It is 'right and fair' to include families in CHI inquiry, says advocacy group 

last year an audit of surgeries under CHI found a high number of surgeries done at Temple St and Cappagh compared to CHI at Crumlin hospital. File picture

An advocacy group representing thousands of families whose children had hip surgery at Children’s Health Ireland (CHI) has welcomed their inclusion in a public inquiry.

However the Hip Dysplasia Advocacy Group also expressed concerns at the proposed format of the inquiry in an echo of questions raised by other patient groups.

On Monday a commission of inquiry was proposed after a scoping exercise by barrister Remy Farrell SC.

He recommended one module should look at how children were deemed to require specialist hip surgery at CHI at Temple St and the Cappagh Orthopaedic Hospital. 

Hip dysplasia arises when a baby’s hip joint does not form properly. It can be treated by surgery. 

However last year an audit of these surgeries under CHI found a high number of surgeries done at Temple St and Cappagh compared to CHI at Crumlin hospital.

Up to March this year some 1,505 children had been seen in specially set-up review clinics as part of the follow-up to those shock findings.

“Some parents have recounted that they were told that surgery was required immediately," Mr Farrell's report said. 

It continued: "(and told) that the consequences of not getting it done might be serious for their child, ie they might be facing hip replacements as young adults." 

Another mother told Mr Farrell she was told her daughter might not be able to carry a pregnancy to term in the future unless she had surgery.

In response the advocacy group said it is “right and fair” their children are included in the inquiry.

“Those decisions were often made in circumstances where surgery was presented as necessary, urgent or in the child's best interest,” the group said.

These parents are unsure now if information given to them was "complete, accurate, and consistent with accepted practice". 

However it described the proposed time frame of 2019 - 2025 as being set “on an inherently arbitrary basis”. 

The group issued a statement issued through solicitor Johan Verbruggen, Fieldfisher Ireland.

“The issues around candidacy for hip surgery that have been identified to date did not suddenly begin on January 1, 2019,” the group said.

Parents already knew about care and treatment concerns before then, it said.

Call for public hearings

It said they agree with parents in the Scoliosis Advocacy Group and Spina Bifida Hydrocephalus Group the hearings should be in public.

“While the privacy and dignity of children must be protected at all times, public confidence will not be secured by reaching conclusions behind closed doors,” the parents said.

It urged: “Families have spent years being asked to trust the system.

“It is not unreasonable that they now ask to see the truth examined in the cold light of day, rather than behind closed doors.” 

Úna Keightley, co-lead of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group said the scope suggested is “very narrow”.

She raised concerns the clinical care is being left out in favour of a tighter focus on waiting list numbers.

A commission format allows examination to be “behind closed doors” she told RTÉ.

Mr Farrell also recommended investigation of who in CHI management knew about plans to implant non-medical springs in children during surgery under one surgeon. 

Ms Keightley said oversight bodies did not “blow the whistle” on problems and indicated these wider issues should be included also.

Mr Farrell also advised the inquiry should also look at care of children known as 'Crumlin orphans'. 

This a group coming to "several dozen" at one time who were left behind in that hospital instead of having their care transferred to CHI at Temple St in 2008 with other children.