Yesterday Matt Hancock, Secretary of State for Health and Social Care said:

"The NHS set up Long Covid clinics and announced them in July and I'm concerned by reports this morning from the Royal College of GPs that not all GPs know how to ensure people can get into those services."[1]

Many patients are having to find out about Long Covid clinics through word of mouth or their own research, as Barbara Melville explains:

"I admin the Long Covid Support Group on Facebook, which has over 20, 000 members. We're hearing of 'Covid Clinics', but we still don't know where they are, how we access them, or what support we can expect. I learned of Edinburgh’s Covid service on Facebook, when a friend photographed a poster on a GP surgery door – the absolute last place I would have gone.

But it wasn’t plain sailing once I knew. I managed to access physio, but it is still light, and mostly phone based. One friend, who was hospitalised, was sent leaflets through the post – he had to push hard for physio. Neither of us were able to access investigations to determine if exercise is really safe, which is worrying given emerging evidence of multi-system complications."

Where is the list of these clinics?

Has it been widely shared with GPs and patients so those suffering symptoms of Covid-19 months later can access help? 

How many clinics are able to help patients access clinical investigations as well as rehabilitation?

What about those who did not get a positive test result? Or were not hospitalised? Are they able to access these services? 

Do you know of a central list or of services near you? Please comment below to #share4safety.

Nb: You'll need to sign in to the hub to comment (click on the icon in the top right of your screen). If you're not a member yet, you can sign up here for free. 

Reference 1. Matt Hancock, 8 September 2020, Health and Social Care Select Committee (00:01:35 of attached video). 

On Thursday 17th September I participated in a zoom meeting with Aaron Cummins, Chief Exec University Hospitals Morecambe Bay. He confirmed that there are no plans to commission one of these clinics in the Lancaster/Morecambe Bay Area. I was informed that patients should contact their gp who would direct them to existing services where they deemed it necessary to do so.

Thank you @Natalie SullivanI wonder what those existing services are? 
 

thank you @Dawn Knight Would you kindly update us if you get a response? 
 

 

Edited 24 September, 20205 yr by HelenH

@Sally A and others on longcovid support groups are highlighting that they are paying privately to access services as they are not getting referred from the NHS for the support they need. 
 

Are there others who have chosen to do this? Surely access to much needed services shouldn’t be dependent on the ability to pay for them? 

I live in Letchworth, North Hertfordshire. GP has referred me to post Covid-19 rehabilitation process. It seems to be run by Hertfordshire Community NHS Trust.

I've had two video pulmonary physio appointments so far. Received audio breathing exercises and video on exercise to follow along. Follow up appointments every 2 weeks.

I also had a video call with a Covid GP as info gathering. 
I've got a face to face on 8 October.

Emails come from COVID-19 Multidisciplinary Rehabilitation Workforce

Hope this helps.

Thanks Andrea. Very helpful. 
We’ll follow up with  COVID-19 Multidisciplinary Rehabilitation Workforce

Not come across them before

UCLH- very dismissive and pushing physio and long waiting times to be triaged between teams.

Imperial community cardiology and respiratory clinic have a covid clinic - but you need to be hospitalised.

Hi Kelly, sorry to hear that the ‘you must have been hospitalised’ restrictions are in place 

Hello, my GP told me last month that she had become aware a multidisciplinary post covid was going to open at Homerton hospital in Hackney, London. However today the GP said she's not heard any updates and not sure when/if it will open. 

There is one at UCLH as others have said and access is via their respiratory team. I've had two referrals refused so have not had the opportunity to be seen there. 

https://questions-statements.parliament.uk/written-questions/detail/2020-09-09/87501

 

 

 

On 24/09/2020 at 08:18, HelenH said:

Thank you @Natalie SullivanI wonder what those existing services are? 
 

thank you @Dawn Knight Would you kindly update us if you get a response? 
 

 

I was advised by my GP practice on the 15th October that I have been referred to a Post Covid Rehab pathway. Noone has been in touch yet, but when they do, I'll update you as to what that means...

Hi. Has any progress been made with regards to locating clinics? Has Simon Stevens responded to the letter from PSL? It seems to be the case that same CCG's are choosing to set up clinics whereas some are referring patients to existing rehabilitation programs, usually within pulmonary/respiratory services. I expect the guidance criteria given to GP's as to which patients meet the local threshold for eligibility will also vary from one CCG to the next.  This will be due to individual CCG's having the say as to what services are commissioned regionally, but is there any national guidelines as to what services should be offered and how patients are referred?

Hi @Natalie Sullivan Thanks for the question. There’s progress. Simon Stevens replied and following his announcement that outlined his 5 point action plan. NHSEI have since issued guidance to CCGs and NICE have issued their scope for guidance they’re developing. It’s progress but the clinics aren’t up and running - they’ve set a deadline of end November. These should be developed in light of the national guidelines. We’ve included all these resources on the hub (see links below). I’ve been asked to join the longcovid task force so will be able to update on the hub.

Hope that helps. Do come back with comments/questions. Helen 

National guidance for post-COVID syndrome assessment clinics (6 November 2020)

Your COVID Recovery guidance (6 November 2020)

Hi Helen. Thanks for your response. I had actually read that and completely forgotten that I had. Thanks for reminding me ! I'm also working on trying to better navigate the hub. With regard to point 3 below, I presume that the service offered will be determined by individual CCG's. So for example, in some areas, the service is being provided by the pulmonary rehab team. Whilst very welcome, I would presume that a respiratory nurse will not assess for all of the following or is the plan that they will be trained to do so ?

3. Designated Long Covid clinics, as announced today. This will involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-Covid services will provide joined up care for physical and mental health, with patients having access to:

– A physical assessment, which will include diagnostic testing, to identify any potential chronic health issues.

– A cognitive assessment, to assess any potential memory, attention, and concentration problems.

– A psychological assessment, to see if someone is suffering potentially from depression, anxiety, PTSD, or another mental health condition.

Patients could also then be referred from designated clinics into specialist lung disease services, sleep clinics, cardiac services, rehabilitation services, or signposted into IAPT and other mental health services

It seems nothing is available in Cumbria. I became ill in March, quite severe but manage to stay out of hospital. I have been unwell ever since, able to do very little, which is extremely hard as I am on my own, close relatives 300 miles away.

My GP is sympathetic but has no answers. I have to phone at 8.30 am to book a phone call from her.
people need urgent physical and mental help. What chance is there for people in rural areas? 

 

Hi Guest S L,

Thank you for adding your comment. A recent NHS press release said: 

"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."

It is important that people with Long COVID can access the relevant services, regardless of where they live. At Patient Safety Learning, we have called on the NHS to provide more clarity on the clinics including specific locations. We have also recommended they set out plans to address regional disparities, should there be any, to avoid a post-code lottery of access (you can read our blog below).

Clear NHS plan needed to reassure Long COVID patients 

If you would like to discuss your concerns further, please do get in touch via [email protected]