Paediatric Rheumatology

Providers should strive to ensure that all children and young people have equitable access to timely paediatric rheumatology care. Actions: a. Paediatric rheumatology care providers should collect referral data capturing the time from symptom onset to first paediatric rheumatology appointment. b. Paediatric rheumatology care providers should collect relevant patient and clinician derived outcomes and experience data to inform and improve care pathways and outcomes. c. Co-development of paediatric rheumatology primary care advice and guidance templates should be undertaken to support timely and direct primary care referrals. Services should ensure that the guidance is accessible through all platforms commonly consulted by primary care teams.

Providers should strive to ensure that all paediatric rheumatology patients have equitable and timely access to multidisciplinary team (MDT) care, delivered close to home and focused on patient experience and outcomes. Actions: a. Paediatric rheumatology care should be delivered as close to home as possible, through Managed Clinical Networks, with consistent and formalised shared care arrangements and guidelines. b. Hub MDTs should identify a network clinical lead, tasked with identifying and reducing network-wide inequities in timely access to paediatric rheumatology MDT care. c. Network leads should work with commissioners, acute healthcare providers, community MSK services, primary care, family hubs and relevant patient organisations to ensure care is co-ordinated and delivered by the right person, in the right place, at the right time. d. Spoke hospital paediatric rheumatology care providers should have consistent and timely access to hub MDT support, ensuring uniformity across networks, and improved recognition and governance at local, regional and national levels. e. National and monitored MDT workforce standards should be developed in response to unwarranted variation in MDT staff to outpatient appointment ratios. f. Paediatric rheumatology teams should have clearly defined support from resident doctors to support consultant workloads and ensure timely access to care. g. Paediatric rheumatology MDT professionals should have access to specialist paediatric rheumatology training and career progression opportunities to ensure a sustainable and confident future workforce.

Development and commissioning of data-driven and co-ordinated multiagency care pathways for CYP with inflammatory paediatric rheumatology diagnoses should be undertaken. This should help to improve timely access to definitive care delivered in developmentally appropriate spaces as close to home as possible. Actions: a. Regions/systems should commission regional pathways for paediatric rheumatology care, led by tertiary centres with MDT support from secondary care. b. Paediatric rheumatology teams should regularly review network-wide prescribing data, identifying opportunities to reduce unwarranted variation in timely access to medicines and medicine expenditure. c. Hub teams should ensure that medicines are administered as close to home as possible. d. Hub centres should review and reduce variation in timely access to uveitis care across regional networks, adopting a one-stop-shop approach where possible (same day rheumatology/ophthalmology) and working closely with ophthalmology systems to improve uveitis screening and treatment pathways. e. The 2015 Clinical Commissioning Policy Statement for JIA (E03/X/04) should be revised to ensure equitable and evidence-based access to commissioned medications for JIA. f. Paediatric rheumatology care providers should agree a life course care pathway for JIA. g. Paediatric rheumatology care providers should expand the use of PIFU pathways, with relevant safeguarding in place, for long-term conditions and should improve access to follow-up care for inflammatory patients. Future work: • GIRFT plans to produce an inflammatory arthritis pathway. • NHS England will be updating the NHS England Specialised Paediatric Rheumatology service specification, outlining the standards for specialised paediatric rheumatology services, in 2026/27.This will include revision of the Paediatric Rheumatology Service Specification Quality Dashboard (SSQD).

Development and commissioning of data-driven and co-ordinated multi-agency care pathways for CYP with painful non-inflammatory presentations should be undertaken. Pathways should be designed to optimise care close to home and reduce pressure on paediatric rheumatology hub centres. Actions: a. Regions/systems should commission regional pathways for paediatric rheumatology care, led by tertiary centres with MDT support from secondary care. b. Nationally agreed community MSK care pathways should be commissioned and embedded for non-inflammatory paediatric rheumatology patients, ensuring CYP under 16 years have access to paediatric services. c. Paediatric rheumatology teams should expand the use of PIFU pathways for non-inflammatory MSK presentations to reduce clinic pressures and improve access to follow-up care for inflammatory patients. Future work: • GIRFT plans to produce a non-inflammatory conditions pathway. • NHS England will be updating the NHS England Specialised Paediatric Rheumatology service specification, outlining the standards for specialised paediatric rheumatology services, in 2026/27.

