The first 5 months Jo Quirk Lead Nurse

Visiting hospitals within our Network Meeting with Matrons & Senior Nurses Introduction to the “NHS Standards (2016) Bible” Sitting in clinics Identifying keys areas of work Feedback from families

Key areas of work STAFFING A17(L3) Each Local Children’s Cardiology Centre must have an identified registered nurses with an interest & training in children’s & young peoples cardiology Identifying link Nurses on Wards, OPD, Community & Neonates Organising visits to the L1 Unit Starting to build communication links with CNS on the Wards & Neonatal Units

Improving communication Sent out to all wards via Matrons & Link Nurses Promoting the role of the CNS (for Nurses as well as families) Use of patient held folders Where & How to get advice/help

Education E4 (L3) Each Congenital Heart Network will have a formal annual training plan in place, which ensures on going education & professional development across the network for all health care professionals.. Annual study days for Nurses (Fetal, Paeds & Adults) “Top Tips for Caring for cardiac patients” (building on confidence & skills) CNS availability to provide education sessions at the Level 3 centres Link Nurse education day planned for Autumn 2018 Written Education & Training Strategy for first Network Board Meeting Nurses need to feel confident & competent

Feedback in clinics – Snapshot! Spoke to 26 families Aged from 4 month old to 14 yr old 18 out of 26 had had surgery - 16 at Leeds, 1 at Birmingham, 1 Italy 1 family waiting for surgery & finding this difficult.  Mostly very good experience at Leeds - issues raised: Parking was problem Cancelled twice as no beds x2 Went to Leeds for a sedated echo – All aware of the CNS service between appointments & find this very reassuring Small playroom was not conducive to recovery my child did not wake up til 8.30pm so struggled to get home on public transport!

Feedback in clinics – Snapshot! can’t drive M62 to Birmingham a nightmare  Local service ALL preferred to be seen locally: Outpatients service in Italy was “chaos…York is much calmer and well organised”  4 families had had open access to their local hospital.  2 families raised concerns about PRE -DIAGNOSIS/ACCESS to CHD service 4 month old baby - Known to have a minor problem at birth, but Dad very stressed about waiting for the appointment and getting information (small PFO & small VSD) Baby not diagnosed until 12 weeks of age (coarctation) despite seeing GP, admission to local ward and repeatedly asking for help.   Joint working Good communication between cardiac and other services for a patient with dilated cardiomyopathy who required other surgery. easier to park “saved my child’s life”

Observations from clinic Good child-friendly facilities & ethos Some clinics have limited condition specific information Different ways of working in terms of role of the PEC/Cardiologist/CNS Different IT systems are a frustration! Lots of enthusiasm to get it right!

Parent & Patient Engagement Work closely with Children's Heart Surgery Fund Lots of activity on Facebook! NHSE online survey Level 1 centre..?roll out to the level 3 later this year Parent & Patient representative group – First meeting planned 3rd July (Great response)

So what next? Continue to work with the L3 Centres to assist in meeting the Standards for Nursing Build on developing relationships with Nurses in the region Information for patients – availability in all clinics (PEC & joint clinics) Open to suggestions….to aim to be the BEST NETWORK!