It came to our attention yesterday that staff of a NHS Trust in the South of England were not aware that Covid-19 could be chronic in some patients. During a Zoom ‘Community Engagement Forum’ conversation, our MD Sally Callow introduced herself as an M.E patient advocate and Long Covid patient. The other Zoom attendees asked what Long Covid was, even checking the spelling with Sally so they could research it online. It was not that they hadn’t heard the term Long Covid but knew it by another name, they did not know that Covid19 can be chronic. During the Zoom call, one of the attendees found this British Medical Journal article about Long Covid.
This is worrying; these NHS staff work to ensure that the community is fully engaged with communications and support. How can they know they are doing that effectively if they are unaware of the chronic nature of Covid19 and how it is affecting UK communities? Particularly concerning is that they have not received any central communications from Public Health England, NHS England, or the Department of Health and Social Care about the growing Long Covid community (Currently at least 30,000 in the UK).
Sally had signed up to take part in the online meeting to talk about how Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients had been poorly supported in her local area during the pandemic. If there was support available, she had not seen any communications about it. M.E/C.F.S patients were not included in the official NHS England/Department of Health and Social Care ‘at risk’ list and so were not told to shield and had no automatic help with groceries and prescription collections. We believe this is due to a lack of knowledge about the illness and the false belief that M.E/C.F.S is psychological which is widespread across the NHS. If these two bodies understood the impact Covid-19 could have on an M.E/C.F.S patient, they would have included the illness on the ‘at risk’ list. Whilst not at a higher risk of dying, patients are at a very real risk of severe deterioration and have the risk of becoming bed or housebound. Many patients used their own judgement and chose to shield. However, without the support offered from the Government, this made shielding very difficult for many, particularly those who do not have family members to care for them or carer support.
The Zoom conversation did not turn out as expected and Sally explained Long Covid to these NHS staff. how it affects patients, and signposted them for more information. This article is not a comment on the NHS staff, they were all very eager to learn, kind, and supportive.
During the conversation, one of the attendees considered why central messaging had not communicated any information about Long Covid. She said maybe there was an element of scaremongering avoidance going on, maybe the Government and Public HealthEngland do not want to cause panic. There may well be an element of that but the over 70’s, BAME, and people with ‘underlying health conditions’ have been told they could die if they get Covid-19. Surely warning about the possibility of developing a chronic illness is not as scary as being told you could die?
We believe that Long Covid is not being officially recognised because, as with M.E/C.F.S, it will become a large economic burden once patients start having to think about financial support. This lack of recognition makes the fight for Government support even harder than it is for those with visible and recognisable disabilities, many of whom have to fight for months or years for funds. Be in no doubt, Long Covid is real and severely debilitating in many. There are already many stories online of people who were living life to the full pre-Covid19 and are now wondering if they will ever be able to return to their pre-Covid19 life.
As we have said before, there are some Long Covid patients who will go on to develop M.E/C.F.S, but others will remain chronically sick with a new chronic illness (yet to be named). No one knows if this new chronic illness has an end date – we are vehemently hoping that it does.
When you see the latest Covid-19 statistics, please bear in mind that the death rate is not the whole picture. It is estimated that around a third of all Covid-19 patients will go on to be chronically sick. That has not been mentioned by the UK Government, Public Health England, or NHS England in their public information messaging. Whilst we do not agree with scaremongering, there has to be a low level of messaging that it is not a case of death or complete recovery within 2 weeks. Perhaps, if people knew the risks they would not be so willing to call it a ‘hoax’ or ‘just like flu’ that only severely impacts certain sections of society. Long Covid has affected people of any age, gender, race, and pre-Covid level of health and fitness. No one knows why some people recover and others do not; in exactly the same way as M.E/C.F.S.
One of our recent learners asked if our healthcare e-training course’s ‘healthcare solutions’ module was relevant to Long Covid. The answer is yes. It is too soon to categorically state that Covid-19 triggers M.E/C.F.S, however, we anticipate some will go on to develop M.E/C.F.S. Those that do not develop M.E/C.F.S but remain chronically sick will still need support. The ‘solutions’ included within our e-training will help patients with both chronic illnesses. It seems that M.E/C.F.S is Long Covid’s closest cousin.
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