PRESS RELEASE ON RHEUMATOLOGY SERVICES

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May 16th 2017

One step forward, two steps back for children in Ireland with Juvenile Arthritis

ican at the dail

Irish Children’s Arthritis Network (iCAN) are pleased to announce that they have received confirmation from the HSE that paediatric rheumatology consultants will be kept off the general medicine rota in Our Lady’s Children’s Hospital, Crumlin (OLCHC). This positive move has been achieved as a result of a meeting with the Health Minister Simon Harris, HSE officials, iCAN chairperson Wendy Costello, iCAN committee member Edel Hughes and deputy Marc Mac Sharry on 15 February 2017. At this meeting, iCAN presented evidence of the unacceptable lack of services in paediatric rheumatology across the country.  The key areas of concern presented were: 

• Delays of up to 2 years and 6 months for initial diagnostic appointments, the World Health Organisation recommends children be diagnosed and treated within a 6 week period

• Waiting time for joint injections of up to 14 months

• Cancelled monitoring & treatment appointments 

• No dedicated unit for rheumatology, leading to long waits on days of infusions

• Lack of access to physiotherapy, occupational therapy and ophthalmology in many areas 

• No formalised shared care model with inadequate regional services

The HSE confirmed that there are significant waiting list and access issues for patients with Juvenile Idiopathic Arthritis (JIA). Minister Harris has stated that “OLCHC have submitted for additional funding over the past two years for paediatric rheumatology services, unfortunately, due to competing priorities across the health service, the submissions were unsuccessful.” 

iCAN Chairperson Wendy Costello stated, “These delays in treatment are totally unacceptable. Delays in treatment and lack of services result in children living in constant chronic pain and suffering permanent joint damage. Not only is this an inhumane way to treat children with JIA, but the implications for the Irish healthcare system in the future will be massive if these children are not treated in a timely manner. We are looking at a generation coming down the line who will be burdened with serious joint problems, associated mental health issues related with long term chronic pain, along with employment challenges as these children become adults. Not only are they having their childhood stolen from them, but a productive and healthy adulthood as well. All this can be prevented with proper treatment and funding for these children, but time is of the essence.”

iCAN, a parent-led, 100% volunteer children’s charity, are currently advocating for better services for children with JIA in OLCHC and in the new childrens hospital at St James Hospital. We would appreciate any support we can get for our campaign.  

If you would like more information on iCAN, please visit www.icanireland.ie, our facebook page: www.facebook.com/icanireland or email icanreland@gmail.com. 

Wendy Costello, iCAN Chairperson, is available on 086 8289817