Disabled people have questioned the government’s decision to ease the stringent guidance that was previously advising those shielding from coronavirus to stay inside for weeks on end.
In a surprise move at the weekend, ministers suddenly announced that those who have been shielding for the last 10 weeks – and who had been expecting to continue having to do so until the end of June at the earliest – could now leave their homes for outdoor exercise.
The move was announced despite the pandemic “alert level” remaining at level four, the same level as on 10 May.
The new guidance for the 2.2 million people seen as “clinically extremely vulnerable” stresses that they should continue to “take precautions” and “maintain strict social distancing”.
Those living alone can spend time outdoors with one person from another household, and this should ideally be the same person each time, according to the guidance, which is only advisory and applies to England.
But a succession of disabled people’s organisations and disabled campaigners have raised concerns about the government’s decision to update the guidance.
Svetlana Kotova, director of campaigns and justice for Inclusion London, said: “The situation does not suddenly become safer just because the government says so.
“We believe disabled people who are shielding should be very cautious following new advice and we know many feel they have no option but to continue to stay at home.
“With all that has happened to disabled people during this emergency, many of us are already finding it difficult to trust and follow the government’s advice, especially when it is issued out of the blue, without warning or consultation.
“This increasing lack of trust in government advice is shared more widely in society and we are concerned that the undermining of social distancing guidance will further impact negatively on people who are shielding or just beginning to venture out.
“Longer term there are many serious issues relating to inclusion, rights, discrimination and poverty for people who are shielding that need to be urgently addressed by this government, and the government needs to do this work with us not to us.”
The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it believed the government’s actions were placing people in danger.
A BRIL spokesperson said: “Due to the government’s failure to put people before business, and to listen to advice, a second wave of COVID-19 is now likely.
“The shielded population is being left on the wayside. We are worried about the safety of many disabled and chronically ill people.
“BRIL have not seen any evidence from the government that suggests that it is safe to accept or follow this new guidance.
“They have not consulted anyone at all, evidence has been ignored and the information is not in easy read or other accessible formats.”
BRIL said the guidance had been changed without warning or consultation, that GPs, hospitals and social care services had not been informed, while the government had ignored evidence from its own scientists, doctors and public health professionals.
BRIL said the guidance was “unclear, confusing and contradictory”, and added: “Despite their promises, they have changed ‘the rules’ for people at the highest risk, at the same time as efforts to keep people safe seem to be being abandoned.
“Schools are being pressured to re-open and people are being forced into workplaces, even though the number of people dying and catching the virus is still high.”
Jeff, who is shielding, has told BRIL he does not think the guidance should have been changed, and that he would not be altering his behaviour until he was sure there was not going to be a second wave of infections.
Caroline, a BRIL member, said she feared the move would mean “carers and people supporting people who were shielded could now be forced into prioritising their jobs over their family and friends’ safety”.
Disability Rights UK (DR UK) said any decisions had to be taken by the person who was shielding and not by the government.
Fazilet Hadi, DR UK’s head of policy, said the new advice appeared to be in “direct contravention” of guidance issued last month.
She said it was “imperative” that the government continued to give people the choice to continue to shield if they were advised to do so by their healthcare professionals.
She said: “The government has started to prepare the nation for a winding down of support services this autumn.
“This cannot be a blanket approach including those who still need to shield.
“Vital supply schemes for food and medicines, along with furlough, need to continue to be offered until such time as it is 100 per cent safe for vulnerable people to resume normal life activities.”
Vicky Foxcroft, Labour’s shadow minister for disabled people, who is shielding at home, said she also had concerns about the government’s advice.
She said it had not been reassuring that news of the change had been released at 11pm on a Saturday night, just a day before it came into force.
Foxcroft said she had not yet left her home, three days after the government altered its advice.
She said: “I want to hear scientists say it’s safe. Unfortunately, I’ve heard too many say that out of all of the changes [to ease the lockdown] the one they think is the worst is this one.
“I think we need to hear more from scientists. People want to make informed decisions.”
But she said she understood that others who have been shielding will want to take the risk and take some outdoor exercise, and she added: “I am lucky, I have got a garden. I can’t imagine what it is like if you haven’t got a garden.”
Disabled campaigner Fleur Perry was among those disabled people who have been shielding throughout the 10 weeks who said they did not believe it was safe to follow the government’s new advice.
She said: “I’m not going anywhere yet, as I don’t feel that it’s safe for me.
“I haven’t seen any evidence to justify this change, and although the number of cases is on a slow downward trend, we don’t yet know the impact of schools and businesses beginning to reopen.
“Some commentators have predicted a second wave, and I don’t want to be part of it.
“Also, the way we avoid a second wave is by not going back to business-as-usual too soon.
“By not visiting family and friends yet, I’m helping them to stay safe.
