Mother’s frustration at ‘sticking plaster’ approach to scoliosis
3 DAUGHTERS SUFFERING SPINAL CONDITION LEFT ON WAITING LISTS
THE MOTHER of a teenage girl who went through hell before being treated by the HSE for her scoliosis has said she fears for her two youngest daughters who have been disagnosed with the condition as no long term solutions have been put forward by the government to resolve the lack of operating theatre time in Irish hospitals.
Scoliosis is a condition causing a sideto-side curvature of the spine which can occur due to congenital, developmental or degenerative problems, but most cases of scoliosis do not have a known cause. On Monday the Ombudsman for Children Niall Muldoon said ongoing delays and the failure by Government to deal with access to scoliosis treatment is impacting on children’s rights.
The report found that children have been experiencing significant waiting times for scoliosis surgery, up to 18 months. The report also says that crisis management has not resolved the issue and there have been significant delays in publishing the promised Health Service Executive action plan on scoliosis. The HSE says that a Paediatric Action Plan for Scoliosis Treatment has been submitted so no child with scoliosis should have to wait over four months from when the need for surgery is clinically determined.
Lisa Franklin’s daughter Shauna shot to national prominence in 2014 and 2015 after her case was highlighted in the Dáil. Lisa successfully campaigned for her daughter to get the life changing operation, having been told it would be take an inordinate amount of time for the procedure to happen. She fears her daughters Katie and Caoimhe, will not have the surgery they require and will suffer long term back problems as a result. Lisa said: ‘It’s worse now than it was when Shauna went to get her surgery. Nine months ago Caoimhe was put on a list for surgery as a precautionary measure. She was fitted with a back brace, but they didn’t know if it was going to work.’
The new theatre to treat scoliosis at Our Lady’s Children’s Hospital in Crumlin will open in April, Minister for Health Simon Harris has said. He said 194 spinal procedures would be carried out, significantly more than last year. Lisa remains unconvinced, warning that this is a ‘sticking plaster’ approach.
‘I got a phone call in late February to say Caoimhe was being transferred to Cappagh Hospital for her operation.’
As Dr Patrick Kiely performed the operation on Shauna, the Franklin family want Caoimhe to also be operated on at Crumlin. ‘ The girl who rang me said she didn’t know who would be performing the surgery.’
At a recent appointment Lisa learned that Caoimhe’s curvature had increased.
‘We were told we would definitely need the operation and Dr Kiely said he would perform it. We were shellshocked to learn that the operation was required because we thought the curve would stay stable for longer.’
Lisa said the family trust Dr Kiely and his team and want them to perform the surgery. ‘I’ve so much anger and frustration. Shauna is a new person now but her operation wouldn’t have taken as long if she was operated on sooner. She had issues with fluid build up in her lungs after the operation and emotionally going through all that waiting will never leave us as a family. I am a lot angrier this time.’
She said a new theatre was opened at Crumlin but another theatre was closed, adding that plans to have a four month turnover for operations by the end of the year sound great, but will not solve the problem.
‘ This is only possible because they have outsourced children to other hospitals. The lists could well be twice as long as what they are now once this temporary measure is over. It’s a sticking plaster approach. The truth is they need more theatre time. There is no spinal mentoring team in the 26 counties. One is brought from the North for surgeries as there is a risk of paralysis.’
Her daughter Katie was diagnosed with scoliosis two years ago.
‘Hers is very mild at present, but it’s slowly increasing. We are monitoring her. We thought Caoihme was all clear but almost overnight a curve developed when she hit a growth spurt. Our eldest daughter Chloe doesn’t have it.’
She called for the Government to look at the bigger picture and invest in treatment.
‘When I campaigned for Shauna they came back at me and said there were sicker children on the list. They used it as a weapon against me and I still feel guilty. But children shouldn’t be allowed to get into that condition and children shouldn’t be made to feel guilty. At the time we genuinely thought we were making a difference for everybody because of the response we got. We thought we were changing things for the better but we didn’t change anything. It’s worse now.’