There is a postcode lottery for Long Covid Clinics. There is no denying it. Some patients in certain areas of the country such as London, Bristol and Leeds had early access to clinics where they were physically seen, and therefore examined, by a consultant and appropriate tests and investigations ordered.
Some of us have had, if we are lucky, a zoom call with a physiotherapist. Some have had a phone call with onward referral to for group counselling sessions or physiotherapy. For many they have had nothing. The Long Covid Support group ran a straw poll of its members:
I am 12 months into my Long Covid - I have had to seek private consultations to get my diagnoses. I was abandoned by my NHS respiratory consultant even though I have shortness of breath on light exertion, desaturations on exertion and at night. He offered me a diagnosis of breathing pattern disorder but with no plan on how to treat it. Not even a physio referral. He just discharged me from clinic.
My GP did refer me to a Long Covid clinic as he really didn’t know what else to do with me.
I felt this should have been a positive step. It wasn’t. I mean don’t get me wrong the physiotherapist who I spoke to was lovely and empathetic. It offered validation but that’s all.
I still bristle when recall a comment “ well you seem to have lots of things in place to help you?”. Well yes I have had to; I have been looking after myself for over a year!
The only advice to come out of it was a self referral to a talking therapy for employment advice. I haven’t done this. I will go to the citizens advice bureau or discuss with my peers, or the BMA. It may be wrong but I don’t want “ sought counselling” anywhere near my Long Covid diagnosis. Don't get me wrong if I WAS anxious or depressed, and by god's I should be, I would be straight on the self referral website. I feel it will shut doors for myself and others if LC is labelled as anxiety or as a recent GP hypothesis " LC is the result of childhood trauma".
I was left over a month ago with the promise of being contacted in 2 weeks after my case had been taken to the multidisciplinary team meeting to discuss my cognitive function as I can’t be referred to anyone locally unless I have had a stroke or a severe brain injury. Despite me sending a follow up email I am still waiting to hear.
(Believe me its taken me a huge amount of courage to write that last paragraph. Namely because I do not like criticising my peers in the NHS and secondly I have a strong sense of "don't bite the hand that feeds you" but we need to be transparent so I did)
But really in all honesty what was I expecting? I live on the South Coast of England and have a local district hospital. Hardly the place to expect cutting edge medicine.
And isn’t this the life of someone with LC? The feeling that with a new referral you may be getting somewhere only to have your hopeful expectations dashed again.
My other concern as a health provider is what if I had had this consultation at 12 weeks? Over Zoom would she have picked up my shortness of breath, my microvascular angina, my overwhelming dysautonomia, my cognitive dysfunction and executive dysfunction? I think not and that really worries me.
All LC sufferers now know the story of Jasmine Hayer and the fact that her multiple pulmonary emboli and pericardial effusion were not picked up until 11 months into her illness.
From the Guardian:
"Long Covid patients have voiced growing frustration at a “postcode lottery” in clinical support for debilitating symptoms, with some areas of the UK offering no specialist clinics more than a year after coronavirus took hold. Other sufferers said they were disappointed by long Covid clinics investigating certain symptoms only, with no comprehensive treatment plan".
Official figures suggest there are 1.1 million Britons with Covid symptoms lasting over three months. In October 2020 , NHS England announced more than £10million for a network of clinics bringing together doctors, nurses, therapists and other NHS staff to conduct physical and psychological assessments and recommend treatments for long Covid patients. So this works out at roughly £10 a patient....
Louise Barnes, founder of the Post Acute Covid Syndrome 19 patient advocacy group:
“Patients in the UK have waited going on a year to get support for the multitude of symptoms they’ve been experiencing. To finally think you are going to get referred to a clinic but your GP tells you they don’t have any information, or you get there to find it’s a ‘respiratory-only clinic’ or only staffed by physiotherapists leaves them feeling despondent. For the most part, sadly, patients are coming away massively feeling let down and with no viable treatment plan offered – even a rudimentary one, whilst a treatment is found".
