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Long Covid: Where are these clinics?

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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). 

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In Edinburgh there is only the Post Covid Hub - a phone line run by pulmonary physios - who give general breathing and exercise advice. Both my GP and my rheumatologist have told me last week that there are no Covid Clinics in the Lothian area for either clinical investigation or rehabilitation.

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@ElspethJ that doesn't sound like it offered what you needed? What services would you like to see available for people with Long Covid, particularly those who haven't been hospitalised? Did your GP give any indication that anything else was in the pipeline?

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I have not been informed of any clinics of this nature in South Lanarkshire or the surrounding areas. Infact, my GP told me on Monday to ‘goggle’ and look at Long Covid UK sites and support groups for information as she was learning herself about Long Covid and how to treat this! My GP has been great so far but it feels like she is at a loss of what to do. Clinics of this nature would be so helpful. 

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No it certainly isn't. I would like to see clinics for everyone with long term post Covid symptoms where we could be fully assessed; given appropriate testing and access to whatever specialists were necessary. This would be followed up with individual rehabilitation programmes. These clinics would not be restricted to those who had been hospitalised and/or had a positive PCR test.

Last week my GP indicated that NHS Lothian would be providing something along these lines but in his opinion this would not be available any time soon. 

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Yes I agree, clinics must not be restricted to those hospitalised or with a positive test. There’s so many of us that don’t fit this criteria yet are suffering on a daily basis. 

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Well... I worked with Ministers on this and raised it at registration with the APPG but was excluded from the APPG, despite sending in many documents and an email to Layla Moran MP. I was told I would be contacted by her secretary and wasn't. I nevertheless sent a 10,400 signature petition asking that post covid clinics be set up at all major hospitals immediately and proposed that they be done like at Ipswich hospital on a weekend so not to impact the existing outpatient backlog.  Both Sir Simon Stevens at NHS England and Matt Hancock in public said they had set up clinics, the new app and so I wrote to the  NHS about it, 2 months ago...

When I wrote to  NHS England Sir Simon Stevens Office they were really helpful in directing us to these clinics where I was told both in writing and verbally that they would admit untested and tested patients. I had lengthy discussions with Sir Simon Stevens office and we were given contact phone numbers to enquire:

- The first time I called the number said it wasn't recognised. I called several more times since June. In fact 18 times over two months. I stopped calling 5 weeks ago.

- I asked an independent , reliable , unsick person to call on my behalf, Kevin Algar, our independent analyst in our group and to make a video of himself calling. He called and theres a video on you tube...

- I also rang the number and then contacted the NHS office of Sir Simon Stevens again who gave me a second number when I told them the first number advertised on the CCG site doesnt work. I videoed it.

- I was given a second phone number and so I called that, and guess what, the number said it didnt work, then after i kept calling it would ring off, then eventually someone picked it up. All on video also because by now I was being led, whilst sick, on a wild goose chase across the Surrey Downs. 

- I was lied to by the NHS and Sir Simon Stevens Office that untested patients could get access so such clinics, I knew it already as I had called and enquired and could not find any other clinics either. 

- I was told you have to live in Surrey, you have to be registered with a GP despite the office telling me otherwise that it was a national center, would accept both untested and tested...blah blah.I knew this because if you read the site it's a hosptial ward and you have to be hospitalized and therefore, would have been tested as that was NHS policy.

- I was also told by email that you needed to be in an acute care setting, have a plan for you drawn up by professionals with a ceiling. I was basically told Bovine Excreta.

- I informed Matt Hancock and I wrote a complaint to Sir Simon Stevens Office. I didnt hear back. I became apparent to me 8 weeks ago that there would appear to be, at least, a deliberate policy in place not to treat us, the untestables, to lead us on a merry go round, or a wild goose chase across the Surrey Downs as I like to refer to it. Patients cant get GP referrals, when they do and demand referrals for consultants the appointments get cancelled. I've got it all documented. But the APPG group were not interested, preferring to have only positive tested patients there and not to represent the much larger untestable group. When I reached out to the other large group to gather forces together to tackle this, my messages were ignored.  So, I tried my best to deal with it. 

- Shortly after I flagged all this up with Matt Hancock PHE was disbanded. In fact, the very next day. it would appear what the Gov say is not being done by the NHS. But I wouldn't dare to blame our NHS because that might inflame a certain group who have berated me for getting access to Ministers you see. I said all along not to turn this into a political issue but sadly it has been, likewise, I tried to garner people across groups to prevent a 'haves' and 'have nots' with regard to testing happening and sure enough it did. Only positive tested patients appeared on BBC breakfast the ones who could be followed by clinics.. like the Seacole? meanwhile the other many thousands which is a much larger group cannot get any help. I was remonstrated in public that I might be doing more harm than good, but in actual fact I was trying to get us access to Ministers as they are the people that matter in such a pandemic. I said it had to remain apolitical issue, but others turned it into one, sadly.

