Congenital Heart Disease
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Congenital heart disease (CHD) is present from birth. Adult congenital heart disease (ACHD) is defined as people aged 16yrs and above living with a heart defect that they were born with. It is one of the most common birth defects in the UK, affecting around 8 in every 1,000 babies born. With advances in early diagnosis, paediatric cardiac surgery, medical and nursing care, over 90% of babies born with CHD survive to adulthood. There are now more adult patients with CHD than child patients and the number of adult patients continues to grow.
In 2011, the UK census estimated the population for the North West of England, North Wales and Isle of Man to approximately 7 million people. The estimated prevalence of adults living with CHD is thought to be more than 4 per 1000 adults, so the rough estimate of patients living with ACHD in the North West is in the region of 25,000 patients.
The number of patients with complex ACHD is increasing with 10% of the ACHD population now defined as being within this group. Congenital heart disease may remain undetected during childhood and therefore there is a group of patients who will present for the first time as an adult.
Most patients with ACHD will require easy access to expert advice and management throughout their life. They will require regular monitoring and further investigations. They may require further catheter procedures, cardiac surgery, electrical ablation and pacing procedures. An ever-increasing number of patients require advanced heart failure management, palliative care and sometimes transplantation.
Care for congenital patients
Changes have been made to the way care is delivered across the North West of England, North Wales and Isle of Man for people living with congenital heart disease.
The ACHD service is delivered by the Liverpool Partnership (Alder Hey, Royal Liverpool University Hospital, Liverpool Women’s hospital and Liverpool Heart and Chest Hospital). Liverpool Heart and Chest Hospital is where all adult congenital surgery and interventional procedures are performed. In-patient care is provided at the Liverpool Heart and Chest Hospital, the Royal Liverpool University Hospital, and Manchester Royal Infirmary. The ACHD team is based at Liverpool to ensure that consultant led care can be provided 24-7.
Outpatient services for patients with ACHD are also ran from Manchester Royal Infirmary, Blackpool Victoria Hospital and Wrexham Maelor Hospital. The ACHD service is part of the larger, all age, North West Congenital Cardiac Service which encompasses the care of paediatric cardiology patients as well.
All patients with ACHD, whether simple or more complex, benefit from expert care throughout their lives and our aim is to deliver this as close to home as possible. How often you will need to attend for your hospital appointments depends on your current condition. Your medical team will give you more information about your heart and make a management plan with you, including how often you need to go to the ACHD clinics.
Going to your appointment
It is very important that you go to your planned appointments, even when you feel well because there could be changes to your heart that you may not be aware of. If you haven't received an appointment for a follow up at the ACHD clinic, please contact your consultant's secretary to help arrange your next appointment, numbers can be found at the bottom of this page.
The ACHD team
Our North West ACHD team includes:
- 5 full time ACHD Consultants who work across the region to deliver care in Liverpool, Manchester, Blackpool and Wrexham
- 4 Consultants in the North West Congenital Cardiac Network with a specialist interest in ACHD
- 4 Congenital Cardiac Surgeons
- 4 Congenital Interventional Cardiologists for neonatal, paediatric and adult patients
- 6 Clinical Nurse Specialists
- 3 ACHD Cardiac Physiologists
- 3 Part Time Clinical Psychologists
- 1 MDT Coordinator
- 1 MDT Clerical Support
- 3 Secretaries
There are close clinical and academic ties between the ACHD and Alder Hey’s Paediatric Cardiology Department, providing seamless care from childhood to adulthood.
ACHD Consultant Team
- Dr Reza Ashrafi - Interest in Electrophysiology and Devices and Obstetric Cardiology
- Dr Damien Cullington (Clinical Lead) - Interest in Heart Failure and Obstetric Cardiology
- Dr Jaspal Dua - Interest in Transition and Echocardiography
- Dr Petra Jenkins - Interest in Pulmonary Hypertension and Mucopolysaccharidoses
- Dr Vasileios Papaioannou - Interest in Pulmonary Hypertension
- Dr James Redfern - Clinical Fellow
ACHD Surgical Team
- Mr Rafael Guerrero - Clinical Director of Congenital Cardiac Surgery
- Mr Ram Dhannapuneni - Consultant Congenital Cardiac Surgeon
- Mr Attilio Lotto - Consultant Congenital Cardiac Surgeon and Honorary Professor of Congenital Cardiac Surgery
- Mr Ramesh Kutty - Consultant Cardiac Surgeon starting 1st May 2020
ACHD Cardiac Catheter Intervention Team
- Dr Suneil Aggarwal - Consultant Cardiologist ACHD Intervention and TAVI
- Dr Salim Jivanji – Consultant Interventional ACHD Intervention
- Dr Sok Leng Kang - Consultant Interventional ACHD Intervention
- Dr Arul Narayanan - Consultant Interventional ACHD Intervention
Clinical Nurse Specialist (CNS) Team
- Fiona Andrews
- Lorraine English
- Linda Griffiths (Lead Nurse)
- Anna Harrison
- Sharon Hughes
- Julie Ollerhead
Specialist ACHD Echocardiographers/Physiologists
- Liam Corbett
- Lisa Platt
- Stephen Quadir (Physiologist Lead)
Patient education and empowerment are important components of the ACHD service. The clinical nurse practitioners coordinate education and patient involvement.
