Long Covid campaigners to target Parliament after five years of neglect

On Tuesday 18 March campaigners from Not Recovered UK – who all live with long Covid or are impacted by it – will be taking to the streets of Westminster to ask the government #WhereIsIt? Because currently, a crucial parliamentary report from 2022 into long Covid has been ignored – leaving millions of people suffering.

Long Covid: destroying lives

Previously across the UK, the group has taken out billboard adverts – crowdfunded by chronically ill people themselves. Not Recovered UK has put them in Bournemouth, Southampton, Havant, Swindon, Portsmouth, Manchester, Leeds, Bradford, Cardiff, and Glasgow.

The billboards were highlighting that for millions of people, there are currently no effective treatments for long Covid and ME. They also stated that doctors often leave these patients without help. Overall, the billboards pointed to the fact there is still no cure for either of these conditions, too. All of this is partly due to the medical community’s poor understanding of long Covid and ME.

The impact of all this can be devastating – hence Long Covid Awareness Day.

‘A shell of myself’

Alex Sprackland lives with long Covid and co-founded Not Recovered UK. He said of the disease:

Before contracting Covid-19 in March 2020, I was a fit and healthy 29-year-old. I went to the gym five days a week and competed in weightlifting competitions; rode my BMX for hours a day; had no health problems and had a bright future as an engineer.

I am now a shell of that person.

Mostly I am confined to a wheelchair and have to spend my days housebound, as even short trips outside make me sick. This illness is very isolating, most of my time is spent alone and I barely see any of my friends. It has also cost me my relationship and all my hobbies.

There are no treatments and none of my doctors can help me. It feels as if I have been completely abandoned by the government. My life is on hold, and I don’t know if I will ever get it back. Long Covid has stolen my identity.

Long Covid Awareness Day

Now, Not Recovered UK has decided to act around Long Covid Awareness Day. Thanks to crowdfunding the group has hired a Digivan which will display information about the disease and patients’ pictures and stories. On top of this, Not Recovered UK has printed thousands of leaflets – using the billboard as inspiration – which will be distributed by patients, their allies, and campaigners not only in London but in locations across the UK.

However, the main thrust of the day will be to ask the government where the progress is on an All-Party Parliamentary Group report from 2022. It laid out 10 clear actions that the government could, and should, be doing to support people living with long Covid. These were:

1. £100m a year in funding for research into long Covid.
2. Employer guidelines.
3. Key worker compensation.
4. Long Covid care pathways.
5. Legal definition.
6. Measure, report, monitor.
7. Public health policy.
8. Care pathways for children.
9. Guidance for education settings.
10. Guidance for medical practitioners.

Yet, inexplicably, few of the APPG’s 10 recommendations have been actioned. For example, the National Institute for Clinical Excellence (NICE) guidelines for long Covid have not been updated for over three years. Care pathways are often non-existent, with specialist centres closing. And crucially, the government has failed to commit to £100m in funding for research – which, given the scale of the challenge for the two million people affected, seems counterproductive, at best – and at worst a dereliction of duty.

So, Not Recovered UK are taking this directly to Westminster to ask #WhereIsIt?

Five years on – and nothing has changed

Sprackland said of this year’s campaign:

We are now five years into the Covid-19 pandemic and according to ONS there are two million people in the UK suffering from Long Covid. There are people who have been sick for five years and there are still no treatments for this disease. Despite the enormous burden on the patients and the economy, there has been no new research funding since 2021. The Long Covid clinics are closing, and the government has just abandoned those suffering.

There was an All-Party Parliamentary Group on Coronavirus that produced a report in 2023 that made 10 recommendations for dealing with the Long Covid crisis. One of which was £100 million in annual funding to find diagnostics and treatments for those suffering. This recommendation has not been met, and we think it would go a long way to finding answers for the patients.

We are calling on the government to make good on its own recommendation and fund the research to give these people their lives back. The government itself has recommended funding and support for those with Long Covid. The two million people in the UK with Long Covid want to know… Where is it?

The Digivan and campaigners will start Long Covid Awareness Day at 10am at the Department for Work and Pensions (DWP), before making multiple stops at parliament, the Department of Health and Social Care (DHSC), and Downing Street

At parliament, Not Recovered UK has invited MPs from all parties to come and discuss long Covid with patients and campaigners. It specifically wants to know from MPs what is being done about the APPG report.

Plus, at Downing Street the group has hinted that it will be “making some noise” – aimed at the occupants inside.

Lives destroyed. Action must happen.

Aaron Campbell co-founded the campaign. He has lived with long Covid since July 2022. Campbell said he launched the project out of:

Desperation. ME patients have been left to suffer for decades without any appropriate treatments, and it is very likely that long Covid patients (50% of these patients are meeting the criteria for ME) will have a similar fate unless there is an urgent and drastic change in the level of research and funding they are both currently receiving.

Many of these patients are too sick to leave their beds and an online awareness campaign driven by donations ensures that everyone is given an opportunity to be involved – whether that be through their own donations, suggesting locations for the billboards and voting for them on Twitter or even just sharing the GoFundMe to others – and finally means society can see the true extent of the suffering these people go through and just how desperate they are to get their lives back.

The name on the billboards and leaflets is Not Recovered who are an international unity of patients working together to fight for research for chronic health conditions. This is a global issue. There are millions of us needing help.

You can donate to the crowdfunding campaign here, and find out more about Not Recovered UK here.

If you wish to volunteer on the 18 March handing out Not Recovered UK leaflets, contact the team on X here for more information.

Featured image via the Canary