Sally’s 19-year-old daughter, Katie, has a life-limiting disease and had to move into a care home at the end of her first year of university, to shield from coronavirus.

Sally, who lives in Harrogate, told BBC Radio 5 Live Breakfast that she wants to see the rules around care homes changed so that she can hug her daughter again.

Guidance on shielding is being kept under review. People shielding in England and Northern Ireland can spend time outdoors, as long as they continue to follow social distancing rules.

Those shielding in Scotland and Wales can exercise outdoors, either on their own, with their family or with people from another household.

Due to social distancing, the way we travel has changed and for many disabled people the access support they once relied on has changed too.

Here’s the lowdown on what to expect if you’re used to being guided between platforms, using wheelchair spaces on trains or if you’re a guide dog owner wondering whether that old dog will forget his tricks.

Guide dogs

If there’s one type of access worker that doesn’t always follow the rules, it’s guide dogs. So has pawsing their usual routine for three months meant they have lost vital skills?

Pete Osborne from the charity Guide Dogs says while his guide dog has enjoyed playing at home, he’s confident that older dogs won’t forget their training. Recently-qualified dogs, however, may forget some skills.

Owners should “keep things as normal as possible when exercising” to keep skill levels up, he says.

Some transport hubs are adapting their layouts to include one-way systems. So Pete says guide dog owners should ask about any such changes before trying the journey out, because “if your dog’s not familiar with it they can lose confidence”.

Human support is also a worry for some visually impaired people. A recent survey by Guide Dogs found that only 22% of the public would feel comfortable guiding someone – which can involve taking someone’s elbow.

Pete says: “It’s always helpful from a two-metre distance to say ‘Hello, is there anything you need?’ Even though it might be difficult to guide someone, you could watch the road and say when it is safe to cross.”

Even offering a description of the space could help, especially if things have changed.

“Dogs aren’t huge respecters of queues and I’ve heard about dogs treating each person as an obstacle in shops and weaving between them until they’ve reached the front of a queue.”

Between March and June, Guide Dogs paused its breeding programme. Normally about 200 puppies would be born during that time, but because of growing and training time, it will be another 18 months before the charity sees any impact.

Trains

When it comes to rail staff guiding someone with a visual impairment, a layer of material may now be used as a barrier between the guide and the customer, according to the Rail Delivery Group (RDG) whose members include all Britain’s railway companies.

Some staff may also choose to guide from behind or verbally to avoid face-to-face contact,

For those who rely on lip-reading, some staff will wear visors while those in masks will step back two metres to remove their mask and continue the conversation.

Although it’s not essential, passengers are encouraged to plans trips in advance to ensure access requirements can be met.

This may be most useful if you want a wheelchair space on a train, because, according to RDG, a few have been closed due to social distancing in a “very few incidences”.

Ramps, handrails and touch-points will be cleaned regularly. Cash can still be used if needed and crucially, toilets are open.

Transport for London

If you’re a Londoner, or your journey takes you that way, you’ll see all front-line staff wearing face coverings and taxi drivers too. Hand sanitiser is available at tube, rail and ferry stations and on the Emirates Air Line.

You can “turn up and go” without booking access, but if you’re visually impaired you might experience some disruption.

If you’re used to be being guided between platforms, staff will now do so verbally. If you need physical guiding or your route involves an escalator or lift, a taxi will be booked to take you to the next accessible point on your journey.

If you require any form of access, tell staff and and you’ll be able to queue jump, legitimately.

Townscapes

Town and cities may soon look different as councils try to become more cycle and pedestrian friendly.

In London, some streets will be switched to walking and cycling only while others may include buses although those with mobility issues will still have access to these areas, according to the Mayor’s office.

Manchester City Council has made the Deansgate shopping area a pedestrian and cycle haven.

Councillor Angeliki Stogia says disabled people were at the forefront of considerations when the scheme was being planned.

“One of our stipulations was that all disabled bays in the area must remain accessible, via the previous routes used,” she says.

Groups representing disabled people will be asked to feed back on the scheme in the hope it may become permanent.

Cycling

For those who like the wind in their hair, disabled cycling has seen an upsurge in interest, but there are a few things to consider before you don your lycra.

Wheels for Wellbeing which offers people the chance to try accessible bikes – trikes, four-wheels and handcycles – says inclusive infrastructure is not quite there yet

Accessible bikes are often longer and wider than standard two-wheelers, so using cycle lanes or parking can be difficult.

The organisation’s director Isabelle Clement, who uses a handcycle attached to her wheelchair, wants something akin to the Blue Badge Scheme so disabled cyclists have specific parking areas, and are allowed to cycle through pedestrian areas if they’re unable to dismount.

“I can’t leave my £4k hand cycle out on the road because there’s no parking solution and someone will nick it,” she says. “Bikes can be damn right bloody expensive – more expensive than a second-hand car.”

And that’s another problem. Wheels for Wellbeing wants accessible bikes to be available at cycle hire points, and included in personal health budgets – a benefit which enables people to manage healthcare such as booking physiotherapists.

“If you cycled every day you wouldn’t need the physio and you’d keep your heart and lungs in good shape,” Isabelle says.

About 75% of disabled cyclists find it easier than walking because it’s non-weight bearing – but even so Isabelle says a lot of people are surprised disabled people cycle at all.

“That should not be a mind-blowing revelation.”

Face masks

Lastly, the government has made a few exceptions to the mandatory wearing of face masks on public transport.

If you have a disability which means you can’t put on, wear or remove a face covering or wearing one would cause “severe distress” or you are travelling with, or providing assistance to, someone who relies on lip-reading, you do not need to wear one.

The 2.2 million people who have been self-isolating in England during the pandemic will no longer need to shield from 1 August.

From 6 July, they will be able to meet up outdoors, in a group, with up to five others and form ‘support bubbles’ with other households.

The measures can be eased because infection rates are falling, the government says.

Support packages will remain until the end of July to help people transition.

What changes from 6 July?

Those who are shielding and live alone in England – including single parents who are shielding – will be able to create a support bubble with one other household of any size.

This follows the ‘social bubble’ rules which were introduced earlier this month for anyone living alone and single-parent households.

People shielding will also be able to meet in groups of up to six outdoors while maintaining social distancing rules.

What is changing from 1 August?

Extremely vulnerable people who are most at risk from becoming ill from coronavirus will no longer need to shield in England.

That means they can return to work, if they can’t work from home, as long as their workplace is COVID secure.

However, they should still follow social distancing guidelines when outside their homes and wash their hands regularly to reduce the risk of being infected.

The changes mean those shielding will no longer be eligible for statutory sick pay – unless they develop coronavirus symptoms, or someone they know develops symptoms, and they are told to self-isolate and cannot work from home.

Free essential food boxes will stop being delivered, but support from NHS volunteers and local councils is still possible.

They will still qualify for priority slots for online shopping and will be offered help with medicine deliveries and getting to medical appointments.

Why is the advice changing?

The UK government says the advice can be relaxed because the chances of encountering the virus in the community continue to fall – one in 1,700 people are estimated to have the virus now, down from 1 in 500 four weeks ago.

The government says it has worked with clinicians, GPs, charities, the voluntary sector and patient groups on the changes.

But some charities are criticising the relaxing of the advice, saying many of the people they support do not feel it is safe to stop shielding.

“We know how difficult this period has been and the impact shielding has had on many people’s mental health,” says Dr Jenny Harries, deputy chief medical officer.

“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.”

But she added the advice on shielding could change again “if there are any changes in the rates of infection that could impact on this group”.

What was the advice in England?

As the country went into lockdown, around two million people were sent letters by their GPs telling them not to leave home and to avoid contact with others.

This was to protect them from the virus because they were considered to be most at risk from Covid-19.

Among the list of people who should be shielding are solid organ transplant recipients, cancer patients undergoing chemotherapy, pregnant women with heart disease and people with severe respiratory conditions such as cystic fibrosis and severe asthma.

Over half of those shielding are under the age of 70; more than 90,000 are children.

Since the start of June, people shielding in England were told they could go out once a day – to meet one person from another household while adhering to social distancing.

From the beginning of August, that shielding advice is to be completely relaxed.

The NHS will keep the shielded list, in case more advice needs to given to this group in future.

Have things changed in Scotland, Northern Ireland and Wales?

Northern Ireland has already said people will no longer need to shield from 31 July.

But officials say this pausing of the advice will only happen if the rate of community transmission remains low.

People who are shielding and living alone in Northern Ireland will also be able to form a support bubble from 6 July with one other household.

Until then, people shielding across the UK are advised to stay at home as much as possible and to practise social distancing when they go outside.

In Scotland, the advice applies to around 180,000 people and is in place until at least 31 July.

Meanwhile in Wales, almost 130,000 people are shielding and the Chief Medical Officer for Wales says the current guidance runs until at least 16 August.

There’s a new purple wheelie bin on Walthamstow High Street in north-east London, outside No 210, and it’s filling up fast. Michael Armstrong and Louise Craven have just put a bag of books in. “We’ve got several bags from lockdown tidying and we’re going to bring it in one bag at a time,” says Michael. He doesn’t sound like he’s from north-east London. Because he isn’t – he’s originally from California. He came here 40 years ago, “for the weather”, says Craven, his partner, drolly.

Her irony maybe backfires a little today. It’s a glorious day in Walthamstow – the high street is pretty much Sunset Boulevard minus the palms.

Among the books is what Armstrong describes as “some rather odd poetry journals”, a study of American architecture and The Glass Room by Simon Mawer, which they have both read and recommend.

They’re not getting thrown away but recycled, hopefully reread. Because No 210, set between a betting shop and a fish bar, is a charity shop belonging to Scope, the national disability charity. This week, like other non-essential retailers, charity shops in England were able to open for the first time in almost three months, to customers and for donations.

Another bag goes into the purple bin. This one contains a brown jacket from Ben Odamtten, who says it’s too small for him. There’s also a card holder and two pairs of shades in his bag. And I have donated a couple of bags, mostly of outgrown children’s clothes. I wanted to bring the popcorn machine, too, but my family wouldn’t let me. No one needs a popcorn machine.

