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Mother left in ‘limbo' over autism diagnosis for her daughter

 Katie McGarry with her mother Briege and baby sister Zara in their west Belfast home. Picture: Hugh Russell

A MOTHER who paid £400 for a private one-hour autism consultation for her daughter due to NHS waiting lists has said she has been left in “complete limbo”.

West Belfast woman Briege McGarry (37) was “blown away” after a school nurse contacted her to red-flag her little girl, Katie, for suspected autism last January when she was just five years old.

The mother-of-four learned she faced a two-and-half-year wait for an assessment by a team in the Belfast trust.

As Ms McGarry struggled to cope with Katie’s behaviour, she contacted a private clinic and was given an appointment with a clinical psychologist last September.

“I knew the waiting lists were horrendous but never in a million years did I think they were that long,” she said.

“I got a private consultation to see if she required an autism assessment.

“It lasted an hour and I was told she would definitely walk it.

“There was also a question mark over ADHD and OCD.

“But that’s as far as we got. The clinic said they couldn’t carry out further assessments as they would be invalid as staff would have to use PPE.

“We were also told they would cost a further £1,000.

“Only for my family helping me out, I could not have afforded the £400.”

The private clinic’s report was sent to the Belfast trust six months ago but Ms McGarry said no-one contacted her.

“It’s terrible. Only for my GP, who has been so supportive, there’s no-one else to turn to,” she said.

“Obviously I can’t do anything physically for Katie, but even if someone could just point me in the right direction and reassure me.

“You question if you’re handling things right, you’re in complete limbo.

“It’s just really sad that I have to wait until someone puts a label on my child before I can get help.

“As the days and weeks go on, Katie’s behaviour is escalating.

“We took her to the shop last week and the place came to a standstill – she was squealing that she just wanted to leave.

“She is happy at home until she has to leave, it’s the same with school.”

Ms McGarry, who has two older sons aged 11 and 14, gave birth to a baby girl 10 weeks ago. She said Katie “dotes” on her.

“You get the baby down into a night feed but then last night I was still chasing Katie about into bed until 3.40am this morning,” she said.

“There’s no sleeping at all in her. Katie will run for days and then she’ll crash on me.

“She’ll put up the biggest fight against sleep. I read to her, put on music.

“Bless her, all the age of her, she’ll say to me ‘sleep’s not happening, it’s just not happening”.

The Irish News contacted the Belfast trust about its lack of contact with Ms McGarry. She subsequently received a phone call from its autism service, which she said was “like winning the lottery”.

In a statement, a trust spokesman issued an apology to the family.

“Whilst we don’t comment on individual cases, Belfast trust would like to take this opportunity to apologise for any distress a delay may have caused Ms McGarry and her daughter.

“We are aware of the daily struggles faced by families in managing challenging social, emotional, behavioural and educational concerns and we acknowledge that the waiting times for this service are longer than we would desire.

“Belfast trust will continue to work to provide a quality service to families and children where autism is a concern.”

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