Disability Services Must Change, Say North Yorkshire Parents

A North Yorkshire couple, whose daughter has cerebral palsy, say services for disabled children are “at breaking point”.

Andrew and Kathryn Newton, from Thirsk, say there needs to be a massive shake-up of disabled services because the current system does not work.

They say that currently the system relies entirely on parents having to find out what help is available.

The couple want to see one point of contact for parents to access help and advice.

Children’s Services at North Yorkshire County Council said they did not comment on individual cases.

The family have now raised their concerns with their local MP and hope that their points can be raised with ministers.

Sole carer

Andrew and Kathryn’s daughter, Aniela, is four and was born with severe cerebral palsy and requires full-time care. Kathryn acts as Aniela’s sole carer whilst Andrew often works abroad. Andrew told BBC Radio York that it can be a tough life:

“Aniela has what is called four limb cerebral palsy, she can’t do anything for herself. She can communicate through noise but that is all.

“She will need constant care for the rest of her life. Most four-year-olds are able to do some things for themselves but she can’t, she’s a four-year-old who is effectively still a baby.”

From the moment Aniela wakes up they have to provide a constant stream of care, changing her, bathing her and preparing her drugs.

Everything can take much longer than caring for a healthy child as Andrew explained:

“For example it can take 20 minutes just to prepare Aniela’s wheelchair, my wife has just bought her first pair of jeans in four years because she just doesn’t get any time for herself.”

He says they have little quality time together as a couple apart from the three hours a week when a carer comes in to offer them some respite. Andrew admits that he doesn’t know how Kathryn copes.

Change needed

Aniela is severely disabled and needs a variety of special equipment to get through daily life but things like special beds, clothing and light can all prove expensive as can the physiotherapy that the little girl needs.

The Newton’s say it isn’t about the money but about how they can access the vast array of services that offer advice, help and support.

“There is no single point of contact for people like us,” says Andrew, “You ask social services for advice and they will refer you to the health service or vice a versa.

“It is down to parents to go cap in hand asking for help. What is needed is that one contact that you can go to so you aren’t sat at home filling in huge forms and questionnaire’s.”

He says change is desperately needed: “You should be engaged from the moment your child is diagnosed. You need that one person who tells you the basics, about what life will be like; what you are going to face and what you will need.”

Andrew believes that the right policies are in place but that there is a real problem in the delivery of them.

“I am not criticising the people who are working in the various agencies. It is more about how the system is managed and the fact that it is all so disjointed and unconnected.”

He says the system is at breaking point: “There’s no real link between the health providers and social services, parents are left having to fight for everything.”