“I can’t see myself getting better and being able to beat the fatigue.” Those are the heart-breaking words of one of my constituents living with long Covid.
Long Covid is the hidden crisis within this growing coronavirus pandemic. Its impact on so many aspects of people’s lives, and our society, will be significant. In fact, it is estimated that around 300,000 in the UK alone have it. Many feel that unless they end up in hospital then their case of coronavirus is “mild”.
There is nothing mild about long Covid. Take Jane*. She emailed me to say she’s 32, and was previously healthy and fit. Not your stereotypical person “at risk” from coronavirus. Long Covid has affected her since April. She now has neurocognitive and mobility problems, and has crushing fatigue. Her partner, she told me, “has essentially become a full-time carer”. She’s not unique, she’s not an outlier – lots of people like Jane have emailed me.
How have we ended up here, and when will we see the research and recognition of those living with long Covid that is urgently needed? That’s what I’ll be asking the government today in the first-ever Commons debate on the subject.
The first thing we need to see is much-improved reporting, with a national register of people with long Covid. When we started the All Party Parliamentary Group (APPG) on coronavirus in June, we were not expecting to be inundated by over 1,000 submissions from people reporting a plethora of ongoing symptoms months after contracting Covid-19.
This is an urgent and rapidly evolving situation. New research in the Lancet suggests that more than half of people who are admitted to hospital with coronavirus experience ongoing symptoms six months later. There is growing evidence that children have long Covid, yet there is no recognition of this in the government narrative around school safety.
So why are we not counting long Covid as a measure of severity of the pandemic in the UK, and reporting numbers like we do with infections, deaths and hospitalisations? So many people have emailed me to say they never had a test because they caught coronavirus in the first wave of the pandemic – a national register would help solve this.
Long Covid is being treated like any other new illness, when we should be treating it as an integral part of this pandemic.
Yet awareness among the general public is dangerously low. Too many people who are young and fit think there’s nothing to really worry about when it comes to coronavirus. As we approach the winter peak of this pandemic, now is the time for the government to launch a national register of those living with long Covid, and to include the latest statistics alongside the other data published each day. Until they do that, we won’t know the true extent of the pandemic.
At the same time as improving reporting, those who are unfortunate enough to find themselves living with long Covid need recognition from the health and welfare systems.
Guidelines from the National Institute for Health and Care Excellence are a good start, but what about guidance for employers? NHS symptom guidance and GP assistance remains patchy. Long Covid clinics aren’t easily accessible for many. These are all things the government needs to step in to improve.
This is affecting individuals and families across the country. Laura* wrote to me to say: “There are tens, if not hundreds of thousands, of long Covid sufferers out there, each with families who can no longer depend on them due to the crippling after effects of the virus. Ageing parents, young children, those with disabilities who rely on care, these are the forgotten casualties of long Covid as the very fabric of family life is torn apart by the debilitating effects of this pernicious condition.”
Recognition through financial support, especially for key and frontline workers who cannot work due to long Covid, is badly needed. That surely starts with recognising long Covid as an occupational disease for those in this situation. The APPG on coronavirus will be calling on the government to set up a long Covid compensation scheme for them, comparable to the Armed Forces Compensation Scheme.
And finally, research needs to be expanded if we are going to get ahead of this situation and better understand long Covid and its impact on people, especially for those who were not admitted to hospital or did not have access to a test at the time of infection. The government has made a good start here, but commitments to research so far simply don’t match the severity or urgency of this.
We now have some long Covid clinics, which is very welcome. Now is the time for our NHS and government to research their effectiveness so far and what can be done to create more and improve access for patients.
Today, MPs have a chance to show people with long Covid that parliament has not forgotten them, that their situation is urgent and it’s serious. So many people have written to me to tell me they feel ignored, forgotten and belittled. We can put that right.
Now it’s time for the government to follow suit and take action, before thousands upon thousands of people are left behind.
*Names have been changed to protect identity
Layla Moran is the Liberal Democrat MP for Oxford West and Abingdon.