Scope’s area manager, Lara Woolston, explains the new process. Donations go from the purple bin into heavy-duty bin bags, which are labelled with the date, tied up with giant rubber bands, taken to a room above the store and left for 72 hours to minimise any risk of infection. Safety of staff, volunteers and customers is Scope’s priority, I’m told, often.

The acting shop manager, Celia Mullins, is up here, busy clearing out bays that can be filled in date order. Quarantine for donated clothes, books, CDs, sunglasses etc is going to be stricter and better organised than it is for arrivals at UK airports. There’s already a lot of stuff up here, but if it fills up there is an overflow storage unit in Barking.

They have done a lot on the shop floor, too, putting in all the necessary safety measures. It has all been unmuddled and decluttered; the rummage boxes – with things, such as toys, that kids would play with – have been removed from the floor. “We’re trying to limit the number of times people need to touch things,” says Woolston.

Fitting room? Not any more – it’s taped off like a crime scene. Buy it; if it doesn’t fit, bring it back. And there’s a one-way system, with arrows on the floor, plus “sneeze screens” at the tills. Customers are offered hand sanitiser along with a mask and gloves on entering. “It’s been a long time since we’ve been able to welcome our wonderful community through our doors,” says Woolston. For the moment though, they are only allowing one person – or one family – in at a time.

Scope’s Walthamstow shop has lost roughly £33,000 during lockdown. In normal times all the charity’s 207 shops generate between £1.7m and £1.9m a month. In April, with none open, the charity’s income was 85% down on the same period last year. It has managed to make some money through online sales, and will do more of that in the future.

It’s the same story across the whole sector: the pandemic makes no allowances for good causes. The chancellor Rishi Sunak’s £750m bailout fund for charities didn’t come close to replacing lost income, not just because of shops being closed but also because of the cancellation of other means of fundraising – the London Marathon and the Great North Run to name two massive ones. Street-funding, too, as well as the possibility that people are more likely to give to NHS charities at the moment. A study published last week found that one in 10 charities faces bankruptcy by the end of the year as they struggle with a £10bn shortfall caused by a perfect storm of massive income reduction and rocketing demand for their services. “It’s been a devastating loss of income,” Scope’s head of retail, Debbie Boylen, tells me over the phone. “Because it’s been at a time when disabled people need us the most.”

I could have spent the morning at any charity shop and the picture would have been similar. I’ve come to Scope simply because it’s where we usually bring stuff to. That said, my local branch isn’t among the first wave of 16 shops around the country opening as lockdown eases, so I’ve travelled across London. Hence just the two bags: there’s plenty more to come at home, under the stairs, from our own Covid clearout. Boylen thinks it’s not just us. “Everybody I speak to is saying the same, that they’ve been clearing out cupboards and wardrobes over the past few months.”

Each bag is worth, on average, £20 to Scope; 81 bags would, for example, allow it to run its Parents Connect support programme, for parents and carers of young disabled people in Leeds, for a week.

The bin is soon full, the contents bagged up and taken up to Mullins to be placed in quarantine. This system for dropping stuff doesn’t allow gift aid to be claimed for donations, says Woolston, so they miss out on that, but it’s unavoidable with the only-one-in-the-shop policy. That may be relaxed, but for now gift aid donors can’t be expected to queue.

As well as the purple wheelie bin, that’s the other new thing outside No 210: a queue. Beautifully spaced, orderly, patient, not as long as the ones outside Asda and Lidl down the street but undeniably a queue. It seems the appetite not just to donate but to shop in charity shops is alive and well. “I’ve missed it,” says Shahnaz Khan, one of the first people in. “You can get so many nice things from here, and the people are very nice.” She comes out with a pink handbag.

Alan Donoghue, who used to work here and is queuing on a mobility scooter, says it’s a good way to pass the morning. “It does you good mentally, and also sometimes there might be stuff that you want.” He’s not after anything specific, though he’s always on the look out for tea towels, fridge magnets and commemorative plates.

Is anyone here for something specific, Woolston asks the queue. “Tennis racket,” says a man named Mike Anderson. He tells me he’s started playing a bit in order to start seeing people. He has been borrowing his friend’s girlfriend’s racket but now is the time to take responsibility. Two minutes later, Woolston is back out of the shop with a choice of two: Anderson opts for the more expensive, a Slazenger for a fiver. The deal is done on the street. “Probably illegally,” laughs Woolston.

Anderson is chuffed enough with his purchase. “Charity shop, so, you know, standards are slightly lower,” he says. “But it looks lovely, it’s got its own cover; if anybody saw me walking towards a tennis court they would think I was going to play tennis, which is half the battle won, isn’t it?”

Nina Bright doesn’t shop anywhere but charity shops, except for socks and underwear. So she hasn’t bought any clothes for three months. She’s just happy to be out looking and isn’t bothered about the queue. “It’s fine – I’ve got nothing else to do,” she says. Nor is she bothered that, once she does get inside the shop, she doesn’t find anything to buy. She dismisses it as “the lottery of thrifting”.

Maybe Odion Edgal will be more successful. She’s on the hunt for books; she ran out over lockdown. “I miss books a lot – I need something to read.” She finds something – not Armstrong and Craven’s odd poetry journals or American Architecture, but Camp David, David Walliams’s 2012 autobiography. For £2. “That’s why I come – I can’t afford to go to Waterstones.”

I leave before the Walthamstow shop closes at 4pm, but I get an update. It’s been good – takings are 3% down on a normal Monday, but that’s much higher than expected given the restrictions, including shorter hours. And, over the 16 stores that have opened, takings have actually been about £5,000 up.

There have been 56 bags of donations in Walthamstow. Not quite enough for a week of Parents Connect, unless there are some treasures in there – a Mulberry handbag perhaps – and Woolston and Mullins won’t know for another couple of days, when they can open up the bags. Maybe those poetry journals will turn out to be rare treasures and can be sold at auction for millions. Maybe.

It’s going to pick up further as more charity shops open and people realise this, and then get their acts together to get down there. I know of several bags destined for a purple bin in the near future; one of them might just have a kitchen gadget snuck in there. Maybe someone does need a popcorn maker – just not me.

High streets, retail parks and shopping centres are buzzing with life again as the coronavirus lockdown eases across England. But in many areas public toilets remain closed. So how are people meant to spend their hard-earned pounds, when they can’t even spend a penny?

Laura Reid needs to carefully plan her shopping trips – and won’t be visiting any in a hurry.

The 27-year-old has irritable bowel syndrome (IBS) so hasn’t been to any shops since they reopened because of a lack of toilet facilities.

“The big thing for me when I go out is ‘where is the nearest loo’ because you’ve always got that anxiety in your head,” said the journalist, who lives in Barnsley.

“I’ve avoided going to the shops or supermarket for that reason.”

All shops in England are now allowed to open, but with strict safety measures.

There were big queues outside the Nike store in central London on Monday, while people queued for an hour outside Primark stores in Manchester and Birmingham.

But some tweeted to say they would not be joining them at the shops over fears not all toilets would be open.

Jenny Williams, 80, who lives near Coalville in Leicestershire, was diagnosed with rectal cancer eight years ago and lives with an ileostomy bag.

She said she had previously been forced to rush out of a shop because of her double incontinence and so hadn’t been into Leicester since February.

“I did have a problem in a shop and I was caught short so I had to leave my shopping. I did not get home in time, so I had to change my clothes and shower,” she said.

“Even before lockdown public toilets often had long queues and when I have to go, I have to go.

“I don’t have anyone to do my shopping for me but the lack of toilets in shops is putting me off going out.”

The charity Crohn’s and Colitis UK has urged local councils and shopping centres to open public toilets “as soon as they can, if social distancing measures are safely put in place”.

Their campaigns manager, Sarah Hollobone, said: “This will not only dramatically improve the quality of life for people with Crohn’s or colitis, but also people with other conditions that require toilet access.

“People with Crohn’s and colitis already feel isolated because of their condition and locking up public toilets unnecessarily adds to this.”

Scientists in China have found that flushing the toilet with the lid up creates a cloud of spray that can be breathed in and may spread infection, such as coronavirus.

Droplets can travel up to 3ft (91cm) from ground level, according to the computer model used by the scientists from Yangzhou University.

England’s larger shopping centres all said their toilets were open but many warned customers to expect reduced capacity.

Westfield, which has two large shopping centres in London, said it was “implementing reduced entry to toilet blocks to ensure social distancing”.

Intu, which owns 16 centres in England including the Trafford Centre, said toilets and baby change areas were open but said “the number available may be reduced to support social distancing”.

McArthurGlen, which has six centres across the country including Cheshire Oaks, said its “toilets and changing facilities are regularly disinfected”.

The Bullring in Birmingham also said its toilets were open, while Liverpool One said its loos were “open at 50% capacity due to social distancing” and were cleaned every hour.

How many public toilets are there?

There is no official national database of public toilets, though the Great British Public Toilet Map lists about 11,000 which include those in shopping centres, rail stations and anywhere the public can access, as well as those that charge a fee.

Research by the BBC in 2018 found that councils had stopped maintaining hundreds of facilities across the UK since 2010.

According to the Valuation Office Agency, which keeps a database for business rates, there are just under 4,000 free-standing public conveniences in England and Wales.

So people visiting shopping centres can expect facilities – with a queue. But what about the town centres where an economic boost is so badly needed?

Local authorities are not legally required to provide toilets, meaning they are often closed as councils look to cut costs, while businesses that provide toilets for their customers have no legal duty to do so for non-customers.

Raymond Martin, managing director of the British Toilet Association (BTA), has called on the government to “put some serious thought” into regulation and funding of changes to public toilets, saying they are a “human right and a human need”.

“People are coming out of their houses and they have to use the toilet,” he said.

“The government wants people to come out and spend their money but this is about health and wellbeing.

The government said it was encouraging councils to open toilets “wherever possible”.

“We’ve published guidance to help operators ensure facilities are safe where they are open including increasing the cleaning of touch points,” a Department of Housing, Communities and Local Government spokeswoman said.

The Local Government Association said the reopening of public toilets was a local decision for councils who should follow government guidance.

