THE decision to change a disabled woman’s care package has been criticised by the head of a leading national charity.

The family of 21-year-old Emily Chicken have, as we previously reported, been told that she will no longer be eligible for full healthcare funding despite needing around-the-clock attention.

Miss Chicken, who lives in Abergavenny, has a rare neurological disorder called Rett syndrome which leaves her unable to speak or walk.

But In June, her parents, Sara and Neil, were told that Aneurin Bevan University Health Board (ABUHB) had reviewed Emily’s case after providing her with two years of fully-funded continuing healthcare (CHC).

According to the health board, Miss Chicken no longer has a primary health care needs, with plans now in place for social services to arrange her care going forward.

Becky Jenner, the chief executive of the Rett syndrome support charity, Rett UK, said the decision had left her as “perplexed” as Miss Chicken’s family.

“Rett syndrome is a very complex rare disorder which is only really understood by a handful of specialist health professionals who have made it their lives work to try to help those affected,” said Mrs Jenner, whose daughter Rosie also has the condition.

“These people need to be constantly assessing her both physically and emotionally to pick up on, and interpret, the subtle changes in her disposition,” she said.

“What is particularly distressing for Emily and her family is that she has already been in receipt of CHC funding having correctly been assessed previously as having a primary health need.”

Earlier this year, Miss Chicken’s health deteriorated following problems with her breathing and swallowing and she was left in intensive care.

She was diagnosed with with pneumonia, the most common cause of death for Rett syndrome sufferers.

Her parents have said they are fearful of the future, following the ABUHB decision. but Mrs Jenner is keen to lend her support.

She added: “For them to then be told that Emily no longer qualifies is understandably perplexing.”

“The amount of stress this has placed the family under is significant.

“We will do all we can to support the family to ensure that Emily has the support needed to maintain her health and well-being and live a full a life as possible. CHC funding is key to that goal.”

A spokeswoman for ABUHB said: “It would be inappropriate for us to comment on the details of individual cases, however we are working with Emily’s family to ensure that all of Emily’s needs are met and that Mr and Mrs Chicken are supported as much as possible.”