The untestables have now changed their name sadly to the 'forgotten victims of covid 19' because I realised weeks ago we were not going to get any help and I was right. 

- I suggest you write to BBC Radio Suffolk and BBC Look East as they seem to be in the know how. They invited Nick Hulme, Chief Executive of the Essex and Suffolk NHS Trust on and he talked about his long tail clinic... to treat ptsd as were all having mass hysteria and anxiety apparently... They also subsequently put up a clip of Dr Jake Suet from the APPG (probably without his permission I suspect) after I had told them he didnt want to participate (after I had asked him), they then had me on and gave out the other covid group name... you see this is what happens when people turn sickness into political issues... and it didnt come from within our group. Just to be clear. 

I gave up writing letters, doing newspaper articles weeks back. I suggest you write to Sir Simon Stevens Office (I wrote 10 letters to Gov/Advisors/NHS) and ask him where these clinics are, why GPs dont know. these clinics, perhaps they're in the surrey downs under a chicken coop....but I've a pretty good idea....

- I also suggest you write to Layla Moran and ask why the only Covid group to have had Ministerial meetings and a lot of correspondence with the NHS and others was not invited to participate despite us protesting whilst it was being live streamed. I was emailed and told we would be but never were. There we go... now people come to me asking what Matt Hancock is doing, rather like the BBC... funnily enough

Over and out.

 

Has phased 2 of the covid recovery app been launched yet? Someone tells me it has but i dont see it...

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@Aileen I agree with you, it doesn't seem that GPs are getting the information or support they need. By starting this thread we thought that we'd be highlighting where the clinics were. Seems to be more that we're hearing that there aren't clinics being set up and a general confusion as to who is responsible and what action is being taken. We most definitely will use this insight to write to DHSC, NHSE etc

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@ElspethJ Many thanks. The framework looks really good and we'll add to the hub.

There's no mention of an implementation plan with timeline, resources, patient communication and engagement etc. 

They conclude in their framework :

11. Key First Steps

This Framework has been developed to enable organisations to support their planning for recovery and rehabilitation services following the Covid-19 pandemic. We know that there is excellent practice already in place and it is essential to share and build on this across the whole system.

A National Advisory Board for Rehabilitation, which will also address the public health aspect of early intervention for prevention will be formed to provide expert advice to the Scottish Government and support leadership in NHS Boards and Integration Authorities.

The Scottish Government has appointed a Professional Advisor for Allied Health Professions who will take a leadership and advisory role and will oversee the deployment of the plan across Scotland, feeding back to Ministers and policy colleagues on its implementation.

It is anticipated that this work will closely align to existing rehabilitation pathways and strategies and a Once for Scotland Approach will be developed and provide a practical, accessible strategy to deliver quality rehabilitation to everyone who needs it.

 

@Patient Safety Learning Let's add the Scottish framework to the hub and ask on social media (twitter and LinkedIn) what the timescale is for implementation 

 

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@Goingviral Thank you so much for your post. That's a sorry tale indeed, all rather confusing and clearly evidences that one of the reasons that the clinics are difficult  to find, is that they're just not there!

We will take up your suggestion and I will write to Sir Simon Stevens today. Do you have a contact in his office that we can follow up with?

@Stephanie O'Donohue Let's look at the other helpful contacts suggested and follow up. Talk tomorrow?

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@Goingviral And re Phase 2 of th portal, we've not heard anything. I was talking with colleagues about that yesterday. We're meeting up with Professor Trish Greenhalgh tomorrow and were going to ask whether she knows any more.

@Mark Hughes Let's include in the letter too.

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@HelenH, @Stephanie O'Donohue and others.....

Helen can you email me @xxx  ill give you my phone number....Ive a few things to share there.

 

 

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We need post covid clinics that were promised to us in July by the government.

I had COVID-19 in March/April and 6 months later I am still experiencing many debilitating symptoms and am currently off sick from work. My GP has been trying to help me but she does not know where to turn to get me help. We need post covid clinics as promised by the government in July. We need these clinics to help people like me (and there are thousands of us), who have ended up with debilitating Long Covid.

 
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@Raeven thank you for giving your insight. As you have highlighted, there are thousands of patients, who like you, are suffering chronic symptoms. Greater clarity around access to post-COVID support is really needed. 