“People should not assume toilets will be open and plan their journeys and outdoor activities accordingly,” a spokesman said.

People like Laura Reid are following that advice.

“If toilets remain shut for sometime, or the queues continue to be long because of the necessary social distancing measures, then it’s definitely going to put me off going for anything I need and I’d shop online instead,” she said.

“It’s a big barrier to me in terms of accessing the high street.”

“There has been no guidance from the government on how to handle that conflict in both health settings and social care settings,” she said, adding that with more than 70% of people over 70 having hearing loss, many people admitted to hospital with coronavirus may experience difficulties in communication.

“We absolutely understand the public health need for wearing PPE but there is also a really significant concern, a safety concern, if people aren’t able to communicate,” said Ozmen.

Holly Parker, an 18-year-old from Essex who is profoundly deaf and largely relies on lip reading, said she had encountered problems as a result of face coverings.

“My main method of communication is taken away. In shops I am no longer able to understand shopkeepers and this causes me a lot of anxiety,” she said, adding that she was deeply worried about the prospect of going to university if face masks had to be used during practical lessons.

Deaf charities, including Action on Hearing Loss, said they welcomed the development of transparent masks, something Parker and others said would make life easier if widely used.

Philip Gerrard, chief executive at Deaf Action, said the charity had been testing several prototypes of transparent face masks within the deaf community and hoped it would shortly roll these out to members of staff, clients and the wider community.

“We would also like to see the government support the development of deaf-friendly face masks that are PPE approved in hospitals and care settings throughout the UK,” he said.

Ian Noon, head of policy at the National Deaf Children’s Society, agreed, adding: “In the meantime, if people pick up some deaf awareness tips like being patient, writing things down or using gestures if a deaf person needs them to, this would also have a big impact.”

The deafness, cognition and language research centre at University College London also issued a statement calling for greater awareness of the challenges around hearing difficulties and face masks, but said transparent face shields were a better solution, because they let the whole face be seen.

But, it added, dialogue with deaf communities was crucial, noting: “Deaf and hard-of-hearing people are best placed to advise on design needs and ensure any products are fit for purpose.”

People with sight loss say they have been abused and abandoned during the coronavirus pandemic.

Many say they are struggling to access services during the lockdown.

Some have been verbally abused because they find it hard to follow social distancing rules.

The Fight for Sight charity is calling for health services and retailers to ensure that people who are visually impaired can get the help they need and “are not excluded”.

A survey it carried out of 325 people with sight loss found one in four find it difficult to follow social distancing.

More than half of respondents said their access to food and other services had become worse during the lockdown period.

‘I don’t know there’s a queue’

Angharad Paget Jones says her guide dog Tudor is her eyes on four paws – she’s only confident leaving her home in Port Talbot with him by her side.

But during lockdown, she has found people are far less tolerant of her disability, making a trip to the shops a scary experience.

“I’ve been yelled at in stores for being too close to people when they can see I’ve got the dog – I can’t see them,” she said.

“Tudor is trained to find the door of a supermarket – I don’t know there’s a queue because he’s shown me where the door is and I’ve been yelled at for not queuing.

“I’m lucky I’m quite thick-skinned, but if someone just told me they were there or told me ‘sorry actually, there’s a queue’, it doesn’t take two seconds to let me know.

“I have a lot of help – I have friends and family around me. But some people don’t have that help and they do have to go to these places alone and if their confidence is knocked, they won’t want to go outside.”

Sherine Krause, chief executive of Fight for Sight, said there needed to be more advice given to retailers on social distancing measures “to ensure the needs of people with poor vision are not excluded”.

Throughout the various lockdowns around the world, extraordinary examples have emerged of people helping those most in need. This is the story of one of those – carer Caroline Sinfield.

Before lockdown, life for Shannon was busy, between volunteering at her local charity shop, keeping up with her arts and crafts hobbies and catching up with fami

But in just a few months, much of that changed.

In July last year, Shannon, who has Down’s Syndrome, lost her mother to cancer. The two were very close, and would meet up for coffee and shopping trips and would video-call each other two or three times a day.

Then in March, as the coronavirus pandemic began sweeping across Britain, Shannon broke her ankle.

This made it impossible for her to stay in her first-floor flat, where she had been living semi-independently, with regular visits by support staff, since she graduated from college in Yeovil two years ago.

Shannon, 24, had to start using a wheelchair to get around and had to move to an unfamiliar temporary home. On top of that, the government restrictions around the global pandemic, introduced on 23 March, meant her family and friends were unable to visit.

In just a few weeks, everything stable in Shannon’s life had shifted and it was too much to cope with, says Claire Lambert, a manager at the Aldingbourne Trust, whose staff support Shannon.

“She had to go into a temporary respite placement and when lockdown happened, she was very confused,” Claire says. “She didn’t understand why she couldn’t see people she knew.”

It was then that Shannon contracted Covid-19.

Although Shannon was not in the most high-risk category from Covid-19, NHS England has revealed, after pressure from campaign groups, that 515 people with a learning disability died with Covid-19 between 16 March and 22 May.

NHS England acknowledges this number is likely to be higher and is sharing data with Public Health England “to help us better understand the impact of Covid-19 on people with a learning disability”. It’s not clear when this analysis will be released.

As a naturally sociable person, Shannon found it difficult to distance herself from other people while unwell. Claire says Shannon became angry towards staff and conversations took place over whether a new secure placement might be the best option for her.

Shannon’s main carer Caroline Sinfield didn’t want this to happen. She had worked with Shannon for 18 months and was worried her behaviour might get worse if she was moved to another unfamiliar place with more people she didn’t know.

“Shannon understands everything that you say,” Caroline says, “but she isn’t able to explain to you how she is feeling so it’s reflected in her behaviour.”

Richard, Shannon’s father, was also very worried. “I was really against it, and the social worker was against it as well, but he was in a corner really, trying to comply with the [coronavirus] regulations and finding somewhere for Shannon to go where she’s safe and happy.”

No-one close to Shannon wanted her to move to a secure unit far away from her family. And so Caroline came up with a solution. She told her bosses that she would move in with Shannon while she recovered from coronavirus, if they could find them somewhere to stay.

The Aldingbourne Trust managed to find an empty holiday let for Shannon and Caroline, wrote up a tenancy agreement and furnished it so that Shannon could be looked after by someone she knew.

Shannon and Caroline have been living together now for more than two weeks, along with Mia, Caroline’s chihuahua-Jack Russell cross. I phone Shannon as she’s outside with Caroline in the garden and I ask her how she is. “Fine, I’m on holiday with Caroline and Mia and we are baking cakes,” she says.

Caroline doesn’t believe she’s done anything special for Shannon. “We’re in such a wonderful spot, in a wonderful house and a lovely garden and we’re just enjoying each other’s company and really enjoying the lovely weather.

“Shannon is much happier with people that she knows and trusts. It wasn’t a difficult decision, I volunteered, nobody expected me to do it and nobody asked me to do it, I just knew Shannon was in trouble and why wouldn’t I? I don’t have any family commitments, so I’m free as a bird.”

Shannon had a sore throat for about four or five days but her symptoms did not worsen. The Aldingbourne Trust provided Caroline with PPE to protect herself although she laughs “cooking dinner with a visor on isn’t exactly practical.”

Claire is in no doubt Caroline’s actions have made a huge difference to Shannon’s life.

“She’s sitting up and eating pizza. It’s amazing considering how she was coping in the previous environment where she didn’t know anybody and it was all very unfamiliar.

“It makes me very very proud to work for an organisation that has gone to huge lengths to get such a good outcome for somebody who possibly would have ended up in a service which would have made her so much worse.

“She may have got stuck in a mental health service where that very environment would have exacerbated her challenging behaviours and it would have been a circle where she would have got stuck there.”

According to the Challenging Behaviour Foundation, the average total length of stay in inpatient units is 5.7 years. The foundation says people in these units can be “subject to restrictive interventions (like physical, prone, mechanical and chemical restraint).”

Last week Shannon was able to see her father Richard for tea in the garden for the first time in two months. “You’re a good boy,” Shannon told her father as he laughed in the sunshine.

“She’s got through it all and she’s really happy with Caroline,” Richard says.

Shannon plans to return home in the coming days before moving into a new flat. Her new neighbour will move in at the same time: Caroline.

“I don’t mind moving, this whole thing has been so fortuitous,” Caroline says. “I’m actually living with a friend at the moment anyway.

“I’ll remember these two weeks for the rest of my life, all we’ve done is just laugh and laugh.”

Shannon sums it up best when I ask her how it’s been living with her carer: “I know I love Caroline.”

For many, the easing of restrictions to permit “unlimited exercise” and allow some activities such as golf and tennis to resume came as a relief.

But close contact sports are still off-limits, as are swimming pools and leisure centres. For some, their swimming clubs, football teams or running groups were more than about keeping fit, they were a lifeline to them. How are they coping?

Video calls help fill the social gap

William Castle plays in goal for Northampton Town FC multi-disabled football club.

The 43-year-old was diagnosed with autism almost a decade ago and found playing football gave him an opportunity to meet people and make friends.

It was his main form of exercise too.

But with social distancing measures in place, there has been no Friday weekly training nor monthly trips to Oxford where they play matches.

He said: “Football is a lifeline to me, I get to see my mates and get to see everybody.”

Furthermore, he’s been furloughed from his job, is unable to carry out his usual voluntary work at the local library or watch Crystal Palace play.

William, who lives with his mum and step-dad, says he’s finding it “really strange” and wants “the whole thing to be over and done with”.

To help keep him in touch with his club mates, he’s been joining in with conversations and quizzes with other players via Zoom.

“That’s been really good actually, seeing all my mates and talking to them,” he said.

‘I miss running outside’

Visually impaired runner Kelly Barton had been training for the London Marathon before it was rescheduled due to the coronavirus pandemic.

The 43-year-old would normally run with her running club, the Southport Strollers near Liverpool, and a number of guides throughout the week.

And although she lives with her partner, Mike Leatherbarrow, and could go out for runs with him, she said she was “too scared”.

