‘We need a cohort of resources’

Many previously diagnosed with Covid-19 may well be virus-free but they are still finding it difficult to get back to ‘their old selves’ – as a new post viral fatigue called ‘Long Covid’ seems to be taking hold of these former pandemic victims.

Originally brushed off as a fashionable myth, a recent study by Tim Spector, a professor of genetic epidemiology at Kings College in London, reports that around 300,000 people have reported Covid-19 symptoms lasting for more than a month.

Professor Spector runs an app which has been downloaded more than 3m times. It has so far found that as many as 1 in 20 people infected go on to experience long term symptoms.

Another study, by Southmead Hospital in Bristol, released on 20 August 2020, found nearly 75 per cent of Covid patients admitted to hospital were suffering ongoing symptoms three months later – many unable to manage simple daily tasks like washing and dressing themselves.

So what is Long Covid? It is the unofficial term used to describe people suffering symptoms longer than the WHO (World Health Organisation) endorsed two week period.

Sufferers report many symptoms beyond the main three (persistent cough, fever and loss of taste and smell) including fatigue, breathlessness, muscle ache, joint pain, brain fog, memory loss, lack of concentration, depression and hair loss.

Unite education officer Danny Freeman was hospitalised with Covid back in March. He tells UNITElive of his own harrowing experience of living with Long Covid.

As previously reported on UNITElive Danny spent nine days in Kingston Hospital, Surrey, at the end of March this year. Danny had endured the full range of the virus’ symptoms at home for eight days. He had a continuous fever throughout but when his temperature soared to 40.8 centigrade it was time to dial 999.

Danny was rushed to his nearest hospital where he was assessed and taken straight to intensive care. Danny lay in intensive care to the sound of other Covid patients passing away. After a few days he was moved to a high dependency unit (HDU). In the recovery ward Danny met Rick and Steve who he bonded with and together they shared the highs and lows of recovering from Covid-19.

Harrowing ordeal

He was on a CPAP ventilator for three days to try and get his lungs working properly again. The ventilator itself was a harrowing ordeal. “It squeezes you round the neck, it steams up and the pressure in it drops making you struggle to breath. It’s pressurised to try and get your lungs to work,” said Danny Freeman, London and Eastern region’s education organiser.

Danny was discharged to recover at home on April 8. It is five months on now and Danny is still not back to full health.

“When I first came home I was still coughing constantly. It’s awful. The breathlessness lasted six weeks,” said Danny Freeman.

Over the following weeks Danny had tests to monitor his recovery. His lungs and vital organs recovered and seemed to be working well but some cognitive tests revealed some issues.

“My visual memory is at 62 per cent, my forgetting memory is 92 per cent but my verbal memory is only 16 per cent,” added Danny.

Danny now struggles in meetings as the effects of Covid mean he can’t keep focused. Taking notes helps him but he is easily overwhelmed and left exhausted. Danny is on a phased return to work. He is undergoing counselling for the trauma he has been through. He has physio and sees and osteopath too. He is also under the Wolfson neurological clinic, a neurorehabilitation centre.

Waves of fatigue

“The fatigue is awful. You wake tired and then battle it all day. I also get waves of fatigue hit me throughout the day too,” said Danny.

Steve and Ricky, Danny’s recovery comrades both also have lasting symptoms. One of them needs a heart scan and the other still has breathing difficulties. All three of them suffer with extreme fatigue.

“Unite members who have had the virus get in touch with me now. One now has Covid-related heart attacks because the virus can cause sticky blood. Another friend who swam at the local lido every day can now only manage a couple of lengths once a week,” added Danny.

Danny now generously donates his plasma – which is given to people hospitalised with Covid. “It helps them recover quicker,” explains Danny.

In order to donate plasma your body must contain antibodies to the virus. The sicker you are the higher you antibodies.

Danny goes to The Stoop, a sports stadium in Twickenham, to donate the plasma. “The plasma is taken in much the same way as if you were donating blood but they use a stronger vein. The plasma is separated from the blood and then the blood is put back into the vein,” said Danny.

Danny thinks this trial has helped about 200 people so far. It is still unclear how long antibodies last once you have recovered from Covid.

Winter is coming

With infection rates on the rise again and winter flu season approaching it is clear that there will further cases of people suffering with Long Covid and many will be unable to return to work.

Dr Jackie Applebee, a GP at a surgery in Tower Hamlets and chair of Doctors in Unite, thinks the answer is more research for a better understanding of this very new virus and for sufferers to be signed off work so that they can recover fully at home.

“I would sign someone off sick if they were suffering from long term symptoms and I would encourage my colleagues to do the same,” said Dr Applebee.

So far Dr Applebee has only seen one or two cases of Long Covid. “That’s the nature of general practice,” she explains.

“This is a very new illness and we don’t know how long it will last. In most cases I would treat this as I would any other serious post viral fatigue,” she added.

“Research is needed, perhaps following case by case, to determine any demographic or genetic factors to see if we can make any predictions,” said Dr Applebee.

Disingenuous

Health Secretary Matt Hancock claimed that GPs don’t know how to get people to the services provided for Long Covid sufferers – a claim Dr Applebee slams as entirely ‘disingenuous’.

“Even before Covid-19 there were endless waiting lists for people requiring rehabilitative care. This is because of brutal cuts to our health service by the Conservative government, not because GPs don’t know where to refer patients,” commented Dr Applebee.

“We need somewhere to send people. I am only aware of one clinic in my area and that is a respiratory clinic in Tower Hamlets,” she added.

The Department of Health and Social Care was only able to identify one clinic set up for Long Covid patients, the Seacole rehab centre in Surrey.

“The government needs to make sure that we have the clinical support to deal with the after effects of Long Covid,” believes Gail Cartmail, Unite assistant general secretary.

“Services are already pressed, public health is now within local government which is suffering financial difficulties as a result of austerity. Support in the community is also thin on the ground following cuts to mental health services. We need a cohort of resources to deal with Long Covid,” she added.

More research

“We need more research so that we can establish what it is about Long Covid that impedes workers’ abilities to do their jobs so bosses can make the necessary adjustments to help them return to work,” Gail said.

“As a trade union we need to be looking at whether this should be on our bargaining agenda so that we can ensure employer’s absence policies support workers who have Long Covid,” she added.

The UK has the lowest threshold on statutory sick pay. “What happens if someone suffering with Long Covid only gets statutory sick pay – they will be pushed onto Universal Credit which leads to further mental ill health.

“The government needs to step up and ensure that people are not left to suffer financially as a result of this new illness,” she concluded.

Where to get support

Think you, or someone you know might have Long Covid?

• Contact your GP/health centre for advice
• See the Facebook support group for people suffering with Long Covid symptoms – it currently has 23.2k members.
• There is also an online Covid recovery service – focusing on the effects of Long Covid on the sufferer’s cognitive, memory and concentration faculties.

By Jody Whitehill