Children with Arthritis Tell Conference They Are Fed Up ‘Waiting in Pain’

Arthritis Ireland Calls for Dedicated Paediatric Rheumatology Unit to Be Established Urgently

Children with arthritis today told an Arthritis Ireland press conference that they are fed WaitingInPain-47up waiting in pain and called for a dedicated fully staffed paediatric rheumatology unit to be established to enhance patient care. The calls were made at ‘Waiting in Pain’, a juvenile arthritis (JA) Children’s Conference, where it was revealed that the waiting list for children with suspected arthritis now stands at more than two years, putting children at risk of permanent joint damage.

More than 1,000 children are living with JA in Ireland today, making it as common as childhood diabetes in under 12 year olds. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) do not have a dedicated clinical unit. As well as this, there are just two consultant paediatric rheumatologists (both of whom have general medicine responsibilities also) and one HSE funded rheumatology clinical nurse specialist appointed for the entire country.

WaitingInPain-34The lack of facilities, resources and inadequate staffing levels is leading to waiting lists of more than two years for children with suspected JA. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected JA must be seen by the paediatric rheumatology team within four weeks of the referral begin made.

Speaking at Waiting in Pain, Danny DeVaal (aged 16) said: “Having been diagnosed with arthritis when I was just 7-years-old, I know just how important it is to have quick access to your rheumatologist to get the treatment you need. Pain is merely a component which contributes to a larger picture with JA. Many people cannot comprehend the daily struggle children with arthritis endure; the endless hospital appointments, and normal childhood activities we are forced to stop due to arthritis. If we are to lead normal lives, we need access to treatment within a reasonable timeframe. At the moment, we are waiting in pain and it’s not acceptable.”

Dr Orla Killeen, one of only two consultant paediatric rheumatologists in Ireland, lent herWaitingInPain-36 support to the campaign also. “Ireland has one of the lowest levels of paediatric rheumatology resources in Europe per head of population. Juvenile arthritis can be an aggressive, potentially lifelong condition that can lead to serious disability and causes intense pain for children.  Early intervention with aggressive treatment is essential to prevent juvenile arthritis extending to multiple joints and result in a more positive outcome for such children. If left untreated, it can lead to permanent muscle wastage, joint damage and deformity, not to mention the trauma that a child and its family experiences coping with such a new diagnosis. Children deserve better”.

At the conference, Arthritis Ireland released its pre-budgetary submission on paediatric rheumatology, which called for a dedicated appropriately staffed paediatric rheumatology clinical unit to be established at OLCHC with an additional consultant paediatric rheumatologist appointed including allied health professionals, along with two additional rheumatology clinical nurse specialists to reduce waiting lists and enhance patient care.

Arthritis Ireland CEO John Church said: “Children are being left in uncontrolled pain and put at risk of permanent joint damage due to a lack of resources and facilities in paediatric rheumatology in Ireland. It is vital that the recommendations contained in Arthritis Ireland’s pre-budgetary submission are adopted as a matter of urgency if waiting lists are to be reduced to the recommended levels.”

WaitingInPain-50As well as Arthritis Ireland’s campaign for better paediatric rheumatology services, the organisation provides a wide range of supports for families living with JA, including a JA helpline, pain management workshops, JA Family Day events, a JA Road Trip weekend for teenagers and a comprehensive information service.

Mr Church added: “No component of our vital JA programme receives state funding so we are heavily reliant on the support of the public to continue providing services. This JA Month, I am asking the public to make a big difference in the lives of children with arthritis by texting ‘JA’ to 50300 to donate €2.”

Click here to read our full pre-budgetary submission.