“We tried it once and I felt really worried as we’re two across the pavement.

“It’s not fair on other people either and we had to zig-zag and it was really disorientating.”

Instead she’s been sticking to running on a treadmill at home six times a week.

“It’s horrendous, but at least I’m keeping my fitness up.

“I miss running outside – the social aspect and the fresh air on your face, it’s more exhilarating outside, and I miss Parkrun.”

Ever since she started running in 2016, she said she has felt like “part of the community”.

But she said she felt like she had lost some independence during lockdown as she will not even go out for a walk on her own because “you don’t know how near or far you are from people”.

And although she’s part of her running club’s WhatsApp group, she says it is not the same as spending time with them.

“A lot of the things that they are chatting about are really visual things like seeing the rainbows and photos they are sharing but if you can’t see, you can’t be part of that.”

Nonetheless, Kelly says she’s “really lucky” as she lives with Mike and her 14-year-old son Olly, and is able to go outside for walks in their company or for a bike ride on a tandem.

‘Swimming was my only form of exercise’

Katie Mahers has been a member of Phoenix Swimming Club for Disabled People in Coventry for two years.

The 17-year-old started swimming with the club after she had major spinal surgery to correct scoliosis which left her partially paralysed in her left leg.

After undergoing an emergency operation, she was advised to do hydrotherapy for strength building.

She went along to the swimming club and within a handful of sessions had grasped how to swim.

The teenager said swimming “really helps” because she struggles with regular exercise due to heart problems, fainting, pain and joint problems.

“It helps me maintain some muscle without being too strenuous,” she said.

But with pools closed due to the coronavirus restrictions, she said not only has she lost her only form of exercise, but the social side too.

“The club helps because it’s nice to socialise with people who know what it’s like to not be capable of doing exercise ‘normally’, so it just normalises it for me and is very comforting.

“I’ve met a lot of amazing people through this group, and I’ve definitely achieved more than I could’ve ever expected thanks to the outstanding staff, who go above and beyond to help people adapt the way swimming can be done to adhere to disabilities ranging from physical to mental,” she said.

The Royal Air Force cadet said since the club had to close for safety reasons due to Covid-19, she had not really been exercising much besides her physiotherapy exercises.

“I definitely have lost most of my strength due to not swimming and outside of the club I don’t really speak to the members on social media, and a lot of them don’t have social media.

“So I miss the physical aspect but also the social aspect, it’s always pretty lively when I’m there and I really enjoy it.“

Deaths of people with learning disabilities in England have increased by 134% during the coronavirus pandemic, the Care Quality Commission (CQC) has said.

Between 10 April and 15 May there were 386 deaths, half of them confirmed or suspected Covid-19 cases.

The CQC said that during the same period in 2019, there were 165 deaths.

In a statement, the government said it was looking at how to “protect those most at risk”.

The “targeted” analysis by the CQC looked at deaths of those with a learning disability and/or autism that it was notified of via care providers, and also those where a learning disability was indicated on the death notification form.

Testing priorities

It found there had been an 134% increase in deaths, with 53% related to coronavirus.

Figures from the Office for National Statistics for the same time period show Covid-related deaths within the general population at 34%.

Kate Terroni of the CQC said: “We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives.”

Tests are currently prioritised for homes that specialise in caring for older people and those living with dementia, but not those with learning disabilities or autism.

In a statement, the Department of Health said: “We are working to improve our understanding of how different groups may be affected by the virus, including those with learning disabilities or autism, to ensure we can provide the best support and protect those most at risk.”

The CQC said its figures did come with “limitations”, such as it not being mandatory for providers to inform them the deceased had a learning disability, and added that if both the NHS and care provider reported the same death, duplicates would arise.

For those living with underlying health conditions, the thought of contracting coronavirus can be terrifying. But while the numbers may appear bleak, there are many people considered high risk who are making a full recovery, as I personally discovered.

Panic rose in my chest as I failed to catch my breath. All I had done was walk up the stairs. Was this Covid-19? Was it in my home, in my body, in my lungs?

I have Crohn’s Disease, an autoimmune disease which means my digestive system attacks itself. It’s classed as a “serious underlying health condition” at this time.

One of the main treatments is immunosuppressive therapies, drugs which reduce the strength of the body’s immune system making it more susceptible to infections.

When the first coronavirus symptoms arrived – fever, tiredness – I naively thought “this doesn’t feel that bad”.

When you live with a chronic illness, you live with perspective. I have gone through health crises I wouldn’t wish on my worst enemy – open abdominal operations, the removal of my large bowel and a few scrapes with death along the way.

So as my temperature spiked, my mind was full of questions and the horror stories I had read about. Would I end up in hospital? Would I need a ventilator? Am I going to die?

There was no opportunity to be tested, but a doctor suggested it was Covid-19. I was told to hold tight and go to A&E if my condition worsened.

After eight days, my symptoms eased. My suppressed immune system had done a good job.

I am not alone in my story. There are many people, like me, considered high risk who have made a full recovery.

“I tried to stay positive even though I was scared”

Khadija, 25 from Leeds, has lived with type 1 diabetes since she was a baby. Her pancreas no longer produces insulin, so an external pump, attached to her stomach, administers it for her.

“I was really apprehensive when I heard I was in the high-risk category,” she says. “I just thought, ‘I could get it and what would happen if I do?’ I was frightened.”

Khadija lives with her mum, a nurse who comes into contact with Covid-19 patients, and four weeks ago she started to experience some of the virus symptoms.

She had “achy bones” and was “really short of breath” with chest pains and a temperature.

“I was panicking at first when I got the symptoms. I knew my immune system wasn’t up to scratch.

“All over the news is the death rate, there wasn’t anything about people recovering and surviving. The way I saw it was as soon as you go into hospital with it, you’re not going to be coming out alive.”

Paramedics were sent to her house, but they decided Khadija didn’t need to go to hospital. They suggested she call 111 to arrange a test, but none were available.

“I tried to keep a positive outlook even though I was scared,” she says.

A few weeks on and Khadija has made a good recovery.

“I felt safer inside”

Feya, 37, from Manchester, lives with several chronic conditions including asthma, for which she takes steroids. Steroids are also a form of immunosuppressants and therefore make you vulnerable to the virus.

Before the lockdown, Feya felt anxious. News of the virus dominated the media and she experienced a panic attack while out shopping.

“It was the worst I’ve ever been,” she says. “I wasn’t bothered about the lockdown because I felt safer inside.”

Two weeks later, Feya felt unwell with fatigue and unsteady breathing. She visited her GP who told her to self-isolate.

But she rapidly deteriorated – “I was coughing so much and struggling to breathe” and her boyfriend had to call for an ambulance.

“They said if we could make our own way to A&E that’s what we should do because they were so busy.”

Feya stayed in hospital for five hours but wasn’t admitted so wasn’t offered a Covid-19 test. Her symptoms persisted for another two weeks, including a second ambulance call-out, and she felt completely drained of energy for weeks, but slowly she recovered.

“I went outside for the first time in two months the other day, which was nice!”

“You can catch this and only have mild symptoms”

Joe Dunster has Nephrotic Syndrome, a kidney condition which resulted in a kidney transplant in 2000. He too is on immunosuppressants.

“When it started to become apparent the transplant community were in the high-risk group, I needed to shield of course, so I got home and locked down,” he says.

But that didn’t stop him developing coronavirus symptoms. He believes he may have contracted it from his wife, a doctor, who also became unwell.

“We both suffered from tightness of the chest. At first, we wondered if it was anxiety, but into the weekend I didn’t feel quite right. I felt quite wheezy and went on to develop a cough.”

Joe also developed a temperature and at that point felt all the symptoms pointed towards coronavirus.

“The next few days I felt so unwell. The cough and the wheeze stuck around for 10 days.

He says there was “anxiety” about what it could turn into, “but I never felt poorly enough to get seriously worried”.

Slowly, he and his wife recovered.

“It’s good that people realise that you can catch this and only have mild symptoms and go on to make a good recovery.”

Vulnerable people in England and Wales advised to stay home since the coronavirus lockdown began will be able to go outdoors again from Monday.

The change means people will be able to go out with members of their household.

Those living alone can meet with someone from another household while maintaining social distancing.

Support for shielders, such as food and medicine deliveries, will continue. Shielding advice in Northern Ireland and Scotland has not yet changed.

In England, those shielding will be advised that they can go outside once a day, with their household or, if they live alone, to meet one other person at a two-metre distance.

In Wales, outdoor exercise for people shielding will be unlimited.

Those shielding should not go out to work, to shop or visit friends in their homes.

Around 2.5 million UK people were advised to stay at home as lockdown began, because they were identified as being at particularly high risk of needing hospital treatment for coronavirus symptoms.

Most were notified by their GP.

The list of people who should be shielding includes solid organ transplant recipients, cancer patients undergoing chemotherapy, pregnant women with heart disease and people with severe respiratory conditions such as cystic fibrosis and severe asthma.

Not all elderly people were asked to shield.

Some were later removed from the shielding list if they no longer met the requirements.

One of the scientists advising the government, Professor Peter Openshaw, told the BBC’s Andrew Marr Show that we are learning more about the virus: “I think we’re going to be able to fine-tune the advice now and actually reassure some people we feared might be susceptible, that in fact they’re not as vulnerable as we thought.”

Shielding has become ‘more challenging’

Lynne Loomes, a primary school teacher from Gloucestershire, is one of those who has had to stay inside having been diagnosed with an autoimmune disease last year.

She told BBC Breakfast that the easing of lockdown measures has made shielding more challenging – especially since she has had to tell her children they cannot go out for socially-distanced meet ups with friends.

“I’m having to say ‘no, you can’t, because that increases the risk for me’,” she said.

“In terms of day-to-day we’ve tried to get up as normal. We’ve tried to keep the routine as if we were going to work,” she added.

“But it has actually got harder as some of the rules have eased, because we know that it doesn’t really change for us as a family.”

Prime Minister Boris Johnson said that “thousands of lives” had been saved by those who had shielded themselves.

Some scientists have expressed concerns about England’s easing of lockdown rules while infection rates remain at around 8,000 per day according the Office for National Statistics.

