CHILDREN AND THEIR families living with chronic pain have said they feel “totally abandoned” after learning that the country’s only paediatric pain management consultant will not be returning to his position following the recent allocation of funding to Ireland’s only pain clinic for children.
Families are now concerned for their children’s welfare as they wait for new measures and care plans to be put in place without a clear timeline for when it will happen.
Dr Kevin McCarthy, a paediatric anesthesiologist and pain specialist who ran the children’s chronic pain clinic at Crumlin and Temple Street Children’s Hospitals for the last four years, resigned in December due to the service’s lack of funding.
Children’s Health Ireland (CHI) recently announced it had secured the funding to formally develop the complex pain management service after McCarthy called for a multidisciplinary team to be put in place.
The service had previously been provided on an “ad hoc basis” in Ireland through the “goodwill of other clinical staff” but never formally put in place, according to McCarthy.
Prior to the clinic’s establishment, children suffering from chronic pain received care overseas funded by the HSE, mainly in the UK, after a previous pain clinic at Temple Street was placed on hiatus.
An advocacy group for the families of children living with chronic pain told TheJournal.ie they were “dismayed” when they found out yesterday that McCarthy would not be returning to the role.
“These children have now been without a pain consultant since the middle of December as he was Ireland’s only pediatric pain management consultant,” group spokesperson Shannon Gavin said, adding that the children are currently are without care plans.
The children who use the service are living with chronic pain resulting from a variety of conditions including surgery, trauma, cancer, inflammatory conditions or scoliosis amongst other factors.
Their parents say the only quality of life they have is through carefully regulated pain medication programs that need to be overseen by an expert in this field.
Families have been told an interim service will be in place while the five new positions are filled.
In a letter sent to parents, seen by TheJournal.ie, CHI said it is currently at “the advanced stages” of securing the service of consultants specialising in complex pain management who will assist CHI colleagues in continuing the pain clinic until the full-time posts commence.
“We will respond with the specific details of regarding this interim arrange to you next week by letter as there are final meetings planned over the next week with CHI and these consultants,” the letter said.
Parents are concerned that the recruitment of an interim consultant could take months and mean their children could be “outsourced to other hospitals”.
Shannon Gavin, whose son Conor suffers from Ehlers Danlos Syndrome and was in McCarthy’s care for the last few years, said it has been a struggle since December.
However, her family are in a more “enviable” position than others. Conor had surgery last October and so there is an anaesthetist who was very well briefed and understands his condition, “but that’s not the case for the other kids”.
“It’s not great news, it’s not what we were hoping for at all.”
“It is a fact that the children’s hospitals have looked for this funding for this vital service over the last few years and been denied and that it is only now after parents had to go public with their plight that funding has been found,” she said.
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