AN Uxbridge teenager is the star of a national charity’s new campaign.

Newlife is calling on the Government to address key issues facing disabled and terminally ill children and their families.

A report by the charity shows wait times for assessments can take more than three years, due to increased demand, staff shortages, insufficient budgets and a lack of official guidance.

Rhys Porter, 15, who has cerebral palsy affecting both arms and legs, was left to cope for two years without a hoist he desperately needed.

It forced him to use a bucket and commode seat in his bedroom to go to the toilet, while his parents would drag him on a towel and manually lift him into the shower once a week.

Their house wasn’t big enough to accommodate a suitably large fixed hoist.

When doctors said he would need surgery to break and reset his hips and femurs two years ahead, his family were told this couldn’t go ahead unless he had a hoist at home to move him safely.

In desperation, the family contacted Newlife, the UK’s charity provider of disability equipment, who found a £2,100 portable hoist in time for the surgery.

Adaptations by the council for a wet room in their home were finished more than a year later, in December 2023, finally allowing Rhys to shower independently.

Now, his mum, Kelly, and Rhys have spoken to Newlife about the issues they faced as part of the Newlife’s new report, Fight for Our Future.

Kelly said: “We had to rely on my husband, Adam, to move Rhys. We kept saying [to the council] we just needed a portable hoist as the house was too small for a fixed hoist, but they kept saying it wasn’t their policy to provide portable hoists.

“I tried to challenge the policy with no luck. At one point, I was so worried he would become injured, and we’d have to take him to hospital that I self-reported us to social services.

“I was left feeling exhausted. We work and do all the right things to be an integrated part of society, but we feel constantly failed.

“Everything is a massive battle and no one should have to fight just for their basic rights.

“As parents of a disabled child, we feel we face so many levels of discrimination, even from the people who are supposed to help us.”

In London, nearly a third of local authorities provided less equipment in 2022 than the year before and nearly half of local services cut their equipment budgets.

Stephen Morgan, Newlife’s Director of Charitable Services, said: “Families now face insurmountable challenges when seeking support. Overwhelming pressure is now being placed on charities to plug the gap.”

Newlife is calling for the next government to have a dedicated Minister for Disabled Children, who will ACT: Accelerate equipment budgets, Cut assessment waits and Tackle staff shortages.  

Newlife’s petition calling on party leaders to make disabled children a priority at the next election can be signed here

For more information on Fight for Our Future, visit