“Many of us would prefer to see the incidence down to lower levels before we relax measures,” said Professor John Edmunds, from the London School of Tropical Hygiene and Medicine and one of the government’s top advisors.

“Covid-19 spreading too fast to lift lockdown in England,” tweeted Jeremy Farrar, director of the Wellcome Trust.

England’s Deputy Chief Medical Officer Prof Jonathan Van-Tam said the consensus among scientists was that the new measures were not expected to push the rate of infection above the key R value of 1.0.

However, he urged the public to be “sensible and proportionate with the freedom we have wanted to give people”, saying the UK is “at a dangerous moment” and the easing of lockdown “has to go slowly”.

Reacting to the change, Phil Anderson from the MS Society said thousands of the more than 130,000 people with MS in the UK had been feeling “forgotten” after months of shielding.

He said they were concerned the news had come “out of the blue” and extremely vulnerable people would want to hear “a lot more about the scientific evidence showing this will be safe for them”.

He also called for better mental health support for everyone who needs it.

I am ashamed to say this had never occurred to me. Dave and his current guide dog, Chad, are more than capable of looking after themselves. He doesn’t need pity; far from it. He is a bit sick of overenthusiastic evangelicals on public transport offering their prayers. A bloke on the Piccadilly line at Earl’s Court once asked if he could heal him. “Certainly,” said Dave, handing him one of his false eyes. “Give it a try, by all means.”

He doesn’t need healing. He doesn’t even need a hand; just an elbow to guide him. Like all blind people, whether they work with dogs or have canes, he needs to ask strangers to help him across busy roads.

“What are people supposed to say if I ask them now?” he wonders. “I don’t know if or how to ask them. And I feel a bit sorry for them, too; it puts them in an awkward position. I’m sure they’d want to help, but would it be a touch too much?”

Dave and Chad have travelled the world together, but Dave is now worried about lockdown lifting; for the first time he can remember, he is nervous about leaving his locale. He knows he can have my elbow, as well as my crash helmet, any time he wants. 

The coronavirus lockdown has placed additional pressure on many families. But what happens if you lose your work, your support network, and have a disabled child to care for?

“You know what? It’s needs must,” says Gail Bedding, from near Grayshott in Hampshire. “We needed to pay the bills, we needed to pay the mortgage – and suddenly there’s no money coming in.”

Gail’s work has stopped – but there’s another bigger factor dominating her life. She’s the mother of a severely disabled 16-year-old son, Fergus, who is completely dependent on the care of his family.

He is in a wheelchair, non-verbal and fed through a tube.

Gail’s husband Dave also found himself without work. But with the country in lockdown, the family needed to find a way to look after Fergus.

“We had to go out and find jobs. Dave went out and got a delivery job with Sainsbury’s. I got a job stacking shelves for Sainsbury’s.

“I’ve got 18-year-old twins. They both went out to get jobs. One’s working in a care home and one’s working in a garage with a shop attached to it.”

The family rallied around in a collective effort to make sure that, even in a time of isolation, Fergus was never alone.

“We have to work out who is home, so he’s not left on his own. We have to make sure one of us is in the house with him. It’s a real juggling act for us,” says Gail.

“We all had to just get on with it,” she says. When her children got back tired from a shift at work, they still had to help.

There isn’t anything heroic about this, she says. No one is going to stand on a street and clap families like that. Instead, the feeling she describes is one of “guilt” that she can never do enough to help her son.

Gail says that for families with disabled children, the lockdown has made things even tougher. It’s created an even more intense sense of being cut off and ignored.

With travel restricted, parents have not had any access to relations or friends who might usually share the load of caring.

There are worries about jobs and money – and working from home is not easy while caring for a child with disabilities.

Getting help from paid carers has been more difficult during the lockdown. Play clubs which might give some respite are not running and some schools are closed.

The fragile health of some young people with disabilities makes it even less likely that they can go outside. And some cooped-up children are showing much more challenging behaviour.

“Unless you have a disabled child, you will never understand how it affects your life – and then this is 10 times worse, because there is no let up, no let up whatsoever,” she says.

“The doors are closed. Nobody sees our children going out now, because they’re all shut behind closed doors. They’re not allowed out, so many of them are vulnerable, they can go out even less than normal.

“Our lives are very different. Nobody else gets it. That’s not woe is me, it’s just a fact.”

Gail says she’s fortunate that Fergus can still go to school a few days a week – as it means the family can get a break from their exhausting routine.

“It’s a real relief. I know that sounds really awful. I love my son dearly, but when he’s not here, it means he’s being stimulated and looked after and doing something away from home,” she says.

There is no glimpse of self-pity in any of this. She expects her work – training with families with disabled children – will pick up again, and so will her husband’s business in reclaimed flooring.

But she really worries about the sense of confinement and that local charities might struggle to keep going. Her son goes to leisure activities run by Challengers, in Guildford, but she says such charities depend on fundraising, which has been badly hit.

“I don’t know what’s going to happen in the future, because a lot of the short breaks are charities and will be closed. Or they won’t be able to offer the same services,” says Gail.

“This social isolation we have now isn’t going to stop, it’s going to carry on and that fills me with absolute dread. To think we will have very little break in the future is pretty desperate, to be honest. I’m not sure I can cope.”

‘I love her deeply’

Caroline – not her real name – is another mother of a child with disabilities. She speaks of the crushing sense of isolation made worse during the lockdown.

Her 13-year-old daughter has “profound learning difficulties”, cannot speak or do anything for herself, and has to have her nappies changed.

“Your child grows up and gets bigger, but their mental and emotional life does not travel alongside,” she says, describing her daughter as being as vulnerable and demanding as a “baby or a toddler”.

“I love her very deeply,” says Caroline. But the pressures are emotionally as well as physically exhausting. She says for parents of disabled children there are extra constraints on top of those already placed on everyone else.

“We can’t go out for the daily family exercise. My daughter refuses to walk far. She leans on me, messes around, pulls on me and it’s infuriating. I can’t take her far because I don’t know if we will make it back.”

When they tried, her daughter had to go to the toilet, and they had to carry it back in a plastic bag.

“I am just trying to give you a glimpse into our life,” she says – and it’s one where being “lucky” meant having a spare nappy.

Caroline says she has become very dependent on a network of support services and the respite when her daughter is at school or a play group.

“Take all that away and life can feel quite bleak. If I were a single parent, living in a small flat, I don’t know what I would have done.”

It’s a theme you hear from other parents of disabled children. There is a reliance on help and fears it will be swept away by the pandemic, or the economic storm that might follow.

Another mother of a child with severe disabilities spoke of a “never-ending pressure – and you know it’s never going to go away”.

She worries that children with learning disabilities who are missing therapy and the company of other children will “regress” even further.

“You can’t understand. You don’t know what it’s like until it happens to you,” she says.

Last week, the Department for Education in England announced £10m to provide extra assistance during the pandemic for parents of disabled children, aimed at families whose children were now “at home more than usual”.

There is a great need for support says James Taylor, executive director of the disability charity, Scope. He says “many families of disabled children are telling us they feel forgotten amid the crisis”.

“Parents are juggling working from home with childcare and home-schooling, often without the right equipment or resources,” he says.

“Many have lost the respite care they usually get through relatives or other services,” he says.

It’s also a reminder, that when you go around a supermarket, whether it’s the shoppers or the shelf-stackers, everyone has their own story.

It’s now part of daily life for many of us – struggling to work out what someone in a supermarket or at work is saying when they’re wearing a face mask.

But for people who are deaf or have hearing loss, masks can prevent them understanding anything at all.

“You might as well be speaking in French,” says Fizz Izagaren, a paediatric doctor in the UK who has been profoundly deaf since the age of two.

“I can hear one or two words but it’s random, it makes no sense… When someone is wearing a face mask I’ve lost the ability to lip read and I’ve lost facial expressions – I have lost the key things that make a sentence.”

It is a problem she shares with the some 466 million people around the world who, according to the World Health Organization, have disabling hearing loss.

Standard face masks, which have become widespread as countries try to stop the spread of coronavirus, muffle words and obscure the mouth.

But now charities and manufacturers alike are coming up with a solution.

Main dans la Main (Hand in Hand), an association which supports deaf and hearing impaired people in Chevrières, northern France, is among the organisations around the world that have created a mask with a transparent window.

Its founder Kelly Morellon worked with her mother Sylvie to devise a design that covers the nose but makes the mouth visible, and can be washed at a high temperature to reduce infection.

“The basic aim of these transparent masks is to allow deaf and hearing impaired people to read the lips of someone speaking to them,” Kelly told the BBC.

“But they are also very useful for autistic people, people with learning difficulties and small children who might be scared of masks or need to be able to see facial expressions.

“In any case, a transparent mask allows you to see each other’s smiles, and at this sad time this could not be more important.”

Unlike some companies around the world – in Scotland, the US and Indonesia, for instance – Kelly and her mother are not able to produce their masks on a commercial basis.

Instead, they are advising people on how to make their own and there are multiple guidelines online to help. Their top tip is to use a little washing up soap to stop the plastic screen fogging up.

But one setting where homemade masks are not suitable – but where both PPE and communication are vital – is in hospitals.

There is just one company in the US that has secured Food and Drug Administration (FDA) approval to make clear masks for clinical use.

Five hundred of these masks are being used at Brigham and Women’s hospital in the US city of Boston. At the moment they are being reserved for staff to wear when they are speaking to patients with hearing loss, or vice versa. Sign language interpreters, who use facial expressions and lip movements alongside body movements to create more complex and culturally rich signs, also wear them.

“When we saw the Covid-19 pandemic beginning… we soon realised there was going to be a challenge because of the escalated use of PPE and how that would create communication barriers,” said Dr Cheri Blauwet, who leads the disability task force at the Brigham.

“We’ve had glowing feedback from patients and we’re getting broader requests from other parts of the hospital, especially the paediatric floors.”

In the UK, there are no approved manufacturers providing clear masks to hospitals. And the sole US manufacturer is not taking any more orders as it deals with overwhelming demand.

