Family from Yate 'heartbroken' as disabled son struggles to access sensory room
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A family from Yate have said they are heartbroken and exhausted after failing to get funding from the NHS for what they say is essential equipment for their disabled son.
Thomas Ellis, 32, was born with a range of complex needs and requires round the clock care. His family say he has not been able to access his own sensory room for the past three years due to not having the correct hoist.
Lauren Ellis, Thomas's sister, said: "This sensory room is in his own house and he cannot access it.
"When he was younger he would crawl around. But now we can't lift him.
"The hoist we do have is not that productive. He has not been able to use the room for three years."
Thomas was born with a rare condition which left him with unbalanced chromosomes. It means he has a range of complex needs and must be constantly supervised.
His family have access to financial support to help Thomas through their local health board. But they say - despite asking multiple times - they have not been able to get a suitable winch.
The family have spent their own savings on a second-hand hoist but they say this is still a compromise for what Thomas really needs.
Lauren added: "It is massively frustrating. It's been heartbreaking to see my mum and dad really struggle. They've been fighting for this for 32 years. It's hard to see them give up on hope. And that's to Thomas's detriment."
In a statement response, Bristol, North Somerset and South Gloucestershire Integrated Care Board said: “People who meet the criteria for Continuing Healthcare funding receive regular reviews to make sure their health and social care needs continue to be met.
"If an individual has a need for specialist equipment this is referred to our community services, which assesses and provides equipment to meet an individual’s needs.
"On the rare occasions when the resulting offer differs from a family or carer’s request, we provide further information and guidance to help support them.”