Disabled people have questioned the governmentâs 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 â and who had been expecting to continue having to do so until the end of June at the earliest â could now leave their homes for outdoor exercise.
The move was announced despite the pandemic âalert levelâ remaining at level four, the same level as on 10 May.
The new guidance for the 2.2 million people seen as âclinically extremely vulnerableâ stresses that they should continue to âtake precautionsâ and âmaintain strict social distancingâ.
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 peopleâs organisations and disabled campaigners have raised concerns about the governmentâs decision to update the guidance.
Svetlana Kotova, director of campaigns and justice for Inclusion London, said: âThe situation does not suddenly become safer just because the government says so.
âWe 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.
âWith all that has happened to disabled people during this emergency, many of us are already finding it difficult to trust and follow the governmentâs advice, especially when it is issued out of the blue, without warning or consultation.
âThis 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.
âLonger 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.â
The grassroots disabled peopleâs organisation Bristol Reclaiming Independent Living (BRIL) said it believed the governmentâs actions were placing people in danger.
A BRIL spokesperson said: âDue to the governmentâs failure to put people before business, and to listen to advice, a second wave of COVID-19 is now likely.
âThe shielded population is being left on the wayside. We are worried about the safety of many disabled and chronically ill people.
âBRIL have not seen any evidence from the government that suggests that it is safe to accept or follow this new guidance.
âThey have not consulted anyone at all, evidence has been ignored and the information is not in easy read or other accessible formats.â
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 âunclear, confusing and contradictoryâ, and added: âDespite their promises, they have changed âthe rulesâ for people at the highest risk, at the same time as efforts to keep people safe seem to be being abandoned.
âSchools 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.â
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 âcarers and people supporting people who were shielded could now be forced into prioritising their jobs over their family and friendsâ safetyâ.
Disability Rights UK (DR UK)Â said any decisions had to be taken by the person who was shielding and not by the government.
Fazilet Hadi, DR UKâs head of policy, said the new advice appeared to be in âdirect contraventionâ of guidance issued last month.
She said it was âimperativeâ 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: âThe government has started to prepare the nation for a winding down of support services this autumn.
âThis cannot be a blanket approach including those who still need to shield.
âVital 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.â
Vicky Foxcroft, Labourâs shadow minister for disabled people, who is shielding at home, said she also had concerns about the governmentâs 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: âI want to hear scientists say itâs safe. Unfortunately, Iâve 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.
âI think we need to hear more from scientists. People want to make informed decisions.â
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: âI am lucky, I have got a garden. I canât imagine what it is like if you havenât got a garden.â
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 governmentâs new advice.
She said: âIâm not going anywhere yet, as I donât feel that itâs safe for me.
âI havenât seen any evidence to justify this change, and although the number of cases is on a slow downward trend, we donât yet know the impact of schools and businesses beginning to reopen.
âSome commentators have predicted a second wave, and I donât want to be part of it.
âAlso, the way we avoid a second wave is by not going back to business-as-usual too soon.
âBy not visiting family and friends yet, Iâm helping them to stay safe.
âI miss them, but I want this to be over, as quickly as possible, and so Iâm going to carry on doing everything I can not to catch the virus or spread it.â
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: âIf 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.
âI donât 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.â
Disabled campaigner and retired Paralympian Chris Channon â who has been self-isolating, although he is not in the group who have been told to shield â was another who said he would be ignoring the governmentâs advice.
He said: âI just donât trust this government anymore.
âThey released this announcement at the weekend without any scientific evidence or medical advice for specific conditions.
âAll this when the infection rate remains high and the daily death toll is still in the hundreds.
âI think there will be a second wave and for that reason Iâm staying in.â
Baroness [Jane] Campbell, a disabled crossbench peer, said she had âmixed feelingsâ about the new guidance.
She said it made it easier for some disabled people to take responsibility for their own lives and to âmake a personal judgement call about when to go out and when not toâ.
She said: âNobody is forcing us to go out and about or meet another person.
âI can see the mental health benefits for those who live alone and feel a heavy burden of isolation.
âPersonally, I am happy to go for a walk in the park or meet a friend in the garden.
âI am not happy to go shopping, or anywhere else that would require me or my personal assistant to touch anything somebody else has.
âHaving read the scientific information, I am satisfied that it is a lot harder to catch the virus when outside in an uncrowded space.â
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: âWhat has changed their minds? The scientific advance or something more worrying?
âI donât like to think that we are seen as the expendables. Like those in care homes…â
She added: âWhat really worries me, is children returning to school from today.
âMany personal assistants, including two of my own, have children.
âI can easily see the small ones bringing home the virus and then the parents passing it on to us.
âWith up to two weeks before symptoms, itâs in the house before you detect it.â
Disability Labour said it was âboth dismayed and frightened by the actions of Boris Johnson in ignoring the science and putting political expediency before peopleâs livesâ.
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: âWhilst we are now allowed out, in restricted circumstances, many of us are too frightened to leave our homes.
âThe 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.
âFor 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.
âWe 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.â
The disabled peopleâs organisation Disability North said the change in guidance had come at short notice.
Vici Richardson, Disability Northâs community care and personalisation advisor, who blogged the day before the government announcement about her 17-year-old disabled sonâs experience of shielding, said some disabled people she and colleagues had spoken to had discussed the shielding issue with their healthcare professionals and had âtaken safe steps to access the outdoorsâ before the new guidance was issued.
She said: âMany felt comfortable doing this whilst the lockdown restrictions remained in place.
âNow we see pictures in the media of busy parks and beaches, many people are now understandably wary about how safe it is outside.
âWhilst 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.
âFor anyone leaving their home we would strongly encourage them to follow the guidance on social distancing, avoid busy places and practice good hygiene.â
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: âThe government should be consulting and planning with disabled people and shielders on how best to ease these restrictions.â
Communities secretary Robert Jenrick defended the governmentâs move.
He said: âThose shielding from coronavirus have made huge sacrifices over recent months to protect both themselves and the NHS â they deserve our thanks and our support for their efforts.
âIncidence rates of coronavirus are now significantly lower than before these measures were put in place.
âThatâs 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 â particularly enabling the contact with loved ones they and we all seek.
âWe 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.
âIn the meantime, we will continue to provide the support that the shielded in our communities need.â
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
4 June 2020. News provided by John Pring at www.disabilitynewsservice.com