Ehlers-Danlos syndrome patient 'stuck in hospital with months to live'

https://www.bbc.co.uk/news/health-65187961

A woman who may only have months to live has told the BBC she is "angry and frustrated" at being in hospital five months after being cleared to go home.

Charlotte Mills-Murray, 34, said attempts to organise care at her family home had been repeatedly delayed...

...Charlotte lives with intestinal failure caused by 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 she remains in hospital following delays in the hiring and training of staff able to support her.

With limited access to a hoist which would enable her to use her wheelchair, Charlotte said she had spent 10 months "stuck in bed".

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