'It tortures me to imagine her dying without us' – the life and lonely death of Doreen Chappell

If Doreen Chappell’s first marriage was a disaster, her second one was a great success. She was born Doreen Brenda Ward in the East End of London, in 1936; her mother was a seamstress, her father, who had seen action at Gallipoli, later became a telecoms engineer.

It was a working-class household: Doreen left school at 15 to look for a job. Like many young women of the era, she became a typist and secretary, even having elocution classes to improve her chances of getting work.

Doreen married young, at 23. Her family didn’t approve – none of them attended the wedding – and when the marriage began to fall apart, they didn’t step in to help. “They thought that she’d made her bed, so now she should lie in it,” says her son, Simon. Doreen’s husband would disappear for weeks at a time, leaving her with the children. Eventually, when Simon was five and her daughter Melanie was a baby, he absconded for good, moving abroad to avoid paying child support. The children have had no contact with him since; they don’t even know if he’s alive.

What followed next was a period of penury that was almost Victorian in its severity. The family moved into a high-rise building where the lift stank of urine. Doreen worked as a cleaner, bringing the children to work with her. She couldn’t afford to heat the flat, so she would take Simon and Melanie for long walks to keep warm. Simon remembers these walks, and the balaclava his mum knitted for him to wear on them. Doreen wasn’t a great knitter, so it had no eye holes. She made him wear it anyway.

There wasn’t enough money for food, so Doreen fed the children and went hungry herself. Her weight dropped to six stone. Lying in bed at night, Simon used to pray for roast chicken. Eventually social services got involved, and threatened to take the children away. But then, in 1968, at a barbecue, she met John Chappell, and he saved her. He was 26, a farmer, five years younger than her.

John is taciturn and Doreen was loquacious – her best friend, Dawn, used to joke that she could talk to a lamp-post – and she talked and talked, and he stood there with a beer and listened. Then he put Doreen, Melanie and Simon in his car, and drove them back to his farm, and they never went hungry or felt cold again. “When he came along,” remembers Simon, “I really thought that God had sent him.”

Doreen and John were engaged within six weeks, and married in 1969. They stayed together for half a century, and they loved each other until the end. “It worked between us,” says John, now 78. “We stayed together for over 50 years. We were soulmates – from the time we got together, we were a pair.”

The trauma of those early years faded, but never really went away. Doreen was left with an enduring terror of abandonment: when she had to be separated from John for any reason, she would become emotional. If a family member was late coming home, she would panic. “It left her quite scarred mentally,” recalls Simon, now 57 and the owner of a marketing business in Warwickshire. “Because my blood father would not come home all night and left her alone. So my father would never leave her. For 50 years, he was by her side. They worked together. He never went to the pub without her. He was always on time coming home.”

Which is why the manner of Doreen’s death was so cruel. When Doreen Chappell died of Covid-19 on 13 April, at the age of 83, John wasn’t there; none of her family were. There was a nurse to hold her hand at the end, but for most of her last week on Earth Doreen was totally alone. “The pain is indescribable,” says Simon. “The thought of Mum not being able to breathe, and suffocating. But the layer that sits on top of all of this is that Mum would have been scared. That’s the way she was. And we weren’t there.”

* * *

Because her children’s early years were full of privation, when Doreen escaped from poverty, she focused all her energy on creating a safe, loving home for them. There was always a cake in the oven and food in the fridge. Even when Melanie was grown up, visiting with her husband and daughters, Doreen would lay out a dressing gown for her, put flowers in the room, tuck a hot-water bottle at the end of the bed. “You’d feel like a child again,” says Melanie, 54, who runs a business supplying central heating equipment in Northampton. “It was such a lovely, safe, comforting feeling.”

Doreen and John had a child together, Alison, and the family moved from Sussex to a farm in Cornwall in 1973. It was a hard life – the farm was never really big enough to be profitable – and John and Doreen used to let cottages to tourists to make ends meet. If you had visited the house in those days, you would have found Doreen in the kitchen, reading Daphne du Maurier novels, or ghost stories – she was a voracious reader – or preparing something ugly-looking but delicious. “We’d always say her cooking looked blooming awful,” says John, “but it tasted good.”

