Peter Lodge devoted his life to his son, David. He cherished every moment with him, even when David’s condition left them effectively housebound. Right up until he was 74, Peter would sleep on the living room floor beside David’s hospital bed. Not once did he see his role as a burden.
He was angry, though. He was angry at what he described as the “state exploitation” of family carers. Angry at the pittance paid in carer’s allowance to those giving up their lives to care for loved ones, propping up the UK’s ailing social care system in doing so. It was, he said, “insulting”.
In 2005, the year his son was registered blind, Peter felt so strongly about the treatment of family carers he wrote to the Guardian, accusing the government of “paying lip service to the vast contribution being made by such hard-working, selfless, undervalued individuals”.
Twenty years on – with the plight of unpaid carers still in the news after an ongoing Guardian investigation into the carer’s allowance scandal revealed how tens of thousands have been unfairly treated by the government – this newspaper can now tell the story of Peter and David that charities say should shame the nation.
David Lodge was his usual playful self when his sister, Dr Keri Lodge, last saw him on a bitterly cold winter evening three years ago.
Both in their forties, they still had the same jokey sibling dynamic as when they were younger: David, the cheeky one; Keri, the protective big sister.
David was born with a range of complex health conditions including autism, a learning disability and a coordination disorder called dyspraxia. He was partially sighted and later registered blind. Unable to talk, he became proficient at using a small typewriter, called a Lightwriter, to communicate.
They lived nearly 60 miles across Yorkshire from each other – Keri with her young family in York, and David and Peter in the terraced home in Hull where they grew up. But she would visit every Wednesday, giving her father his one weekly window of respite.
David so looked forward to Keri’s visits. In the Makaton signing system that he used to communicate, David would make the symbol for sister last thing at night and first thing in the morning before she arrived. Keri saw going back to Hull as “coming home”. She rang them every day.
On the night they last spoke, David used his Lightwriter to tell Keri to cut her daughters’ toenails – his usual teasing goodbye. And as she made for the door, he smiled, ruffled his sister’s hair, blew her a raspberry, then waved.
Seven days later, on 12 January 2022, Keri arrived for her weekly visit to find her brother sprawled on the living room floor. He was barely breathing.
Beside him was their 74-year-old father, Peter. At first, Keri thought they were sleeping. Their feet were intertwined. She wondered why they would be taking a nap on the living room floor. Then her eyes travelled to her father’s face. He was dead.
A post-mortem examination found Peter had died as long as four days earlier. David had lain undiscovered next to him all that time, unable to call for help. Keri believes he must have fallen to the ground as he tried to come to his father’s aid.
By the time paramedics arrived, David was barely conscious. He was rushed to Hull Royal Infirmary where he was treated for pneumonia and severe dehydration, but doctors thought he would pull through and within hours were planning his discharge.
Then, in the early hours of the morning on 13 January 2022, his condition worsened and he suffered a heart attack. At around 4am, 13 hours after Keri found him, he was pronounced dead. He had just turned 40.
Reliving those heart-rending final hours is as traumatic three years on for Keri as it was at the time. She agonises about how terrified and helpless they both must have felt. Her father’s dying thoughts, she says, would almost certainly have been about how David would get help.
Keri has decided to tell their story after growing outrage about the treatment of unpaid carers like her father, which have been exposed by a months-long Guardian investigation.
Ultimately, she believes, her father and her brother would still be alive if the state cared more about those who devote their lives to looking after the most vulnerable.
“My dad never had a day off, never had sick leave, and was working literally 24/7 when he died essentially at work,” she said.
Peter was very fit for his age. He never smoked, never drank, had a healthy diet and went running on the days Keri took over caring for her brother. “He wanted to keep himself fit for David,” she said.
He died suddenly from complications caused by a gastric ulcer, which had gone undiagnosed.
Keri believes it was caused by the relentless exhaustion of caring around-the-clock: “He died due to a condition that’s brought about by stress, and the stress was from caring.”
“If that stress had been alleviated – you can never say never [but] perhaps he wouldn’t have died. And the reason that David died was because my dad died, ultimately. And nobody found him in time.”
Peter had been David’s permanent carer since his son was young, when he gave up work to be a stay-at-home dad. It was a role he cherished, but it took its toll. Recently, his only break was when Keri visited, which allowed him to “do basic things, like get a wash,” she said.
Keri said her father had been “powered by unconditional love” but he felt the government took advantage of the nearly 6 million people like him who care for a loved one, saving the taxpayer at least £162bn a year.
“They cherished each other,” Keri said. “But it was a strain on my dad, not least the sleep deprivation. I think the strain of caring contributed to, if not caused, his death.”
