THE MOTHER OF a two-year-old with scoliosis has said that she fears her child is regressing due to a lack of support being available from the HSE’s Children’s Disability Network Team in Carlow.
Yvonne Proctor, who is mother to five children, said that her daughter Shannon, who was diagnosed with scoliosis last June after a “fight with the system”, has not seen an occupational therapist since January as the OT she was meant to work with left the team, and has not been replaced. She hasn’t been seen by a physiotherapist since March.
“The system is completely broken. There is no one for us to lift the phone to now, because the staff are not there. My daughter is two and she still hasn’t been assessed by a speech and language therapist either, despite having real developmental delays,” Yvonne said.
Shannon was born prematurely at 37 weeks. She was diagnosed with scoliosis after her parents brought her to be assessed as they noticed that she was holding her neck off to one side.
Scoliosis is the abnormal curvature of the spine, it is usually diagnosed in childhood, or early adolescence.
“We waited for six months for her to see a paediatrician in the first place. At one point there was talk of her being discharged from the pediatrician’s clinic, and we had to fight that, because we knew how long it would take to get that level of care again.
“Eventually we got into Wexford General Hospital, and Shannon was diagnosed by a children’s doctor who gave us our options – either we could leave her and see how bad the curve in her spine gets, or we could start doing bodycasting,” Yvonne explained.
Shannon had to be put under general anaesthetic for her first body cast to be put on for 3-4 months.
Wearing the casts causes Shannon considerable discomfort, as she gets skin sores underneath, and it’s quite heavy.
Her parents are currently taking a break from the body cast over the summer months so she can move more freely and be more comfortable, but Yvonne said without staff in place to talk to, it is hard to know each day what the right thing to do is.
“The other night she was up every 20 minutes. She is crying and holding her back, and pulling and pointing at her legs, but she can’t tell us what the problem is.
She said that when Shannon was referred to the disabilities team in Carlow, the OT the family worked with was extremely helpful, and secured a specialised feeding chair and buggy for the two-year-old, as well as securing her place in a special needs school.
Since the OT left the team, Yvonne has felt that the health service has stopped offering the support Shannon needs, and claims that no promises are being made as to when the role will be filled.
“There is still a physio on the team who is meant to see her regularly, but he told us he is under so much pressure that he doesn’t know when he can see her. It’s so worrying for us because she has weakness in her knees and she is falling a lot. He hasn’t seen her in three months.
“No parent should have to beg to get their child the help they need. The curve in her spine has gotten worse,” Yvonne said.
The Carlow woman is afraid that her daughter’s condition is already regressing due to a lack of support and help.
“Caring for her is our life now. My husband had to stop his business, she needs 24-hour care, and we have other children with additional needs as well.
“I have days when I feel like I cannot cope, but I do because I have to. I am on to councillors and TDs every day. I’m afraid about what the future holds for my daughter.
“Is she going to need a wheelchair day to day? Will she be able to live an independent life, what is going to happen to her?,” Yvonne said.
Despite dealing with pain, mobility issues and having to wear heavy boots to help her walk, Shannon is a child who loves to explore and be outdoors.
“She really is brave, even dealing with everything she has to, she always has cuddles and smiles for us, we just want to see her get the care she needs,” Yvonne said.
The Proctor family feels that, despite the huge financial burden, they will now have to go private to get Shannon therapy services.
“No one is going to reimburse for that,” Yvonne said.
The HSE told The Journal that it does not comment on individual cases.
A spokesperson said that the number of Whole Time Equivalent ( WTEs) roles allocated to the Carlow Children’s Disability Network is 23.58, but it currently only has 12.30 WTE’s.
When the HSE says the team needs 23.58 WTEs to be adequately staffed, and that it currently has 12.3 WTEs that does not mean 24 workers are needed, or that 12 people are employed on the team.
WTEs are calculated based on the number of hours worked. They can be made up of multiple workers on part-time contracts, or less staff who are working overtime.
The spokesperson said that the HSE is experiencing “significant recruitment challenges” within Disability services in the Carlow area.
“South East Community Healthcare continues to prioritise local competitions for all disciplines and continues to express posts out to current national panels where relevant.
“The HSE acknowledges that waiting times for the [Carlow] service at this time are particularly stressful for children and their families, and will continue to explore a range of options to support recruitment and retention.
“We regret any situations in which there may be a delay in accessing supports,” the spokesperson added.
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