Marc MacSharry (Sligo-Leitrim, Fianna Fail)
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I thank the Minister of State for taking the time to take this matter today. I very much hope he is aware of the issue of the many children throughout the country who are suffering from juvenile arthritis. The need for these children to see a paediatric rheumatologist is extremely urgent. As things stand, Ireland has the equivalent of 2.5 paediatric rheumatologists available whereas international best practice indicates that we ought to have six. Children are routinely waiting for up to two years while in chronic pain without being dealt with or seen notwithstanding the fact that they ought to be monitored every three months after that. I recently brought the Irish Children's Arthritis Network, a group of parents, to the House and we had the opportunity to meet the then Minister of State at the Department of Health, Deputy McEntee, standing in for the Minister, Deputy Harris. Unfortunately, little or nothing has happened on foot of that. The HSE has given a response which, pathetically, refers to competing priorities. If we are not prioritising the health of children, we have our priorities all wrong.

The situation with juvenile arthritis is such that if these growing children are not seen and monitored at optimum levels, they will be left to take medications and drugs which are in fact biological agents with very serious and negative side effects. As they are growing, the condition leads to skeletal deformity. For our response as a nation to be to refer to competing priorities is just not good enough. The 2.5 consultants are a half-time consultant in Temple Street and two consultants at Crumlin children's hospital. That level of appointments is four below what it should. We ought to have six nationally. The consultants we have are saying they do not have the staff, the capacity or the resources to do what they as physicians know is international best practice. It is what they want to do and cannot do but yet we are referring to competing priorities.

The response from the HSE indicates that we are prioritising adult rheumatology services with the resources going in that direction. While nobody wants to see those people suffer either, young and growing children should be the priority. If they are not seen in a timely fashion and monitored in the way I have said, they will develop skeletal deformities and other problems. If we are simply talking about pounds, shillings and pence, which we should not be, that will inevitably cost the State more in the longer term as larger and more significant surgical and other interventions and care will be required. The State will be expected to provide that.

There are 1,000 children nationally who are affected in this regard. There will always be more as more are born. It is in every county. I think of a specific family in Grange, County Sligo. My own cousin has a daughter who suffers from this. I am very well briefed on the challenge. While it is a case of loaves and fishes in the Department of Health to try to have enough resources to meet all demands and needs, there is no one alive, sick or healthy, who would not understand and commend us as a nation on prioritising children. I appeal to the Minister of State to intervene and to seek immediately to employ additional paediatric rheumatologists to bring us up to six consultants. We should then begin to provide outreach services in the larger university hospitals nationally to prevent so many children having to travel. In the first instance, let us get these children seen, if necessary with the benefit of the national treatment purchase fund.

Jim Daly (Cork South West, Fine Gael)
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I thank Deputy MacSharry for raising this matter and giving me the opportunity to update the House on paediatric rheumatology services. Juvenile idiopathic arthritis is the most common inflammatory disorder of childhood and I understand that there are more than 1,000 children under the age of 16 in Ireland with the condition. Demand for this national service has grown dramatically in the last decade with patient numbers having increased by almost 400% since 2006. Rheumatology continues to be one of the most rapidly growing services within Our Lady’s Children's Hospital Crumlin and now accounts for the highest number of medical day-care patients seen at the hospital annually.

The Minister for Health is aware that there are challenges in meeting the growing demand for services and that waiting lists for access to paediatric rheumatology services are a particular issue of concern. The HSE is constantly working towards improving access to rheumatology services. The Children's hospital group has confirmed that the two paediatric rheumatology consultants in Crumlin have been taken off the general medicine roster, which has facilitated a greater focus for them on rheumatology services. While nurse recruitment remains a challenge for Crumlin, the theatre closure situation is slowly improving, which will have a positive impact on access to joint injections for Crumlin patients.

In terms of services at Temple Street hospital, I understand that a staff member has recently been accredited as an advanced nurse practitioner in pain and rheumatology and that the hospital intends to utilise this new role to develop a nurse-led clinic to run in parallel with its new patient clinics. The need for a third rheumatologist post is acknowledged and paediatric rheumatology service development will be considered in the annual Estimates process in the context of competing priorities for limited service development funding.

