London Paediatric Severe Asthma Network - Improving Care for Children with Asthma

1. Launch of the London Paediatric Severe Asthma Network #AskAboutAsthma

3. Age-standardised mortality rates for asthma, ages 2001 - 2010 Wolfe, Lancet 2013;381:1224-1234 • Review of 195 deaths • Highlighted widespread inadequacies in care • Particularly in children risk of adverse outcomes poorly recognised

4. Reducing Risk Risk Factors for Asthma Attacks • Identify and modify risk factors • Determine which children should have a step up in treatment • Refer children who remained uncontrolled (despite the above) to the appropriate service Buelo, Thorax 2018:73(9);813-824

5. Problems with Current Model • Poorly defined care pathways / thresholds for onward referral • Referral to a “severe asthma” service • What is severe asthma? • Very little detail as to what service should be provided • In some areas there isn’t a clearly defined service (nationally) • The value of referring to a specialist team is unclear • Transition (severe asthma is a commissioned service for adults but not children)

6. National CQUIN 2016 - 17 • 2016-17: assessment of children and young people with problematic severe asthma • Dedicated MDT (Respiratory Paediatrician, CNS, physiotherapist and psychologist) • MDT assessment within 16 weeks • Data entered on national registry • Limited take up nationally • Not adopted as a national CQUIN beyond 2017 • Issues particular to London

7. NHSE (London Region) Specialised Commissioning • Recognition of the need to build upon existing work • Overarching aim to improve standards of care for children with severe asthma across London • London Paediatric Severe Asthma Network (LPSAN) established at the request of NHSE

8. Local CQUIN 2017 - 19 • In addition to the 12 weeks MDT assessment: • Establish a network model • Establish a network of care working alongside primary and secondary care • Clear information about who is responsible • Describe and develop care pathways • Establish a clinical network between specialist centres (LPSAN) • Share learning • Develop guidelines and protocols • Research and academic opportunities

9. Over 220,000 children have asthma. Children in London have higher than average mortality and morbidity when compared with similar cities. High numbers of emergencies: 12 deaths annually There are 2 million children and young people in London making up 25% of the population. 35% if you include young adults up to the age of 24 yrs. Neonatal & maternal deaths are reducing but remain higher than the European average PIC provision is at breaking point Out of region transfers in peak periods … Approx. 50% of GPs have training in CYP

10. The Scottish Office Department of Health, 1999 The Introductions of managed Clinical Networks within the NHS in Scotland Cited in Bringing Networks to Life – An RCPCH guide to implementing Clinical Networks 2012 A networked solution “linked groups of professional and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing and professional (and organisational) boundaries, to ensure equitable provision of high quality, clinically effective services”

11. The right framework could ensure that children are cared for in the most appropriate environment, with a networked model of care to support this on a long term basis Home and Primary/ community care Small District General Large Teaching/DGH Hospitals Tertiary Provider CCG and local government responsibility CCG commissioned Currently mixed commissioning picture but could move to more regionalised arrangements Funded/commissioned by NHS England specialised services Patient Transport (PT) PT PT (including repatriation) Clear entry and exit criteria PCC network Critical Care L1 (general paediatric care) Critical Care L2 (HDU) Critical Care L2 and L3 (PICU) ECMO Inter- dependencies Inter- dependencies Inter- dependencies Patient Other dependent services (i.e. NICU) Surgery network General Paediatric Surgery Specialised Surgery Specialist Centre

12. Indicators of success and how these are measured should be agreed at the start of the network development process • Measures of Success: • Length of Stay • - Out of Area Placement • Measures of Success: • Ventilation Rates • Mortality • Morbidity • Patient Experience • Measures of Success: • Demand managed within capacity • - Reduced elective waiting times • Measures of Success: • Access Criteria • Clinical Pathways • Benchmarked outcomes

13. Opportunities to develop overarching Children’s Strategic Networks to ensure alignment between networks and offer sustainability opportunities North & South London Paediatric ODNs Long term funding options are still being investigated, but initial work on building foundations and network alignment can progress

15. Potential Benefits of a Network Model • Severe asthma centre as part of a local network • Well defined pathways of care • Severe asthma teams undertake full MDT assessment • Act as gatekeepers for expensive drugs and interventions (for example initiation of treatments such as omalizumab) • Joint clinical MDTs between severe asthma centre and other local healthcare providers • Patients repatriated to local centre once issues contributing to poor control have been addressed and /or they have been established on an appropriate treatment • Network between severe centres • Ensuring consistent care • Sharing difficult clinical cases • Research collaboration

16. Progress to Date • Regular meetings between leads in each centre, HLP and NHSE • Terms of reference drafted • Purpose • Developing consensus guidelines • Developing educational resources • Contributing to disease registers • Fostering collaborative research

17. Work in Progress • Involve wider MDT • Define role within local networks, working with primary and secondary care • Ensuring consistency of care across London (MDT assessment as set out in CQUIN) • Developing supra-specialist services in a smaller number of centres • National adoption….

19. Research • Pan London Academic Health Sciences Centres (UCLP, Imperial, KHP) identified Paediatric research as a priority • Supporting paediatric asthma stream • Putting together a grant looking at resolution of asthma attacks • Build on existing research collaborations

20. Who Should be Referred? All children: • Under consideration for other biological agent such as omalizumab, other monoclonal antibody • Prescribed maintenance corticosteroids • Admitted to PICU Consider referral • Children with poor control despite high dose ICS plus additional controller(s) • Other considerations: • Diagnostic uncertainty • Complex psychosocial / safeguarding issues • Dysfunctional breathing • Enrolment in clinical studies

21. Assessment Summary The Lancet Respiratory Medicine 2017 5, 844-846DOI: (10.1016/S2213-2600(17)30379-X)

22. Thank you