Severe Asthma Network - Healthy London

Severe Asthma Network - Healthy London

Severe Asthma Network Dr Atul Gupta, MBBS, DM, DNB, MRCPCH, MD(Res) Consultant in Paediatric Respiratory Medicine, Kings College Hospital Senior Lecturer, Kings College London Agestandardised mortality rates for asthma, ages 2001 - 2010

Wolfe, Lancet 2013;381:1224-1234 National Review of asthma deaths RCP 2014 Review of 195 deaths Highlighted

widespread inadequacies in care Slipping through the net Why patients with difficult/severe asthma arent getting the care they deserve Interviewed 17 severe asthma clinicians and nurses from across the UK Surveying 72 primary and secondary healthcare professionals Slipping through the net: the reality facing patients with difficult and

severe asthma - highlights concerns about the current state of difficult/severe asthma care in the UK. Ref:AsthmaUK Slipping through the net: Key recommendations Determine the size of the Severe asthma population Clear definitions of difficult & severe asthma

Clear referral criteria between primary, secondary & tertiary Reduce Variations & Improve standards across tertiary care NHSE & clinicians develop, publish and promote evidence-based strategies for the management of difficult and severe asthma. Link & share patient care records across settings Severe Asthma Registry Digital opportunities Ref:AsthmaUK Market Research

GPs saw an average of 170 patients with asthma in the last 12 months, of whom, 27 (16%) needed more than 4 courses of OCS Paediatricians saw an average of 37 patients needing treatment with 4 or more courses of oral corticosteroids in the last 12 months Almost 6/10 patients needing 4+ courses OCS are not referred on by general paediatricians Commissioned by Novartis Okay, which patients are we talking about ?

Proposed Referral Guidelines to MDT Severe Asthma Services Despite high dose treatment (high dose ICS plus long acting 2 agonist) Recurrent severe exacerbations in the past year (3 per year requiring hospital admission or high dose OCS for 3 days) Children with poor control /Persistent chronic symptoms (most days for >3 months; Asthma Control Test (ACT) or Childhood Asthma Control Test (C-ACT) score of <20) Persistent airflow obstruction (FEV1 <80% post bronchodilator) Prescribed maintenance oral corticosteroids for 4 weeks

Admitted to PICU in last 2 years Other considerations: Diagnostic uncertainty Complex psychosocial / safeguarding issues Dysfunctional breathing

Enrolment in clinical studies Severe Asthma Poorly controlled Asthma Severe Asthma Poorly controlled Asthma Wrong diagnosis

Severe Asthma Poorly controlled Asthma Non-adherent Wrong diagnosis Severe Asthma

Wrong diagnosis Poorly controlled Asthma Non-adherent Symptoms out of proportion Severe Asthma

Wrong diagnosis Poorly controlled Asthma Non-adherent Symptoms out of proportion Dysfunctional breathing

And in Specialised Commissioning, the Pan London Severe Paediatric Asthma Network was established in 2017 RLH GOSH RBH GSTT SGH

KCH Proposed new KHP CYP Severe Asthma Service RLH GOSH RBH GSTT SGH

KCH KHP CYP Severe Asthma Service Difficult Asthma Clinic PICU ELCH Allergy Clinic

North London centres Local GPs ED ELCH Asthma Clinic DGH Difficult

Asthma Service North networks ELCH ELCH PICU Kings

KHP CYP Severe Asthma Service Difficult Asthma Service at Kings (Lead centre) General Respiratory Clinic

Kings DGH SEL & SE network Allergy Clinic Local GPs ED Kings Propsed CYP Severe

Asthma Service KHP New CYPKHP Severe Asthma Service The Difficult Asthma services at ELCH and Kings to form a single KHP severe asthma service Kings (Denmark hill) site to be the lead centre Regular cross-site Severe Asthma MDT meeting Reducing duplication Streamline severe asthma services

Patients on BTS step 4 & 5 of the treatment should be discussed in the KHP MDT The gate-keeping for biologic therapy by Kings. CYP eligible for such treatment should have had a prior rigorous systematic assessment in the DA clinic to ensure that they have severe therapy resistant asthma (STRA) Severe Asthma Network The DA Clinic at Kings has evolved over 20 years Experienced MDT service Referrals come from SEL & SE England through a clinical network formed with local hospitals in Pembury, Eastbourne, Medway, Bromley, East Kent, etc

Catchment in SEL and SE England: RLH GOSH RBH GSTT SGH KCH

Summary: Practical Approach to Difficult / Severe Asthma Proposed referral criteria Referrals to Paediatrician Referrals / under the care of a specialist paediatrician BTS/SIGN recommends that children on medium ICS dose should be under the care of a specialist paediatrician for the duration of the treatment. >2 exab requiring steroids / ED attendance Proposed Referral Guidelines to Severe Asthma

Services Despite high dose treatment (high dose ICS plus long acting 2 agonist) Recurrent severe exacerbations in the past year (3 per year requiring hospital admission or high dose OCS for 3 days) Children with poor control /Persistent chronic symptoms (most days for >3 months; Asthma Control Test (ACT) or Childhood Asthma Control Test (C-ACT) score of <20) Persistent airflow obstruction (FEV1 <80% post bronchodilator) Prescribed maintenance oral corticosteroids for 4 weeks Admitted to PICU in last 2 years Other considerations:

Diagnostic uncertainty Complex psychosocial / safeguarding issues Dysfunctional breathing Enrolment in clinical studies Problems / challenges with the current severe

asthma network model Young People in UK are more likely to die of asthma (Nuffield report) Fragmented care (regulation 28 reports) Widespread inadequacies in the care (NRAD) Deeply distressing for people with difficult/severe asthma (Asthma UK) Poorly defined care pathways / thresholds for onward referral (Asthma UK) Significant variation in the delivery of care. (Asthma UK) As compared to the adults, not a specialised commissioning for severe asthma As compared to Paed Diabetes, not a Payment by results / best practice tariff Logistical and financial support Formalising network

Taking Forward the Severe Asthma Network Build upon existing networks and collaborations NHS 10 year plan HLP support Joint MDTs SEL Asthma Network Meeting Annual Shared care event Peer review

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