THE parents of a little girl born with a rare facial disfigurement have attacked the health authority they claim is discriminating against their daughter due to her disability.

Claire and Steve Snead need around half an hour a week of after-school care for their daughter Ellen but are finding it impossible to gain access to the facility enjoyed by her able-bodied friends.

Evening News readers have followed the progress of brave six-year-old Ellen since she was born with Complex Hemifacial Microsomia - a condition that has left the left side of her face "squashed".

In her short life, she has had an artificial eye fitted, a large tumour removed from her left cheek, and parts of her jaw taken away - but she still cannot breathe without her tracheotomy and has to be fed through a tube.

Work

A change in Claire and Steve's work commitments means Ellen, who grew up in Solitaire Avenue, St John's, Worcester, but now lives in Sutton St Nicholas, Hereford, will now need occasional after school care.

"We have been passed from pillar to post for months - Hereford Primary Care Trust say it's a Social Services problem, Social Services say it's a health issue and the education authority says it is trying to help," Mrs Snead, a teacher, told the Evening News.

"The problem is trying to find someone with the expertise to deal with Ellen's needs."

Claire said the issue came to a head on Friday, January 21, when Mr Snead, who is trying to build up his computer software development business, had a vital meeting in Birmingham, worth a six-month contract.

"We had been trying to get help from the health authority in vain since the Saturday before but no-one could come up with a solution to find care for Ellen," she added.

"Thanks to the compassion of my school, I was allowed to leave to take care of her, but that meant leaving a class of 32 pupils and I am angry that I was put in that position.

"The point is, Ellen should have access to the after-school care service the same as any able-bodied child and this just isn't happening. We've hit a brick wall."

Mrs Snead said she and Mr Snead were now considering taking legal advice.

A spokesperson for Hereford Primary Care Trust said: "The PCT provides funding for healthcare support for individuals to maintain their education based on assessment for specific healthcare needs and where individuals require a healthcare trained person to support them at school.

"The PCT is not in a position to fund care outside this remit and this would represent a different service rather than a continuation of the service the PCT already provides.

"The PCT makes all efforts to ensure that carers working with children in education are available and appropriately trained and competent. It does not have a responsibility to provide this care beyond school hours but would, of course, work with other agencies to help make this happen."