Advice and education cover lifestyle issues such as contraception, insurance, employment and sport. Patients and their families also find additional support from patient groups such as The Somerville Foundation or the British Heart Foundation.
Transition CHD service
The process of transitioning from paediatric to ACHD is started from the 12th birthday taking into account individual specific circumstances and special needs.
Young people growing up with a congenital heart problem in the North West of England, North Wales and Isle of Man (up to age 18 years) are cared for by the Specialist Paediatric Cardiology Teams based at Alder Hey and Manchester Children’s Hospital. Young people with simple and moderate congenital heart disease will have their care transferred from the Paediatric Cardiologist to an ACHD Cardiologist based at one of the following hospitals:
- Liverpool Heart and Chest Hospital
- Manchester Royal Infirmary
- Blackpool Victoria Hospital
- Wrexham Maelor Hospital
This will ensure smooth and effective transition of patients to appropriate facilities, minimising loss of patients to follow up during the process. All “Lost to follow up” rates will be recorded, monitored and discussed by the North West CHD Network.
Family planning is important to many of our ACHD patients. Find out more about different contraception, their effectiveness and any side effects they have when combined with other contraceptives or other medication.
We provide obstetric and gynaecological care for patients with ACHD. This is provided jointly with the high-risk maternity team from St Mary’s Hospital in Manchester/Manchester Royal Infirmary and obstetric-cardiology clinics run at Liverpool Women’s hospital.
Our ACHD clinics at LHCH are all located at Willow/LRAC Suite:
Dr Reza Ashrafi
- Wednesday AM & PM, LHCH
Dr Damien Cullington
- Monday PM; Thursday PM and Friday AM, LHCH
- Tuesday AM Obstetric-Cardiology St Mary’s Hospital/Manchester Royal Infirmary
- Tuesday PM General ACHD OPC with Dr Paul Atkinson (Speciality interest ACHD) and Dr Matt Daniels (ICC/ACHD and Structural Intervention)
Dr Jaspal Dua
- Monday AM & Tuesday AM, LHCH
- Monday PM Alder Hey (Transition clinic)
- Wednesday AM Manchester Royal Infirmary
- Wednesday PM Manchester Children’s Hospital (Transition clinic)
Dr Petra Jenkins
- Monday PM ACHD-PH clinic Manchester Royal Infirmary
- Wednesday PM & Friday PM clinics, LHCH
- 1 Tuesday per month at Wrexham Maelor Hospital
Dr Vaselios Papiannaou
Monday PM & Tuesday PM, LHCH
Friday AM ACHD-PH and General ACHD Manchester Royal Infirmary
1 Friday per month an all-day clinic is held in Blackpool Victoria Hospital
- Friday mornings – Consultant led
- Nurse led clinics held on Tuesdays
- 3 Mondays per month – Consultant led
- Nurse led clinics held on Mondays
If you require extra support or information in relation to your heart condition please call our North West ACHD advice line on 0151 254 3333. Please leave a message and one of the ACHD Specialist nurses will call you back. The ACHD advice line is in operation between 08:00am - 5:00pm, Monday to Friday by the team of ACHD specialist nurses.
Please note this helpline is NOT for queries regarding the date and time of your appointment. For queries in relation to your ACHD outpatient appointment please contact your consultant’s secretary on:
- Sharon Dobie-Howard - PA to Dr Damien Cullington & Dr Petra Jenkins 0151 254 3349
- Gill Lamb – PA to ACHD Surgeons 0151 254 3173
- Diane McCarthy - PA to Dr Jaspal Dua, Dr Reza Ashrafi, Dr Ian Peart 0151 600 1675
- Donna Sansbury - PA to Dr Vasileios Papaioannou 0151 600 3350