Fizz Izagaren, a paediatric registrar at Frimley Park Hospital in Surrey in the UK who is also deaf, says standard masks prevent her from taking patients’ histories verbally. She also says she feels isolated at work because she is not able to speak to her colleagues.

“Clear masks should be the norm for everyone in a healthcare setting,” she says.

She is now working with a product designer to try to come up with a mask that the NHS could use widely. But even once a design and a manufacturer are found, this could take time to roll out.

In the meantime, there are concerns the current PPE could stop medical staff getting the required consent from patients.

An intensive care nurse working in London, who is profoundly deaf, told the BBC she had one experience where a patient, who also had hearing loss, was not able to understand her or her colleagues when they were explaining a procedure. The patient could not give consent and the procedure could not go ahead.

“[Clear masks] would make things a lot easier for me,” she said.

“I would be able to do my jobs properly and safely. I would have more independence rather than having to rely on others.”

In the UK, eight charities have written to NHS bosses calling for clear masks to be commissioned, warning of “potentially dangerous situations” arising from communication problems. NHS England has not yet responded to the letter, or to the BBC’s request for comment.

The UK government says it is supporting CARDMEDIC, which provides digital flashcards and other communication aids to NHS Trusts. There are also apps that transcribe speech into text on a mobile phone.

But deaf workers say these workarounds are not always suitable for sensitive or emergency situations.

“As masks become more widespread in the community – it’s going to get harder and harder,” Dr Izagaren says.

“I’m worried the public are going to get more and more frustrated and there will be more discrimination towards the deaf community.”

It is not just people with hearing loss who could benefit, she says.

Experts suggest that other professions such as taxi drivers or even teachers may find clear masks useful as the coronavirus crisis continues.

A niche product initially designed to help the deaf community, could in fact make everyone’s lives better.

Hundreds of disabled people can now be added to Tesco’s priority shopping list after legal action was taken by a disabled mother unable to buy food.

Joanne Baskett, 48, who cannot leave her house, says she was discriminated against because she could not secure an online shopping slot.

A further 318 people sent claims to all of the UK’s major supermarkets for breaching the Equality Act 2010.

Tesco has now agreed to add all those people to its priority list.

The individuals were not named on the Government’s Extremely Clinically Vulnerable list, but nevertheless felt their access requirements should be taken into consideration by supermarkets.

Food banks

Ms Baskett from Swindon, who has multiple organ paralysis, says she was unable to secure an online shopping slot after returning home from hospital at the end of March.

She said: “For six weeks I would stay awake until midnight to try and get a slot but I couldn’t. It has had a huge mental and physical effect on me.”

She took legal action and accused the supermarket of breaching the Equality Act 2010 for not making reasonable adjustments to enable her, as a disabled person, to shop.

Chris Fry, from Fry Law, who handled the case, said: “We have been hearing so many heart-breaking stories about people unable to leave the house and having to rely on the charity of friends and families and even foodbanks.

“This is just the first step but it’s going to improve many people’s lives.”

The other claimants include people with sight loss, mobility issues, agoraphobia and some who have to shield due to multiple health conditions.

In a statement, Tesco urged customers facing similar issues to contact them directly.

When Harrie Larrington-Spencer was knocked off her bike at the end of the first year of her PhD, she was left with a brachial plexus injury. “My left arm and hand barely work and I have chronic pain,” she says. She knew her injury would affect many aspects of her life, but was surprised to learn just how hard it would be to do her university work as a disabled person.

“No reasonable adjustment would make me not at a disadvantage to my non-disabled peers,” she says. “There is also the ingrained but generally unseen ableism inherent in academia.”

Larrington-Spencer is used to being unable to attend writing retreats or being reprimanded for using her foot to open doors, but the coronavirus pandemic has presented the biggest challenge yet.

“I have some facilities provided at home in terms of desk and office chair but it isn’t set up professionally, and no matter how many YouTube videos I watch I can’t get it right. Without it the pain and difficulties in working are exacerbated,” she says. She also lacks the computer processing power to run the assistive software she needs. “My computer will crash every time.”

Despite this, Larrington-Spencer considers herself one of the lucky ones – she’s entitled to apply for a six-month extension to her PhD. “It’s great, but the fact that I have to apply is ridiculous. I am already registered as disabled with the university and have already had to prove my disadvantage and disability through that process,” she says.

Larrington-Spencer was among the 1,700 signatories of an open letter sent to the research councils this week, urging for automatic funding extensions for all PhD students who are registered as disabled, neurodivergent or chronically ill. The letter also asked for grants for the assistive equipment and technology necessary for working remotely.

Zara Bain, a final-year PhD student who suffers from several conditions affecting her immune system and is one of the organisers of the letter, says many disabled students are so busy trying to adapt to the circumstances that they simply don’t have time to apply for extensions. She sees the bureaucracy as part of a wider misunderstanding of what they’re going through.

“The general absence of any mention, until very recently, from UK Research and Innovation (UKRI) or universities of this particular student population – who are higher risk, more pressured and less supported, relative to the pandemic – means we’ve been sort of left to deal with all of that,” she says. “And [also] trying to meet existing PhD deadlines, and weather problems like running out of funding.”

Prof Jennifer Rubin, who works on inclusion at UKRI, says that “any UKRI-supported doctoral student who needs an extension of time because of Covid-19 can request one”. The organisation will review its policy over the summer.

But Penny Andrews, another signatory, says the response from the research councils and some universities belies a lack of understanding. “It feels like we are being fobbed off,” she says. “I am a PhD student struggling to write up, who has already been through major surgery, survived being hit by a car at 40mph, and experienced post-traumatic stress disorder and bereavement, as well as autism, ADHD, cerebral palsy, and anxiety and depression.”

It’s not just PhD students with disabilities who are struggling. Bain and Andrews’s views are echoed in a new report by the National Association of Disability Practitioners, which warned that disabled university students are struggling more than their peers during lockdown.

The report urges universities to provide better training for academic staff to ensure their online teaching is inclusive. It also warns that neurodiverse students and those with visual and hearing impairments are facing problems with access to teaching and course materials, such as poor captioning and underprepared lecture slides.

A separate survey by the Association of Non-Medical Help Providers suggested that 81% of disabled students have been negatively impacted by changes to their academic work due to coronavirus, while 73% said they had issues with access to academic resources such as libraries and workshops, and 57% said access to their teaching had been disrupted.

Piers Wilkinson, disabled students’ officer at the National Union of Students, says he was unsurprised to see these concerns. He would like to see the medical evidence requirements suspended during this time for the Disabled Students’ Allowance, which funds equipment. “Institutions must ensure disabled students can choose what best supports them, and ensure any leave of absences or suspension of studies comes at no cost,” Wilkinson says.

Stephen Campbell, dyslexia and disability coordinator at Leeds Trinity University, says universities have adapted their courses to the lockdown more effectively than he expected. “But you’re supporting more than just the medicalised condition that the student has,” he says, referring to how the lockdown is affecting students’ mental health. “My colleagues in counselling are saying there has been a direct impact from the lockdown. They’ve seen an increase in referrals to secondary care, to organisations like community mental health teams or Crisis.”

Bureaucracy was a problem even before the lockdown, Campbell adds. “If we talk about dyslexic students, there’s already a protracted process of applications and testing before they even get anywhere near their assistive technology,” he says. “Combined with the technology universities are now using to move their courses online, we’re inevitably going to find problems with inclusion in the future.”

The picture is not the same everywhere: some universities are providing better support than others, and certain disabilities have benefited from the shift to online learning. Tiri Hughes, a visually impaired medical student at Trinity College, Oxford, is grateful for her university’s adjustments so far.

“From an accessibility perspective, our remote lectures are brilliant [for visually impaired students],” she says. “We’d been calling for all faculties to do them because they’re vital for disabled students. It was often not done properly, but now we’re in lockdown, a lot of disabled students have even better access to education.”

But she adds: “It’s frustrating, because we’ve been fighting for this for years. Were we not important enough? We’re determined that, when things go back to normal, we don’t lose some of this progress.”

Disabled people and their carers are being put at risk of catching coronavirus by returning to the workplace after being missed off the government’s vulnerable list, the Guardian has learned.

As Britain edges back to work, employers are understood to be denying some disabled people and carers paid leave to remain at home if they cannot provide a letter from the government showing proof of vulnerability, despite being at high risk from coronavirus or caring for someone who is.

The government’s register for extremely vulnerable people, which has previously been criticised for excluding a number of high-risk disabilities, is primarily designed to help signpost the need for food support. But it has emerged some employers are using the list as a condition for allowing employees to take paid leave.

Disabled people and carers who were not on the list told the Guardian they had been required to go into work by their employer or face dismissal when they could not show proof of vulnerability, with one worker forced to self-isolate between shifts in order to protect their disabled child.

They included key workers such as a teacher and a supermarket assistant. Harry Banes* has primary progressive multiple sclerosis but is having to go to work as a petrol station attendant. “The manager [has] little regard for social distancing. There are no restrictions on the amount of people coming in, and we only had a screen in front of the till last month,” he said.

Banes said he had asked to be furloughed but his boss had only offered statutory sick pay. “Because I didn’t make the government’s list, I can’t back up potential vulnerability.”

Four-year-old Charlie Sanders has type 1 diabetes with low immunity and is cared for by his parents, Jennifer and Michael. Michael stacks shelves in a supermarket, but because Charlie did not make the extremely vulnerable list, he said, his employer only offered unpaid leave. “We can’t afford that,” Jennifer said. “We’re scared stiff.”

Michael used three weeks’ holiday pay in April but has now had to go back to work. He is self-isolating within the home away from his family between shifts in order to reduce the risk. Last week, it meant he missed Charlie’s birthday. “I went into the garden and watched him open presents from a distance,” Michael said. “Charlie couldn’t understand why Daddy can’t hug him.”

Someone who is advised to shield in accordance with Public Health England guidance is entitled to statutory sick pay but this only applies to the 2.2 million people the government now counts as “clinically extremely vulnerable”.