The house in Cornwall was a ramshackle affair that had been listed in the Domesday Book. “She swore the farmhouse was haunted,” Simon says. “She could hear the stairs creaking in the night.” In adulthood, Simon confessed to his mother: the creaking was him, slipping out to see his girlfriend. But she was unmoving. “She would say: ‘But the clairvoyant came and she could sense there were ghosts in the wall!’” Simon laughs.

When she spoke, which was often, Doreen waved her hands around as if she was conducting an imaginary orchestra. She would chat to strangers on park benches, in shops, on buses. When Melanie remembers her mum, it’s like this: standing outside the holiday cottages, her arms full of laundry and cleaning supplies. It’s changeover day, and Doreen is meant to be cleaning out the cottages. Only she keeps stopping to chat with everyone who walks past. “Everything used to take so long,” Melanie laughs, “because she’d stop to talk to everybody.”

Doreen was a klutz. John wouldn’t let her near the tractor, for her own good. Once she left her Hillman Imp in gear outside the supermarket. When she turned the engine on, the car crashed through the supermarket window. “We were literally sitting in the aisle of this supermarket,” says Simon, “in the car. Mum sat there for a bit, and then started laughing. The shopkeeper came over and started shouting, and Mum said: ‘I’m so sorry! I didn’t want to use a trolley, so I thought I’d use the car.’” John saw the funny side. “They asked me what she was doing at the time on the insurance form,” John notes drily. “I wrote: ‘Window shopping.’”

* * *

Because Doreen was so clumsy, her family took some time to realise her motor skills were deteriorating. There was that time in 1983 when they were picking raspberries and Doreen fell over. “She went, bang,” Simon remembers. “We said: ‘What happened there?’ She said: ‘I don’t really know.’ You think: ‘Ah well. Maybe she tripped.’” In 2000, John and Doreen retired to Cumbria, where they spent their weekends walking or touring historic sites – both were history buffs, and they had chosen Cumbria to be near Hadrian’s Wall. There were other falls on country walks, some of them nasty, and Doreen was diagnosed with cerebellar ataxia, a neurological condition that affects the area of the brain responsible for controlling gait and muscle coordination, that same year.

For someone who had always been so physically active – Doreen would go jive-dancing in her 20s – losing her mobility was a hammer blow. By 2009, she was using a wheelchair. “She hated the wheelchair,” says John, “but she accepted it.” He would try to keep her spirits up, but she was often morose. “She felt that there was a stigma around being disabled,” Simon says. “People assumed she didn’t have a brain.” When visiting historic buildings, Doreen would often find that they weren’t wheelchair-accessible. “Things like that made her feel embarrassed,” says Simon. “They made her feel like she was a nuisance.”

On a family holiday in Rome in 2010, Doreen hauled herself through the catacombs after being told the tourist attraction wasn’t wheelchair-accessible. “To this day, I don’t know how she did it,” Simon marvels. “We had to move one leg forward for her, and then another, and she was hanging on to the rails on the side. It was incredible.” This is how Simon likes to remember her: being wheeled around the historic landmarks of Rome; drinking aperitivos in the sun. Doreen was happy. “She’d been worried about whether the wheelchair would get in the way of visiting the monument, but when we got there, she loved it.”

In her 60s and 70s, Doreen was as she ever was: the voluble centre of gravity in the family home. Melanie used to visit her parents around Easter. “My husband and Dad would go for a beer,” she remembers. “Mum and I would prepare the vegetables with a glass of wine. I loved those times. Just that simple hour of being with Mum and catching up.” She sobs. “I will miss that.”

