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Scottish Paediatric & Adolescent Rheumatology Network (SPARN)

Reducing variation and improving the quality of care for children and young people with rheumatic conditions


Summary

The Scottish Paediatric and Adolescent Rheumatology Network (SPARN) has developed a uniform model of care for children and young people with rheumatic diseases across a challenging geography, with a focus on addressing the needs of patients and their families. The network has significantly improved specialist access throughout Scotland, leading to improved outcomes, less variation in care, and a better understanding of the burden of disease.
  • Patients with access to specialist paediatric care has increased from 400 patients in 2009 to 1,120 patients in 2015 
  • The proportion of patients seen by a paediatric rheumatologist within 10 weeks of symptom onset has increased from 48% to 76%  since 2009 
Download a printable pdf of the case study 


The Challenge

  • A lack of equity in paediatric rheumatology services was a key issue in Scotland as few areas had local multidisciplinary team (MDT) expertise, despite the presence of informal networking; prior to SPARN, many families were travelling significant distances to receive appropriate care or were receiving care from non-specialists more locally.
  • Data on the prevalence of childhood rheumatic disorders were entirely unavailable making it impossible to assess the burden of disease and requirements of care throughout Scotland.

The Solution


Development

  • A multidisciplinary steering group with wide geographic representation was established and exercises were undertaken to understand current care. Focus groups with families were used to identify key priorities for future models of care.
  • Funding secured from the National Delivery Plan for Specialist Paediatric Services in Scotland allowed additional nursing posts, some additional physiotherapy time and a small number of additional Consultant sessions.

The network

  • SPARN was established as a Managed Clinical Network in 2009, and now has a recognised SPARN clinic in each area of Scotland (n=13), enabling children to receive appropriate multidisciplinary care locally. A further three sites are planned.
  • There is a programme of intensive training, education and support for all staff, which includes local development days for MDTs covering clinical issues, A website and a managed knowledge network (MKN) to further disseminate information amongst clinicans
  • Agreed standards of care have been developed for all clinics across Scotland with audit of delivery against these standards.
  • A database with audit capabilities has been established to understand disease prevalence and to provide a basis for further service improvement and the monitoring of clinical outcomes.

Service Performance and Outcomes

  • Access to specialist paediatric care has dramatically improved with the number of patients known to these specialist teams increasing from 400 patients in 2009 to 1,120 patients in 2015.
  • The proportion of patients seen by a paediatric rheumatologist within 10 weeks of symptom onset has increased from 48% to 76% by since 2009
  • An established database now holds data on approximately 900 children which is used to audit services against the British Society for Paediatric and Adolescent Rheumatology (BSPAR) standards of care to continually drive improvements.

Financial Performance and Outcomes

  • Only a limited initial investment in staff and support was needed to set up SPARN with estimated funding of £367,931 secured for a number of posts to be distributed across the network.
  • Annual running costs relating to communications and events were as low as £2,224 in the 2014/2015 financial year.
  • Major developments were largely enabled by reconfiguring local services/resources and business planning.

Patient Focus and Satisfaction

  • SPARN works closely with a parallel parent network to provide support to families and ensure their views are reflected in future service development. Parent feedback on the local service model of care has been extremely positive.
  • SPARN has a dedicated group of clinicians developing a standard programme across Scotland to manage the transition of teenagers into the adult service to ensure that high quality care is maintained.
  • Seventy-two percent of all newly diagnosed patients received the network-standard information pack to help them understand their disease.

Commissioning Implications


SPARN is an example of commissioning best practice in rheumatology and meets a number of priorities for commissioners, clinicians and patients:

 

  • Effective medicines management – a standardised service and increased access to specialist consultants ensure that the most appropriate treatment is provided.
  • Guideline compliant quality standards – SPARN has adopted the BSPAR juvenile idiopathic arthritis standard of care to ensure that a consistent, high-quality service is delivered throughout Scotland. For instance:
    • Staff training – members of SPARN receive extensive and continuous training and experience in paediatric rheumatology
    • Diagnosis of disease – SPARN strives to provide full assessment of the disease, general health, and psychosocial and pain management needs of all children and young people.
  • Active support for self-management – SPARN provides extensive education to children and their parents to encourage active management and control of tier disease

 

This service is an outstanding best practice model for the coordinated management of rheumatic diseases in children and young people. SPARN have made significant gains in identifying and improving care across Scotland and creating a standardised, equitable service with minimal investment.


Service diagram