OFFICIAL figures from research commissioned by the Department of Work and Pensions (DWP), show there are more disabled children in the UK than ever before, despite the government using five-year-old figures that have ‘forgotten’ to include 300,000 children.

The research shows there are now 1.1 million disabled children in the UK. Newlife, the UK’s leading children’s disability charity, is urging the government not to forget the 300,000 disabled children missing in its own data and recognise there are more disabled children in the UK than ever before.

The ‘actual’ latest figures show an increase of 15% in the number of disabled children last year alone – explaining why local health and social care services are drastically failing to provide the care, support and equipment they need.

In Wales specifically there has been an increase of 6,280 disabled children, bringing the current figure to 50,232. Newlife funded almost £120,000 (£118,657) for 164 children in Wales last year and currently needs to find £23,500 to help 24 children currently living without essential equipment.

CEO of Newlife, Sheila Brown, OBE said: “How can Clinical Commissioning Groups, Local Authorities and Local Education Authorities adequately plan, budget and provide the services disabled children need if they’re using figures that are more than five years out of date and forget 300,000 disabled children?

"Every disabled child deserves to be counted and have services in place that meet their needs. By correcting its own information the government has a real opportunity to improve service planning for disabled and terminally ill children and urgently improve essential services. Recognising that there are 1.1 million disabled children, 300,000 more than the 0.8 million figures they use, will enable local commissioners to plan much more effectively on the level of need and support required.

“It’s time statutory services stepped up and addressed the fact that thousands of disabled children are relying on charity’s like Newlife for essential equipment and support, yet the law is clear in protecting these children’s rights.

“Despite this, disabled children are suffering, in severe pain, with their lives in danger because of a lack of essential equipment to meet their needs.”

Newlife’s own research shows over half of families with disabled children said their child’s health was suffering as a result of delays in the assessment of their needs. With 45% adding the health and wellbeing of their disabled child is deteriorating because of poor communication between health and social care services.

Ms Brown added: “Every day we hear from families who feel abandoned and failed by the health system because of poor policies and inadequate budgets. Frontline professionals are working with dedication to help children despite critical underfunding.”

One child feeling the effect of this underfunding is five-year-old Jenson Edwards, from Buckley, who has Duchenne Muscular Dystrophy and is gradually losing the use of all his muscles.

Some days he is so weak and in so much pain that he cannot push himself in the basic wheelchair the NHS has provided him, which he has outgrown anyway – so his dad has to carry him around.

Jenson really needs a larger, lighter, all-terrain wheelchair with specialist e-motion wheels that will give him extra power when needed and will allow him to get around independently – but this costs £6,545.

Dad Craig Edwards said: “The wheelchair Jenson has had from the NHS is actually stopping him from living the best life he can. Some days are terrible – he can’t move his legs and his arms are too weak to push the wheels himself – so I carry him!

“The NHS only provides the most basic version of equipment, without considering the child’s needs and what the right piece of equipment could do for them – a child is more than a tick box on a form. With the lighter wheelchair and e-motion wheels Jensen could push himself when he can, which would keep his muscles strong for as long as possible, then use the e-motion wheels when his muscles are too weak to work.”

Craig and partner Hannah Grindley, discovered Jenson had muscular dystrophy at just three-years-old.

Craig said: "Going back two years when we first found out about Jenson, I didn’t know how the hell we were going to cope. I’m sat here now knowing how we are going to cope and it’s with the awesome help of everyone who has supported us along the way."

Friends and family formed ‘Team Jenson’ after the little boy’s diagnosis and have since undertaken various challenges to raise funds for charity and to help find a cure for the youngster.

Craig added: “Not many people have heard of Duchenne or Muscular Dystrophy itself. There are lots of different types of MD. It was totally a shock to myself and Hannah to find out there was such an awful and brutal illness so we set about fundraising.

“The heartbreaking thing for myself and Hannah is Jensen keeps asking if it will cure his poorly muscles. We just have to keep saying ‘we hope so.’”