* * *

In 2017, John and Doreen moved into Tithe Lodge, an assisted living facility managed by the Orbit housing association in Southam, Warwickshire. Also on site were carers from Unique Senior Care, which provided services to residents on an as-needed basis. By now, John was Doreen’s full-time carer: without him, she couldn’t get out of bed in the morning, use the bathroom or dress herself. “She lost her mojo a bit,” Simon remembers of her move into Tithe Lodge. “She wasn’t as sociable – but they made the best of it. They made friends. They still did everything together.”

When the coronavirus pandemic hit, John and Doreen did what they were supposed to do: they shielded at home, and had their food shopping delivered to their door. Both were high-risk: Doreen because of her disability, and John because he had been diagnosed with bowel cancer in 2012. They were riding out the pandemic in their flat, together, until John woke up on 29 March to find he was haemorrhaging, and was admitted to Warwick hospital for tests.

While John was in the hospital, carers from Unique Senior Care came into the flat to assist Doreen. They visited three times a day, to wash and dress her, give her lunch and put her to bed. She told her family they did not wear PPE. “She rang me one night in tears,” Simon remembers, “saying: ‘They came to put me to bed, and they weren’t wearing masks. I saw on television that they should be wearing masks and a gown and a shield, and they’re not.’” John says he also saw carers doing rounds of the facility, without PPE.

A spokesperson for Unique Senior Care told me: “Throughout the Covid pandemic, we have followed all Public Health England guidelines with regards to procedures and PPE as we have received them. I can also advise that we have had a constant and uninterrupted supply of PPE for all of our care team, which has allowed us to remain compliant with the aforementioned guidelines.”

Tony Clark, the director of independent living at Orbit, which operates Tithe Lodge, said that Orbit was “deeply saddened by the death of Mrs Chappell … We work closely with local authority partners and the agencies that provide care for our residents, to ensure that the most up-to-date guidance from Public Health England has and continues to be followed. We have not been made aware of any instances where this guidance has not been adhered to.”

Government advice from this period – when all existing PPE stock was being frantically directed towards the NHS – was confused and contradictory. Guidance published on 13 March advised that care home operators did not need to provide their staff with PPE. “If neither the care worker nor the individual receiving care and support is symptomatic,” reads the guidance, “then no personal protective equipment is required above and beyond normal good hygiene practices.” (This guidance was withdrawn on 13 May.)

Guidance issued on 2 April by Public Health England, however, required care workers making visits to clinically extremely vulnerable people to wear PPE. (Although Doreen and John were both vulnerable, they never received letters from the government advising them to shield, and the family is unsure if they were on the official shielding register for the clinically extremely vulnerable.) The contradictions between these two sets of guidance was not cleared up by the government for six weeks. A report from the Healthcare Safety Investigation Branch in August criticised this failure. “There was no straightforward way of navigating the gov.uk website,” the report found. “The guidance was not visible.”

This failure to consistently mandate the provision of PPE in the care sector, despite scientists knowing at the time that Covid-19 could be transmitted asymptomatically, has been condemned by MPs. “Too often the basis for decisions or changes, such as on PPE, was seemingly based upon what the system could cope with, rather than clinic advice and ‘what was right’,” the public accounts committee concluded in July.

John was discharged from hospital on 31 March, after testing negative for Covid-19. (This is not conclusive proof that he did not have Covid, since research in May showed that as many as 29% of tests could deliver a false negative result, but he did not develop any of the classic symptoms.) On 6 April, Doreen started to cough. On 8 April, she had blood in her stools, so an ambulance took her to hospital. She was discharged the following day, but was still passing blood, so John called the ambulance again on 9 April. He kissed his wife of 51 years goodbye, expecting to see her in a few days. “Within 24 hours,” says John, “we were told she had Covid, and that was the end of it. I’m sure it must have been the carers who gave it to her. I think we deserved better.”

At this time, Warwick hospital was not accepting visitors, even for end-of-life patients. Doreen’s family know that she would have been terrified, and that is hard for them to endure. “That was the first time in 50 years that she was left alone, anywhere,” says Simon. “She was in that hospital on her own for four days. She would have been a very frightened woman.” Melanie’s husband had to physically restrain her from going to the hospital.

