A Powys mum has said medical information was lost in a five-year battle to get support for her daughter.

Kylie Davies has said she has been in a constant battle to get support for her daughter Marnie, 7, who has complex learning needs including Autism and ADHD.

“Marnie can’t read or write, she has no recognition to any of it, she works at a pre school level," she said. "She has a concentration span of no more than five minutes, she needs sensory breaks or she will hit out – she will bite, headbutt, she can cause damage to herself.

“She doesn’t talk, we have to use Makaton so we can communicate.”

It took two years for the family to secure an appointment with a paediatrician and an educational psychologist in the hope they could get Marnie into an early intervention centre at an early age.

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But they waited a year for a report, by when the timeline for her to go into an early intervention centre had closed, Kylie says.

“I ended up having to ring the head of the department and they were there in a month," she added.

“After this all of the paperwork got sent over to the NHS so that they could officially diagnose Marnie, then we found that all of the paperwork went missing.

"At the time she was three and half. We then had to start the whole process again.”

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The family were promised the process would be fast tracked, but when Marnie started school they were denied a Statement of Special Educational Needs which would have given her the help she needed due to a need for more information.

“We are talking about a panel of people who have never met my daughter, have never known what it is like to walk in my shoes,” Kylie added.

Marnie ended up in a mainstream school without despite needing full-time care.

“One day we came in and found her in just a t-shirt and a nappy, for the whole world to see her, they didn’t maintain her dignity or respect,” said Kylie.

“I reached a point where I had to just pull her out of that school.”

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Marnie is now at Maesyrhandir School who, Kylie says, “have gone above and beyond”, but had to shoulder the burden of one-to-one support on its own before they finally received confirmation they would be supported last week - five years after the family first appealed for help.

Kylie says the lack of support has had an severe impact on her life and has led to her giving up her career, as well as impacting on her mental health.   

“It is just a constant battle, you have to be the loudest in the room, you have to threaten them," added Kylie.

“The system needs a total reform, everything needs to be looked at.”

A spokesperson for Powys County Council said: “The council does not comment on individual cases to respect the privacy of the learner. However, the council will work with the learner along with their parents, school and other agencies to plan, implement and review any additional support or provision if it is needed.”

A spokesperson for Powys Teaching Health Board said: “We take our responsibilities for patient confidentiality very seriously and it would not be appropriate for us to comment on individual care and treatment.

“The Powys Neurodevelopmental Service is here to support the assessment of children with Autism and Attention Deficit Hyperactivity Disorder who have been referred by their health visitor, GP, school or other professional.

"This helps to ensure that their needs are understood so that a plan can be put in place to address these, working together across health, education, social services and wider partners."

Information about the team and the support they provide is available from pthb.nhs.wales/feedback or by calling 01874 712582.”