultant clinical psychologist and strategic lead for primary care psychological therapies at GMMH, said: “Post-Covid syndrome, sometimes referred to as long Covid, describes signs or symptoms that have persisted beyond 12 weeks after an infection consistent with Covid-19, where no alternative explanation has been found.

Service user Rifkah Cohen said: “Covid-19 has left me with longer lasting symptoms including brain fog, breathlessness, migraines and severe fatigue. The more I try to push through the exhaustion, the more I crash and the less I achieve. It's not surprising that I get frustrated, anxious and sad at times.

“Hearing about the new post-Covid syndrome service gave me hope. I think it's really important to be proactive in managing your physical health, but it can be really tiring when living with the effects of Covid-19.

“I signed up for support because it's refreshing to be able to take time for myself, to work with a therapist, taking stock and thinking about what I need to do next to support myself. I’m really looking forward to working on my recovery with the service.”
My Bolding

A few seconds on google searching for "Service user" Rifkah Cohen brings up

Linkedin
Rifkah Cohen
IAPT High Intensity Therapist (CBT) at Greater Manchester Mental Health NHS Foundation Trust
Manchester Area, United Kingdom

So their "Service user" is actually an employee of the very organisation advertising this service.
Very dishonest.

https://www.wigantoday.net/health/n...an-patients-suffering-from-long-covid-3718723


ETA: I've emailed the reporter pointing this out and asking her to contact them to explain their behaviour.

 
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They literally don't want any feedback, don't want to hear from patients, don't want to know anything that doesn't conform with what they're taught. After getting some criticism, from either form or substance, they simply locked comments. Ivory tower mutual admiration societies limited only to what happens in the towers.

When people making decisions from others are immune from the outcomes they create, well, this is why things are so broken in healthcare.

This is what I mean sometimes by supply-side medicine: by physicians, for physicians (and psychologists, somehow).

 
Moved post
Milo said:
i do not hold hope that this trial will make any difference. But we all know that research money is being thrown at Long Covid.
Click to expand...

On Twitter, an offer not to be refused- ????? for the private sector rehabilitation services...!

htI have been made aware of a #LongCovid exercise programme at @lifeleisureUKwhere@NHSStockportCCG patients are being sent.

My contact was not screened for #PESE. The programme progresses from chair yoga to- wait for this- HIIT

https://lifeleisure.net/health-wellbeing/long-covid/ 1/ntps://www.lifeleisure.net/health-wellbeing/long-covid/

AND....
As part of our Long COVID service, we are working alongside the Stockport NHS Foundation Trust to deliver a new programme called “Golf on Referral”.
This is a 12 week programme that consists of two sessions a week, split into one PARiS led exercise and educational session for up to an hour, as well as up to an hour’s Golf session.
The exercise will be low intensity, alongside nutritional and mental well-being advice and the Golf will consist of learning and participating in the basics of the sport, with the first four weeks of Golf at one of our Life Leisure sites and the remaining duration of the programme at Hazel Grove Golf Club.

And, below the following 'evidence based" green shiny poster.....
 

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Suffolkres said:
As part of our Long COVID service, we are working alongside the Stockport NHS Foundation Trust to deliver a new programme called “Golf on Referral”.
Click to expand...
It's quite a clever development. If the government doesn't have enough money to fund all three of health, the arts, and sport, then just combine them.

Fund the opera to do breathing training, and the golf courses to deliver, well, whatever golf is supposed to do for Long Covid. Every dollar can be double-counted! It's no worse than GET and CBT as far as the patient is concerned, and at least the money goes partly to deserving causes. Less money for the Phil Parkers of the world, more money for green upkeep.
 
Suffolkres said:
As part of our Long COVID service, we are working alongside the Stockport NHS Foundation Trust to deliver a new programme called “Golf on Referral”.
Click to expand...
This has genuinely, and seriously, reached the level of Homeopathic A&E. It's beyond parody because good parody is self-aware and smart.

