Five point plan for paediatric rheumatology

JIA

22 Mar 2015

Funding is urgently needed to address the dire shortage of paediatric rheumatologists in Australia, says Arthritis Australia.

In a five point action plan released as part of Arthritis Awareness Week the organisation also calls for an increase in dedicated rheumatology nurses and educational material for healthcare professionals to support early diagnosis and referral.

The five point plan: ‘What needs to be done’:

1. Fund paediatric rheumatology training in Australia

Paediatric rheumatologists are in short supply in Australia with none available at all in some states/territories. There are currently only 13 paediatric rheumatologists working 7.6 FTE (full time equivalent), less than half of what is needed just to meet three of the existing specialists plan to retire in the next five years.

Limited access to paediatric rheumatologists is a major contributor to delays in diagnosis and appropriate care for children with JIA and other musculoskeletal conditions managed by these specialists.

There is no dedicated funding for paediatric rheumatology training in Australia. Those who wish to take up the specialty need to go overseas or source their own funding for training.

Because there are so few paediatric rheumatologists most have little time to pursue research or provide education and training in the field for other health professionals, impeding improvements in quality of care.

Dedicated funding of $720,000 over six years to train three paediatric rheumatologists will help to retain current clinical capacity. Additional funding would allow more to be trained, addressing current shortages and freeing up capacity for teaching and research.

2. Expand public paediatric rheumatology services

Team-based care is the ‘gold standard’ for managing JIA, but is rarely delivered.

In 2011, Australia-wide, public funding for specialist health care professionals in paediatric rheumatology consisted of just 2.7 FTE for nursing, 1.15 for physiotherapy, 0.85 for occupational therapy and 0.5 for psychology.

Appropriate skills among health care professionals in community based private practice are also extremely limited, while the cost of these services is a significant barrier to access.

In particular, paediatric rheumatology nurses can provide much needed education, psychosocial support and care co-ordination for children and young people with JIA and their families, especially in areas with limited access to specialist services.

A program to train and employ three paediatric rheumatology nurses in Australia would cost $1.2 million over three years.

3. Develop JIA information and educational materials for health care professionals

Lack of exposure to paediatric rheumatology in training programs for doctors, nurses and allied health professionals has been identified as a major contributor to delayed diagnosis for JIA and other musculoskeletal conditions.

Developing information and educational materials for health care professionals is essential to support early diagnosis and urgent referral to specialist care and to enhance team based care for children and young people with JIA.

4. Develop comprehensive JIA consumer resources

Developing enhanced, tailored information resources and tools will assist children and families to better understand and manage JIA and to navigate their way around available services and supports. Priority resources for development include:

  • Comprehensive, age-appropriate information packages for parents and families of newly diagnosed children so that they understand and can manage the condition
  • Resources for schools and childcare centres so that there is greater peer and community support for children struggling to integrate with their friends and school environment
  • Age appropriate information and resources for adolescents with JIA so that they can be supported during these often difficult, transitional years.For example, a recently developed program to teach children to manage pain due to arthritis (as well as other conditions) would cost $350,000 to roll out across the country.

5. Fund research into a cure

Research is essential to develop better treatments and hopefully find a cure for JIA. JIA, however, receives only minimal research funding in Australia. Only one NHMRC research funding grant has ever been awarded for JIA.

Despite limited funding, important work to build a biobank to support research into the causes of JIA has begun, with funding from Arthritis Australia. The biobank will hold biological samples and detailed clinical and environmental data and is the only one in the world collecting such comprehensive information on children with JIA.

This biobank will underpin wide-ranging research to understand the causes of this complex disease. Already, it has helped to identify a new gene for JIA and is assisting with other research projects on auto-immune conditions nationally and internationally.

Additional funding of $5 million over 5 years would support research to prevent, better treat and hopefully cure JIA.

Already a member?

Login to keep reading.

OR
Email me a login link