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Disabled people who have been shielding from coronavirus since March are expressing significant doubts about government advice that says that – from Saturday (1 August) – they will no longer need to do so.
The government announced on 22 June that the 2.2 million people in England who had been placed in the “clinically extremely vulnerable” group would no longer need to shield from 1 August, although they should continue to follow strict social distancing measures.
It also said that its shielding support package – including free deliveries of food boxes, and medicine deliveries by community pharmacies – would end tomorrow (31 July).
And those who were shielding but could not work from home were told they could return to their jobs from Saturday (1 August) if their workplace was “COVID secure”.
In the wake of the 22 June announcement, disabled people and disabled people’s organisations told Disability News Service (DNS) that the decision to further ease measures that had been protecting hundreds of thousands of people with impairments and long-term health conditions had left them “stunned and anxious”.
Now, with 1 August just two days away, DNS has asked the same disabled people and DPOs whether their views have changed since late June.
But with the first suggestions that cases of COVID-19 are slowly beginning to creep upwards again across the country, they have expressed significant concerns about the end of the support package and the suggestion that they and others can now stop shielding.
Fazilet Hadi, head of policy for Disability Rights UK (DR UK), said last month that it was not right that those who had been shielding should be asked to “choose between their life and their livelihood” from 1 August.
This week, she said DR UK remained “extremely concerned” about the government’s “blanket approach to lifting shielding”.
This means, she said, that doctors cannot recommend that shielding continues in particular cases; there are no exceptions for those shielders who would have to use public transport if they returned to work; and there is no guidance on “what happens if the workplace cannot be made safe and working from home is not an option.
She also pointed out that there are no special provisions for those living in areas where the reproduction rate of the virus is high.
She said: “It is also unclear what support and protection will be available to people who need to shield in the situation of future local lockdowns.”
She added: “The virus transmission rate has gone down and many of us have calculated that the risk of being out and about is worth taking.
“However, for people who are clinically susceptible, this calculation may well be different, and resuming ‘normal life’ might still be a risk they don’t feel they can take.”
The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) warned last month that it was “very concerned” that the government’s plans had been introduced “against scientific advice and without any consultation with disabled and chronically ill people”.
This week, although welcoming the potential positive impact on many people’s mental health of being able to leave their homes for the first time in months, BRIL still has serious concerns.
It believes the guidance on being allowed to mix with small groups outdoors “makes no sense, as we have no control over who else those people have met”, while disabled people who receive support in their own homes are now at greater risk because these care workers will have been mixing with a wider group of people than earlier in the crisis.
It is also concerned about shielders being forced to return to work and potentially being penalised by employers if they refuse to do so.
BRIL said it was concerned that the end of the government’s food box scheme could leave some disabled people without food, “as supermarkets have still not sorted out delivery slot shortages, so people will be genuinely scared that going to shops at the same time as everybody else as all the other restrictions are lifted, and with people not following guidance to wear masks, is just too risky”.
A BRIL spokesperson said: “People of colour and disabled people have been dying and have been impacted harder than other people.
“The government know this, but have done next to nothing about it.
“The message that many shielders, disabled people and people with chronic/long-term physical and mental health conditions get from the government is that they have been forgotten. A lot of people who are shielding are confused and scared.
“When the government are forced into remembering us, we are seen as a problem, a burden. There has been no attempt to involve disabled people in policy decisions.
“As a result, most of the government’s information and guidance about COVID has been late, inaccessible, inaccurate and contradictory.
“BRIL can’t think of anyone who is shielding or a deaf, disabled or chronically ill person that trusts this government.”
Vici Richardson, community care and personalisation advisor for the disabled people’s organisation Disability North, said she was not as positive or confident as she was a month ago, after hearing from disabled people in recent days.
She said: “I think there are a lot of people who remain distrustful of general advice and there is still an awful lot of anxiety, even from disabled people who are not on the shielding list.”
Some of those who have been shielding are about to return to work and are “very apprehensive”, she said.
Others feel there needs to be a return to some degree of normality and that “if we can have a bit of normality now it may make the winter easier if we have to go back into shielding”.
She said: “I have heard from a lot of parents, though, who are shielding their children/young people and they are extremely concerned about another spike come autumn/winter.
“Many are now absolutely exhausted from taking on education, care and the therapies and are worried about how they would manage a second time.”
She added: “I don’t think I have spoken to anyone over the last few months who has been advised to shield who is feeling confident about resuming a life on the outside.
