Brendan Smith warns of 3-year waits for paediatric rheumatology

Thank you Iancorda and I want to record my appreciation of you selecting this very important topic for discussion this evening. Pre-Covid the waiting list to see a paediatric rheumatologist was three years and it may very well be worse now. There is also a year of a wait for a private appointment. I understand there are only two paediatric rheumatologists for all of our country. Clearly this level of service is anything but acceptable. Down Syndrome Ireland, Irish Children's Arthritis Network and Arthritis Ireland had a meeting with Crumlin Children's Hospital personnel almost a year ago in relation to all of these issues. The family who have been in touch with me posed a very legitimate question on their own behalf and on behalf of other families as to when the additional paediatric rheumatologist promised by Minister Harris for 2019 will be appointed. I know that some advocacy groups in this area are strongly of the view that as a country we need six such consultants. With the incidence of Down Syndrome in this country, this issue needs urgent attention. Research has been brought to my attention which shows that 1 in 50 children with Down Syndrome have arthritis and annual screening is needed. I also understand that there is also a long delay in getting MRIs which is also unacceptable. Of course appropriate access to such diagnostics is essential. The parents who contacted me say very clearly that Down Syndrome associated arthritis is a very aggressive disease and requires aggressive treatment with particular medication. Monitoring on a continuous basis is essential and also follow up MRIs to assess the progress and value of such medication. Parents also emphasise that these children may also have other health ailments with additional consequences for their immune system. As we know delays in getting assessments and follow up treatment will generally cause further damage to the child's health which cannot be rectified. It has also been represented to me that access to MRIs is further limited as most children with Down Syndrome need a general anaesthetic and cannot avail of the private option. At Ciancorla, we all know that children with Down Syndrome have enough of challenges without the extra burden of not having essential rheumatology treatment provided in a timely manner. A few years ago parents were promised that appointments would follow within 3 months of referral. Very regrettably this evening we are talking about 3 years and not 3 months for referral and obviously follow up treatment if deemed essential and necessary. Minister, I appeal to you to ensure that this issue is addressed in an appropriate manner without further delay. Thank you, Ciancorla. I want to thank you very much for raising this issue, a really serious issue and a very important issue. I am taking the opportunity to address it all on behalf of Minister Donnelly in relation to the unacceptable delays in appointments for children with rheumatism and those with Down Syndrome also. Firstly, I would like to state that both Minister Donnelly and I sincerely regret that children can experience a long waiting time for rheumatology treatment. And he is conscious of the burden that this places on them and their families. In response to the COVID-19 pandemic, the HSE took measures to defer most routine elective scheduled care activity. This was to ensure that patient safety and that all appropriate resources were made available for COVID-19 related activity and urgent time critical work. This decision was in line with the advice issued by NPHET, in line with international guidance as well as the National Action Plan published on 16 March. Children's Health Ireland has advised the Department of Health that during the initial phases of COVID-19, all face-to-face hospital outpatient reviews and most planned diagnostic tests were deferred in response to the pandemic. Children's Health Ireland at Crumlin has recommenced the majority of outpatient and diagnostic services, albeit at reduced number in light of the need to ensure appropriate physical distancing. Patients are being seen by consultant rheumatologists in CHI's outpatient suite, including urgent patients and those who were deferred during the early phases of COVID-19. However, Deputy, as you have said quite clearly, there is a significant waiting list at present. There is an increasing volume of referrals. In 2019, there were 1,705 referrals into Children's Health Ireland rheumatology service, compared with 1,055 in 2018. There is at the same time an improvement in the numbers being seen. Even with the disruption caused by COVID, the rheumatology service has seen more outpatients year-to-date this year than they saw in 2019, 1,338 seen so far this year. This is in part due to 2019 and 2020 investment in medical nursing and health and social care professionals, who have developed additional initiatives such as musculoskeletal physiotherapy led triage and clinics. Further development of transition services with St Vincent's University Hospital nurse led clinics and specialty clinics for those patients and specific treatments such as DMA or DS biologists. Children's Hospital Ireland advises the rheumatology team are also looking to run additional clinics in CHI at Connolly in 2021 within the current resources. Children's Hospital Ireland have further advised that there is an active recruitment campaign for an additional rheumatology consultant underway. I understand that the closing date for applications for this post is tomorrow, Friday 11th December. It is anticipated that the recruitment of a suitable candidate will allow for an increased number of patients to be seen, diagnosed and treatment initiated as part of a comprehensive rheumatology service. Finally, I wish to reassure the Deputy and to reassure patients that Minister Donnelly is committed to ensuring that children have access to the service they require. The Department of Health will continue to work closely with the HSE in this regard. Thank you Minister. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. Deputy Smith. to ask Minister Donnelly to insist with the HSE and Children's Hospital Ireland as well that this matter has to be prioritised. I understand the restrictions due to COVID and the slowdown in services that we all fully understand that but there was a three-year waiting list pre-COVID and absolutely and totally unacceptable waiting time as well for an MRI and one other issue and it just I understand that UCD working with parents of some of these children have developed an information leaflet that would be of benefit to general practitioners and other healthcare professionals that was to be distributed widely throughout the medical and nursing community I don't think that has happened and it was it was a partnership between UCD and parents in highlighting and trying to create a greater awareness of the of the prevalence and the incidence of arthritis in children with Down syndrome so if that awareness campaign could be facilitated and brought forward as well. One other message that I got from parents that I spoke to of children with Down syndrome and particularly children with with the arthritis as well is they want the public services to listen to them far too often the people providing services don't listen to the families to the parents of the children who are affected we know in a lot of instances these children unfortunately are non-verbal they depend on their parents to convey the pain that they suffer they and what the the treatment that they need so Minister this is an issue that I want prioritised as much as possible I'm glad that you said there will be an active recruitment campaign I sincerely hope that we won't be talking about another year and another year we need this appointment in 2021 and I said pre-COVID there was a three-year totally unacceptable waiting list that has that has probably got worse but Minister we need quick progress in ensuring that these children get the assessments and get the follow-up treatment that they need their parents are not demanding they want just a bit of fair play for their children thank you again thank you Deputy Smith for raising this really important issue and I think you have hit the nail on the head the key word here is an active recruitment campaign which is hugely important so that we can pursue that intensively long waiting list I would like to thank the deputy for raising the issue and I would like again to reinstate the gratitude of Minister Donnelly to the staff and management of Children's Health Ireland in delivering service to patients during a particularly challenging year as I have said already routine activity was deferred in the earlier part of the year and inevitably scheduled activity was significantly impacted by these necessary decisions however Children's Health Ireland has been phasing up services since June and activity has been increasing Children's Health Ireland has been working not only to return services to their previous levels but to continue the ongoing improvements in service delivery that will culminate ultimately in the move to the new Children's Hospital facility this is reflected in the increased level of service in rheumatology outpatients despite the effects of COVID-19 which has come about as a result of innovative approaches by the rheumatology team the service will be further developed by additional resources and it is hoped that the route the recruitment campaign which is due to close tomorrow will result in the key additional consultant resource being recruited in relation to the information leaf that you referred to that was formulated between UCD and the different parents I think it's an extremely good idea there's no doubt that parents need to be listened to the their children need to be listened to and communication is key and awareness is so important so deputy I will I will refer back to the HSE in relation to this information leaf it and I will have them to write to you directly in relation to it but I do think it's a very good idea that that should be rolled out for information for parents that have children waiting for rheumatology services Thank you