A LIMERICK mother-of-two has made a desperate plea for the government to secure a pain management consultant for her children who are in constant agony because of serious medical health conditions.
Ireland’s only dedicated paediatric pain consultant Dr Kevin McCarthy stepped down from the role last December, after the service became overwhelmed due to a lack of resources and support.
Bruff woman Mairead O’Leary Woulfe, (40), and her two daughters Leah (10) and Ellie (7), are diagnosed with Ehlers Danlos Syndrome (EDS), a debilitating tissue disease which leaves sufferers in agony due to daily dislocations.
The girls and their mother have been hospitalised 17 times in the past ten months due to dislocations as well as secondary health issues associated with EDS.
While she can at least manage her pain through medication, she explained her children have been “left in limbo” for the past five months, because there is no one qualified enough to prescribe changes in their pain medication to meet their complex needs.
Ms O’Leary Woulfe suffered disoclations to her jaw and her ribs last Sunday.
Speaking from her bed at University Hospital Limerick, she told the Limerick Post: “I’ve very good pain management set up because I can access the adult services, but there is no children service at all since the only doctor left last December.”
“The girls are on the same pain relief they were at Christmas. It’s not working for them, and they need to be seen.”
“They have other complex medical needs and not having their pain under control, is putting more pressure on them.”
“Leah goes unconscious. Ellie has issues as well, and basically we are not getting any constructive answer. We have been told, ‘maybe June’, but there is no guarantee and there is nothing in place.”
The children have also lost access to a hydrotherapy pool funded through the charity iCAN (Irish Children’s Arthritis Network) because of the Covid-19 lockdown.
They have also lost crucial physiotherapy due to a lack of resources in the health system.
“Leah hasn’t had a physiotherapy appointment in over a year and half. There is a long waiting list and no appointments. Ellie only got one because it was a crisis appointment as her walk was being affected and she needed to see someone urgently. She was meant to be seen after Christmas and we still haven’t got a review appointment for her.”
“The services are now non-existent.”
The nearest paediatric pain management service is based in London, but the costs associated are not covered under the HSE’s Treatment Abroad Scheme, she explained.
Children are being referred to rheumatology services but Ms O’Leary Woulfe explained: “We have seen a rheumatologist and they have told us it is not their area of expertese at all.”
“For any child being referred to rheumatology, now, there is a two to three year waiting list, so there is absolutely no service in place.”
Independent Limerick TD Richard O’Donoghue raised the family’s plight in the Dail last Friday, and asked the Health Minister Simon Harris to help expedite recruitment of a paediatric pain specialist.
A consultant was promised “from Belfast, which has not materialised”, Deputy O’Donoghue said.
“This mother is distraught and she has been up all night with her children crying. This is not satisfactory, and I need your help on this one,” he informed the minister.
Responding to Deputy O’Donoghue, Mr Harris said he would ask the HSE to respond to him directly, and he would also find out where they are at in terms of recruitment of a new full-time consultant.
