OPINION: 'After Two Years Of Waiting, I've Lost Faith In The HSE'

I first raised my concerns about my daughter's delayed speech with my Public Health Nurse almost two years ago. At the time I was told to 'wait it out'. That my daughter might just be a 'late talker'.

After a couple of months, I knew I was right and took it upon myself to get my daughter on a speech therapy waiting list within my area.

After a year she was called.

However, I don't believe she naturally made her way up the list - I had to hound them.

We got her assessed and were given a semi diagnosis but we haven't heard anything since. In the past five months, I have called six times to inquire about the Hanen Program, to query about where she is on the list for therapy.

On one occasion, I had a general question aimed at a therapist for at-home therapy advice but all my calls fell on deaf ears. I have not received one phone call back. 

Over the past five months, we have been doing at-home speech therapy with an aim to start private therapy in the coming months. My daughter has gone from 36 words to 200+ with the help of family, friends and her preschool. It has not been easy. In fact, I've cried more times than you can count but, with no thanks to the HSE, my daughter has finally found her voice.

Today my daughter starts private occupational therapy because it's an area I cannot help her with. Early intervention is key to her overall development and that of others. At a tender age of three we knew, as parents, that we have a significant opportunity to enhance her development but at a cost. A cost many parents simply cannot afford. 

Parents are forced to wait two years or more in some cases just to get an assessment. This then delays early diagnosis and much-needed treatment all at the hands of the HSE and its deplorable 'system', and nothing is being done about it. 

Sinn Fein TD Louise O'Reilly recently raised these concerns but chances are they will fall on deaf ears. 

In a recent speech, she said: "Children suffer most from these waits and the fallout from a lack of access to the services they are entitled to means that they can sometimes find it difficult to participate in school fully, they may not be able to participate in sport and other activities as other children do, and they can struggle to maintain friendships, amongst other problems."

"The reality is that the window of opportunity when it comes to SLT and indeed OT for children is short and significant delays can negatively impact their development and cause additional problems for them into the future and into adulthood."

"I’ve spoken to parents who are close to tears because they are forced to look on while their children cannot reach their potential because of these shameful delays."

"These waiting lists are not only destroying children’s present, but they are possibly destroying their future too."

Areas affected by waiting lists vary drastically nationwide, however, the worst areas for speech and language assessments include Mayo, North Dublin, Galway and Donegal.

At the end of October, 36,531 people were waiting for speech and language therapy, a majority of them children. While another 6,531 had been waiting for over a year for their first assessment for occupational therapy. 

We chatted with a mum of six based in Donegal who wishes to remain anonymous.

She told us her son is waiting over two years for therapy having lost his speech due to a seizure almost three years ago. She has been informed four therapists are on maternity leave which has lead to her son's delay in receiving therapy.

She told us: "My son was seen in January 2017 and was not seen again until March 2018 and I'm still waiting on his next appointment. He has epilepsy and took a bad seizure in 2016 and lost all the speech he had. I'm doing work with him at home. I'm afraid if I don't do some type of work with him he will fall further behind as he's starting primary school in September."

"I phoned them last week and was told there are four speech therapists on maternity leave and there's a long waiting list. It's just not fair on the children."

Another mum located in Dublin, who also wishes to remain anonymous, discovered her son has recently been knocked off the waiting list due to an admin error. She fears if she goes public it may cause more problems. 

The mum of three said: "I've just spent the past two weeks calling everyone I could because my son's files have been lost, he's on waiting lists over two years and we've been told he's to go on another waiting list. 

"Thank God I found a letter of confirmation yesterday to say they received his files and that he was put on the waiting list. I'm gonna have a bloody nervous breakdown with all this. It's so bloody exhausting."

Megan Evans has been waiting almost two years for an assessment to find out her son has been taken off the list because she failed to show up to an appointment she never knew about. 

Ms Evans said: "My son has been on the list coming up two years now and I got a letter before Christmas that they’ve taken him off the list. I was devastated. They put him back on but he’s been pushed right back to the bottom!"

Luckily her son was eligible for AIMS through his preschool and is receiving vital support with a speech therapist for one hour each week. She told us "people still don’t understand him but we’re getting there thankfully!" 

We also spoke with other parents who are at their wits ends fighting with the HSE for services for their children and the problems go much deeper than speech and therapy or occupational therapy waiting lists.

Dublin mum Lindsey O'Byrne is waiting for a rheumatology appointment for her daughter and has been told the waiting list is over three years, while private is 9 months. 

She said her five-year-old has "been referred for a second time by her cardiologist so if we don't get an appointment soon we are going to have to go private but even at that, we are going to be waiting months while our child suffers and is in pain and can't keep up with other kids. It makes me so angry."

Not one parent I have spoken to has had a positive experience with the HSE in regards to waiting times for services of any kind. There needs to be greater support for parents and their children put in place. It's unacceptable in this day and age. 

Following the shocking figures, it's clear the system needs a whole revamp. What's in place now is simply not working. It needs an injection of funds, more therapists and to rebuild the trust of parents like myself who are at their wit's end trying to make ends meet to find the funds to get their children the help they need now.

Not everyone is in the position to pay the fees, and they can feel like they are failing their children when in reality it's the people in power of the 'system' (who have just received their second pay hike in less than two years).