Header Item Special Educational Needs Staff (Continued)
 Header Item Juvenile Rheumatology Services

Wednesday, 12 July 2017

Dáil Éireann Debate
Vol. 958 No. 1

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(Speaker Continuing)

[Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly] I can advise the Deputy that €8 million in additional funding was invested in 2014 and 2015 to fund 200 additional posts to support the implementation of the national programme on progressing disability services for children and young people under 18 years of age. A further €4 million in additional funding was provided for 75 therapy posts in 2016.

Deputy Michael Healy-Rae: Information on Michael Healy-Rae Zoom on Michael Healy-Rae St. John of God's has recently written to families with family members in St. Mary of the Angels requesting the payment of additional money every month. One family has paid €400 per month for the last 20 years and is now being asked to pay €195 on top of that, which will leave them struggling. What will St. John of God's do if the family cannot pay? They cannot tell their children to leave the facility.

I would sincerely love to catch a hold of the person in the HSE who dreamt this whole thing up a number of years ago of using the word "reconfiguration" rather than the simple, ordinary and down-to-earth word "cut". Any time the HSE has spoken about reconfiguring something, it means it is going to cut the service and its funding. However, it does not use that ordinary common word. Rather, it uses the highfalutin term "reconfiguration of services". The person who first said that would want to be given a good shaking for ten minutes to bring him or her down to earth and to show that a reconfiguration is the same as a cut. It is certainly not enhancing a service and it is doing nothing to improve things. It is a cut. A cut is a cut, not a reconfiguration. It is not the Minister of State's fault. I do not direct this at him. I direct it at those hiding within the HSE who dreamt this up with their spin doctors a number of years ago. They were allowed to get away with it by politicians in this House at the time who should now tell them that there is no such thing as reconfiguration. It is a cut. Those words are being used by the Minister of State here now because, quite simply, he was told to use them by the HSE. The Minister of State and his colleagues should be telling the HSE that they never again want to see a memo from the HSE containing the word "reconfiguration" on it because it is rubbish. The HSE should be told to stick it and change it to the word "cut". At least then we could see exactly what is being said.

I appreciate the Minister of State's response. I have raised the issue with him and I give him a commitment that I will continue to raise it in the House to the best of my ability as it is right to do on behalf of the children and their parents and grandparents.

Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly I thank the Deputy. I must differ somewhat with him on the word "reconfiguration". It does not always mean a cut. One of the better examples of reconfiguration was the reconfiguration of cancer services in Ireland. Everybody must accept that the reconfiguration and delivery of those services nationally was one of the more outstanding successes of politics and the HSE working together. While it was difficult and a lot of people had to make a lot of difficult choices, in the fullness of time, which is the best place to be to judge, we see that it has been a reconfiguration story of which we can all be proud. In respect of cancer services, it is something that has mattered a great deal to a lot of us on a personal level. As such, I take issue with the Deputy notwithstanding his entitlement to his own opinion. I do not agree that reconfiguration is always a bad word.

On the specific issue, I have given the Deputy the best answer the HSE and I can provide. The HSE has acknowledged that there is a need for additional nursing here and it is looking to see what level of resources are required. I will ensure the HSE speeds up its assessment of the increased need and try to get this up and running for the children in that school. It is the least they deserve. I thank the Deputy and the Leas-Cheann Comhairle.

Juvenile Rheumatology Services

Deputy Marc MacSharry: Information on Marc MacSharry Zoom on Marc MacSharry 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.

Deputy Jim Daly: Information on Jim Daly Zoom on Jim Daly 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.

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