"Patient is suffering from cardiac symptoms, advise at least a 7-hole course, followed by lunch, of no less than 1h, with friends afterwards. Next patient!"
 
Merged
NHS Cheshire and Merseyside said the hubs, which were set up at the height of the pandemic in 2020, were no longer viable financially, external and demand for the service was falling.

Cheshire and Merseyside Integrated Care Board (CMICB) has advised patients in the area to access other services while a review is carried out.

However, the service users said that was not realistic as they need access to many different specialist treatments.

In September 2021, Barbara Cunningham caught Covid.

She said life had never been the same since.

"It impacts every single part of your life," she said.

"The sleeping, pain, being able to walk, being able to talk, being able to eat, swallow."

The 53-year-old is one of an estimated 1.9 million people in England with long Covid, a complex condition with wide-ranging symptoms from breathlessness and muscle pain to brain fog and extreme fatigue.

She had to give up her job as an NHS administrator and said she struggles with any physical activity and gets headaches looking at screens and books.

"Some days you just sit in a corner looking at all of the things you used to do and feeling like you've lost all of that and not knowing whether you'll ever get any of that back," she said.
Click to expand...
Long Covid patients 'feel abandoned' by support service closure - BBC News
 
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NHS Cheshire and Merseyside is asking for people’s views as part of a review of long COVID support.

Hub-based services for those experiencing longer-lasting effects from COVID-19 were put in place during 2020, with access via GPs, but the number of people using them has fallen significantly over the last 12 months. Hub arrangements will now end, as the NHS looks at the best way to provide this care in the future.

Dr Fiona Lemmens, a local GP and Deputy Medical Director at NHS Cheshire and Merseyside, said:

Information:
“For most people, COVID-19 symptoms will last a few days or weeks, but we know that some will experience them for longer than this, and might need additional support.

“Long COVID hubs were set up early on in the pandemic, and it’s right that we review this care, to make sure that we’re supporting people in the most appropriate way, and using NHS resources as effectively as possible. Long COVID covers a range of different symptoms, and one of the things we need to explore is whether there are opportunities to integrate this care with existing services for people with similar conditions. 

“To help us do this review, we’re engaging with patients and the public to understand more about people’s experiences, and the support they require. We’ll use this feedback to help develop plans for how we might arrange services in the future. It’s important to stress that anyone who needs help with their long COVID symptoms – whether on an ongoing basis or as a new patient – will continue to be able to access care.”
Click to expand...
People asked for views on long COVID services - NHS Cheshire and Merseyside
 
Merged thread

Weymouth teen to travel 300 miles for long Covid treatment

Living with long Covid for four years has been "horrible", a teenager has said.

Molly, who lives in Weymouth, is now 16 and said she rarely goes out. When she does she needs the help of a wheelchair as she gets tired easily.

Without dedicated NHS support in Dorset, she is planning to travel to Liverpool to attend a private clinic.

She said she has "two good days a week, maybe three, and the rest I am shut away".

Molly said the condition had made her feel "closed off from friends, from school, from anything".

"It affects me every day, anything I do," she continued.

"It's symptoms from really severe fatigue to heart palpitations, fainting, I've had seizures and allergic reactions.

"It's just communications from the brain through the nervous system not functioning properly, sending the wrong signals, which makes it really uncomfortable for people like us to live with it."

In November 2023, the Dorset Post Covid Syndrome Service - a long Covid clinic where Molly was receiving care - stopped its service for paediatric patients, only taking adults.

Children and young people were instead passed to a service for chronic fatigue.

But Molly said it was not equipped to deal with the complexities of long Covid and left her without specialist care.
Click to expand...

Weymouth teen to travel 300 miles for long Covid treatment - BBC News

no idea what 'treatment' she'll get at this 'private clinic' she's going to(?)
Also again this misuse of 'chronic fatigue' doesn't help. I don't imagine the NHS service is 'equipped to deal with the complexities of ...ME either'.
 
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