'It's like the virus disappeared’: Vulnerable people condemn government decision to lift shielding

For most of the 2.2 million clinically vulnerable people in the UK, Sunday 22 March was the last time they stepped outside their front door. For many it was the last time they socialised normally with members of their own household. Since then, people with a range of health conditions including - but not limited to - some cancers, cystic fibrosis, chronic obstructive pulmonary disease (COPD) and organ transplant recipients, have been self-isolating, as required by the government.

Due to the increased threat of Covid-19 to these people it was decided they should remain within four walls for 12 weeks. A letter from the government told them to not even leave for food or medicine, and minimise contact with all other people - even their own household. Instead they were to rely on food parcels and the generosity of others to keep them alive.

Then, on Friday 22 May, without warning, people with cancer, liver disease and severe asthma were dropped from the shielding list by text message. It happened so quickly even their doctors couldn’t speak to them beforehand. The change was so inconsistent with government comms (including its own website which said the advice would not be changed till 30 June) many believed it was a hoax.

A week later, at the end of the tenth week of shielding - at least two weeks before the original review date - the shielding list was removed entirely for people in England and Wales (Scotland has not followed). They can now exercise and see one person from another household, in line with general lockdown rules of social distancing. It was not announced in the daily televised briefing, but on Twitter at 8.32am on Sunday by health secretary Matt Hancock. “Now we’ve flattened the curve and reduced new infections, from tomorrow, the 2.2m people who’ve been shielding can safely go outside,” he tweeted.

Fi Anderson, 31, from Bolton, greater Manchester, has a rare form of muscular dystrophy that requires she use a ventilator to breathe at night. Despite the severity of her condition - and her regular hospitalisation for chest infections and pneumonia - she didn’t automatically make it on to the shielding list and spent three weeks at the start of lockdown applying to be added so she could access priority supermarket delivery slots and PPE for her team of in-house carers.

Now Anderson has not left home for nearly 12 weeks. When she saw the advice had changed overnight she was “shocked”. “It’s like we'd gone from being told to stay home as our lives are at greatest risk, to as if the virus disappeared in the blink of an eye, which we all know is far from the truth,” she tells The Independent. For now she is remaining at home.

“I get many people were concerned that shielders were being forgotten by the government, but we just needed to be included in the daily briefings, just a simple mention even if nothing changed, not to suddenly open the flood gates and be done with it,” she says. “Our lives are at stake if we rush out too soon and I have two little girls I want to see grow up.”

The change in advice has already been criticised by experts. Rob Burley, director of campaigns at Muscular Dystrophy UK, said the sudden change risked making things confusing. Phil Anderson, head of policy at the MS Society, said his organisation was extremely concerned that the news was so sudden. “People who are extremely vulnerable will rightly want to hear a lot more about the scientific evidence showing this will be safe for them,” he said. And Dr Stephen Griffin, associate professor at the University of Leeds school of medicine, said it “seems to lack any obvious rationale other than to add to an ongoing ‘good news’ narrative that appears to have little grounding in reality”.

Sally Shorthose, 57, from Surrey, who has psoriatic arthritis and injects immunosuppressants (adalimumab fortnightly and methotrexate weekly), feels the change in policy suited a government narrative: “The government was desperate for good news,” she says. Shorthose had been told by her rheumatologist last week that she should shield until at least the end of June, advice she will follow. “ I will continue to be very cautious and to follow the advice of my doctors rather than the government.”

Katie Pennick, a disability campaigner, believes the change was made for political reasons, not scientific. She told The Independent: “The fact that clinics, doctors, senior officials at NHS [Dr Nikita Kanani, director of primary care at NHS England tweeted she was unaware of changes], and disability organisations weren’t warned in advance of this dramatic change in guidance – let alone consulted on it – makes me feel this was a political move, not a scientific one...I have heard nothing to reassure me it is safe to go outside.”

Sophie Crowley, 35, from Hertfordshire, is also highly critical of the government’s motivations. Crowley has ME (myalgic encephalomyelitis), asthma, vestibular migraines and several other conditions, has been “in lockdown” for 18 months - only leaving the house for food shopping, medical appointments or a short trip in her wheelchair - because of the risk to her health.

“It seemed to be more of a PR stunt than anything, an exercise following the Dominic Cummings scandal. Anything to divert publicity away from that,” she says. “I only got my shielding letter in May and it states you have to shield for 12 weeks from the date of the letter so that takes me to August.” She, like many others who have expressed their anger on social media with the hashtag #Stayshielded, will continue to shield at home.

Nicky Margieson, 47, from Exmoor, is on the government shielding list because she was being treated for ovarian cancer. She expected to be self-isolating at least until mid-June so when she saw the advice had changed on Monday she felt both “worry and relief”. “We have witnessed that the general public have an increasingly blasé attitude towards shielding,” she says. “I do not feel safe at all in any public areas...I will personally shield myself until a vaccine comes out.”

Halima Khatun, 35, from Manchester says her family will also be “doing [their] own thing” and making decisions based on feelings and instincts; she has a government shielding letter for her daughter who has a viral-induced wheeze. “I do wonder if it’s all a little bit too soon,” she says.

Groups like Asthma UK have advised that people shouldn’t feel pressured to adhere to the advice if they don’t feel ready, saying “the decision to go outside is yours” and if you do decide to venture out “keep the number of visits outside to a minimum”. Pennick reminds people that the “shielding was never law - it was guidance, changes are still guidance”.

But Pennick worries that this policy change will cause “lives to be lost” as people “venture out and put themselves at risk”. On 1 June, the first day of the new advice, the government announced 556 deaths bringing the total to 39,045. While it maintains that any policies will be reversed if they see a rise in the number of deaths or the R-number (the average rate of infections per Covid-case), it might well be too late to turn back the tide.