“Disabled and ignored”: the reality of Long-Covid

“Fatigue is the most common problem”
Photo by Sharon McCutcheon, courtesy of unsplash

Covid-19 is a totally unpredictable illness and ranges from no knowledge of having had the illness to death. As of January 13th, this year, there have been 83,203 deaths from Covid-19 in the UK, including over 1000 deaths a day for several days during January. This is awful. It is awful that loved ones are dying, that loved ones may die alone. And this awfulness we hear about day in and day out. Our hope is that soon the vaccine will have been widely given.

Unfortunately, there is more awfulness to Covid-19. We are now hearing that some people develop an ill-defined illness associated with Covid-19. This symptomatic Covid-19 or post- Covid-19 syndrome is identified by the UK National Institute for Health and care excellence (NICE). NICE guidelines for Long Covid were published in December 2020. These guidelines are a work in progress as there has been insufficient time for full investigations.

“I am only 24 years old before the virus I was active and health…doctors often tend to brush off your symptoms when you’re 20, I feel just as fragile and in need of support as the elderly”. The All Party Parliamentary Group (APPG) heard spoken evidence and received a vast amount of written evidence outlining the experiences of those living with Long Covid. Below are excerpts from the evidence received in August 2020. 

“I am now disabled and ignored”.

“When I found the Long Covid support group at the end of week eight I cried for four days because I realised, I wasn’t alone”.

Long Covid can destroy the quality of life, the ability to walk, work or eat without difficulty. It presents as a range of different symptoms suffered by people weeks or months after being infected, some of whom weren’t particularly ill with the virus in the first place.  Fatigue is the most common problem, but breathlessness, a cough that won’t go away, hearing and eyesight problems, headaches and loss of smell and taste have all been reported.

The number of people with Long Covid is unknown; it is probably over 150,000. The Office for National Statistics (ONS) which is the largest independent body which publish statistics in the UK have said the work on Long Covid is in its infancy and it is working on estimating its prevalence. ONS reports that one in 10 people it surveyed who tested positive for Covid-19, still had symptoms 12 weeks later. One in five had symptoms for five weeks or more.

NHS England has now invested £10m in specialist Long Covid clinics. The NHS also has a ‘Your Covid Recovery Plan’ which has advice, particularly for those who needed hospital treatment.

There are many unknowns and unanswered questions on Long Covid. In August the APPG heard there was a lack of recognition of its reality, a lack of research and a lack of support and rehabilitation. Many of those living with Long Covid were not hospitalised and many did not have access to testing in the early stages of the pandemic.

Source: APPG on Coronavirus Oral Evidence Hearing: Long Covid 12th January 2021

The APPG write that key concerns raised across their written submissions included the following

  • More must be done to prevent long Covid – for example through improved public health messaging
  • There is a lack of clinical help for those who have Long Covid.
  • There is a lack of GP guidance on the condition and a general lack of awareness/recognition of the condition.  
  • There is a need for rehabilitation, recognition and research.
  • There is GP ‘scepticism’.
  • There are no Long Covid specific support or centrally available information – patients reported that the only support has been through peer support and social media platforms such as the Long Covid Support Group on Facebook.
  • Long Covid clinics are not easily accessible.
  • There is a lack of recognition from employers.
  • Many people are suffering with the mental health impact of having Long Covid.
  • Many note the feeling of abandonment as a patient.
  • Long Covid is still referred to as ‘post Covid/post-viral syndrome’.
  • There is no personal support or disability allowance.

The APPG had an Oral Evidence Hearing: Long Covid 12th January 2021. The APPG on coronovirus continue to collect evidence from health care professionals living with Long Covid and from expert evidence. This is in preparation for the first Commons debate on Long Covid tomorrow, chaired by Layla Mpran, MP(Lib Dem). Other speakers will include co-sponsors Andrew Gwynne MP (Lab) and Dan Poulter MP (Con). 

You can sign the petition to recognise Long Covid as an occupational disease.

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