Visit Newlife the Charity for Disabled Children on stand V42 at Kidz to Adultz South.

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.

CEO of Newlife the Charity for Disabled Children, 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plan, budget and provide the services disabled children need if they’re using figures that are more than five years out of date and forget 300,000 disabled children?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.

Sheila continues: “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.”

Calla-Rose’s story

Calla-Rose is three years old and has a rare genetic disorder called Dravet Syndrome.  She has up to twenty epileptic seizures every day which has caused permanent damage to her brain.  She needs oxygen to breathe and can’t swallow so is fed through a tube into her tummy.   Mucus regularly builds up in her throat and chest that she’s unable to clear so is regularly admitted to hospital with severe chest infections.  Her life is so fragile; she has a defibrillator at home so her parents can restart her heart if she goes into cardiac arrest.

Calla-Rose needs a special bed that tilts to reduce how often she gets chest infections, and keeps her in the right position so she’s able to breathe and feed safely at night.  The special bed needs to lift up so if her heart stops beating, her mum or dad can get to her with the defibrillator quickly.  And because there’s no knowing when she’ll have a seizure, the special bed also needs to have padding on the insides so she can’t hurt herself.

Calla-Rose has been waiting more than a year for local health and social care to provide the special bed she desperately needs.  While she waits she’s been forced to sleep on the sofa with her mum.

Calla-Rose is one of 1692 children refused a special bed by local health and care services that Newlife hasn’t forgotten.

Newlife will shortly launch an All Party Parliamentary Group (APPG) to look at the issues effecting equipment provision for disabled children in the UK.

In a bid to further improve the situation for the families of disabled children, Newlife has sought Barrister advice to establish the legal rights of children and families to help healthcare professionals challenge decisions made at local level, in relation to statutory obligations for providing equipment.   Newlife will publish its full Barrister’s report later this year.

Media enquiries: Maggie Morrissey – Charity PR, Content and Media Campaigns Manager on 07968 997141/01543 431462 or email mmorrissey@newlifecharity.co.uk

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