IRELAND’S ONLY PAEDIATRIC pain consultant is to step down from his position due to a lack of funding “to provide the level of service needed”. 

Children and their families living with chronic pain are now facing uncertainty about the future of their care. 

Dr Kevin McCarthy said he made the “difficult” decision to step back from his role as the service is “completely unsustainable” and not meeting the needs of the children who rely on it without a full team and sufficient funding. 

McCarthy, a paediatric anesthesiologist and pain specialist, had been running the children’s chronic pain clinic at Crumlin and Temple Street Children’s Hospitals for the last four years.

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.

According to Dr McCarthy, about 75 new patients a year use the service, whilst many more children continue to avail of the service over a longer-term period.

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.

“However, since its establishment, the level of service provided has not matched international best practice or been comparable to that in other countries such as the UK,” McCarthy said.

McCarthy says the service requires a multidisciplinary team encompassing consultants, nurses, physiotherapy, psychology, occupational therapy and social work staff but this has only been achieved on an ad hoc basis in Ireland “through the goodwill of other clinical staff but never formally put in place or protected from other service demands”. 

Instead, this vital service has been significantly underfunded to the extent that for several months now, due to nursing staff retirement, I have been running the service with even fewer members, despite an ever-increasing workload.

“Children and their families now have the worst of all worlds – a service in Ireland which is under-resourced,” he said, adding that access to more comprehensive services overseas has now been restricted by the HSE. 

“Ensuring that children living with chronic pain can access the right services at the right time is critical to their lifelong health and wellbeing and must be prioritised.” 

No real answers

15-year-old Conor Gavin suffers from Ehlers Danlos Syndrome (EDS) and has been in McCarthy’s care for the last few years. 

EDS is a rare disease that attacks the connective tissue in the body causing chronic pain due to frequent dislocations. Pain relief also causes problems as many drugs cause reactions such as stomach bleeds, losing consciousness or allergic-type reactions.

Conor’s EDS has also led to him being diagnosed with kyphoscoliosis, POTS and Raynaud’s syndrome over the years. Every couple of weeks Conor goes into Crumlin Hospital to receive a pain infusion which gives him some reprieve. 

His mother, Shannon, told TheJournal.ie that she does not know how Dr McCarthy has managed to cope for this long with the stress that’s been placed on him. 

“I think it’s come to a head now because he can’t carry on. He literally cannot carry on.”

With no one to replace McCarthy, she said she’s freaking out as “there’s nothing worse than seeing your child in chronic pain”.

Shannon said she worries about the next time Conor will need a pain infusion as she wouldn’t know who to call, and going private or to a local hospital isn’t an option as “they wouldn’t know what to do with him”.

In a statement to TheJournal.ie, Children’s Health Ireland (CHI) – which encompasses Crumlin, Temple Street and Tallaght hospitals – said it is working with McCarthy and clinical leads to develop a personal care plan for each patient, “which will be communicated to each individual family attending the service”.

“CHI also require funding for support posts (multidisciplinary care teams) as this is one of our vulnerable services. CHI will be going out to recruit a replacement post in early 2020.” 

Shannon Gavin argues that CHI has known about McCarthy’s departure for a number of months but has “done nothing” about it. She said her family and countless others have been badly let down by the lack of communication on the issue. 

“Parents have been kept in the dark to date about Kevin leaving, we have only found out via word of mouth between parents, and on social media. Many parents have been emailing and calling all the top people in the hospital groups, CHI and the Minister for Health, and have been actively engaging looking for clarification on the situation since early October with little or no response. 

The responses we did get were all very vague with no real answers to our questions and there was no consistency between the information that was given to different parents regarding the same situation. We are also aware that multiple consultants made recommendations to management as far back as September which clearly were not taken into account either. 

There is also some uncertainty among parents like Shannon who have children turning sixteen soon about whether they will be moved over to adult services.

“If so can they provide the same care they are receiving now and if this is the case are there plans in place so they can immediately access this help and not just be added to the bottom of what is probably already a big waiting list,” Shannon asked.

With reporting by Órla Ryan