1. Introduction to Congenital Heart Disease Service
Yorkshire and Humber Congenital Heart Disease Network
Introduction to Congenital Heart Disease Service
Jo Quirk
Lead Nurse
Congenital Cardiac Network

2. Yorkshire and Humber Congenital Cardiac
Network
Yorkshire and Humber Congenital Cardiac
Population > 5.5 million
Incidence ~ CHD 8:1000 live births

3. Setting the scene Patient numbers The “Team”
Insight into needs of Congenital patients & their families
How WE can provide high standard of care for this patient group

4. ACHD service Established at LTHT in 2005 due to:
Appointment of Dr K English as Lead Clinician
Increased numbers moving from Paediatrics to adult service
Seen as a “separate” service to acquired heart disease

5. Outreach service:
Sheffield clinic established in 2006, jointly with Dr O’ Toole, Consultant Cardiologist
Hull clinic to commence in Spring 2018, jointly with Dr Balerdi, Consultant Cardiologist
Clinics at LTHT in 2005/6 – twice a week, now every day, all day due to increased workload

6. Why the service is expanding
Huge spectrum of CHD
Recent advances in diagnosis/tx of CHD
Early diagnosis
Antenatal diagnosis, early intervention
Improved survival
Despite this treatment may be
palliative
By 2025 there will be more adults
than children living with CHD
Heterogenicity of group, underlying abnormalities despite intervention. From simple defects to complex anatomy

7. Patient population Aged 16 years to 90 yrs!
10% have a learning disability – associated with Chromosomal abnormalities Trisomy21, 22q11 deletion, Williams , Turners
Currently 6000 patients registered on the database at LTHT under the care of the congenital team & 1000 patients at Sheffield

8. Activity 100-120 ACHD operations – Primary & redo sternotomy
Approx 150 intervention – ASD closure, Pulmonary valves, stent of Pulmonary arteries, stent to re-coarctation (many procedures reducing the need for open heart surgery)

9. The Team 5 Adult Congenital Cardiologists
2 Interventional cardiologists
2 EP cardiologists
4 Congenital surgeons
4 ACHD Specialist Nurses
6 Sonographers
1 Specialist physiotherapist
2 Psychologists & 1 counsellor
Jo can we condense this slide

10. Why the Team has expanded…
Children grow up! Increasing numbers
Patients lost to follow up…have been found!
Psycho-social aspects of care are now seen as important
National review of Congenital Heart services:
meeting the NHS England standards (2016)

11. Types of patients seen in the clinic
Adults with new diagnosis
Adults - surgical repairs in childhood – now surveillance
requiring redo surgery / intervention
Medical management for:
Arrhythmia
heart failure due to un-operated anatomy or palliated treatments

12. Types of Patients seen on the Wards
Endocarditis – 6 week treatment
Heart Failure management
Change of medication due to arrhythmia
High risk pregnancy…. Need for close monitoring
Surgery
Intervention
CHEST PAIN!

13. Empowering Patients.. Use of technology: AliveCor devices FitBits
Home test INR machines (Coaguchek)
Medical information on phones
Copy of ECG
Up to date letters

14. Website & Facebook www.leedscongenitalhearts.com
Welcome to Leeds Congenital Hearts
We're experts in fetal, child, teen and adult treatment supporting over 13,000 people

15. Support for patients Children’s Heart Surgery Fund – Facebook
Somerville Foundation
Pulmonary Hypertension Fit Bit Walking Group!
Telephone advice line & contact with ACHD Nurse Specialists
Psychology/Counselling service

16. Nursing issues Younger cohort of patients can be challenging
Overprotective families!
Dealing with chronic illness – psychological impact- “events”
Learning disability – capacity assessment, reasonable adjustments
Understanding what's “normal” for these patients such as level of cyanosis, symptoms

17. Top Tips for Caring for caring for Congenital Patients
Find out daily “normal” parameters e.g oxygen saturations
Blood pressure right arm more accurate
( previous surgery)
Use of IV filters for cyanotic patients- R-L shunts
Ask for any previous history/information they may carry – Hand held records/mobile phone
If LTHT – local database “4D” has all the clinic letters, previous ECHO results etc
PPM – specialist nurses log all contacts (phone/ward)

18. ACHD Team
Always happy to be contacted for advice, access to previous information & support for patients, families & nurses
ACHD Nurses Tel
Office hours Mon-Fri 8-4pm
ACHD Consultant on call via secretary or switchboard

19. Future… Very interesting speciality…always learning something new!
Need for more educational opportunities to enable Nurses to feel confident
More joint work with Palliative care/Heart failure services
More patients coming your way!

20. Thank you for listening
Yorkshire and Humber Congenital Heart Disease Network
Thank you for listening
Jo Quirk, Lead Nurse
Congenital Cardiac Network
Tel