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

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

4. Reducing Risk Identify and modify risk factors
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);

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
: 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
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: 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. 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”
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

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
Improved access to and egress to/from services at the right time
Improved operating consistency
Increased productivity
Improved outcomes
Measures of Success:
Demand managed within capacity
- Reduced elective waiting times
Measures of Success:
Access Criteria
Clinical Pathways
Benchmarked outcomes

13. North & South London Paediatric ODNs
Opportunities to develop overarching Children’s Strategic Networks to ensure alignment between networks and offer sustainability opportunities
Children’s Networks
PCC
ODN
Surgery
Asthma
Oncology
CHD Networks
Neuro
NCC
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, DOI: ( /S (17)30379-X)

22. Thank you