In his letter to the Guardian in 2005, Peter pleaded with ministers to increase the rate of carer’s allowance, the meagre weekly benefit paid to those who save the state billions a year, then worth less than 50p an hour for someone providing at least 100 hours of care a week. Today that figure would be 82p an hour.
He stopped being eligible for carer’s allowance when he reached state pension age but to the end felt “insulted” by the paltry figure, Keri said. The benefit is currently £81.90 a week – the equivalent of 82p an hour for someone providing 100 hours of care a week.
“Dad felt very angry about what he saw as state exploitation of unpaid carers,” she said.
“I really don’t think many people understand that if you are a full-time unpaid carer like my dad, you are on call 24/7, 365 days of the year, with no rest breaks, no sick leave and no annual leave. It requires superhuman strength and fortitude, but it does come at a cost.”
Keri made the difficult decision to share her family’s story to call for urgent changes to a system she believes is failing carers and their loved ones.
She wants local authorities and the NHS to be legally obliged to plan for how vulnerable people will get help in the event of an emergency.
Although Peter was healthy for his age, this was something that increasingly worried him. He raised it several times as he entered his seventies, Keri said, adding that he had asked David’s social worker how his son would raise the alarm if Peter “dropped down dead”. He never felt there was a plan.
In 2022, months after Peter and David died, NHS England created a new code to indicate when a “carer contingency plan” was in place for a family. But this only covers cases where a carer can no longer provide the same level of care due to illness or other reasons. It does not address what will happen to the cared-for person if their carer suffers a medical emergency like Peter.
There was never a robust plan for Peter and David despite the family raising it multiple times with Hull city council, said Keri, who is an NHS consultant psychiatrist specialising in learning disabilities and autism.
Their deaths have echoes of the harrowing case of Bronson Battersby, the two-year-old who died of dehydration after being unable to call for help when his 60-year-old father, Kenneth, suffered a fatal heart attack at their home in Skegness, Lincolnshire, last year. Bronson was known to social workers and would typically be seen every month.
But it is not clear what plans, if any, were in place for how he would get help in the event of an emergency. Lincolnshire county council declined to comment when asked whether any such plans were in place, adding that it would not discuss the case until after an inquest later this year.
Technology is available for carers or their loved ones to seek help in emergencies. Lifeline pendants are offered routinely to the elderly. One was considered for David but was deemed unsuitable because his autism meant he was very sensitive to what he wore. Since his death, Keri has discovered apps that can be used to raise the alarm. She thinks David would have been able to use such a device, potentially saving his life and even his father’s.
The failure to plan for an emergency was just the final way David and Peter were failed by the state, their family say. “They made decisions about his life which demeaned and devalued him, ignored his communication of distress and, ultimately, led to the social circumstances at the time of his death,” Keri said.
By the time David died, he had several traumatic experiences of care settings and being removed from home. All he wanted was to be at home with his father, and that is all Peter wanted too. The family repeatedly asked for David to be given daytime support, allowing Peter some respite, but were told by Hull city council that the only option was a short stay in a care home with a view to moving there long term.
An inquest into David’s death concluded in January that he was also failed in his final hours. In a preventing future deaths report, issued in the most serious cases of harm, the coroner Edward Steele found that the “neglect” of clinicians had contributed to his death. Among the failings was that David was never offered any pain relief and that basic examinations were not carried out. The charity Mencap said David’s death highlighted “systemic failings” that were “deeply shocking”.
At home in York, Keri proudly shows off a multi-coloured collage made by David that brightens her dining room wall. On the living room fireplace is a framed poem written by their father five years ago about moving David to a care home.
“Home,” he writes, is “a place one misses; a place one prefers to any other place; a place one runs back to: a home that cares, not a care home.”
The charity Carers UK backed Keri’s call for state bodies to have proper contingency plans for carers and their loved ones in the event of an emergency.
Tamara Sandoul, its head of policy, said her charity was “shocked and saddened” by David and Peter’s story.
She added: “Despite the vital contribution they make, there is a widespread lack of formal support for carers. Many are extremely concerned about how they will cope in the future. Yet without unpaid carers, our health and social care systems would collapse.”
Hull city council said in a statement: “We are very saddened by the death of David Lodge and we offer our deepest condolences to his family. We are committed to ensuring that any learning to prevent future deaths is acted upon as a priority.
A council spokesperson said a safeguarding adult review, undertaken in 2022, was being revisited in light of the inquest. A separate review, examining its work with people who have learning disabilities and autism, was also underway. The council said findings from each of these would be published.
A spokesperson for the NHS Humber health partnership, which oversees Hull Royal Infirmary, said: “We would like to extend our deepest condolences to the family of Mr Lodge. We always try to learn where processes could be improved and will be responding to the coroner in due course.”