Employers can also decide to furlough an employee who is shielding, but there is no legal obligation to do so. However, the Equality and Human Rights Commission (EHRC) says employers have a legal duty to make reasonable adjustments for disabled people if it is less safe for them to go to work than their non-disabled colleagues.

This comes after researchers warned 8 million people with underlying health conditions should be exempt from plans to get the country back to work, amid fears that they would catch the virus.

Most of those are not considered clinically “extremely vulnerable” by the Department of Health and Social Care, and so instructed to shield entirely for 12 weeks, but are still highly vulnerable to coronavirus.

Gemma Jones has ME and is cared for by her husband, Colin, who is a teacher. Despite being housebound, she did not make the extremely vulnerable list. Her husband was temporarily allowed to work from home when they explained the risk of contagion but his headteacher repeatedly called to ask for evidence of her susceptibility to the virus. “My husband has now been told he has to go back to school because I didn’t receive a letter to say I was officially high risk,” she said. “I’m terrified, honestly.

A government spokesperson said: “The clinically extremely vulnerable classification should not be used by employers to decide who can and cannot travel into work.

“We expect employers to be understanding where people aren’t able to work and need to stay at home on government advice. If an employee feels they have been unfairly treated by their employer, they should contact the Acas helpline for free and confidential advice on 0300 123 1100.”

* All names have been changed

Like millions of Britons, Jessica Kellgren-Fozard is at home. Unlike other workers, however, the impact of the coronavirus lockdown on her day job has been minimal. That’s because her home in Brighton with her wife and two dogs was already her office and her career is making YouTube vlogs for her 686,000 subscribers.

The deaf influencer, who posts upbeat videos about disability, LGBTQ+ issues, vintage fashion and other subjects, started her channel three-and-a-half years ago after she left a job as a presenter for a local TV station. Because she suffers from nerve disorder HNPP (hereditary neuropathy with pressure palsies), which results in extreme palsy in her arms and weak limbs, as well as a rare autoimmune disease called MCTD (mixed connective tissue disease), she was often unable to meet the demands of the job, and there were days when she couldn’t leave her bed.

“I really needed a more flexible way of working,” the 31-year-old says. “Trying to fit around someone else’s schedule was driving me into the ground and making me really unwell. So when I got married, my lovely wife said: ‘Why don’t you give YouTube a go? For six months I will financially support you – just have a go.’”

Success wasn’t instant. Like all YouTubers, she had to apply to the site’s partner programme to make money from adverts running on her videos. To achieve partner status, your channel needs 1,000 subscribers, and for people to have watched 4,000 hours’ worth of your videos a month. Kellgren-Fozard says she earned just £200 a month at the beginning. It wasn’t until one of her videos went viral and her subscribers swelled to more than 200,000 that she saw her business take off. Now she’s earning a five-figure salary and is the main breadwinner of the family.

As well as ad revenue, she makes money from partnering with brands to promote their products or services in her videos, and from members who pay a fee for access to exclusive content and privileges.

If you are at home now, watching viral cat videos or PE with Joe Wicks, and think you could do better, then join the two-metre spaced queue. As the number of people working from home and self-isolating increased, so did the number of people considering vlogging for the first time.

According to Google Trends, YouTube searches for “how to start a YouTube channel” increased by 230% between 14 March and 4 May, while searches for “how to edit videos” increased by 225% over the same period.

Research conducted by SEO agency Blueclaw claims that even filming mundane activities has the potential to make money. It looked at the most searched-for videos on YouTube and calculated how much the creator whose channel has been monetised stood to make.

For example, a video of someone shopping online could make them £1,523 if it is watched 1,160,988 times. Needless to say, that’s a lot of viewers, and some videos on YouTube struggle to get even hundreds of views.

https://www.youtube-nocookie.com/embed/reF-x6R1_Ms

Jennifer Quigley-Jones, founder of YouTube influencer agency Digital Voices, says it is about finding a new twist on a popular topic, for example, beauty looks inspired by specific music videos or films. Or food challenges, such as feeding a family for £5. With home schooling now widespread, explainer videos in education are also flying at the moment, she adds.

But while Kellgren-Fozard says the startup costs are minimal – initial videos can be shot on a laptop or smartphone camera and edited on free apps such as Apple’s iMovie – launching a successful channel requires a big time commitment. To launch her usual two videos a week, she works 60 hours coming up with new ideas, filming, editing and managing her social media.

The most important consideration, she says, is choosing the right content for your videos.

“For some it is working out what niche works best, whether you really enjoy making videos that are incredibly fast-paced and funny and chunkily cut together, messy and fun, or whether you want to make the long-form, slower pieces which people will have on when maybe doing the dishes or chopping food ready for dinner,” she says.

As Kellgren-Fozard found, getting enough subscribers to make your videos profitable is the real challenge. People subscribe usually once they trust your channel. If you are lucky enough to have a video go viral, that’s great, but unless you can convince people that you are more than just a one-trick pony and give them a reason to come back, you are not going to grow.

The key, Quigley-Jones says, is building up a bank of videos that shows what you specialise in, what type of content you consistently create and what your channel is about. Consistency is also vital – launch the same number of videos at the same time each week. Making longer videos, naming them in intriguing ways and tapping into trending topics as much as possible can also get your channel noticed in a sea of vlogs.

One of the biggest things that stops people starting their own YouTube channel is the idea that they have to be perfect, she adds.

“We are all perfectionists and deeply self-critical and anxious, but YouTube is not like TV. It’s not embarrassing to make mistakes,” she says. “So try to stop your perfectionist side. A lot of people stop themselves making videos because of that fear, especially women who are quite disheartened by criticism and nervous about how they might be perceived. So try to silence your inner critic and get something out there.”

“Did I see you on the telly?”

Cathryn McShane-Kouyaté keeps being recognised in the supermarket.

As the British Sign Language (BSL) interpreter for the Welsh Government’s televised daily Covid-19 updates, she has suddenly become a familiar face to many.

Most days the 44-year-old cycles from her home in Cardiff to Cathays Park where she shares a stage with whichever minister or official is giving the latest coronavirus developments.

Ms McShane-Kouyaté never set out to be an interpreter.

After moving from Pembrokeshire to study at Cardiff University she took a night class in BSL to try to meet people and “fell in love with it”.

“I didn’t think of it as a career until years and years later,” she said.

She has been quietly freelancing for the Welsh Government for over a decade but this this is the first time it has been so public-facing – leading to her being recognised “a lot”.

“It’s funny,” she said.

“I’ve had it in places like the post office or from the security guard at Sainsbury’s.

“People who’ve seen my face over the years and recognise me as a customer say ‘Is it you who’s on the telly?’

“People I haven’t spoken to for years have been calling or emailing me, some people I haven’t seen since school, and neighbours.”

Ms McShane-Kouyaté said she is sometimes briefed on the content of the statement at the start of the briefing but does not know what questions journalists will be asking afterwards so cannot predict what the speaker will say in response.

“Sometimes it’s complicated messages, some days it’s very statistics-heavy and quite technical and you have to step up and do the best you can,” she said.

“Some days I worry it’s not the greatest interpretation. You can’t create beautiful BSL when the source you’re given is a load of statistics.

“It varies quite a lot. It depends who is presenting on the day, it could be someone who speaks very fast, or if their content is technical. There’s different challenges with different people.”

She said her job is to give a BSL interpretation of what has been said: “I’m not signing word for word what they’re saying,” she said.

“I’m trying to convey the meaning of what they’re saying in BSL.

“It’s the BSL equivalent.”

She said the first few days the briefing was televised she had lot of feedback from deaf people on things such as camera angles.

“There was a time they were panning to people asking questions so people were missing what the questions were,” she said.

She has also been getting feedback on her outfits: “I’d been wearing my one black suit for about a week… I washed it and put on a green dress.

“Then I got texts from deaf people saying it was a better contrast [as] I’m standing in front of grey or black drapes.

“We always wear black so your hands stand out better but because of the background I was being swallowed up.

“Since then I’ve been trying to find green things, but of course, like everyone, I can’t go shopping for clothes at the moment.”

‘Taken off guard’

Like many during lockdown, Ms McShane-Kouyaté is trying to strike a balance between being well-informed about the virus and having time away from it.

“In normal times I’d have the radio on in the morning, listening to the news and be watching news on the television but we’ve stopped that, it can be too much,” she said. “I’ve stopped consuming news.”

It led to a bit of a surprise for her during one of the briefings: “The day that Donald Trump spoke about disinfectant I hadn’t seen the news that morning.

“I couldn’t believe what I was signing. ‘Am I really hearing this right?’ I was really taken off guard,” she said.

“It would have helped if I’d heard that in advance.”

The rights of deaf people have made the news recently with campaigners starting legal proceedings against the UK government over a lack of sign language interpreters at its daily coronavirus briefings.

A Twitter campaign which started as #WhereIsTheInterpreter? has now morphed into a class action legal case.

Number 10 responded, saying the BBC had agreed to use interpreters on the News Channel.

But Ms McShane-Kouyaté is proud of the way Wales has included the deaf community: “[The Welsh Government] has led by example and shown a commitment to equality,” she said.

“I hope it [the daily briefings] is raising the profile of BSL. Hopefully it’s bringing equality issues to the fore…

“Deaf people have the same rights as other people and shouldn’t have to wait until later in the day [to get the same information].”

Deaf people or those with hearing loss will struggle to communicate if more people wear non-medical face masks during the coronavirus pandemic, a charity has said.

Face coverings are not advised in Wales, but are part of the strategy for easing England’s lockdown.

Action on Hearing Loss said people could feel “even more isolated and scared” at an already difficult time.

It said there are more than 575,000 people in Wales with hearing loss.

Karen Robson, of Action on Hearing Loss, said: “We’re hearing a lot of concerns from the deaf community and those with hearing loss.

“Many people who are deaf or have hearing loss rely heavily on visual cues for effective communication, including facial expressions and lip-reading.

“Being able to see lip patterns and facial expressions is also vital for those who communicate through British Sign Language.”

Words which sound similar but have different meanings can become difficult to distinguish.

“Many of these people will be unavoidably impeded by face coverings,” Ms Robson said.

