Joint care? New JIA quality of care review report published
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) carried out a review of the quality of care provided to children and young adults with juvenile idiopathic arthritis. Our founder, Debbie, was part of the study advisory group representing patient/parent/carers, working alongside healthcare professionals.
The report highlights the gap between what should happen in the ideal world and what is happening in the real world.
“In an ideal world young people with juvenile idiopathic arthritis (JIA) would present soon after the onset of symptoms to a paediatric rheumatologist who would see them outside school hours alongside ophthalmology and psychology support, with a seamless transition to adult services when deemed developmentally appropriate. In practice the pathway is more complex, so healthcare providers need to think about how they can smooth the journey to minimise delays in starting treatment and detrimental effects on patients’ education and mental health.” Foreword Dr Suzy Lishman CBE, NCEPOD Chair
The report has produced eight recommendations to help improve care, including quicker recognition of diagnosis, better and clearer referral pathways to see a paediatric rheumatologist, swifter initiation of treatment, more holistic care and developmentally appropriate care.
The eight recommendations are:
1. Raise awareness of juvenile idiopathic arthritis and its symptoms with the healthcare professionals.
2. Streamline and publicise local referral pathways with clear measurable timelines for patients with suspected JIA.
3. Provide timely access to appropriately trained therapists inc physiotherapy, occupational therapy, pain and psychology services.
4. Offer age-appropriate information about JIA and medications risks and benefits.
5. Provide training to the patient, age appropriate, and/or their parents/carers on how to administer subcutaneous injections.
6. Ensure timely access to intra-articular steroid injections by staff who have been trained to deliver age-appropriate care in units.
7. Provide a holistic, developmentally appropriate rheumatology services for patients.
8. Develop NICE guidance for the management of JIA.
IAUK will be working with healthcare providers to help them embed these recommendations into their ongoing care for JIA patients/families.
The full report, along with a summary, recommendations and other useful resources can be seen here.
