03 December 2019
With the launch of our last State of Play report focusing on paediatric and adolescent rheumatology, Public Affairs Manager Jack Feinmann looks at the challenges facing our paediatric and adolescent members.
Every child and young person has unique medical, psychosocial and educational/vocational needs from birth to adulthood. When a child or young person develops a rheumatic or musculoskeletal condition, their needs are looked at in a variety of settings, in hospital and out in communities, and importantly requires high quality specialist multidisciplinary healthcare.
This specialist care, delivered effectively, does a number of things:
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avoids delayed diagnosis
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minimises lifelong damage
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brings conditions and subsequent ‘flare-ups’ under control as quickly as possible
Furthermore, it limits the impact of the condition on children and young people’s social and physical development, schooling and how they live the rest of their lives, which is why it’s so important that these paediatric and adolescent teams be fully staffed, fully resourced and have all the expertise needed to provide that crucial support.
What have we done?
Our report provides a comprehensive study into this area of rheumatology, and the key challenges that the workforce face and unfortunately paint a poor picture of how this important specialty is often overlooked. We spoke to all members of the paediatric and adolescent rheumatology multidisciplinary team (MDT), and, crucially, we spoke to parents, children and young people with the help of the Children’s Chronic Arthritis Association (CCAA) incorporating JIA Matters, to get the best overview.
What did the report find?
Worryingly, our findings tell us that paediatric and adolescent rheumatology is woefully under-resourced, overlooked by NHS decision-makers and appropriate care is becoming increasingly harder to access. Our members are stretched like never before, in many cases lacking necessary infrastructure and resources as they try to meet the growing demands of delivering follow-ups with patients, providing help with transitional care or signposting to psychological support. The biggest cause of this? Not enough staff to deal with excessive workload! 88% of health professionals report increases in workload, but without needed increases in staff.
Almost half of all respondents to the survey report that there are vacancies within their team. A third (31%) stated their service has been impacted by retirement of staff. We need to task the NHS to make succession planning a priority and avoid unplanned increases in workloads. Throughout the UK, services lack local multidisciplinary teams with specialist expertise, and as there are only 14 dedicated paediatric and adolescent rheumatology centres in the UK, families either have to travel long distances to receive appropriate specialist care or receive care from non-specialists locally, which isn’t always the best solution.
So what can we do?
Access to care is a rheumatology-wide issue, but with the current level of care being unsustainable in paediatric and adolescent rheumatology, we must challenge commissioners, the government and NHS to support regional clinical networks and fund outreach clinics to ease the current stretch of services.
Another striking issue that the report highlights is that patients having access to a psychologist in paediatric and adolescent rheumatology is, unfortunately, a rarity. Very few services appear to have a psychologist embedded in their team, which has long-lasting and damaging consequences for the patient.
Dedicated time for clinical research is also a luxury for most health professionals, and in particular, 84% of occupational therapist, physiotherapist and nurse respondents reported that they had no time or minimal time for clinical research. These two areas are essential in helping patients deal with their condition and furthering in the development of the specialty.
It comes as no surprise that the findings show similar themes in our Specialist Nursing report, really illustrating that rheumatology services are overstretched, MDTs are not fully recruited for and patient care is suffering as a result.
What's BSR already doing to help?
Our focus on paediatric and adolescent rheumatology recently hit a milestone in Wales, with local commissioners funding a dedicated, full-time specialist service. We want to do this type of campaigning more often. We also host a Paediatric and Adolescent Rheumatology Conference, providing a unique forum that brings together paediatric and adolescent MDTs, and run other education and training events.
Much more is to be done to improve patient care and strengthen the paediatric and adolescent rheumatology workforce, and we’ll be using the findings and recommendations in this report to continue our campaign for change. If you want to find out more about how we can campaign on your behalf, please get in touch on policy@rheumatology.org.uk.
Read the report