Declan had been entitled to 24/7 care through the NHS Continuing Healthcare scheme, which is designed to enable people with the most complex needs to live outside of hospital.
But the family say a shortage of trained care workers within their allocated budget meant support repeatedly fell through, which Alex believes placed his health at risk.
In the final weeks before Declan died, with an increased care budget signed off, Alex says a shortage of available nurses meant rotas continued to go unfilled, leaving her to care for her son at a time she wanted to cherish as a mother.
“I’m not medically trained, [but] I was doing stuff nurses should be doing,” she says.
Declan had been given months to live in May 2023, but she says they “only got to see the palliative care team the day before he died”.
Declan’s local care team – the NHS Leicester, Leicestershire and Rutland Integrated Care Board (ICB) – told the “all the organisations involved in Declan’s care were working with the family to provide the best possible care”.
“In highly complex cases, it may not always be possible to provide safe and effective care at home which meets all assessed needs, but an alternative of residential care was always on offer [to the family],” a spokesperson said.
