Mairead Farrell (Galway West, Sinn Fein) | Oireachtas source

I raise the issue of children who are suffering with chronic pain and their families. In November 2019, the only HSE paediatric pain specialist left his post due to a continued lack of support and an intense and increasing workload. As a result, no pain paediatric specialists are left. There are also currently no private pain consultants in the country who see children. Therefore, children throughout the State who suffer from many different chronic pain conditions have been left with no one to help them.

This has forced some parents, out of pure desperation, to seek care for their children abroad at great personal expense in addition to the enormous stress of travelling with a child who is experiencing chronic pain. However, even this avenue to care has now been halted due to the pandemic. Out of desperation, these parents have banded together to protest over the treatment of their children and to fight to secure proper and timely care. This campaigning resulted in many parliamentary questions being asked and multiple media articles being released.

Under pressure to respond to this public outcry, funding was granted in December 2019 for two part-time pain consultant specialist roles and a full multidisciplinary team. This team was to consist of advanced nurse practitioners, clinical nurse specialists, a physiotherapist, an occupational therapist and, importantly, a psychologist. The parents knew it would take time to set up such a team. Therefore, they continued to advocate on behalf of their children for an interim measure to fill the gap in pain care until the full team was in place.

It was agreed that an interim measure would be put in place, whereby a pain consultant from the North was to be contracted on a temporary basis. Many parents were happy with this measure because at this stage their children were truly suffering unbearable pain as they had been without professional care for months and some for even over a year. However, others were not because this interim measure only extended to some, not all, of the children already in the system. No new referrals were being accepted until the full team, including the consultant roles, was in place. This is the case to date and none of these children has been accepted onto a waiting list. That is totally unacceptable and extremely concerning for the children and their families.

The recruitment process for the multidisciplinary team took well over a year to come to fruition. At the end of January 2021, parent advocates were informed that the advanced nurse practitioners, clinical nurse specialists and physiotherapist had been recruited and were in place. The parent advocacy group has informed me that a consultant has been seeing patients within the last couple of weeks. However, they are concerned that there is only one consultant in the position. I ask the Minister of State to clarify if this is the case. Parents' fear is that if there is only one replacement consultant, history could repeat itself.

The parents are also concerned that appointments will only be on the basis of consultant referral. For children with rheumatology-related pain, there is a four or five-year waiting list to see a rheumatology consultant. Children will be waiting for that and then to be referred, meaning they could be waiting a very long time just to see the pain consultant when they are in chronic pain.

Can the Minister of State advise if these services are only offered on a 9 a.m. to 5 p.m. basis, as parents have concerns about the status of out-of-hours services? They are also concerned that the pain relief outpatient waiting list reports, which are listed on the National Treatment Purchase Fund website, underestimate the actual size of the list and, thus, waiting times.

In summary, is only one consultant in place and will a second one be hired? Will the team be operating on a nine-to-five basis? Can the Minister of State clarify the situation with the waiting lists and address the concerns parents have in that regard?

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