Natasha Roberts, a 27-year-old woman with a rare neurological disease, has been stuck in hospital for 14 months despite a home and care package being available. Her mother, Elaine Lloyd-Roberts, says she feels 'powerless' as repeated discharge plans have been cancelled due to funding disagreements.
Background of Natasha's condition and hospital admission
Natasha lives with Leigh's disease, a rare and progressive neurological condition affecting her brain and spinal cord. She is non-verbal and was admitted to hospital in May last year after suffering over 350 seizures in a matter of days due to GAMT deficiency. Doctors initially struggled to control the seizures.
Elaine, 59, from Southport, told the ECHO: 'I genuinely thought she was going to die, it was terrifying.' Natasha was first admitted to Aintree Hospital, where doctors considered placing her in an induced coma. However, she was transferred to the Walton Centre, where a coma was avoided. That marked the beginning of a prolonged hospital stay.
Discharge delays due to funding disputes
Although the family praises the staff at the Walton Centre, they say Natasha has been medically fit to leave since summer last year. The delay stems from disagreements over funding between Cheshire and Merseyside NHS (CMNHS) and the local authority.
Natasha was due to move to a specialist placement in Bolton, with a complex care package funded jointly by CMNHS and the council. On the day of her planned discharge at the beginning of last month, the move was cancelled. Elaine was waiting at the home with staff when she learned her daughter would not be leaving Aintree Hospital.
A new date was set for Monday, July 13, but just days before, Elaine was warned the transfer might not happen. On the day, the ambulance booked for Natasha was cancelled.
Impact on Natasha and her family
Elaine described the situation as an 'absolute mess.' She said: 'As a parent I feel hopeless and powerless. I have to protect my child, and she's 27 years old but she is a very vulnerable young woman.'
Natasha, who previously enjoyed walks and swimming, has been deprived of these activities. Since the repeated delays, she has begun pulling her hair out. Elaine believes this is due to the stress of cancelled plans after weeks of intense preparation.
'She just lights up the room with her smile. I know everyone says that but she really does. She leaves such an impression on people,' Elaine said. 'The nurses were crying when I told them the discharge had been cancelled again. It's an absolute mess.'
NHS response and call for accountability
A spokesperson for NHS Cheshire and Merseyside said: 'We are sorry that there has been a delay in Natasha’s discharge and understand how frustrating this is for Natasha and her family. We are working closely with partners to support the discharge process. Our shared priority and focus remains securing the right care and support for Natasha as quickly as possible.'
Elaine remains determined: 'My main objective is to get Natasha out of hospital, I will do that. After that, I am holding people to account. This should not have happened and shouldn't happen to anyone else.'
