NHS rules mean teen with cerebral palsy can’t stay at his dads

Father can’t get the specialist equipment he needs to support his 17-year-old son who suffers from cerebral palsy.

Currently, the teenager needs around the clock care because the condition affects both his arms and legs.  Dane has reflux and easily chokes if he’s not in the right position and is also fed through a tube in his stomach.

Additionally, he needs a portable hoist so he can be safely moved around the house and into bed. Even more so now as Dane is getting too big for his dad, Justin to lift without causing them both pain.

At his mother’s house, Dane has a hospital-style adjustable bed to support him safely at an angle.

But the NHS rule states that duplicates are not funded, meaning Dane can’t stay at his dad’s house.

Dane’s dad Justin said: “It’s heart-breaking for us all.

“Dane wants to stay over at my house, just like his nine-year-old sister Torey does, which would also give his mum respite from caring for him round the clock.

“Dane has painful hip dislocations which have already resulted in extensive surgeries and more are planned.

“Dane could stay with me several times a week, but it’s too dangerous and difficult for him to use a standard bed and too painful for him to be lifted without a hoist. He’s also too big for me to move now and I have a bad back.

“Dane has very painful stiff legs which need to be massaged regularly, but without the hoist and bed we can’t do this, so it’s impossible for him to stay with me for no more than a few hours.

“It’s a terrible situation for us all and Dane gets so upset about it. Not having the equipment we need is forcing us apart.”

The charity for disabled children, Newlife, is trying to raise £3,673 necessary for a specialist bed and portable hoist.

Carrick Brown, Newlife’s Senior Manager for Care Services, said: “We see all too often that families who have separated struggle to receive equipment which means children can spend time in both parent’s homes.

“This fragments families even further – as we see here – and leaves them with no choice but to turn to charities like Newlife.

“Dane is one of the many children who desperately need specialist equipment costing £24,171, but unfortunately we can’t help every child in need.”

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