Meet the Adult Congenital Heart Disease team
We are pleased to share the next instalment of our Meet the Specialist series where we hear from LHCH specialists about their role, experiences and hopes for the future. This time we spoke to Damien Cullington, Consultant Adult Congenital Cardiologist (ACHD) and ACHD Clinical Lead, who discussed the role of the ACHD team.
Insight into the ACHD service
The North West CHD service is delivered by the Liverpool Partnership (Alder Hey, Royal Liverpool University Hospital, Liverpool Women’s Hospital and Liverpool Heart and Chest Hospital). LHCH is where all adult congenital surgery and interventional procedures are performed. Dr Cullington explained:
“LHCH is one of the top three hospitals in the country for delivering the highest volume of operations and procedures for ACHD. Most inpatient care is also provided at LHCH along with Manchester Royal Infirmary. Outpatient services are also delivered from Wrexham, Manchester and Blackpool.
“The team is based in Liverpool to ensure that consultant-led care can be provided 24 hours a day, 7 days a week. At first this was a big change for patients as about two thirds of patients who originally went to Manchester now come here.”
“The service moved to Liverpool, from Manchester, in September 2018, and has steadily grown over the last 8 years. It’s taken time to establish the service and ensure it’s running as smoothly as we would like. Most ACHD services in the UK are at least two decades old and some of the oldest worldwide, perhaps 60 years old. Since starting, we have expanded our consultant workforce so that we can see more patients, and it’s also become more streamlined and better organised.”
ACHD consultants
There are seven ACHD Consultant Cardiologists: Dr Damien Cullington (clinical lead), Dr Reza Ashrafi, Dr Jaspal Dua, Dr Petra Jenkins, Dr Vasilios Papaioannou, Dr Julia Jones and Dr Sarah Elgamal.
Dr Cullington added: “Members of the team all have personal areas of interest and hold local, regional, national and international leadership roles with input on various national and international committees. They’re also fellows of societies such as the British Cardiac Society. We regularly present at the British Congenital Cardiac Association and other international conferences to share learning with peers, both nationally and internationally. This all helps us to further influence and improve patient treatments for the future. Dr Jones is the Safeguarding Lead for LHCH.
“It’s important to note that the ACHD Consultant Cardiologists work effectively as part of the wider multi-disciplinary team which includes surgeons, interventionalists, specialist nurses, congenital sonographers, psychologists and our admin and operational teams. Without them, we would be completely lost!”
ACHD specialist nurses
The team also has seven ACHD specialised nurses based at LHCH: Anna Harrison (Lead Nurse); Julie Ollerhead; Fiona Andrews; Linsha George; Lorraine English; Sharon Hughes and Lisa Devitt.
The ACHD nurses are absolutely crucial to the smooth running of the service. They have key roles in delivering acute and outpatient care; managing the ACHD regional helpline queries; and assisting with surgical, EP and interventional services. They have an essential role in supporting our patients through their ACHD care, many of whom have complex neurodiverse and learning difficulties.
Patient-centred services
The ACHD consultant team provide a wide range of clinics at LHCH and at hospitals across the North West. Dr Cullington explained:
“We provide cardio-obstetric services to deliver specialised antenatal care for pregnant individuals with congenital heart disease. These clinics are at Liverpool Women’s Hospital and St Mary’s Hospital in Manchester with Drs Ashrafi and Cullington representing ACHD.
“The team provides transition clinics for patients who were formerly cared for by Alder Hey Children’s Hospital, but who are moving into adult services. The idea is to make this change as smooth as possible, reducing any anxieties or concerns the patient and their family may have. Dr Dua and Senior Nurse, Fiona Andrews attend the weekly clinic at Alder Hey.
“The ACHD Pulmonary Hypertension (ACHD-PH) service is run from Manchester Royal Infirmary by Drs Jenkins and Papaioannou. This service has been running for over a decade in Manchester and is essential to manage these complex lifelong patients.
“Dr Jenkins set up a Fontan clinic four years ago for this unique set of patients, and works very closely with hepatology colleagues.
“We also offer a lifestyle clinic where we offer support, management advice and treatment for our patients to help ensure they live as healthy a life as possible – Dr Jones and Senior Nurse, Lorraine English have created.
“In the last 6 months, I have set up an anomalous coronary arteries clinic where we provide expert management of congenital conditions affecting the coronary arteries. All regional referrals are looked after by this highly specialised service.
“In addition, in the last few years the ACHD specialist nurses have introduced nurse-led clinics, which are essential for service delivery as demand increases.”
Leaders in innovation
The ACHD Team prides itself in implementing new ideas and working innovatively to provide improvements to patient outcomes. Dr Cullington highlighted the following examples:
“As leaders in the field, we’ve been fortunate to have been able to implant new pacemakers and implement types of pacing and ablation that is so complex that it wouldn’t be available elsewhere. For example, we can implant surgical pacemakers which are really impressive. Dr Reza Ashrafi has been instrumental in this work.
“We are also working closely with the Aortic Surgery team to develop a congenital aortic service and this will come over time.
“Dr Sarah Elgamal’s role is quite unique as we didn’t have a bespoke congenital imager before 2020. She has helped us advance the service as we now have an expert who has a specific knowledge and insight into ACHD imaging (CT and MRI). She works closely with colleagues in cardiac imaging and radiology who provide an enormous amount of cross-sectional imaging for our service.”
North West CHD Centre
Asked about his hopes and plans for the future of the ACHD service, Dr Cullington shared:
“We have a vision for the development of the ‘Northwest Congenital Heart Disease Centre’ at LHCH. A bespoke, dedicated department where patients can come as a day case, have their appointment and all their diagnostic tests on the same day.
“This would make a big difference for our patients who currently must visit us on separate occasions for different scans or tests such as a CT/MRI scan or an exercise test. The footprint of the service is large with us covering the catchment area of the whole of Northwest England, North Wales and the Isle of Man. This means we have some patients who travel from mid to North Wales, Manchester or even further afield so multiple journeys can be particularly challenging for them.
“It’s hoped that this will enable us to offer a better all-round service with greater convenience and an enhanced experience for our patients and their families. This is the next step for the following 5-10 years, and it’s necessary to help grow and meet future demand and needs.
“Research is another area which is coming into our focus, now that the service has been fully embedded and developed. Drs Jones and Ashrafi are supervisors for a PhD student. It will take several years to build that momentum, but research will undoubtedly help us further improve treatments for future patients.
“Also crucial is the training and development of the next generation of ACHD consultants in the UK.
“In the last 3 years we have one speciality trainee who has completed their ACHD and cardio-obstetrics training and another two currently in training. We currently have European fellows visiting for imaging training and a senior interventional fellow working between LHCH and Alder Hey. We have regular training placements for speciality trainees across the region for their portfolios and paediatric cardiology trainees from Alder Hey.”
Service in numbers
- Circa 5000 ACHD patients are cared for at LHCH with numbers increasing annually
- Circa 600 surgical/EP/Device/Intervention and catheter procedures per annum
- 120-150 adult congenital operations a year
- 10 clinics per week at LHCH (outreach clinics in Manchester Royal Infirmary, Wythenshawe, Blackpool Victoria and Wrexham)
- 7 ACHD specialist nurses
- 4 Congenital cardiac surgeons
- 3 Congenital Interventionalists + 1 Senior Fellow
- 4 Highly specialised congenital sonographers
- 3 ACHD Speciality Trainees