Paediatric rheumatology networks should strive to ensure equitable access to developmentally appropriate healthcare (DAH) for all young people with rheumatological conditions until established adulthood. This should be achieved through standardised, person-centred DAH delivery criteria and close and effective working relationships between paediatric and adult rheumatology healthcare teams. Actions: a. Paediatric rheumatology networks should appoint a regional adolescent lead, tasked with ensuring equitable access to DAH and seamless transition to adult services at the right time and right place for each young person. b. Paediatric rheumatology networks should implement clear and auditable regional guidelines for local transition processes to ensure consistent practice across all centres aligned to the NHS 10-Year Health Plan. c. Paediatric rheumatology networks should collaborate with relevant patient organisations and neighbourhood MDTs for CYP to produce developmentally appropriate health coaching, youth-led peer support approaches and/or social prescribing.

The impact of health inequalities on access to and outcomes of care should be reduced through the adoption of a co-ordinated, system-wide approach, supported by shared learning at local, regional and national level. Actions: a. Paediatric rheumatology networks should identify local areas of concern through a regional review of health inequalities, for example using was not brought (WNB) rates and index of multiple deprivation (IMD) deciles. b. Paediatric rheumatology commissioners and care providers should ensure that strategies are in place to mitigate the impact of health inequalities from point of referral onwards. c. Paediatric rheumatology care providers should collaborate with patients and families to co-produce patient-centred improvements to clinical care. d. Paediatric rheumatology care providers should collaborate with relevant patient support organisations and local Family Hubs (as outlined in NHS 10-Year Health Plan) to enable improved self-management for vulnerable CYP and families.

The collection and reporting of performance and prescribing data should be standardised to inform data-driven improvement at local, regional and national levels. Actions: a. Inpatient admissions, day cases and outpatient paediatric rheumatology attendances at all hub and spoke centres should be recorded using the paediatric rheumatology treatment function code (TFC) 262. b. As a minimum, all paediatric rheumatology providers should be employing ICD-10 to report the primary diagnosis for all outpatient encounters within the Commissioning Data Set (CDS). To enable this, diagnostic information needs to be captured within hospital EPRs in a structured way, supporting automatic translation into ICD-10, the national standard classification mandated for reporting outpatient diagnostic codes to the CDS. c. Paediatric rheumatology care providers should aim to include factors complicating care delivery within the CDS, such as relevant comorbidities, learning disabilities and mental health disorders, as this would constitute excellent practice. d. Paediatric rheumatology care providers should explore changes to community waiting times reporting to improve monitoring of performance, pressures and operational issues in paediatric rheumatology. In the short term, this may involve guidance on reporting within existing service lines (e.g. CYP physiotherapies) in the monthly Community Health Services (CHS) Situation Report. In the longer term, more detailed pathway reporting may be enabled through Faster Data Flows. e. Trust teams should develop digital systems enabling automated reporting of outpatient activity to relevant national datasets, such as HES.

Analysis of standardised performance and prescribing data should be undertaken to support co-ordinated and national data-driven improvement across all centres providing paediatric rheumatology care. Actions: a. Trust teams should improve the consistency of medicines data reporting to national datasets such as Rx-info, Blueteq and Patient Level Information and Costing Systems (PLICS). b. Trust teams should build a paediatric rheumatology community of practice with regular opportunities for care providers across the MDT to meet, offer mutual support, and drive innovation together. c. A sustainable system should be implemented to enable national analysis of a limited specialty-specific dataset including data items that, although not currently collected within existing NHS datasets, are key to informing the quality of paediatric rheumatology care. Future work: • GIRFT is considering the development of a Model Health System compartment for paediatric rheumatology to inform benchmarking against key performance indicators and updated pathways of care.