The development of the new children’s hospital and satellite centres provides an opportunity to progress operational integration of the three existing children’s hospital rheumatology services and to plan for the appropriate provision of these services well in advance of the move to the new facilities. The new children’s hospital will provide a wide range of physiotherapy, occupational therapy and hydrotherapy services to children with juvenile arthritis, with clinical examination rooms in the outpatient department and day beds in the day-care unit specifically available for rheumatology. The national model of care for paediatric health care services recommends a hub-and-spoke model in the context of paediatric rheumatology. The new children’s hospital will have a central role in the national model of care. It is proposed that rheumatology consultants will provide outreach clinics to Cork, Galway and Limerick, providing greater local access to services for patients outside the Dublin area.

Representatives from the Irish Children’s Arthritis Network met the Minister of State, Deputy McEntee, in February to discuss services for people with juvenile arthritis. This group also met the CEO of the children’s hospital group in June to discuss current and future services. The Deputy may be aware that the Minister for Health is also meeting representatives from Arthritis Ireland tomorrow to discuss paediatric rheumatology services.

I assure the Deputy that the Department of Health is aware of the challenges facing children with juvenile arthritis in accessing rheumatology services and we are working with the HSE to bring about further service improvements as soon as possible.

Marc MacSharry (Sligo-Leitrim, Fianna Fail)
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It is nothing personal but I am afraid the prepared reply given to the Minister of State is insufficient in the extreme. It was I who arranged the meeting with the Minister of State, Deputy McEntee. In fact, it was to be with the Minister for Health, Deputy Harris but it had to be cancelled at short notice as a result of the demands of the leadership campaign that was under way within Fine Gael at the time. It was only when I demanded that alternative arrangements be made that then Minister of State with responsibility for mental health, Deputy McEntee, stepped in to listen to the concerns. As I said, very little happened on the back of it.

I will refer to a couple of things the Minister of State, Deputy Jim Daly, said. He indicated that rheumatology continues to be the most rapidly-growing service within Our Lady's Hospital. That absolutely is not the case. It might have the most rapidly-growing demand but, with two consultants there, we are not expanding the service. We need to aspire to having six consultants in place. The Minister of State mentioned that a third consultant may be considered under the Estimates process. We need to push the bar higher. Six are required. Last month and, again, this month, people who are in the system and going for follow-up appointments have had scheduled appointments cancelled and put back until an unknown date in 2018. These are growing children with, as I said, skeletal deformities and they continue to be obliged to take these biological agents that have very bad side-effects.

The Minister of State mentioned the new children's hospital. For God's sake, when will that be built? We really do not know. The project is ten years in the making so far. These sick children will be adults by the time it is built and the effects of not being seen in a timely fashion will have crystallised, so that is not acceptable.

The Minister of State indicated that a hub-and-spoke is the way forward. I agree. At present, however, we do not have a hub. How can we even dream to have a spoke without the optimum number of consultants and nursing staff in place?

Finally, and this was really insulting, whoever wrote the Minister of State's reply did not realise that the Leas-Cheann Comhairle and I are from the north west. The outreach services are to be provided in Cork, Galway and Limerick. The north west has been forgotten yet again. Sometimes I feel that central government feels that the north west voted to leave the European Union and, indeed, the Republic of Ireland because, yet again and as usual, that corner of the country, which comprises 30% of our landmass and which has a population of 300,000, has been cast aside. That is not acceptable.

The Minister of State indicates that he can assure me that the Government is aware of the challenges. We are all aware of the challenges. The stones on the road are aware of the challenges. When will we embrace some of the solutions that I am putting forward?

Jim Daly (Cork South West, Fine Gael)
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I cannot answer the Deputy's question about when progress might be made. As he is aware, much of what is contained in the reply relates to the future. I accept what the Deputy is saying on the development of a new children's hospital. We have to be ambitious for that hospital and to ensure that we have the full complement and range of services that the children deserve.

I am familiar with the particular issue the Deputy raised. A good friend of mine suffered from the relevant condition for many years. It is a very difficult illness to deal with and one that presents many challenges. I accept the point the Deputy makes about the challenges it presents into older life and that it can cost an awful lot more in later life in light of the surgeries required if an early intervention is not made. I also accept what the Deputy says about prioritising children. I very much agree that we should be prioritising services for children, earlier interventions, etc. The Deputy may rest assured that I will feed that back to the Minister and the Department, as well as his concerns about the fact that issues relating to the north west were not addressed in the reply.

Marc MacSharry (Sligo-Leitrim, Fianna Fail)
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I thank the Minister of State.