Guardian readers share their experiences as calls grow for food scheme to be expanded
Mon 27 Apr 2020 08.41 EDT
Last modified on Mon 27 Apr 2020 09.20 EDT
The Guardian’s investigation into disabled people going without food after being missed off the coronavirus vulnerable list has led to a vociferous response from readers and public bodies.
The government’s scheme entitles 1.5 million people at high risk from coronavirus to food parcels and priority online deliveries, but conditions from cancer to motor neurone disease are being excluded from support because of the selective criteria. (The scheme is England-only and devolved countries have expressed concern about their own arrangements.)
Charities and organisations joined the Guardian’s call to expand the list as concern grows that many are falling through the cracks. The Equality and Human Rights Commission has written to the British Retail Consortium to ask members to do all they can to support disabled people not on the government’s list, while the Royal National Institute of Blind People is campaigning for visually impaired people to be included.
The disability charity Scope says it has heard from huge numbers of disabled people who have been forced to put their health at risk by going to the supermarket.
Guardian readers got in touch to share their experiences of trying to register on the list, and the impact of being missed off.
“Our sister Katie has not been included on the list, despite being on oxygen, non-verbal, and a wheelchair user. Our mum moved Katie out of her assisted living home a few weeks ahead of the government shutdown to live with her, which was absolutely the right thing to do, but they are now in a very rural part of mid-Wales and have limited access to resources.
“I’m shocked but not surprised that she has been excluded – I have no faith that this government knows or cares how to support the most vulnerable members of society. I would love to understand what their criteria was, and why someone on oxygen was not automatically regarded as vulnerable.”
“My housemate is severely visually impaired. I use a wheelchair. We are both autistic. I’ve been campaigning since the list went live because it excludes so many of us. I managed to get on the Tesco list a few days ago but the earliest delivery available is 17 May and when I talk to supermarkets they don’t seem to get that the government list is in effect useless. I’ve had disabled friends tell me to lie about my conditions to get on the list but that’s fraud. And I shouldn’t have to. Neither my housemate nor I drive and we are dependent on her 70-year-old dad and Amazon Prime and takeaways.”
“I had lung cancer (I am a non-smoker) and had half of my left lung removed four months ago. It left me unable to function on a day-to-day basis, so Macmillan helped me apply for PIP [personal independence payments] in January.
“My home visit was set for 5 March but cancelled [due to the lockdown] and I’m now waiting for a letter to tell me when I will have a telephone assessment.
“In the meantime, I am really struggling to manage. I am not classed as vulnerable, even though catching the virus could kill me. I can’t get out of the house and have only £200 a month. It’s difficult and I feel like I’m stuck in a hiatus. I’m not in a dire situation, and not the worst off by any means, but it’s very annoying and frustrating. You just fall through the net. People like me are just a statistic.”
“We’re unable to register on the government’s vulnerable website as a residential home. When we signed up for online shopping from Sainsbury’s some 10 years ago, it was in the manager’s name, therefore, on the government website he is not identified as a vulnerable person. The home is invisible.
“Our residents have learning disabilities, early onset dementia, autism and another has cerebral palsy. My staff, who are working to ensure their safety by self-isolating with them, are now in a position where they have to go out to the supermarket to buy food for the home.”
“I can barely walk. Both hips need replacement. No friends or relatives nearby. Neighbours indifferent. Taxis and public transport difficult to use to access supermarket. I don’t have a car as the DWP [Department for Work and Pensions] didn’t award sufficient points for [my disability benefits], though deemed severely disabled. Online shopping is clogged. So I do a small shop at local 100m away once a day. It’s not at all easy. The walk gets done in three or five times the normal walking speed, with crutches. Painful. Queuing outside supermarkets when I get there is impossible. I contacted my support worker three weeks ago regarding prioritisation for online shopping. No response.”
“I have been unable to register as vulnerable, even though the reality of me dying if I contract coronavirus is extremely high. I can’t feed myself or go to the toilet myself. I use my chin and mouth to use a computer. I have sleep apnoea and need to use a CPAP [breathing] machine every night, arthritis, chronic pain and fatigue and often struggle to get out of bed.
“Although I don’t fit on the government’s list, I am prone to chest infections and can get very ill very quickly, which is why I now have emergency antibiotics at home. I have had pneumonia twice and in 2016 I spent three weeks on and off a ventilator. Due to my disability, I have 24/7 personal assistance [but] every time my PA needs to go to the shop there is a heightened risk of them carrying the virus to me.”
“I’m a severely disabled pensioner with ME and bad osteoarthritis. I’m often house/bed bound and unable to shop at supermarkets. For over a year I’ve depended entirely on home delivery services. I have not received a letter from the government classing me as highly vulnerable. I’ve self-referred and registered three times. I’ve had no reply or any news to date. I’ve no family, friends or any support network whatsoever. It’s like it’s in the laps of the gods and if the gods are in a good mood then you’ll get help.
“I’ve been able to get Tesco to offer me a priority slot but I have to wait for them at midnight. I’m amazed and disgusted by the levels of incompetence reached by this current administration.
“It’s been very difficult. I felt completely invisible for the first few weeks of the pandemic – it was very unsettling.”
“I’m struggling to care for my 77-year-old mum, my 30-year-old autistic son and my 40-year-old daughter who has mental health issues and is also 20 weeks pregnant. I’m an amputee myself – sometimes my leg socket is so sore I need a wheelchair – and I have an autoimmune disorder, yet I cannot, cannot get them on any of the so-called vulnerable people lists for simple things like food delivery. So each day I need to put myself out there in the hope I don’t spread anything or pick anything up.
“It’s OK for politicians of all colours saying all this help is out there but when you try to access it, you’re like the umpteenth thousand in line because someone else needs it just that little bit more. It shouldn’t be like this.”
Additional reporting Rachel Obordo
