MSs support calls to reform Long Covid care in Wales

Stanley Murphy-Johns

Senedd Members from three Welsh parties have co-signed a letter to the health secretary calling for reform to Long Covid care in Wales.

The letter was written by the Long Covid Support charity and presented to the Members at a meeting in July 2024 by people suffering with the illness.

Hefin David, Labour MS for Caerphilly, Peter Fox, Conservative MS for Monmouthshire and Leader of Plaid Cymru, Rhun ap Iorwerth, all agreed to co-sign the letter and present it to Mr Drakeford this month.

Victims of Long Covid in Wales are frustrated by inconsistent levels of care, a lack of clinical trials, and a general feeling that they have been ignored.

“As a charity and certainly as someone with Long Covid, a lot of the dialogue around Long Covid only serves to minimise what we go through.” said Gareth Evans, Welsh representative for Long Covid Support.

The meeting was set up after the cross-party Senedd group on Long Covid disbanded in January 2024. The group had been set up by MS Rhun ap Iorwerth and MS Hefin David in 2021.

Mr David explained that: “The problem with cross party groups is we have so few Senedd members it’s about trying to get people to attend them. Sometimes they are just the person chairing them, and then the community.”

By the time the cross-party group stopped, Mr David was the only Member of Senedd in attendance.

The Welsh Government has committed £10 million to Long Covid services from 2021-2023, and in March 2023 they committed to spending a further £8.3 million on the Adferiad (Recovery) programme every year.

The letter outlines concerns with how that money is currently being used by the seven Welsh Health boards.

On the current provisions in Wales, the letter reads: “These are not clinician led and revolve around occupational therapy, physiotherapy and psychology. These treatments alone do not address the underlying pathophysiology of Long COVID patients. In fact, exercise can serve to make patients worse.”

It calls for a review into current spending, a centralised Long Covid clinic, and for “a more collaborative model of treatment and care” to be adopted by the Welsh Government.

Stories of Long Covid

At the meeting in July, the three Senedd Members from Plaid, the Conservatives, and Labour listened to stories from Long Covid patients which underlined failures in the current systems of care in Wales.

Bethan Davies was only 16 when she got Covid-19, and when her symptoms persisted, she found that she was not able to be referred to an adult Long Covid specialist, and that no paediatric care offered Long Covid support.

“There’s just no provision for kids with Long Covid in Wales.” said her mum, Kate Davies.

Wendy Edwards, 58 explained how, after being ruled unfit to work in the NHS because of her Long Covid, she had been refused her ill-health pension on the grounds that Long Covid is not currently listed as a lifetime illness.

Long Covid Support Trustee Gareth Evans explained to the MSs that: “While you may have some GPs who are keyed up and know all about Long Covid, you’ve got some other GPs who might not even think it exists.”

After listening to these stories, the MSs agreed to co-sign the letter which will be sent to incoming Health Secretary Mark Drakeford in September.

“People with Long Covid need to be treated seriously.” said Mr David.

Long Covid Support estimate from ONS data published on Scotland and England, that approximately 110,000 people in Wales are suffering with Long Covid, including 4500 children.

Among its demands, the letter calls for new specialised Long Covid clinics in Wales, clinical trials and a public messaging campaign to combat misconceptions about Long Covid.

It reports that: “Patients encounter suspicion and gaslighting at the hands of health care professionals who suggest they’re anxious, depressed or even lazy. This sense of disbelief may extend to loved ones and employers.”

Along with the co-signed letter, Mr David is also sponsoring Long Covid Support to have a stall at the next Senedd Marketplace.

These are held on the third Tuesday of every month and provide groups the opportunity to lobby Senedd members into supporting their cause.