Seán Ó Fearghaíl (Kildare South, Ceann Comhairle)
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The Minister of State, Deputy Butler, is dealing with this matter. She is multitalented.

Brendan Smith (Cavan-Monaghan, Fianna Fail)
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I wish to record my appreciation to the Ceann Comhairle for selecting this important topic for discussion. Before the Covid-19 pandemic, the waiting list to see a paediatric rheumatologist was three years long. It may very well be worse now. There is also a year's wait for a private appointment. There are only two paediatric rheumatologists for the entire country. Clearly, this level of service is anything but acceptable. Down Syndrome Ireland, Irish Children's Arthritis Network, iCan, and Arthritis Ireland had a meeting with Crumlin children's hospital personnel almost a year ago in respect of these issues.

The family that has been in contact with me posed a legitimate question, on the their own behalf and on behalf of other families, about when the additional paediatric rheumatologist, promised by the then Minister for Health, Deputy Harris, in 2019 will be appointed. Some advocacy groups in this area are strongly of the view that the country needs six such consultants. Given the incidence of Down's syndrome in this country, this issue requires urgent attention. Research has been brought to my attention which shows that one in 50 children with Down's syndrome has arthritis and that annual screening is required. I also understand there is a long delay in getting MRI scans, which is also unacceptable. Appropriate access to such diagnostics is essential.

The parents who contacted me say that Down's syndrome-associated arthritis is a very aggressive disease and requires aggressive treatment with particular medication. Continuous monitoring, along with follow-up MRI scans, are essential to assess the progress and value of such medication. Parents emphasise that these children may also have other ailments, with additional consequences for their immune systems. As we know, delays in getting assessments and follow-up treatment will generally cause further damage to the child's health that cannot be rectified. It has also been represented to me that access to MRIs is further limited as most children with Down's syndrome need a general anaesthetic and cannot avail of the private option.

Children with Down's syndrome face enough 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 three months of referral. Regrettably, this evening we are talking about three years, not three months, for referral and follow-up treatment if deemed essential. I appeal to the Minister of State to ensure that this issue is addressed in an appropriate manner without further delay.

Mary Butler (Waterford, Fianna Fail)
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I thank the Deputy for raising this serious and important issue. I am addressing the Dáil on behalf of the Minister for Health, Deputy Stephen Donnelly, regarding the unacceptable delays in appointments for children with rheumatism and those with Down's syndrome also.

First, the Minister and I sincerely regret that children can experience a long waiting time for rheumatology treatment. The Minister is conscious of the burden 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 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 National Public Health Emergency Team, NPHET, international guidance and the national action plan published on 16 March.

Children's Health Ireland, CHI, at Crumlin has advised the Department of Health that during the initial phases of the Covid-19 pandemic, all face-to-face hospital outpatient reviews and most planned diagnostic tests were deferred in response to the pandemic. CHI at Crumlin has recommenced the majority of outpatient and diagnostic services, albeit at a 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, there is a significant waiting list at present and there is an increasing volume of referrals. In 2019, there were 1,705 referrals to CHI's rheumatology service, compared with 1,055 in 2018.

At the same time, there is an improvement in the numbers being seen. Even with the disruption caused by the pandemic, the rheumatology service has seen more outpatients in this year to date than it saw in 2019. Some 1,338 have been seen so far this year. This is in part due to the 2019 and 2020 investment in medical, nursing and healthcare 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 speciality clinics for those patients on specific treatments such as disease-modifying anti-rheumatic drugs, DMARDs, biologies. CHI advises the rheumatology team is also seeking to run additional clinics in CHI at Connolly Hospital in 2021 within the current resources. It has further advised there is an active recruitment campaign for an additional rheumatology consultant under way. The closing date for applications for this post is tomorrow, 11 December. It is anticipated that the recruitment of a suitable candidate will allow an increased number of patients to be seen and diagnosed, with treatment initiated as part of a comprehensive rheumatology service.

I assure the Deputy and patients that the Minister 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.

Brendan Smith (Cavan-Monaghan, Fianna Fail)
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I thank the Minister of State for her reply. I welcome the fact that she says there is an active recruitment campaign. We often hear about posts being advertised and interviews taking place, but the filling of the post is critical. That is where a timeline is required. I realise that sometimes the HSE cannot appoint consultants as quickly as they are needed, but I appeal to the Minister of State to ask the Minister to insist to the HSE and CHI that this matter be prioritised. We all understand the restrictions due to Covid-19 and the slowdown in services. However, there was a three-year waiting list before Covid-19 and a totally unacceptable waiting time for MRI scans.

There is another issue. I understand that University College Dublin, UCD, working with the parents of some of these children, has 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, but I do not think it has happened. It was a partnership between UCD and parents to highlight and try to create a greater awareness of the incidence and prevalence of arthritis in children with Down's syndrome. That awareness campaign should be facilitated and brought forward as well.

I received another message from parents of children with Down's syndrome, particularly those who have arthritis as well. They want the public services to listen to them. Far too often the people providing services do not listen to the parents and families of the affected children. In many instances, unfortunately, these children are non-verbal. They depend on their parents to convey the pain they suffer and the treatment they need. I want this issue to be prioritised as much as possible. I am glad the Minister of State said there will be an active recruitment campaign. I sincerely hope we will not be discussing another year next year. We must have this appointment in 2021. As I said, before Covid-19 there was an unacceptable three-year waiting list and that has probably got worse. We need quick progress in ensuring that these children get the assessments and follow-up treatments they require. Their parents are not demanding, they just want fair play for their children.

Mary Butler (Waterford, Fianna Fail)
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I again thank Deputy Brendan Smith for raising this important issue. He has hit the nail on the head; the key word here is an "active" recruitment campaign, which is most important in order that we can pursue the intensely long waiting list. I restate the gratitude of the Minister, Deputy Donnelly, to the staff and management of Children's Health Ireland for the delivery of services to patients during a particularly challenging year.

As I indicated already, routine activity was deferred in the earlier part of the year and, inevitably, scheduled activity was significantly impacted by the 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 also to continue the ongoing improvement 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 for 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 recruitment campaign, which is due to close tomorrow, will result in the key additional consultant resource being recruited.

The information leaflet to which the Deputy referred, which was formulated between UCD and various parents, is an extremely good idea. There is no doubt that parents need to be listened to, as do their children. Communication is key. Awareness is most important. I will refer back to the HSE on the information leaflet and I will ask the HSE to write to the Deputy directly on the matter. I agree that it is a very good idea to roll that out for the information of parents who have children waiting for rheumatology services.