“For me personally, we are going to do what we can to ensure there is a little bit of freedom and normality for our [disabled] son whilst keeping the risk down and ensuring that he is strong enough emotionally to get through the winter period if we have to fully shield again, which we have been told is very likely.”
Kathy Bole, co-chair of Disability Labour, said her thoughts on shielding had not changed in the last five weeks.
She said: “I and indeed most of the disabled people I know are still planning on shielding.”
Like DR UK, she fears what will happen after 1 August to shielders who are told to return to their offices by their bosses.
She said: “People may not be able to protect themselves.
“If a boss wants someone to return, it isn’t clear whether the employee has any route to refuse to return on the basis of health risk.
“I am not sure if there is any negotiation possible. I think that will be very tricky and those in low-paid jobs will not have the option.
“This is why people should belong to a union.”
Bole added: “I know we haven’t seen a second spike yet, but I believe that it will come.
“My feeling is people will become complacent and more people will get sick and more will die.
“Many disabled people I have spoken to are planning on staying in slightly modified shielding, only going out if absolutely necessary.
“They will continue to shield until a vaccine is found.”
She fears that this new environment, with supermarkets no longer having to reserve shopping slots for those in vulnerable situations, will mean disabled people “will once again be left behind”.
Her fellow co-chair at Disability Labour, Fran Springfield, said: “I’m not stopping shielding and the majority of the disabled people I know are not either.
“With the likelihood of a second wave – going out does not feel safe.
“My partner, who is less at risk than I am, is reporting back that many shops in London are not endorsing mask wearing and there seems to be a general reluctance to challenge those who don’t social distance either. So I’m going nowhere!”
Last month, disabled campaigner Fleur Perry said she would look at local and national data before making any decisions on whether to stop shielding on 1 August, and would “probably err on the side of caution”.
Today (Thursday), she said: “I’ve been unable to locate the data and rationale behind ending shielding.
“Yes, the number of cases has dropped in the past few months, but we’re still in a situation where hundreds of people are dying every week.
“A second wave this summer has not been ruled out.
“Do I feel safe to go where I need to go and do what I need to do? No, and it may be a while yet for me.”
Disabled campaigner and retired Paralympian Chris Channon, who himself is on the “clinically extremely vulnerable” list, said his views had not changed and he was still “petrified”.
He said: “The virus is still active, with the World Health Organization (WHO) saying that the number of people infected globally is increasing by a million every four days.
“The virus is not defeated, and neither does it obey government ministers.
“I will never feel safe until I’m covered by an effective vaccine.”
Meanwhile, new figures from the Office for National Statistics (ONS) show that the proportion of those in the clinically extremely vulnerable group who had strictly followed the shielding instructions drifted downwards in the week after the government’s 22 June announcement.
For data collected between 9 and 18 June, 83 per cent of them received no visitors except for support with personal care. But that fell to 77 per cent, for data collected between 24 and 30 June.
Over the same time period, the proportion completely following shielding guidance fell from 63 per cent to 58 per cent.
Tim Gibbs, from the ONS public services analysis team, said: “Overall we have seen that the percentage of the shielding population who have been following government guidance has fallen as government restrictions eased for the general population at the end of June.”
The figures also showed that younger disabled people have been more likely to experience a worsening of their mental health since they were advised to shield.
For those aged 75 and over, 24 per cent said their mental health had become slightly or much worse, while for those aged 30 to 39, 47 per cent said their mental health had worsened.
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
30 July 2020.
News provided by John Pring at www.disabilitynewsservice.com
We are happy to have received some funding from the National Institute for Health’s School for Social Care Research (NIHR SSCR). The study will explore how disabled young adults who employ personal assistants (PAs) experience and understand the support they receive from the perspective of their sexual and gender identities.
The research will also investigate how PAs and social care services can be made more aware of disabled young adults’ support needs in relation to sexuality and gender. This will include looking at what information and support resources might help disabled young adults and their PAs talk about sexuality and gender as part of their care and support arrangements.
The research will be led by Ned Coleman-Fountain who is based at Northumbria University. Disability North in Newcastle-upon-Tyne, who are also part of the team, will support a study of the experiences and training needs of PAs. Co-investigators also include Alex Toft at Nottingham Trent University, David Abbott of the Norah Fry Research Centre at Bristol University, and Bryony Beresford from the Social Policy Research Unit at the University of York. An experienced researcher will be recruited into the team to support the study.
The research team are committed to user participation in research. A project advisory group of disabled young adults will support the co-production of all elements of the study that build towards the research aims. A call will be put out shortly via social media for disabled young adults who are interested in getting involved in the project to get in touch.
