Bruises cover Julie Sharp’s back and thighs. The 34-year-old, who has autism and uses a wheelchair, is due to celebrate her ninth wedding anniversary. Her husband, Sam, 33, who has severe anxiety and autism, shares Julie’s love of musical theatre. They also share a social care package: six hours with a carer a day to help them cook, wash, clean and leave their flat in Rotherham.
But the couple, like many disabled people who rely on social care, have had their support abruptly pulled during the coronavirus lockdown. Carer hours have become two phone calls – a voice that checks in “to see if we’re OK”.
A study by the Research Institute for Disabled Consumers shows 50% of disabled people with care support needs surveyed are no longer receiving health or personal care visits to their home as councils struggle under the weight of the pandemic. An estimated 4.5 million people have been forced to fill in the gap as unpaid carers for loved ones while the state pulls back.
The Sharps are trying to survive together with a military-style timetable: up at 4am for medications, and then slowly helping each other dress, wash and eat breakfast. The routine is painstaking and takes up to five hours. They are lucky if they get one meal a day, Julie says. A phone call can’t cook tea.
A week ago, Julie fainted when getting out of her wheelchair and fell on to the toilet. Her finger is dislocated, black from the bruising and she’s in so much pain she can only sit on a quilt. Julie apologises for being teary. “We’re both utterly and totally exhausted.”
The crisis in UK care homes during the coronavirus pandemic has dominated the social care agenda in recent weeks but disabled and older people who receive care in the community are facing their own ordeal. Reduced support services, and paid care workers isolating or left without personal protective equipment, have created a perfect storm of skeletal care on top of a decade of underfunding and staff shortages before the pandemic hit.
As the coronavirus outbreak began in March, the government passed controversial emergency legislation that freed councils of many of their duties under the Care Act 2014 – making it legal to no longer “meet the needs” of someone assessed as eligible for support.
The Guardian has spoken to a dozen disabled people and carers who have lost their social care during the pandemic: from parents of disabled children who have injured their backs after having all care and respite cancelled, to those who are shielding due to being high risk but have no one to shop for food because their carer is off sick.
Jenny Atkins (not her real name), 52, has not been able to wash her hair in weeks. Atkins, a buyer for design boutiques before she fell ill with ME and fibromyalgia, had been getting 13.5 hours of care a week from her local council to help her wash, cook and clean until lockdown. “They sent me a letter [in March] saying ‘due to the impact of Covid-19 we will be unable to provide you with any home care service until further notice’,” she says. “It felt like the rug had been pulled from under me.”
The three cats that patrol her small flat in west Scotland are now Atkins’ only support. She had major chest surgery only weeks before her care package was removed and no carer means she is in extra pain and struggling to breathe. Meals are a mountain. “Most days it’s just been toast, fruit, tinned food and snacks,” she says.
When Atkins last made a pot of soup, it took her three days – a task completed a bit at a time. Mental exhaustion meant she placed the pot lid on the hob, forgetting it was on. Smoke billowed out as the plastic melted but she caught it before a fire started. “That did scare me,” she admits.
Design and style magazines lay around the flat but nowadays even having clean hair is almost impossible. She tries to make light of it. “Personal hygiene in general has hit an all-time low. Baby wipes have come in handy.”
In Rotherham, the Sharps are struggling to sleep from the stress. Rotherham council say they are in regular contact with Julie and are providing the “appropriate support” as the couple’s “needs and requests change”. The council has started a new care assessment, Julie says, but it is incomplete with no end date in sight. She’s anxious about what the next few weeks will hold. “It’s only going to be a matter of time before one of us blacks out again.”
A Department for Health and Social Care spokesperson said: “We understand that this is a challenging time for disabled people and we remain committed to supporting them and their carers through every stage of this pandemic.
“We are urgently working with stakeholders and across government to assess the impact of measures to ease lockdown, and what reasonable adjustments are needed to best support disabled people.
“We recently announced an extra £63m to support those who are most vulnerable, so they can afford food and other essentials, and the rate of carer’s allowance has also increased. We continue to work closely with carers’ organisations to provide further support for unpaid carers during this outbreak, including funding to extend Carers UK’s helpline opening times.”