Dáil debates

Wednesday, 16 June 2021

Saincheisteanna Tráthúla - Topical Issue Debate

Health Services

9:22 am

Photo of Mairead FarrellMairead Farrell (Galway West, Sinn Fein)
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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?

9:32 am

Photo of Frank FeighanFrank Feighan (Sligo-Leitrim, Fine Gael)
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I thank the Deputy for raising the issue and welcome the opportunity to address the Dáil on behalf of the Minister for Health, Deputy Stephen Donnelly, on this important topic. I assure the House that Children's Health Ireland, CHI, is very aware that issues with the complex pain management service have been the cause of anxiety and upset for parents and children. Funding has been provided to address this issue and most posts have been recruited.

As the Deputy may be aware, the background to this issue is that a consultant in complex pain management in CHI resigned at the end of 2019. It is a highly specialised position and the service has evolved on an ad hocbasis since then. It was recognised there was a need to put in place a more structured model to manage the needs of patients with complex pain to ensure outcomes and alignment with best practice internationally. Funding was provided to do that and this provided for a number of key posts as part of the development of the service.

The model of care for paediatric anaesthesia developed by the national clinical programme for anaesthesia and endorsed by the Irish paediatric anaesthesia network provides guidelines for the organisational structure and best practice model for a paediatric pain management service. CHI has been in the process of developing the structure for this model and key posts are now in place. This interdisciplinary service consists of a whole-time equivalent consultant with special interest in pain management, a clinical nurse specialist, 1.2 whole-time equivalent advanced nurse practitioners, an occupational therapist, a physiotherapist and a psychologist.

Children’s Health Ireland has advised that all posts are in place except the consultant position. Unfortunately, recruitment for this post has so far been unsuccessful and is ongoing. The post was advertised last year but did not attract candidates. It is being redesigned to structure it slightly differently and it is hoped the way it has been configured will now attract suitable candidates. In the interim, CHI advises that a locum consultant has been put in place until such time as the permanent consultant position is filled.

CHI has confirmed all service users have access to the clinical nurse specialist and advanced nurse practitioners, who are available to address urgent queries under the governance of the pain consultant. Contact details have been provided to service users by the CHI.

The new service will provide a biopsychological approach to pain rehabilitation, in keeping with evidence-based treatments that are recognised globally. CHI has advised that the new model of care will be fully in place prior to the end of the second quarter of this year and service users will be contacted with appointments. I reassure patients that the Minister is committed to ensuring children have access to this crucial service and the Department of Health will continue to work closely with the HSE and CHI in this regard.

The Deputy asked about a nine-to-five service, consultant referrals and the out-of-hours service. I will raise that directly with the Minister if the Deputy sends me an email.

Photo of Mairead FarrellMairead Farrell (Galway West, Sinn Fein)
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I thank the Minister of State and I will send that in an email. I understand there is funding in place and it is good we have clarity that there is a locum consultant and that amendments will be made in an effort to hire a full-time consultant, which it is hoped will attract more candidates. How long will that process take? When does the Minister of State expect it to close in order that the waiting lists can be dealt with? I understand there is a locum consultant but children have been waiting 18 months. They have had no amendments to their pain management. It has been a few weeks since that locum consultant was put in place and they have not heard anything since. That needs to be looked at.

I am concerned about those children who have to wait four or five years to see one consultant in order to then get another consultant. I think we all agree that to see children in chronic pain and parents not to be able to give them the help they need is really distressing and has a huge impact on the children’s lives. We need to do everything we can in regard to chronic pain in children. I welcome the opportunity to speak to the Minister of State on this. We must do everything we can to put everything in place to help these children. I imagine we are all on the same wavelength on this.

I will follow up with those specific questions in an email to the Minister of State. If he comes back we can push this forward in order that children in chronic pain can get the help they need.

Photo of Frank FeighanFrank Feighan (Sligo-Leitrim, Fine Gael)
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I thank the Deputy again for raising this issue, for her awareness of it and her understanding that it is a particularly challenging time for the health system, which has experienced severe pressure from the impact of Covid, exacerbated by the ransomware attack.

It is important to put on the record the enormous efforts of all staff at this time. The Department of Health does not have full access to information on the impact of the ransomware attack on waiting lists but will provide an update as soon as one is available. According to the most recent information available, as of 13 May, there were 29 children on CHI’s outpatient lists waiting for a pain relief appointment. Notwithstanding the challenges, I know CHI's priority is to ensure a sustainable pain management service is in place to meet the needs of all children.

CHI has advised it is intended that the new model of care would be in place by the end of this month. It also has confirmed that its pain team has been engaging with all patients using the service and that all new and existing service users have been informed of the change of service model. I understand the engagement with service users has included a questionnaire, which will help the service to triage patients. CHI has advised patients are being actively triaged. During this time, CHI has confirmed that all service users have access to the clinical nurse specialists and advanced nurse practitioners who are available to address urgent queries under the governance of the pain consultant. Service users will be contacted with appointments once the new model of care is in place.

I look forward to the Deputy’s email and I will pass it on to the Minister and get the answers the Deputy seeks.