“This has the potential to create further isolation amongst an already marginalised community of people, causing additional stress and anxiety to people at an already very difficult time.”

With England’s advice to cover faces in some public places, it is anticipated more people in Wales will choose to wear masks too.

With more than 70% of the over-70s living with hearing loss, the charity said those people were also more likely to end up in hospital being treated for coronavirus.

There they can experience similar communication problems with nurses and doctors wearing personal protective equipment (PPE), due to being unable to lip-read or properly read expressions, and with sound more muffled by the equipment.

The UK government said it was supporting CARDMEDIC, which provides digital flashcards and other communication aids to NHS Trusts across the UK to help communicate with patients with hearing loss.

A woman from mid Wales, who did not wish to be named, said face coverings posed significant problems for her 11-year-old daughter who has hearing loss.

“British Sign Language relies heavily on facial expression which is why in itself it’s not an answer to the problem of mask wearing,” she said.

“It will help a lot but people who purely use BSL will miss out a lot on the facial expression aspect of the language, and most will use some level of lip-reading.

“It’s also really hard to sign without touching your face.”

‘Lasting trauma’

She said she was also worried about patients not being able to communicate properly.

“The difficulty of communication when wearing PPE is very near the top of my list of reasons why my daughter has to be kept safe [from coronavirus].

“The thought of her having to go to hospital, alone, with people who don’t know her and who can’t communicate with her, frightens me more than the illness.

“There are going to be people that it’s happened to who have lasting trauma because of it.

“I knew medics in PPE are verbalising their usually non-verbal stuff, literally saying ‘I am smiling at you’ to patients.”

Paul Myres, a retired Wrexham GP with hearing loss, said he too had heard of healthcare workers finding such ways to communicate.

Dr Myers, who was Public Health Wales’ lead for primary care quality and development for 10 years and a GP for 30 years, said: “Speech through masks is indistinct.

“Not only have I lost sound level but I have also lost some definition of speech, so any additional blurring makes interpretation difficult or impossible.

“I tend to move closer to speakers to catch what they say. This is not compatible with distancing.”

Dr Myers, 65, said he began to experience hearing loss in his 50s and used hearing aids, but had difficulty understanding his patients.

“I have trouble admitting disability but over the last two or three years of my working life I have informed people and asked them to speak clearly and indicate clearly if they wish to speak to me.

“I ask people to look at me. I don’t lip read as such but watching the lips does help. Understandably people, including at home, forget to look at me.

“As masks are not yet being used regularly in public, I have yet to find out how I and others respond to the difficulty in communicating – there is a temptation on my part to avoid conversation. It will be a problem.”

How can you help?

“Speak as clearly as possible, avoid soft voices but equally not speak too loudly,” Dr Myers said.

“Speak slightly slower than normal, but again if too slow it’s more difficult to interpret missed words if it takes too long to hear the whole sentence.

“Clearly speakers should not touch or lift their mask as that risks contamination. I think it may sometimes be necessary to write things down.

“I have seen masks which have a see-through area by the mouth. I wonder if it reduces the effectiveness of the mask but it allows those with hearing difficulty to see the lips move – and it also allows others to see more facial expressions, which may be reassuring to those who are anxious.

“I think it is worth making the effort to expressing how you feel. We can use our eyes but eyes alone may be misconstrued.

“The forehead may also be visible if head gear is not worn too low and that can show expression.

“Also to remember that people with hearing impairment are not (necessarily) stupid, so to avoid speaking down to them or in a patronising manner.”

Action on Hearing Loss said it had redirected its attention to address the challenges, and is promoting communication tips which include reducing background noise, writing things down, facing the person and using simple gestures.

It has launched a Covid-19 emergency appeal to provide hospitals with equipment to enable easy communication for patients and staff with hearing loss, and a BSL coronavirus information service.

It is hoping to raise £50,000 to buy 300 personal listening devices to help people in hospital.

A Broadway actor who had his right leg amputated while fighting Covid-19 has woken up from a medically induced coma, his wife has revealed.

Amanda Kloots said it was “a miracle” that husband Nick Cordero was on the road to recovery.

The Canadian actor, who was nominated for a Tony Award for the Bullets Over Broadway musical, has been in hospital in Los Angeles since the end of March.

Kloots has been posting regular updates about the 41-year-old’s condition.

A fundraiser set up to support the couple and their young son Elvis has raised more than $500,000 (£407,000).

Cordero was initially admitted to hospital on 30 March after being diagnosed with pneumonia, and later tested positive for coronavirus.

According to his wife, he went into septic shock while in hospital, had two “mini strokes” and had blood clotting complications that resulted in his leg being amputated.

Speaking on Instagram on Tuesday, Kloots said her husband was “extremely weak” but was “following commands which means his mental status is coming back”.

Cordero’s other theatre credits include stints in Waitress, Rock of Ages and the musical version of A Bronx Tale.

The brother of a teenage boy who took his own life has appealed for people to seek help if they are struggling with the psychological effects of lockdown.

Chris Mackell’s 17-year-old brother Matthew was found dead in Dunorlan Park in Tunbridge Wells on 7 May.

Mr Mackell said the A-Level student had been worried his grades would be affected by the closure of his school.

He called for “anyone that is feeling any sort of sadness and is dealing with anything” to speak out.

He said his brother had been fearful of his future, “probably because of the lockdown, where, obviously he’s not doing his work to the same quality, maybe, or he felt like he wasn’t in the right mindset to do it at home versus at school.

“He obviously didn’t see a way out of it.”

Ben West, who set up a mental health campaign after his 15-year-old brother Sam took his own life, said the isolating impacts of lockdown on young people should not be underestimated.

“I absolutely have no doubt in my mind that people who are already struggling are struggling much more because of lockdown,” he said.

“People that rely on people in their lives, such as friends that keep them happy, to not be allowed to see them, to have that lack of social connection, can really impact people’s mental health.”

Psychiatrists and psychologists have called for urgent research into the potential for the coronavirus pandemic to have a “profound” effect on people’s mental health.

On Sunday evening, Boris Johnson set out the roadmap for easing the lockdown in England. It was a complex and at times meandering speech. But it was striking that the prime minister said nothing of the next steps for people who are deemed high risk, who have previously been asked to “shield” from coronavirus by remaining at home for at least 12 weeks. Johnson notably paid tribute to “the fortitude of the elderly whose isolation we all want to end as fast as we can” but made no mention of disabled people enduring the same.
Less than 24 hours later, it was confirmed that “the clinically extremely vulnerable” would have to remain at home and avoid face-to-face contact for “some time yet”.

In recent days there has been concern that high-risk groups may be asked to comply with an extended lockdown just when it is eased for the general population. One poll of disabled people found that only 4% thought an extended lockdown for high-risk groups was “fair”. Meanwhile, Ros Altmann, the former pensions minister, has warned against “blanket bans” to prevent older people leaving their homes, and the actor Michael Palin has said it would be “very wrong” to exclude over-70s from an eased lockdown as there are many who “are very active, very thoughtful, who’ve got lots of ideas”.

Some of this rhetoric is less than helpful. Evidence shows that age (even if the person is fit) and underlying health conditions seriously compromise immunity. It isn’t the government that’s discriminating against older or disabled people – it’s the virus. As a high-risk disabled person, I’ve been shielding at home for months without going out at all. It is not exactly fun, especially to not even get fresh air for an hour like everyone else, but it is sensible. My “ideas” won’t keep me out of ICU.

And yet it is not hard to see why there’s frustration. The guidance for disabled and older people has been so confused in recent weeks that even the health secretary seems to be unsure of whether they are included in the “clinically vulnerable” or extremely vulnerable category. A poll by the Research Institute for Disabled Consumers last week found that 52% of respondents disagreed or strongly disagreed that the government was doing enough to support them during this crisis (up from 44% four weeks ago).

Stuck at home, after watching Downing Street unveil its opaque new “stay alert” slogan, it felt increasingly as if shielders were being forced to suffer the worst of the government’s inaction – from the lack of early testing, delayed lockdown and failure to quarantine arrivals at airports at an earlier stage, to its dire communications strategy.

It is hard to shake the sense that the burden of keeping safe is being placed disproportionately on high-risk groups. A strategy of “keep the disabledinside”, with little to no clarity on what comes next, is as much an attitude problem as a policy one.

Cultural prejudice that equates being disabled with being isolated, unproductive or sexless reinforces the idea that it doesn’t really matter if this group has to give up months – even years – of our lives. If it’s thought that disabled people don’t have jobs to keep, kids to raise, or dates in the pub like “normal people”, it’s much easier to see leaving us at home indefinitely as no big issue. Ministers and the media repeatedly using the word “vulnerable” to describe disabled people in conversations around coronavirus only reinforces this.

The fear in all this is that a two-tier pandemic society is developing. Just as working-class people are being forced back to work while middle-class professionals are staying safe at home, we could see non-disabled people being slowly allowed back out while the disabled community is stuck inside.

Currently, we know more about how close a healthy person can sit to a friend in the park than when disabled people can leave their homes. In the coming months, there will be a need for compromise between high-risk individuals shielding and the collective actions of the rest of the public, be it immunity passports, mandatory face masks, or extensive track and trace (as well as a debate about the ethical and practical issues these actions raise). The fact that unequal access means disabled people were effectively segregated for years before this pandemic only makes this more pressing.

Any prolonged lockdown for high-risk individuals needs to go hand in hand with support from the state – from financial security for those unable to work while shielding, and an increase in disability benefits, to improved food supplies and testing for carers.

We’re already seeing widespread problems with disabled and older people struggling to access food and medicine while shielding. Expecting people to stay at home indefinitely when you can’t even guarantee them a supermarket delivery slot feels very much like being forgotten.

There is rocky terrain for all ahead, and those of us at high risk will have a particularly rough path to tread. And yet what shielders need is simple recognition: to be told the facts like adults, and to feel as if ministers remember we exist. Disabled people have long been used to making judgments about our own health: what’s a risk, what’s safe, what restriction can be overcome. As we wait in hope that Johnson will provide shielders with more details, ministers would do well to ask us what we need. Disabled people’s voices, like our lives, hold more value than society often thinks.