Devalued and ignored How a full-time carer died along with his son

Peter Lodge devoted his life to his son, David. He cherished every moment with him, even when David's condition left them in effect housebound.

- Josh Halliday

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 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 40s, 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 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.