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Dáil
‹ Leaders' Questions

Juvenile arthritis services

Summary

Deputy Healy raises the needs of children with juvenile arthritis, including early treatment, a third rheumatologist, and a hub-and-spoke service model. The Tánaiste says she is aware of the issue, the Health Minister has met groups, and service development should be advanced through the new children's hospital and care centres.

More than 1,000 children under the age of 16 years suffer with juvenile arthritis, which differs from adult arthritis in that it is caused by the immune system inflammably attacking the body's own joints. The cause of juvenile arthritis is multifactorial but includes genetic disposition and environmental factors. Severe pain is associated with the condition and, because children are growing, any extended period of inflammation can affect their joint formation. Therefore, early and aggressive treatment of the condition gives the best results for children.

Parenting of a child with juvenile arthritis can be a rollercoaster experience. The Irish Children's Arthritis Network, iCan, is a 100% volunteer-based, parent-led, grassroots charity. It provides a national support network for children with arthritis and their families through the provision of factual, emotional and practical support. iCan has funded the first ever dedicated rheumatology assessment suite at Crumlin children's hospital.

The charity cannot do it all on its own and current services for the children in question are deficient. The Government has a responsibility to provide a fully resourced, staffed and funded rheumatology service to ensure that these children, who are waiting in pain, are diagnosed early and treated quickly. A delay in diagnosis and treatment risks permanent damage to joints and skeletal deformities.

There are 793 children waiting for an outpatient appointment to see a consultant. Of these, 226 have been waiting for more than 18 months. There are 103 children who have been waiting for inpatient or day case treatment for more than six months. The standards set out in the model of care for paediatrics are not being adhered to and clinic appointments are regularly being cancelled. The three-monthly clinic monitoring of children on biological drugs is important but it is not being done.

There should be six paediatric rheumatologists in the country. We have but two. Crumlin children's hospital has submitted a business plan to provide adequate but basic services for these children. As an absolute minimum, a third paediatric rheumatologist, with a full multidisciplinary team, including doctors, physiotherapists, psychologists and ophthalmologists, is required urgently.

Will the Government fund the development of the juvenile arthritis service at Crumlin children's hospital in line with the hospital's proposed business plan? Will it also approve the appointment of a third paediatric consultant with a multidisciplinary team?

Comment on this

I thank Deputy Healy. I am aware of the work done by Arthritis Ireland - I have taken a special interest in that - and iCan. The aim of the presentation that the latter made this week was to increase awareness of juvenile idiopathic arthritis, JIA, and to highlight the need for additional services. This is a common disease of childhood. It is estimated that there are more than 1,000 children under 16 years of age with juvenile arthritis.

The Minister for Health is aware of the challenges and has met representatives of Arthritis Ireland to discuss service needs in the health service. The increased investment in the health services will be helpful in dealing more effectively with these issues, as will the new children's hospital, where there will be an opportunity to put the new paediatric models of work into play once it is built.

The rheumatology specialty continues to be one of the most rapidly growing services in Our Lady's Children's Hospital, Crumlin, accounting for the highest number of medical day case patients per year. This demand has had an effect on waiting lists for paediatric rheumatology services. The Minister is awaiting the HSE's service plan. He will address the question of how many consultant paediatric rheumatologists are required in so far as resources permit, but he is conscious of the need for more consultants in the context of children with this condition.

A number of initiatives have been undertaken. For example, the paediatric rheumatology consultants in Crumlin were removed from the general medical roster, which has facilitated a greater focus on rheumatology services. That is important. The theatre closure situation is slowly improving, which will have a positive impact on access to joint injections for Crumlin patients. The HSE has developed a national model of care for paediatric health care services, including the development of a hub-and-spoke model of care for paediatric rheumatology as part of a national clinical network in paediatrics. A key priority for the children's hospital group is to develop a shared strategy to achieve the integration of services, including rheumatology, in advance of the move to the new children's hospital.

This is a difficult condition for children and their families. It requires ongoing intensive care. The Minister for Health and the HSE have been taking some actions to improve the situation, but more investment is clearly necessary.

Comment on this

I thank the Tánaiste. Children suffering from juvenile arthritis are entitled to a quality health service, something that they do not have at the moment. These children and their families are demanding that funding for a third rheumatologist and a multidisciplinary team be included in the 2018 HSE national service plan.

Some 70% of children presenting with this disease are from outside Dublin. Therefore, we obviously need an integrated national and regional service along the lines of the European hub-and-spoke model, Crumlin hospital being the hub with links to regional centres providing ophthalmology, occupational therapy, physical therapy, psychological services etc. Two clinical nurse specialists are required to co-ordinate and manage the transition of teenagers to the regional adult services. These measures are required urgently and I look forward to the Minister for Health ensuring that the services in question, particularly the third rheumatologist and the multidisciplinary team, are included and funded in the 2018 HSE national service plan.

Comment on this

The need for another rheumatologist in Crumlin is acknowledged.

The development of the new children's hospital and urgent care centres also provide us with an opportunity to progress the integration of the three hospitals and plan for the kind of provision which the Deputy said is needed. I repeat that is an area of significant demand. There are waiting lists, but every effort is being made to ensure that children who need this service get it as speedily as possible.

Comment on this