Doctors told the family that Doreen was not a candidate for intensive care. “You trust the doctors and nurses are doing their best,” says Simon. “But when someone tells you that they won’t take your mum into intensive care because she isn’t ‘suitable’, it’s devastating. The only way that I can describe it is that it feels like they’ve given up on her.” He pauses. “I am reluctant to place blame on doctors,” he says. “But the truth of the matter is, if you’re disabled, in a wheelchair, it feels like a different ballgame.”

Doreen died on the evening of 13 April. “It haunts you,” says Melanie. “I have sleepless nights over it. The fact that I couldn’t get in there to see her, to hold her hand, to be with her that one last time … It tortures me to imagine her there. With none of us with her. She will have been so confused about why we weren’t there. And that will stay with me for a long time.”

* * *

Doreen Chappell’s family believe that she would be alive today had she not been disabled. “This woman had a will of iron,” Simon insists. “She had more fight in her than most people. The disability was the difference between life and death.” Doreen is one of 22,447 disabled people who died of Covid-19 in England and Wales between 2 March and 15 May – nearly 60% of the total death toll.

Covid has ripped through the disabled population mercilessly, rampantly. In England and Wales between March and May, disabled women and girls aged between nine and 64 who were “limited a lot” in daily activities were 11.3 times more likely to die than non-disabled people, and disabled men in this age and disability bracket were 6.5 times more likely to die. Disabled women aged 65 and over were 3.2 times more likely to die than non-disabled people; it was 2.4 times for men. These are calamitous numbers, and yet the public seems largely unaffected by the scale of this devastation. “These are just numbers to most people,” says Simon. “People think, ‘Oh, they had an underlying health condition, so it’s OK they died. I’m safe, because I don’t have an underlying condition.’ How rubbish is that?”

The government’s handling of its obligations towards disabled people, particularly during the early days of the pandemic, left much to be desired. “Disabled people felt abandoned,” says Fazilet Hadi of Disability Rights UK. On 18 March, the government issued a list of about 1.5 million high-risk individuals who should shield at home and be given preferential slots for supermarket deliveries. “Millions of disabled people found themselves not on the shielded list,” says Hadi. “Suddenly, disabled people who’d always done their food shopping online were told: ‘Sorry, those slots aren’t available any more.’” According to one survey of disabled people living in Manchester, 80% of respondents were not in the official shielded group. The government eventually added another 700,000 people to the register, but not until panic and alarm had rippled through the disabled community. “Charities were getting inundated with calls from disabled people who couldn’t get food,” says Fadi.

The publication, by the National Institute for Health and Care Excellence (Nice), of the clinical frailty scale on 20 March was a low point in the relationship between disabled people and the government. The scale assigned a numerical value to individuals, based on whether they had existing conditions. Those rated five and above – meaning that they needed help with housework and shopping – were considered less suitable candidates for beds in an intensive therapy unit (ITU). “As a rule of thumb,” an intensive care doctor working at a hospital in Essex, who prefers to remain anonymous, tells me, “under five, you’d always be considered for ITU. Five and above doesn’t mean you wouldn’t be considered for ITU. But you’d need to have a good reason.”

He insists that the scale does not discriminate against disabled people. “The frailty isn’t the only scoring system,” he says. “It’s a tool to help decision-making; just because someone has a disability doesn’t rule them out of intensive care.” But he acknowledges that at the peak of the pandemic – when intensive care doctors and nurses worked overtime in sweat-filled protective suits – a disabled person might have been considered a less suitable candidate for intensive care, if a non-disabled person also needed the bed. “I never saw a case of refusing someone a bed because another person was more suitable,” he says. “But subconsciously, it’s always a factor. Medicine is a finite resource. You think: ‘If I take this patient, I don’t have any more beds left if someone else needs it.’”

After an outcry from disability rights groups, Nice updated its guidance on 25 March to state that the tool should not be used for those with learning disabilities, or stable long-term disabilities such as cerebral palsy. But among the disabled community, uncertainty prevails. “Are we going to be treated equally when we get to critical care?” says Hadi. “It [the guidance] left a feeling that we wouldn’t be.”

