Mum says daughter being treated like 'an object'

The mother of a Southport woman who has been in hospital for months because of issues over her community care package funding, fears her daughter may never get out.

Natasha, 27, has a rare progressive neurological disease and needs one-to-one complex care. She is on a waiting list, but has been in hospital for 14 months as the NHS establishes which part of it pays for her care.

Mum Elaine says she is devastated. "It's inhumane. I feel like she's not being treated as a person. She's just an object [to them]."

NHS Cheshire and Merseyside apologised and said their priority was "securing the right care and support for Natasha as quickly as possible".

Natasha was born with a rare degenerative disorder called Leigh's Disease, which affects the brain and spinal cord.

She also has GAMT deficiency, which affects brain development and causes epileptic seizures. After those seizures became life threatening 14 months ago she was taken to the specialist Walton Centre, which managed to get them under control.

The family have nothing but praise for the hospital and staff, who they described as "amazing", but Natasha is now unable to leave.

Mum Elaine said for the past 11 months Natasha had been medically fit to go but she needed a complex care package and it had taken months to find one.

A few weeks ago, the family's social worker found a specialist placement in Bolton and everything was put in place to transfer Natasha in early June, but last minute funding hitches meant everything had to be paused.

A second attempt was planned for Monday - but, just days before, Elaine was told it was being paused again.

"I'm absolutely devastated," Elaine said. "This is the second time it's happened to her. All her stuff was packed in her room ready and she knew that she was going, and it stopped.

"The most frustrating thing is that everything is in place for her to go. She's got a house, she's got staff.

"All of her stuff has been put in there, all of her medical equipment, all of her supplies have been redirected.

"The only thing that's missing is Natasha and there's no reason for her not to go."

Natasha's care placements have always been jointly funded between Sefton Council and NHS Cheshire and Merseyside.

The council has agreed to fund the next placement, but the NHS has not decided which part should pay for it.

The problem appears to lie in the fact that, although Natasha is a Southport resident, and therefore in Merseyside, the care placement is in Bolton, which comes under NHS Greater Manchester.

"I'm actually devastated and I cannot believe that can happen to somebody. I feel like it's inhumane," Elaine said.

Elaine's MP, Partick Hurley, has been working to help the family for several weeks. He is now calling for all of the organisations to come together and get Natasha out.

"I'm calling on everybody to put all of these issues aside, sit round the table, get this sorted," he said. "This is Natasha's life."

Elaine said her daughter had started pulling out her own hair because she was unable to understand why she could not leave.

She added: "Things have changed for her. She used to be swimming twice a week…we'd be going for walks, we'd be going for drives in the car.

"She's missing out and she's got a life limiting condition. So we could be living out her last days in the hospital."

She added she was also worried that the placement, which she said had taken a long time to find, could not be held any longer.

Elaine said she would not rest until Natasha was in her new home.

She added: "She's unique and she's amazing and she's wonderful and I think she should be treated like gold.

"I should not have to fight for what she's legally entitled to because she deserves that.

"I'm her voice, I'm her protector, and I'm here to advocate for her and I will do that. And I will not stop until this is in place".

In a statement, 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."

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