Five primary care trusts have failed to acknowledge the existence of disabled children in their catchment areas.

This unbelievable situation has been revealed in a damning recently-published report by the Care Quality Commission, based on data from 151 PCTs and is contrary to official estimates that one in 20 under-16s has a disability.

The five PCTs are North Staffordshire, Warrington, Bury, Derby City and Islington.

It is also in stark contrast to the statistics supplied by their neighbouring PCTs; for instance South Staffordshire PCT responded to the survey saying it has 35,572 disabled children in its catchment area.

Newlife Foundation is the UK’s leading children’s disability charity – based in Cannock, Staffordshire. It has revealed that despite North Staffordshire PCT’s denial of numbers, the charity has funded 27 equipment grants totalling £45,051 to help children in that specific area. Some of this equipment should have been funded by local statutory providers, but Newlife had to step in.

Nationally, Newlife has funded more than £7million of equipment grants for around 5,000 children, including youngsters in Warrington, Bury and Derby.

Newlife CEO Sheila Brown, OBE, said: “These organisations have reported a zero figure when asked by the CQC how many disabled children are in their area – so how can they possibly plan and deliver. This missing information could mean they don’t meet the full needs and so children and their families will continue to struggle without appropriate equipment. That’s when parents and carers turn to charities like Newlife to help plug the gap.

“Local policies often get in the way; it’s not just budget that’s an issue. We urge areas to not only establish the level of need locally but also monitor the unmet need that occurs when local policies deny a child provision. As Newlife has been saying for five years and this CQC report highlights, PCTs and other statutory bodies are playing a ‘guessing game’ in assessing and delivering provision to disabled children.”

The Care Quality Commission report, following a special review of care and support for disabled children in the UK, stated: “Without a basic awareness of what the needs of the local population are, it is hard to understand how a PCT can assure itself it is commissioning services to meet them.”

The report also found a significant disparity between the experiences of disabled children and families, which were “overwhelmingly negative”, and the services the PCTs claimed they offered.

One mum who knows all about this is Charlotte Lewis, from Newcastle Under Lyme. NHS North Staffordshire is her family’s PCT. Born at 28 weeks gestation, her son Sam, aged 11, has hydrocephalus, cerebral palsy and Global Developmental Delay and relies on his family and carers for all his needs.

Charlotte said: “If my Sam isn’t considered ‘disabled’ by our PCT, I’d like to know what their definition of disabled is. I think this is disgusting; the PCT doesn’t provide enough support for children like Sam, which is why families turn to charities such as Newlife. If the PCT commissioning body doesn’t recognise the need of disabled children in its area, there won’t be the funding to provide essential services for families.”

Newlife has provided Sam with two pieces of specialist equipment, the most recent being P-Pod seating. Charlotte said: “Statutory services wouldn’t provide this sort of seating system for Sam, so when he came home from school we had to sit him in a bean bag every night, which didn’t give him the postural support he needed. The P-Pod seating is just brilliant and is used every day – it ensures he is both comfortable and safe and I don’t know what we would do without it now.”

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