We recently published the Paediatric and Adolescent Rheumatology: the State of Play report. This report, supported by JIA Matters, surveyed clinicians, young people and their parents, gaining a comprehensive overview of paediatric and adolescent rheumatology services in the UK.
Alarmingly, we found that services are under-resourced, staff are overstretched and patients struggle to access some services. However, our report also highlights many of the successes in services and the hard work of all health professionals working in paediatric and adolescent rheumatology.
BSPAR Section Council President Kathy Bailey reflects on advances in the specialty and the challenges for both our members and children, young people and their families as presented in the report.
Over the past 20 years, paediatric and adolescent rheumatology has been a rapidly developing specialty. The advent of therapeutic approaches have transformed the lives of children and young people with rheumatological, musculoskeletal and inflammatory conditions.
Teams have evolved to support every element of care for these families living with long-term conditions. This, however, has led to variable care, dependent on location. Resources and funding are not uniform across the UK, and access to medication remains a challenge for these diseases.
For those receiving excellent care, it’s clear they benefit from the support of a complete team and effective medication, which improves control of their condition and quality of life. However, there are some specific challenges around delivering this:
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The restrictive approach to accessing biologic medications for rare or unresponsive disease, particularly in England, where international experience suggests its benefit
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The least well-supported area across most services is psychology. Psychological support for young people growing up with a long-term condition, struggling with injectable medicine and experiencing chronic pain, can transform the experience of their condition
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As with all areas within the NHS, work pressures and staff shortages are taking effect, and recruitment is an increasing challenge. Paediatric and adolescent rheumatology is expanding, and needs a growing workforce across all professional areas
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Research and quality improvement are a challenge in an under-resourced clinical service; each are essential elements of continuing the expert and highly effective delivery and development of care
All children and young people across the UK deserve to access the same excellent standard of care, to be treated with the most effective medications and be supported by a complete, caring and experienced multidisciplinary team.
This report highlights where we’re getting it right, where we need to do better and suggests what needs to be done in future. The views of professionals working in these services and the patients and families receiving the care have informed this report and are a powerful ‘call to action’, giving direction to make change happen.