Establishing a Paediatric Home Oxygen Forum An innovation and service provision change to ensure cohesive working across the West Midlands region for babies, Children and young people being discharged home on short or long term oxygen therapy. June Hartfield, RGN/RSCN Paediatric Respiratory & Cystic Fibrosis Nurse

Introduction: An idea generated from a regional stakeholder meeting in 2016 held by the oxygen supplier (Baywater Healthcare), during which it was recognised by the small number of paediatric nurses present that babies, children and young people were being overlooked due to the lack of knowledge within the oxygen supply service. Paediatric Respiratory Nurses, Children’s Community Nurses and Neonatal Outreach Nurses who are involved in planning discharge on oxygen, were invited to an initial meeting to discuss thoughts and establish a way forward to improve care. Initial meeting 10 participants Grown to around 25 members

Aims & Objectives To ensure cohesive working across the West Midlands Region for babies, children and young people being discharged home on short or long term oxygen therapy Establish a standardised competency document for parents/carers Work with oxygen suppliers to promote the needs of children who require home oxygen with regards to standards of care and equipment needs To enable comparable standards of care for adults and children Improve the ordering portal to reflect paediatric needs.

Initial Findings (from the first meeting) Diverse range of discharge planning being undertaken Very few areas have a formal weaning/review process for paediatric patients Oxyshop’s IHORM is not paediatric friendly Variable amount of parental/carer competency being formally assessed No standards of care for children on home oxygen (there are adult ones within our region) Variation in who orders oxygen for children and how this is monitored within the region 1 – some areas have formal sheets to follow, others nothing specific 2 – weaning is very varied with some areas just going by when someone feels it’s time! 3 – IHORM is the safety checklist that includes whether there are smokers in the home, places to keep the oxygen, but is very centered around adults and being self caring 4- competency is often done on the unit where the child is but not with anything in writing 5 – standards will help empower areas to follow guidance

Challenges moving forward We had support from the oxygen supplier to establish ourselves as a Paediatric Forum with it’s own section of the regional meetings that feed into the afternoon combined session including commissioners and adult colleagues.

Chosen first steps Establish a regional discharge checklist Empower parents by establishing a parental/carer competency framework Design and introduce a paediatric friendly IHORM Establish Standards of Care for Children requiring home oxygen 1 – aiming for quick fix to maintain group momentum 2 – demonstrating primary, secondary and tertiary care working together to produce frmework that works across areas 3 – make the safety checks relevant to families with young children, recognizing the unique issues i.e buggy’s 4 – the standards will lead to support when raising the issues surrounding children home on oxygen

Results Forum has grown to encompass 70 members from varying aspects of paediatric care, led by a Children’s Community Nurse, Paediatric Respiratory & CF Nurse based in secondary care and Lead Paediatric Respiratory Nurse based at a Tertiary centre. We meet four times per year. We meet as part of the regional meeting and have also presented at their annual stakeholder meeting.

Results 2 Produced & piloted parental competency document 5pages long and covers; assessing their child, resus, how to apply oxygen, how to trouble shoot Completed by the area discharging the child home and copied to community and other teams involved in the child’s care

Results 3 Produced and piloted discharge checklist Draft amendments to IHORM 1 – documents that child has medically agreed discharge, parents have completed competencies, home assessment has been completed, HOOF completed, discharge planning meeting 2 – still in draft phase and will have a long process to go through as it is a national document, but will enhance local care

Results 4 Draft Paediatric Oxygen Standards of Care

Our Aim Home oxygen is an important part of care offered to a small number of children, the work of this forum is creating equity of care for these patients across the West Midlands Region, identifying responsibilities and improving standards of care. Teach children self care!!!!

??? Questions ??? Thanks to Rachel & Sue the nurses who helped make this possible. A short but happy & Busy life