A DISABLED woman from Abergavenny who needs around-the-clock care has been told she is no longer eligible for full healthcare funding.

Emily Chicken, 21, suffers from a rare neurological disorder known as Rett Syndrome which leaves her unable to speak or walk.

Her conditions means that she needs 24/7 supervision from her family, parents Sara and Neil and older sister Laura, at their home in Weston Road.

Since leaving school in 2015, Miss Chicken has received full funding from Aneurin Bevan University Health Board (ABUHB) for her one-to-one care support and hydrotherapy at the Bert Denning Centre in Brynmawr.

“The carers can take her out if needed as Emily has times where she gets very agitated,” said Mrs Chicken. “She screams but with one-to-one they can take her out of the situation.”

But now the family are facing an uncertain future after ABUHB representatives contacted them in June regarding Miss Chicken’s continuing healthcare (CHC).

According to the health board Miss Chicken no longer has a primary health care need, a decision upheld by in a further meeting in July.

After unsuccessfully appealing the decision last month, Mrs Chicken says she will continue to fight.

“We are just very upset and very anxious for the future, I just fear that there won’t be the same level of care as Emily had in these two years if it is handed over to social services," she said.

Miss Chicken has been in and out of hospital in recent years, suffering from seizures, a collapsed lung and, earlier this year, pneumonia.

The ongoing process regarding the future of Miss Chicken’s care has also had an emotional toll on Mrs Chicken, who has been in remission for two years having been diagnosed with lymphoma.

“It’s been a very tough two years and this isn’t making things any easier,” she said. “I feel like there’s been no compassion for us as carers.”

Further assessments of Miss Chicken’s conditions are planned, with the family set to meet the Complaints Advocacy Service at Aneurin Bevan Community Health Council later this month.

As Mrs Chicken understands, social services are arranging respite care at Augusta House in Ebbw Vale.

“We are relying on out-of-county care when there really should be similar services for disabled people here in Monmouthshire,” she added.

A spokeswoman for ABUHB said: “We can confirm that patients are reviewed regularly in line with criteria set out in the National Framework for Implementation in Wales.

CHC funding is not indefinite. It is important that regular reviews take place so that if a person’s needs have changed which deems them eligible again for CHC funding, this can then be put in place.”

Becky Jenner of support organisation Rett UK said: "People [with Rett syndrome] need to be constantly assessing her both physically and emotionally to pick up on, and interpret, the subtle changes in her disposition, her breathing and physical well-being, to maintain the optimum health and well- being.

"Sadly, the majority of health care professionals do not have sufficient knowledge of the disorder (it’s rarity means they are unlikely to have come across anyone else in their career with Rett syndrome) to fully appreciate the complexity and intensity of care that is needed.

"They do not appreciate how one problem exacerbates another. For example, the autonomic dysfunction experienced affects breathing, eating, drinking, gut and bowels, circulation and levels of consciousness.

"Heightened levels of anxiety further disrupt the breathing which is the driver for some many other issues so changes in carers, routine etc. can be very detrimental to people with Rett syndrome.

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. Her family have seen her health deteriorate in the last six months particularly, and this is reflected in the amount of contact we have had with the family over their concerns including sadly, pneumonia which is the most common cause of death in Rett syndrome but also dystonia and eating/swallowing problems.

"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."