Why many are still shielding…. With no end in sight

Some households are still in unofficial lockdown because they just don’t feel safe enough to go out, says BBC disability correspondent Nikki Fox.

During lockdown, a very good friend of mine called me out of the blue. We were talking about this strange new world and the sadness we felt about all the lives lost to this hideous virus.

Then she said something that threw me at first, although now it makes complete sense.

My friend deals with anxiety on a daily basis and she explained to me how lockdown was doing wonders for her. She felt much less anxious. She liked being told what she could and couldn’t do. My friend felt safe at home with her family, happy to play by someone else’s rules for a time… it made the pressures of her everyday life disappear.

Now most people I spoke to at the time were thrown by the sudden change to our everyday lives. Lockdown piled on the pressure for most people I know and for many deaf and disabled people, there were some very pressing, immediate concerns that needed addressing.

How do we do the things we need to do, to get through each day? Will our personal assistants, who help disabled people with everyday tasks, want to work through lockdown? Do we want them to work? How do we get hold of some personal protective equipment (PPE) for those helping us? How do blind people nip to the shops to get food when they’re unable to socially distance and not all online shopping websites are fully accessible? What about deaf people… how do you lip-read when everyone is wearing a face mask?

These problems impacted many disabled people whether they were told to shield or not.

Nikki Fox

Nikki started working as the BBC’s Disability Correspondent in 2014. A year later she joined the presenting team for the BBC’s flagship consumer rights programme Watchdog. She continues to work alongside her mate Matt Allwright on the show, which is now part of The One Show.

A former supermarket checkout operator, Nikki made a series for BBC One with Greg Wallace called Supermarket Secrets. On Celebrity Mastermind, she got every single question bar one correct on her specialist subject, Kate Bush.

That brings me on to the not-so-catchy, controversially titled, Extremely Clinically Vulnerable list, made up of more than 2.2 million people. Not all have a disability – this group also included people going through certain cancer treatments, those on immunosuppressants and people with severe asthma, for example.

Everyone on the list was told stay put at home, to not go out, not even for exercise.

You only have to do a quick internet search to get your head around the fact that this list was not without its problems. Many believed they should have been on it. Some were on it when they shouldn’t.

My sister Rachel and I are the perfect example of this. As far as we know we have the same disability, muscular dystrophy. I wasn’t sent an official letter but Rachel was. We think it’s probably because she works too hard, doesn’t take her vitamins and has a habit of letting colds turn into chest infections, whereas I am practically Gwyneth Paltrow.

Despite its well-documented challenges, to put it mildly, the shielding list did bring comfort to many.

But on 1 August, the national shielding schemes ended in England and Scotland, and on 16 August in Wales. And with that went most of the protections the shielding scheme offered.

Despite this, thousands are still in unofficial lockdown because they just don’t feel safe enough to go out.

Carolyn Brathwaite has been isolating with her daughter Azaria and the rest of the family since mid-March because Azaria has an ultra-rare genetic condition called NAA10 syndrome. It’s so rare only a handful of people in the world have it and as a result, very little is known about it.

Azaria has complex disabilities and struggles to understand the world around her. There was no way the family were taking any chances with Covid-19. In fact, the moment Carolyn heard about coronavirus she took both her daughters straight out of school and bulk-ordered all of Azaria’s medication.

Now I know Carolyn, she’s my best mate’s cousin. I’d love to have met up with her in person to talk about shielding – but only immediate family and Azaria’s carer have entered their house since the start of lockdown.

She tells me two of Azaria’s hospital consultants advised Carolyn to shield her daughter until there’s a vaccine.

When I ask her to explain what that’s like – to carry on in isolation, albeit unofficially, with bare minimum support, whilst others enjoy greater freedoms – she says: “I think everyone has these worries about this virus but the extra step and intensity that we have to protect her is really hard. Nothing comes into the house until we have cleaned it or quarantined some things we don’t need to use straight away.”

I’ve seen what Carolyn does. She sent us home videos of her spending hours scrubbing her food shop on her doorstep. She won’t allow a box of cereal to enter her home until every inch of it has been sanitised.

What makes life so tough now is the family are without all the support and therapies Azaria needs and the pressures of constant care, coupled with the inability to explain to your daughter what’s going on in the world, why it’s suddenly changed, why she’s no longer going to school, to the park for a swing. Why her therapists are all on a computer…

Carolyn tells me it was “without a doubt one of the hardest periods they’ve been through as a family”.

And there’s no real end in sight. As the world starts to open up, they remain isolated. And that’s hard.

Like many people who were told to shield, the food parcels were a huge help, especially in the early days when there was more chance of me running a marathon than of getting an online food slot.

But what really made a difference to Carolyn and her family was that being an official shielder, meant that her hubby was able stop going to work and for a short time, Carolyn felt safe.

Now shielding’s over, however, the family have to make their own decisions on how best to stay safe. That support has gone. Carolyn’s husband has returned to work, but there is still a choice to be made about whether the girls should go back to school.

And they’re not alone…

I also meet a brilliantly positive young man called Ross Lannon. He kept himself thoroughly entertained during lockdown by creating a coronavirus parody of Vanessa Carlton’s hit song A Thousand Miles. It’s a lot of fun. As is he.

Ross has spinal muscular atrophy and was sent an official shielding letter. Even though shielding has ended, he still doesn’t feel safe enough to start venturing out. The self-confessed “foodie” would love to go to a restaurant, but the fluctuating infection rates don’t fill him with enough confidence to eat out.

The end of shielding, however, brought about bigger problems for Ross. He was forced to make a difficult decision – go back to work and risk his health, or leave his job and stay safe.

He tells me: “It’s the worst position I think anyone could be in because as a disabled person I pride myself on being employed for the past eight years…. Without any protection now with shielding stopping I don’t really have a leg to stand on, it was either you go back to work or you leave.” In the end he felt he had no choice other than to leave.

The former chairman of the Equality and Human Rights Commission, David Isaac, felt so strongly about this that he spoke to me just before he stood down.

‘I am anxious that the shielding provisions came to an end very abruptly,” he said.

“There’s not enough info about the future, the food parcels have stopped and we urgently need to address that because we can’t leave that group of people isolated and high and dry.”

The UK government has defended its decision to pause shielding. It told us average infection rates remain sufficiently low and that its response has been proportionate.

It brings me back to what my friend with anxiety told me -in extraordinarily difficult times, for some, there’s a comfort in being told what you can and can’t do. Disabled people are used to risk-assessing their everyday lives but with something as terrifying as a virus that could end your life, many would welcome some more guidance and a system in place to help. To keep you fed, to back you up if you can’t work.

For the many thousands still self-isolating, the only thing they can rely on is their instincts. As Carolyn says, “It’s a really hard balance you know you find yourself weighing up quality of life versus risk to life.”

She’s not alone in thinking this and like many others, until there’s a vaccine, there’s no end in sight.