Ned Coleman-Fountain (Project PI) said: “This is an opportunity to explore what is going on for young adults who employ personal assistants. Sexuality and gender are important parts of all young people’s identities, and we want to find out what can be done to improve social care in a way that ensures disabled young adults are able to live full lives. At this current moment of uncertainty, we hope the project can make sure that disabled young adults’ voices are heard on their experiences.”
Victoria Armstrong (Disability North) said: “As a user led organisation, Disability North recognise the value in exploring important issues relating to sexuality which often go undiscussed. This project will help us understand the issues more deeply and will lead to action to enrich the lives of disabled people employing PAs in the future.”
For more information on the research, you can contact Ned: firstname.lastname@example.org
The government’s decision to further ease measures that have been protecting hundreds of thousands of disabled people from coronavirus since late March has left many of them “stunned and anxious”, say campaigners.
The 2.2 million people currently described as “clinically extremely vulnerable” have been told that initial changes, allowing them to spend time with more friends and family, will be introduced from Monday 6 July, while they will be able to stop shielding completely from the beginning of August.
The government’s shielding support package – including free deliveries of food boxes, and medicine deliveries by community pharmacies – will stop at the end of July, ministers said this week.
And those who were previously shielding and cannot work from home will also be told they can return to work from 1 August if that workplace is “COVID secure”.
But just as with the previous decision to ease guidance for shielders in late May, the government’s decision has been met by disabled people with distrust and concern, particularly as the prime minister also announced that the social distancing two-metre rule will be eased to just one metre from 4 July.
Fazilet Hadi, head of policy for Disability Rights UK, said many of those shielding had been left “stunned and anxious” by the government’s “one size fits all approach”.
She said: “For many, catching the virus could result in death or a serious diminishing of their quality of life.
“Why are people being asked to take this risk when we don’t have the evidence of the loosening of restrictions on the R rate [how infectious the virus is], or an effective test, trace and isolate service?”
She said the government had advised shielders they should still remain cautious because of the risk of severe illness, but at the same time was still reducing the social distance rule from two metres to one.
It is also removing the financial protection of statutory sick pay for those who cannot work from home, and removing free home deliveries of food parcels and medicines.
Hadi said: “Shielding has not been remotely comfortable for most people, but the one thing that it assured was the minimum risk of death from coronavirus.
“On the 1 August, people are being forced to choose between their life and their livelihood. This isn’t right.”
Vicky Foxcroft, Labour’s shadow minister for disabled people, who herself has been shielding at home during the pandemic, called for urgent clarity on the science behind the decision.
She said: “The government needs to provide clear risk assessments to ease anxiety, following awful communication to date.
“Questions remain around the timing of this easement, especially while the government is considering reducing social distancing to one metre and opening society up further.”
She questioned the prime minister about the decision on Tuesday, asking if he would commit to improving communication with shielded and disabled people, and passing on the concerns of DR UK that support for shielded people was being removed too quickly.
Boris Johnson appeared to ignore the question, telling Foxcroft the government wanted a situation where the number of cases was so low that the shielding programme “no longer needs to continue in its current way”, and adding: “Too many elderly, vulnerable people have been kept in close confinement for too long, and we must help them to a new way out.”
The grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL) said it was “very concerned” that the government’s plans had been introduced “against scientific advice and without any consultation with disabled and chronically ill people”.
Its members have told BRIL that advising people to stop shielding while relaxing other measures was “dangerous”.
BRIL pointed to calls from health leaders to prepare for a second wave of COVID-19, and it said many disabled people would continue to shield despite the government’s announcement.
A BRIL spokesperson said: “Disabled and chronically ill people – both those on the official list advised to shield and those who have been left off – have been forgotten.”
One BRIL member said: “I can’t understand how they can be changing everything all at once.
“The government’s priority seems to be getting people shopping, stopping sick pay and forcing people back into work, regardless of whether it is safe or not.
“The messages seem to be: ‘Tough it out – stop being wimps.’ It’s just cruel.
“Shielders are now being constructed as ‘cowards’ hiding from a ‘non-existent’ threat.”
Another member said: “It seems that regulations have been downgraded to ‘advice’.
“The government are washing their hands of any responsibility.”
Beth Richards, a researcher and actor with learning difficulties, said she had found government guidance complicated, and was disappointed that making information accessible had been left to charities and self-advocacy groups.
She said: “It’s like they don’t care about us.”
