A growing cross-party group of MPs and peers is demanding an urgent overhaul of the services offered to sufferers of long Covid amid warnings that thousands of new cases will emerge every day as coronavirus restrictions are lifted this summer.
Sajid Javid, the health secretary, has been urged by the group of more than 60 parliamentarians to revise the lockdown-lifting plans because of the expected surge in long covid cases, which experts warn could disproportionately affect the young.
The group, which includes former Tory minister Dan Poulter as well as Labour, Lib Dem, Green and SNP MPs, states that lifting restrictions when case numbers are rising and the impact of the vaccine on long covid is not known “risks placing a large and unsustainable burden on the health service”.
“We are concerned that the government’s decision to lift most remaining coronavirus public health measures from 19 July risks exposing many more people to long covid, including younger age groups who aren’t yet fully vaccinated,” writes the group. “This condition leaves many unable to work or carry out their regular daily activities, with severe consequences for our NHS and economy.
“The rehabilitation services providing support to long Covid patients are already overstretched and under-resourced, and the current increase in case numbers will increase waiting lists even further.”
Just under one million people in the UK were living with long Covid in June. Around 700,000 were of working age and 33,000 were children. The number with the condition for a year or more has increased to 385,000, according to official statistics.
Serious cases of long covid among the young have also been emerging. Claire Hayes said her daughter Gracie was a bright and successful pupil at her school in Northumberland until July last year. Since then, the 11-year-old has not managed to complete a week in the classroom. “She’s lost a lot of weight, and the fatigue kicked in,” Hayes said. “She’s had horrible headaches, rushes, pains. When she stands up, her heart rate doubles. And she gets brain fog. Some days she can’t get out of bed because she feels dizzy. Just having a shower is impossible.”
Part of the work at long-Covid clinics is helping sufferers discover their physical limits, because overexertion one day can lead to days or weeks in bed. That’s much harder for Gracie, her mother said. “Now, if she wants to walk to the park and see her friends, you know that a couple of days later she’s not going to be able to get out of bed for two days. It’s heartbreaking.”
Fran Simpson of Long Covid Kids said: “Children who’ve got long covid – it’s completely destroyed their lives for some of them. They’ve gone from being children going to school, seeing their friends, having hobbies, to not being able to school. Some are not well enough to walk – they’re using wheelchairs. Others are not eating properly because of the impact on taste and smell. It feels like they’ve had their childhood stolen.”
About 7% to 9% of children who become infected with covid go on to develop some long-Covid symptoms, according to Office for National Statistics data.
The group of MPs is demanding that, as a minimum, the government should be collecting regular data on the number of long-Covid cases and estimates of how these will be affected by the government’s decision to drop remaining restrictions. It wants long Covid to be considered a major factor in such decisions, alongside hospitalisations and deaths.
Meanwhile, Javid has also been contacted by the Long Covid Support group, made up of more than 40,000 sufferers, pleading for more help and to “act now to prevent further suffering”. The group warns that the huge variety of potential symptoms may be underestimated, citing potential for organ damage.
“Regardless of the severity of their initial illness, many of our members have been incapacitated and unable to undertake their work, education or caring responsibilities for more than a year, with no prognosis,” it writes.
The government had not responded to a request for comment by the time of publication.