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Below are some more comments that have been shared with us by patients (with their permission) from a Facebook COVID research group. Some wished to remain anonymous. 

"Asked GP in Southampton...she has been supportive....knew of none." Anon. 


"I tried mid-August to pull together a list by asking the Long Covid support group and literally got only 1 answer. I was trying to get my MP to follow up on it.  it seems unfathomable to me that this doesn't exist already. FWIW, I asked my GP here in Bristol and he was unaware of any. I asked him to look at Southmead Hospital (have research underway) but there is nothing." Michelle Gates. 

"I have e-mailed a question re Covid Clinics (and where are they where I live) to my NHS Trust for their board of directors meeting and was told the question would be asked. I am waiting for a transcript/minutes of the meeting to see if the question was raised?" Anon. 

"This (the list) would be so helpful. My GP in the north east had never heard of any!" Anon.

"No clinics in Durham." Tracey Birch.

"I asked my GP a few weeks ago to refer me to such a clinic but she looked into it and said there was nothing for Bexley (just outside London) patients to be referred to." Karen Corbett-Smith.

"My GP looked into the post-Covid clinic at Adenbrookes in Cambridge and confirmed rumours that I’d heard that it is only for previously hospitalised and I think also ventilated patients. There seems to be nothing available in the county and precious little in the East of England. Apparently there’s a clinic in Stevenage (Herts) - somebody I chatted to has a phone appointment with them next week. Thanks for looking into this- so many promises, so little follow-through." Annette Shelford.

"I’m in East Berkshire and when I asked my GP a few weeks ago if there are any post Covid clinics in our area he said there is nothing he is aware of, that he’d ask around and get back to me if he found anything, but nothing." Anon. 

"I asked my gp multiple times and there is no covid hub in Bristol, despite Bristol-led long covid research study (that focus on hospitalised patients only) and other covid research. I did get sent to the respiratory hot clinic where the consultant  was very knowledgeable outside of discipline eg we discussed blood clotting, heart and nervous system effects. I Have separate referrals to ENT. Cardiology-Echocardiogram. I Will get a lung CT scan, but it would make sense if they looked at multiple organs, but because it was ordered by the respiratory team they will only look at lungs. Frustrating ! Really need a multidisciplinary team to coordinate tests, meds and rehab." Jo House.

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I have been referred to one by my GP that is run by Kingston Hospital. It is at a clinic in Rayners Park. When I received the appointment I noticed that the clinic is run by a respiratory consultant. As my symptoms are mainly headaches, head congestion, ear pain and fatigue,  I asked if the clinic was holistic or just for people with respiratory problems. The second GP I talked with said she didn’t know but that it was a good question (supporting the concern that GPS are not provided with enough information about the clinics).  If the clinics are to help those of us with Long Covid they need to be multidisciplinary as people are experiencing a huge range of symptoms. The other problem is the appointment is not until 1st December! From reading posts on Facebook groups, it seems that a lot of people with long Covid are having to pay to see consultants privately and/or complementary therapists as they are not getting sufficient or appropriate help from the NHS. I have had to spend £500 already to see an ENT specialist, get an antibody test and a CT scan. These at least confirmed that I had had Covid and that a serious previous problem in my left ear had not recurred. However I do not have an explanation or solution for the problems I continue to experience post Covid. 

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Thank you for sharing your insight @Sally A. I recently watched a webinar about the Your Covid Recovery portal and the lady presenting said that the assessments for post-covid clinic support would likely go via pulmonary clinicians. I am not sure if that is still the case but it sounds like it may be respiratory focused where you went. Which, like you said, may not be meeting everyone's needs as people have concerns and symptoms relating to different parts of the body. We hope the letter we have sent to Simon Stevens will prompt greater clarity so we can highlight any gaps like this. 

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I was told by my GP that the clinics were only for people who had been hospitalised. I pointed out that with hindsight, I should have gone to hospital but in March it was very much advised that you stay at home. I also referred to the thousands of patients who like me are suffering from a broad range of chronic symptoms. Due to timing of initial infection these individuals do not have positive tests to prove they have had covid. I have however been referred to a respiratory clinic and will shortly be having an ECG. However, due to the extensive list of symptoms, I really feel I would be better placed in a clinic that takes a much more holistic approach regards assessment and subsequent treatment. Six months in, I have also realised the importance of an anti inflammatory diet.  As a result, I feel I am on a slow but positive trajectory. Nutrition is something which absolutely must be addressed with new patients. 

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Thx for your comments. Increasingly others, like yourself, are calling for clinics that takes a more holistic approach regards assessment and subsequent treatment. We’ll be adding our voice to this too

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