And the postcode lottery:
“We’ve heard very good reports from some of the clinics in Leeds, Leicester, Bristol, and University College hospital (UCLH) in London, but there still exist prominent geographical inequalities regarding access with many patients in Scotland, Wales and Northern Ireland unable to access them at all – likewise in Devon and other areas. Some patients are unable to travel and no transport has been offered.”
More disappointment from a LC clinic patient:
“We spoke about my symptoms, and how I was waiting to complete a 72-hour ECG. He said he would be interested in knowing the results of my ECG, but the lion’s share of his focus was getting me psychological help, and getting me to a physiotherapist. He briefly mentioned pacing (a self-management strategy for activity, involving rest periods). I’d like them to look at why I am a year on and still unable to walk across the room without becoming dizzy or sick. I’d like them to do a CT scan of my lungs, and some endocrine tests. I don’t have good days. What I want is to be heard, to be assessed, to be supported.”
Dr Clare Rayner, who has had long Covid since March 2020, is an occupational health specialist and has sat on a task force with NHS England to advise on these services.
She says they are in danger of being "the Emperor's New Clothes" - saying some are "there, but not functioning as they should be".
An NHS spokesperson said: “We expect that there will need to be a substantial further expansion in support for long Covid patients during 2021. Covid and its long-term consequences are entirely new, but – through our network of clinics – the NHS is carrying out research and sharing learning about how best to treat and rehabilitate patients experiencing ongoing debilitating symptoms.”
This is a pipe dream. Unless the government provide proper additional funding it just won’t happen. We are still in the middle of a pandemic, waiting lists are at an all time high and many hospitals were in the red and having to cut clinics before we had even got a whiff of SARS-COV-2.
So as part of my ongoing research I attended a British Medical Association meeting about Long Covid. It featured Dr Melissa Heightman who organised and runs the Long Covid Clinic at University College London Hospital (UCLH) and who has strong links with the COVERSCAN team.
The UCLH clinic is where everyone wants to be referred and here is why.
They started to see patients who had been discharged from hospital with Covid-19 for follow up and as they were still symptomatic. This then progressed to referrals from other health professionals who were seeing patients not admitted to hospital but still having ongoing symptoms. To date they have seen over 1300 LC patients.
The above slide shows their multidisciplinary team (MDT).
A neurologist who specialises in dysautonomia
A respiratory physician
A radiologist- who look at CT scans/ MRI's etc
Patients are seen face to face by a doctor and a physio and they go on to have tests as needed including an exercise test, a chest X-ray, bloods, and ECHO ( scan of the heart) and a CT scan of the lungs if needed. Further imaging and investigations such as an MRI or a 7 day trace of the heart are then organised. These results are then discussed at the MDT where an action plan of therapies and treatments are discussed.
This is what every patient with LC needs. Look below at the information they have so far gathered from the patients attending:
Many have the classical Long Covid with fatigue, brain fog, chest pain, palpitations, breathlessness and post exertional malaise. As if this wasn't enough for one person to deal with look at the other findings of the clinic:
End organ damage
VTE = clots in the lungs
ILD = interstitial lung disease
Breathing pattern disorder
Anxiety and depression
Abnormal exercise physiology.
I just CANNOT understand how a LC clinic relying on a physiotherapist/ counsellor phone call can in all honesty think they will be able to screen these complications out?
I'll just leave the above slide here for you to digest.
I honestly don't think I can sum the needs of a Long Covid patient better than the UCLH clinic "knowns".
So to summarise if Carlsberg made Long Covid Clinics they would provide:
recognition and validation
early diagnosis and intervention and referral
access to LC clinics for ALL
identification of symptoms and appropriate advice on how to manage these
a multidisciplinary /integrated care approach
timely access to investigations
appropriate therapies including occupational therapy