FOR people like Sam Walker, the charity Sue Ryder Care is a real lifeline.
The 34-year-old who suffers from a complex condition called Hurler Scheie syndrome, has been a resident at the Sue Ryder Cuerden Hall care centre, near Preston, since 2006.
Hurler Scheie is a rare disorder, in which critical enzymes in the body are missing or not present enough, leading to damage to parts of the body.
The condition can affect mental capability, and symptoms can include clouding of the cornea, joint disease, deafness and heart valve problems.
Sam was initially cared for at home in Marton, by her parents and younger sister.
But when her condition started deteriorating, her family increasingly struggled with making sure she had the specialist care she needed and life was getting more difficult.
Since moving to Cuerden Hall, Sam has regained some independence and actively takes part in all the recreational activities, with a more active social life.
She still spends time with her family at home in Blackpool and they visit regularly.
Sam said Sue Ryder made a big difference to her life.
She added: “Before, when I was at home, it started to become hard. Since coming here, I have been able to relax. It’s a big help.
“I have lots of friends here. It’s good for my family too.
“I think the way Sue Ryder does campaigning is good because it raises awareness.”
Sue Ryder has launched a project calling on councils across the country to improve care for people with neurological conditions like Sam. The charity says hers is a good example of how specialist care can enhance lives.
A Freedom of Information request found only five per cent of local authorities know how many individuals they care for with such a condition. The charity says people can end up in an old people’s home, which is not the right environment.
Sue Ryder is calling on councils to ensure future services meet the needs of people with these conditions. It has produced a blueprint for reform, setting out practical recommendations.
Steve Jenkin, director of health and social care at Sue Ryder, said: “People with neurological conditions – from motor neurone disease to Parkinson’s – need specialist care which takes the complexity of the condition into account.
“Our FoI research reveals a data and strategy ‘black hole’ meaning errors are being made, which could condemn a 36-year-old with cerebral palsy to life in an old people’s home.”