While disability rights campaigners were challenging the Nice guidance, and mobilising support networks to help disabled people access food supplies, a new insult was added to injury: the government passed the Coronavirus Act on 25 March, giving local authorities the ability to reduce their provisions for social care support – a move that disproportionately affected disabled people. “It signalled to disabled people that, actually, we weren’t that important,” says Hadi. “Because if councils were under pressure, they could stop supporting us.”

As ministers ruthlessly prioritised reducing NHS admissions at any cost, some GP practices began updating the records of disabled people with “do not resuscitate” orders without consulting patients and families. (These orders advise paramedics and hospital staff not to attempt resuscitation, in the event of a cardiac arrest.) “I was shocked when I got the phone call,” says Darren Hunt, the manager of Rix House in Bradford, a 15-bed home for adults with physical or learning disabilities.

It was mid-April, and the Rix House staffer on the other end of the line informed Hunt that one of the GP practices that look after Rix House’s residents had issued DNRs for six residents. But when Hunt investigated further, it appeared that the practice had not properly consulted the residents and their families before issuing the orders. In two out of the six cases, the individuals had capacity, meaning they had the legal right to make decisions about their own care. “That was disappointing,” says Hunt. “The forms the GP filled out stated that they didn’t have capacity. But the only way you can understand that is if you complete an assessment with them. How could you do that without coming to see that person?

“They didn’t want people to go into hospital, I can appreciate that,” he continues. “Hospitals were overwhelmed.” But it seemed to him that the GP was putting these DNRs in place because individuals had a learning disability. He could think of no other reason.

Hunt challenged the DNRs and they were subsequently rescinded. But the overall experience left a bitter taste in his mouth. “For a lot of the people we support, we’re their only voices – they may not have family members,” he says. “Without us fighting for them, they haven’t got anybody. At the end of the day, what right do we have to take away a person’s life because they have a disability?”

Through the worst of the pandemic, disabled people sometimes felt as if their lives were judged as less deserving of the best treatment and care by the government and healthcare authorities. “There was this sense that if someone was healthy, their life was more valuable than yours,” says Hadi. Daily death tolls demarcated those with underlying health conditions and those without, as if it was only really important for the public to know how many healthy people were dying. “People say to me,” says Simon, “‘Well, most of these people would have died in the next six or 12 months anyway.’ But every extra day I could have had with my mother would have been pure gold. We lost her too early.”

* * *

In the months since Doreen’s death, her family’s grief has become coloured with rage. “At the time my mum got Covid, the whole country was two-metres distancing,” says Simon. “It doesn’t take a rocket scientist to work out that if the government said we should be two metres apart, and you’re going to put a carer within six inches of my mother’s face with no PPE, that’s going to increase the risk of her getting Covid. You can point at the government guidance all you want – but care companies also have a responsibility.”

Simon is a member of the Covid-19 Bereaved Families for Justice group, which is campaigning for an immediate public inquiry into the government’s handling of the pandemic. But anger has a corrosive effect, and the family are also trying to get on with the business of living. “When there’s something on television,” John says, “you start talking and then turn around to find an empty chair.” He has started gardening, for something to do. With the other residents at Tithe Lodge, he is growing tomatoes, courgettes and runner beans. They planted a bed of freesias to remember Doreen by – they were her favourite.

Melanie feels guilt that she wasn’t there with her mother at the end, even though intellectually she knows it wasn’t her fault. Sometimes she wakes up in the middle of the night and talks to her mother, and says sorry for not being there when she died. Before she falls asleep, Melanie says: “I try to remember her. I imagine the touch of her hand.” She sleeps with her mother’s makeup bag on her bedside table. “It smells of her,” Melanie explains. “It comforts me. I’m dreading that smell fading.”

So much death, and so much of it alone. Doreen Chappell was loved; she had family; she was taken before her time. She must have been scared. It was no way to go.