Leeds cardiac unit & discharge planning Hannah Saven Ward 51 - Sister

Leeds Congenital Heart Unit Supra regional service for Yorkshire and the Humber (covering a population of 5.3 million) Outpatient clinics in Leeds and 19 DGH’s Ward, HDU and PICU care Team of Specialist Cardiac Nurses Surgical procedures Interventional and diagnostic catheter procedures MRI/CT scanning Large MDT

Congenital Heart Figures at LGI 2017 -18 Surgical Catheter – Intervention Catheter – Diagnostic Adult 121 192 81 Paediatrics 343 336 126 Total 464 528 207 2016-17 Surgical Catheter – Intervention Catheter – Diagnostic Adult 101 219 69 Paediatrics 337 262 98 Total 438 481 167

Ward L51 Ward manager – Debbie Smith (Band 7) 8 Sisters (Band 6) – 2 currently on Mat leave 24 staff nurses (7 new starters) x2 trainee Nursing Associates Trainee Clinical Support Worker Clinical support worker Ward clerk x2 Hospital Play Specialists

Discharge after a catheter Patients who have a diagnostic catheter often go home the same day, and keep their usual outpatient appointment Patients who have had an interventional catheter, where something is ballooned, coil occluded or stented, stay overnight. The following morning, they will have an echo +/- and CXR prior to discharge. They will be seen in outpatients with 2 weeks

Discharge after surgery Most patients go home on day 5 after surgery, if the surgery is more complex, then the length of stay is often longer All families receive an advice after surgery leaflet, which answers questions about: wound care, immunisations, back to school etc A community nurse referral is often made for children who require a drain stitch removing. This is completed using our standardised referral form Some children require NG feeding post surgery, these children are routinely transferred back to their local hospital for further training and community set up

Discharge on Warfarin Mechanical valves, Fontan Approx 130 patients on Warfarin, 100 use home testing Established on Warfarin in hospital, here in Leeds, families receive education from, our specialist pharmacist, CCNS and ward staff Suitable patients are trained to ‘home-test’ Others are referred to local hospital for testing Referral is made to Warfarin clinic for dosing Patients referred to local Paediatrician

Discharge - ‘high risk’ All patients on a single ventricle pathway, between first and second stage surgery. (i.e. Norwood's/Damus). All patients reliant on Ductal Stent or BT shunt for pulmonary blood flow. Patients on a single ventricle pathway who are un-operated on discharge.

Aim of the ‘high risk’ clinic Regular, close monitoring of complex patients in order to reduce morbidity/mortality and highlight any parental concerns Continuity of care, named consultant Timely planning of interventions/investigation’s Ensure all patients receive local follow up Specialist advice/support to ensure parents are well informed about child’s cardiac diagnosis and prognosis

Discharge Checklist Referral to local paediatrician Referral to community nurses, weekly O2 saturations and weight RSV prophylaxis… All high risk patients fit criteria Saturation monitors (Norwood's/Damus initially) Open access to local paediatric ward/assessment unit Offer BLS training to parents/carers

Discharge documentation/advice Condition specific written information (including any information re: procedure i.e. ductal stent, BT shunt and risks of dehydration) Advice after surgery information. Parent held documentation:- Cardiac condition Operation/procedure Acceptable Saturations Record of Sats and weight

Local Hospital children’s ward - use open access T. ‘Red flags’ Who to contact and when: Advised to contact with concerns and aim for same day review where required. Consistently Irritable and difficult to console (more than normal) Not taking feeds /diarrhoea/vomiting (more than normal) Change in colour (Blue, grey, pale) Decreased oxygen levels <75% (good trace, two limbs, two minutes) Sweating, particularly with feeds (more than normal) Change in breathing pattern (too fast/slow/hard) Increased sleepiness Fever > 38°C Cough, wheeze, congestion Poor weight gain NON-EMERGENCIES Cardiac Nurse Specialists T. 0113 3925467 Ward 51 T. 0113 3927451 Community Nurse T. Local Hospital children’s ward - use open access T. EMERGENCY 999 Nearest Hospital Discussion with on call Cardiologist in Leeds

‘High risk’ care Patients seen in clinic in Leeds every 2 – 4 weeks Review - ECHO, O2 Saturations, Weight, general cardiology review Named consultant/on call cardiologist available for advice/urgent review where required Liaise with local paediatricians regarding follow up and treatment plan

What we want from you Regular local paediatric follow up Support in the community for children and families Regular assessments and saturation monitoring in the community Liaison with us in Leeds, contact us with any concerns or questions about a patient

What would you like from us? What don’t we do well? What existing area’s can we improve? What do we do well?

Thank you Any questions?

Our Contacts Hannah Saven 0113 3927551 hannah.saven@nhs.net www.leedscongenitalhearts.com