“I miss them, but I want this to be over, as quickly as possible, and so I’m going to carry on doing everything I can not to catch the virus or spread it.”
She said another safety concern was that various healthcare policies which appear to be discriminatory are still in place.
She is still waiting for NHS England to publish a new policy on hospital visitors so that it no longer discriminates against disabled people, following separate legal actions taken by Perry and fellow disabled campaigner Mark Williams.
She said: “If I suddenly became unwell, particularly during the second wave, I do not feel certain that I could access treatment safely on an equal basis with everyone else.
“I don’t want to increase my risk of being in a situation where I have to discuss legal arguments for my right to treatment from a hospital bed.”
Disabled campaigner and retired Paralympian Chris Channon – who has been self-isolating, although he is not in the group who have been told to shield – was another who said he would be ignoring the government’s advice.
He said: “I just don’t trust this government anymore.
“They released this announcement at the weekend without any scientific evidence or medical advice for specific conditions.
“All this when the infection rate remains high and the daily death toll is still in the hundreds.
“I think there will be a second wave and for that reason I’m staying in.”
Baroness [Jane] Campbell, a disabled crossbench peer, said she had “mixed feelings” about the new guidance.
She said it made it easier for some disabled people to take responsibility for their own lives and to “make a personal judgement call about when to go out and when not to”.
She said: “Nobody is forcing us to go out and about or meet another person.
“I can see the mental health benefits for those who live alone and feel a heavy burden of isolation.
“Personally, I am happy to go for a walk in the park or meet a friend in the garden.
“I am not happy to go shopping, or anywhere else that would require me or my personal assistant to touch anything somebody else has.
“Having read the scientific information, I am satisfied that it is a lot harder to catch the virus when outside in an uncrowded space.”
But she said she did not want the government to use the new advice as an excuse to deny disabled people the protective equipment they needed or other support, such as assistance with shopping or food parcels.
And she said she wondered why the government had suddenly changed its advice when it was previously assumed that she and others would have to shield for far longer.
She said: “What has changed their minds? The scientific advance or something more worrying?
“I don’t like to think that we are seen as the expendables. Like those in care homes…”
She added: “What really worries me, is children returning to school from today.
“Many personal assistants, including two of my own, have children.
“I can easily see the small ones bringing home the virus and then the parents passing it on to us.
“With up to two weeks before symptoms, it’s in the house before you detect it.”
Disability Labour said it was “both dismayed and frightened by the actions of Boris Johnson in ignoring the science and putting political expediency before people’s lives”.
Fran Springfield, its co-chair, was also another disabled campaigner to raise concerns about the return to school of many pupils this week.
She said: “Whilst we are now allowed out, in restricted circumstances, many of us are too frightened to leave our homes.
“The re-opening of schools has seen many parents reluctant to send their children back, because of the difficulties of ensuring that young children observe both social distancing and hygiene precautions.
“For parents with disabilities or those who have children or family members who are shielding, this risk of a child unwittingly bringing back COVID-19 from school is a risk too far.
“We have seen what has happened in care homes, no or little personal protective equipment, people discharged from hospital without being tested and many residents dying of COVID-19 who are not counted in the stats because of lack of testing.”
The disabled people’s organisation Disability North said the change in guidance had come at short notice.
Vici Richardson, Disability North’s community care and personalisation advisor, who blogged the day before the government announcement about her 17-year-old disabled son’s experience of shielding, said some disabled people she and colleagues had spoken to had discussed the shielding issue with their healthcare professionals and had “taken safe steps to access the outdoors” before the new guidance was issued.
She said: “Many felt comfortable doing this whilst the lockdown restrictions remained in place.
“Now we see pictures in the media of busy parks and beaches, many people are now understandably wary about how safe it is outside.
“Whilst we welcome advice that those in the shielded category can now leave their homes for some fresh air, we would advise that if anyone is not feeling comfortable about this to have a discussion with their healthcare professional.
“For anyone leaving their home we would strongly encourage them to follow the guidance on social distancing, avoid busy places and practice good hygiene.”
She was another to warn of the fear that, as larger parts of society opened up, those in the shielded category would be expected to return to work.
She added: “The government should be consulting and planning with disabled people and shielders on how best to ease these restrictions.”
Communities secretary Robert Jenrick defended the government’s move.
He said: “Those shielding from coronavirus have made huge sacrifices over recent months to protect both themselves and the NHS – they deserve our thanks and our support for their efforts.
“Incidence rates of coronavirus are now significantly lower than before these measures were put in place.
“That’s why we are focused on finding the right balance between continuing to protect those at the greatest clinical risk, whilst easing restrictions on their daily lives to make the difficult situation more bearable – particularly enabling the contact with loved ones they and we all seek.
“We will now be providing regular updates to the shielded to guide them through the next phase and we hope, to better and less restrictive times.
“In the meantime, we will continue to provide the support that the shielded in our communities need.”
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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