Charlotte Mills-Murray is an 34-year-old woman who has been living with a severe form of Ehlers-Danlos syndrome, which weakens her body’s connective tissue. She was admitted to St James’s Hospital in Leeds in June 2022 following an infection, and a new Hickman line – a tube that allows feeding and the administering of pain relief – was inserted.
By November, Charlotte was told she was well enough to be cared for at home, but five months later she remains in hospital due to delays in the hiring and training of staff able to support her. Charlotte has expressed her anger and frustration at the situation, as she only has months to live and is at risk of infection in hospital.
The BBC has found a 16% rise over the past year in the number of patients in England who are in hospital despite being well enough to leave. In January, Prime Minister Rishi Sunak called delayed discharge “the number one problem” facing the NHS. Charlotte’s family worry that with the limited options remaining for adding a new Hickman line, in addition to the ongoing pain she lives with, Charlotte may soon have to decide to move to an end-of-life pathway.
Charlotte qualifies for 24-hour home care support through the NHS Continuing Healthcare scheme, but decisions over how this would be put in place have been slow and unclear. She was initially told to hire care workers from a company whose staff members were not qualified to meet her complex needs, causing weeks of delays. Her local NHS Trust later agreed that if she hired personal assistants (PAs) it would train them in specialist pain relief techniques, but by the time Charlotte and her family found people for the role, the trust said the training could no longer be provided. It has now been agreed that Charlotte can train her own PAs, but there have been subsequent delays caused by issues obtaining the necessary pain relief equipment.
Charlotte’s mother, Denise Mills-Murray, believes time has been “wasted”. “We’ve gone round in circles, and the time-wasting is Charlotte’s life. We can’t get that back.” The BBC has found that the average number of adult patients well enough to be discharged at the end of the day has risen 16% in a year: from 11,661 over the winter months of 2021-22 to 13,494 in the same period of 2022-23.
Sally Warren, director of policy at the King’s Fund think tank, said this was “the most visible” sign of a health and care system under pressure. She highlighted difficulties in finding local care home places and arranging support for those who want to return to their own homes as causes of delays. She also noted there is “an ageing population and more people needing social care”, as well as a workforce crisis due to low pay.
In 2021, the government pledged “at least” £500m for reforms aimed at plugging staff shortages in England, but on Tuesday it announced that figure has now been halved. The Department of Health and Social Care said it was “fully committed to speeding up the safe discharge of patients who no longer need to be in hospital” and was making £1.6bn available in England over the next two years to support this, on top of £700m of extra funding in 2022 to ease NHS pressures over the winter.
Charlotte Mills-Murray is an example of how delays in discharging patients can have serious consequences. Despite being medically well enough to leave hospital five months ago, she remains there due to difficulties arranging care at home. This has caused her family much distress and wasted valuable time which could have been spent with Charlotte during her final months. The government must take action to ensure that other patients do not suffer similar delays.