Fight For Our Future

Give disabled children the future they deserve

All children deserve the right to live a life free from pain and to fulfil their full potential. Yet, too many of the 1.6 million disabled children in the UK are being routinely let down as they lack access to crucial support and specialist equipment such as wheelchairs, buggies and beds.

These children are left to suffer in pain, with their safety compromised and isolated from the world. For many, they are denied the opportunities we all take for granted, including the chance to go to school, develop skills and independence for the future or to even leave the house safely.

We are calling on the next government to implement a series of cost-effective reforms which will win the fight for disabled children’s futures.

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Fighting for those just like Rhys

Rhys Porter from Uxbridge, London, needed a suitable hoist to move around his house safely and to support him post-surgery. However, Rhys and his family were let down by the system leaving 15-year-old Rhys, who has cerebral palsy which affects both his arms and legs, to cope for two years without a hoist. Newlife stepped in to provide one.

“I was left feeling exhausted. We do all the right things but feel constantly failed. Everything is a massive battle. No one should have to fight just for their basic human rights.”

Kelly, Rhys' Mum

What we’ve found…

Only 2 in 5 families feel their disabled child has all the specialist equipment they need.

Waiting lists for assessments have grown over 60% in the last year, as seen by local authorities.

Nearly half of local services cut their equipment spend in the last year.

Read 'Fight For Our Future' in full

In the past year, we have worked closely with hundreds of families and professionals to understand their experiences with local services, particularly regarding specialist equipment. This was complemented by extensive Freedom of Information research of local services across the UK to discover how waiting times and equipment spend are responding to the increasing demands.

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Clemency’s Story

Clemency Hibell is a children’s Occupational Therapist who has worked in the NHS, social care, private special schools, and now runs her own private practice across the UK. In an interview with Newlife The Charity for Disabled Children, she voiced her concerns about the challenges facing disabled children in need for specialist equipment.

“The pressures are immense. The criteria of what you can assess for is so small, and because of service restrictions you can’t always meet those needs. In some departments, you can’t even order new equipment.

“I’ve spoken to therapists who know they are not giving the child the right piece of equipment, but it’s that or nothing. This is extremely demoralising for professionals. Many are leaving the profession because they don’t want this on their conscience.”

We call on the government to ACT now for disabled children:

Accelerate equipment provision.

Cut assessment wait times.

Tackle staff shortages.

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Roman’s Story…

Roman Pearse, aged two, has Cerebral Palsy affecting all four limbs. He can’t sit up, crawl or roll over unaided, which makes having the right postural support crucial.

Local services agreed Roman needed a specialist buggy to keep him supported and prevent long-term damage, however they estimated it would be 12 months until this could be provided.

“Children are suffering. It’s hard for any family to get the equipment they need at the right time. We are seeing children deteriorate and not being able to achieve their full potential due to the lack of equipment and wait times.”

Lauren, Roman's Mum