Disability Labour said the government’s decision was “extremely concerning” and showed again that “profit is being put before people”, adding: “Talking to our members, it seems that very many will not be altering their current habits and only going out when absolutely necessary.”
It pointed out that the virus was still “entrenched” in the UK and was still killing people, while there have been outbreaks in the meat processing industry, with the NHS in at least one region reportedly preparing for a second wave more than double the size of the first.
It warned that many people were disregarding advice to wear masks, and many disabled people cannot wear masks for impairment-related reasons.
It also warned of the “huge pressure” on disabled people to return to work, with concerns that those too much at risk from COVID-19 could be sacked or made redundant.
Kathy Bole, co-chair of Disability Labour, said: “Disabled people should be trusting the doctors and the scientists – not this government.”
Her co-chair, Fran Springfield, said: “I worry for those people who have been relying on food parcels being delivered; they will be forced out to shop and fend for themselves.
“As a nurse, I’m concerned that there is no news of a vaccine yet. Once that’s available and I’ve had my jab, then I’ll feel safe to go out again, in the way I did before lockdown.
“I don’t feel safe now and these latest announcements haven’t changed that.”
Disabled campaigner and retired Paralympian Chris Channon, who is on the “extremely clinically vulnerable” list, said he found the announcement “confusing”.
He said: “If we were considered vulnerable to the virus at the beginning of the crisis then we’re still very much vulnerable to it now.
“The truth is that the government now considers the rate of transmission is low enough to end the lockdown which obviously takes the pressure off the exchequer and the country can start functioning again.
“But again, the risk is still there and still very real and will continue to be so until an effective vaccine is developed and made available.”
Disabled campaigner Fleur Perry, who has also been shielding, said: “When we get to August, I’m going to look at the local and national data myself before making any decisions, and will probably err on the side of caution.
“Then I’ll gradually go to vital places, probably in full PPE [personal protective equipment] if it’s a medical setting.
“There does seem to be a lack of guidance which acknowledges those who need personal assistants or other forms of support.
“I have a team of more than five people who assist me with care needs 24/7 – does this mean I can safely meet with another five people? Probably not.
“I am concerned that there will be times when I’m expected to go everywhere and will need to explain that though shielding has ended, that doesn’t mean that the risk is zero and that I intend to take every precaution. But it’s got to be safety first, always.”
The disabled people’s organisation Disability North called for more reassurance for those who have been shielding.
Vici Richardson, Disability North’s community care and personalisation advisor, said: “We heard very clearly from the chief medical officer and scientific officer that the virus hasn’t gone away and there still needs to be caution.
“Many of those who have been shielding are understandably anxious about support being withdrawn and the shielding scheme being paused whilst we are still at a level three [pandemic alert level].
“We want to see understanding from employers and an assurance that workplaces will be COVID-19 secure and wherever possible people can remain working from home.
“There needs to be more transparent communication for those shielding on what happens if there are local spikes or a second wave.
“Support will need to continue until people feel ready and assured.
“We would urge anyone in this group to speak with the professionals involved with their medical care and get their advice.”
From 6 July, ministers believe that those who have been shielding will be able to spend time outdoors in a group of up to six people, while maintaining social distancing.
Those who are shielding and live alone or are single parents with children will also be able to mix with one other household, in any setting, from 6 July.
Although some support will be still be available – including priority for supermarket delivery slots and support from NHS volunteers and local councils – free deliveries of food boxes and medicine will stop at the end of July.
Ministers also say that those who have been shielding will be able to take part in activities like visiting shops and places of worship from August.
Although they will be told they should still continue to remain at home as much as possible, minimise contact with others outside their household, and frequently wash their hands, ministers say infections are now low enough for their advice for shielders to be “carefully and safely eased”.
On average, fewer than one in 1,700 people are estimated to have the virus, down from one in 500 four weeks ago, they said.
Health and social care secretary Matt Hancock said that “with infection rates continuing to fall in our communities, our medical experts have advised that we can now ease some of these measures, while keeping people safe”.
Dr Jenny Harries, the deputy chief medical officer, said: “The prevalence of the virus in the community is now lower and chances of getting infected are reduced, so we believe it is the right time to relax some of the advice so people can start to regain a degree of normality once more in their daily lives.
“People should continue to follow social distancing guidance when outside their homes, as well as frequently washing their hands, to minimise the risk of becoming infected.
“We will continue to monitor the evidence closely and adjust the advice accordingly if there are any changes in the rates of infection that could impact on this group.”
*For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
25 June 2020. News provided by John Pring at www.disabilitynewsservice.com