Today, there are increasing numbers of adults with congenital heart defects (CHD).

And, the number of patients with complex defects is increasing, with 10% of the adult CHD population now falling within the complex group.

As such, it is vital that these patients get access to expert care and advice throughout their lives.

However, still too many patients are being treated in places where there is not a deep enough understanding of CHD medicine.

According to NHS England, CHD patients require regular monitoring, and an adult with CHD might need a variety of treatment and medications including transcatheter intervention, cardiac surgery, invasive electrophysiology and pacing procedures, advanced heart failure management, palliative care and transplantation.

As such, the majority of CHD patients require ongoing follow up and treatment. And, it is vital that all adults with congenital heart defects, whatever the level of complexity, are seen by an expert from a specialist centre at least once.

CONGENITAL HEART DISEASE STANDARDS

Please note – This is an active list and so is being updated regularly.

(Medical professionals please feel free to contact us if information from your hospital is incorrect)

Level One Centres

Liverpool Heart and Chest Hospital

Thomas Drive, Liverpool L14 3PE

Tel: 0151 600 1616

The Level 1 ACHD service in the North West is managed by a group of hospitals called the Liverpool Partnership. This includes the Liverpool Heart and Chest Hospital, the Royal Liverpool Hospital and the Liverpool Women’s Hospital.

North West ACHD Advice Line: 0151 254 3333 Monday to Friday 8am–6pm (answerphone service)

ACHD Nurse Specialists: Linda Griffiths; Anna Harrison; Sharon Hughes; Lorraine English; Julie Ollerhead

ACHD Cardiologists: Dr Jaspal Dua; Dr Petra Jenkins; Dr Rea Ashrafi; Dr Vasileios Papaioannou

CHD Surgeons: Mr Rafael Guerrero; Mr Attilio Lotto; Mr Ram Dhannapuneni

CHD Interventional Cardiologists: Dr Arjamand Shauq; Dr Gemma Penford; Dr Atul Kalantre; Dr Suneil Aggarwal

View website

Freeman Hospital

Freeman Road, High Heaton, Newcastle Upon Tyne, Tyne and Wear, NE7 7DN

Tel: 0191 233 6161

ACHD Nurse Specialists: Lorna Carruthers 0191 244 8139 lorna.carruthers@nuth.nhs.uk | Eliza Lunec 0191 2448990 eliza.lunec@nuth.nhs.uk |  Debra McParlin (Fontan Nurse Specialist) 0191 213 9239 debbie.mcparlin@nuth.nhs.uk

Calls answered Monday–Friday, 8am–4pm

Answer machine with voicemail in operation 24/7: 0191 213 7425

ACHD Nurse Specialists Team Email: achdnurses@nuth.nhs.uk

ACHD Consultant Cardiologists: Dr Katrijn Jansen; Dr Louise Coats; Dr John O’Sullivan; Dr David Crossland; Dr Neil Seller; Dr Tony Hermuzi

Consultants available via hospital switchboard: 0191 233 6161

View website 

Leeds General Infirmary

Great George Street, Leeds, West Yorkshire, LS1 3EX

Tel: 0113 392 8184

ACHD Nurse Specialists: Jo Birkett; Emma Pick; Hannah Swift

ACHD Nurse Specialist Tel: 0113 392 8154

ACHD Nurse Specialist Email: leedsth-tr.achdnurse@nhs.net 

Working hours are Monday to Friday, 8am–4pm, with answerphone.

ACHD Cardiologists: Dr Kate English, Dr James Oliver, Dr Damien Cullington (Secretary tel: 0113 392 5748); Dr Hamish Walker, Dr Vitor Ramos (Secretary tel: 0113 392 5458)

View website

Leicester: East Midlands Congenital Heart Centre

Glenfield Hospital, Groby Road, Leicester, Leicestershire, LE3 9QP

Tel: 0300 303 1573

View website

Birmingham: Queen Elizabeth II Hospital

Metchley Drive, Edgbaston, Birmingham, West Midlands, B15 2TH

Tel: 0121 371 2000

View website

Barts Heart Centre (prev at The Heart Hospital)

St Bartholomew’s Hospital, West Smithfield, London, EC1A 7BE

Tel: 0203 765 8608

ACHD Nurse Specialist: CNS Help-line – 020 3765 8608 (0900-1700 Mon-Fri). Urgent admitted patient queries – 07776181469.

Email: GUCHClinicalNurseSpecialists@bartsandthelondon.nhs.uk

ACHD Nurse Specialist Tel: Out of hours (1700-0900 Mon – Fri) & weekends Contact Barts switchboard – 020 3416 5000 Ask for general cardiology SPR on-call – Detail the problem, provide callback contact info and give your NHS number Cardiology SPR will contact GUCH consultant On-call

ACHD Cardiologists: Hiedi Bohay: Dr Fiona Walker / Dr Kate Von Klemperer / Prof. John Deanfield – 020 3765 8754. Brooke Care: Dr Shay Cullen / Dr Vivienne Ezzat – 020 3765 8899. Katherine Taylor: Dr Bejal Pandya / Dr Amit Bhan – 020 3765 8765. Jennifer Piper – 020 3765 8761.

View website

Royal Brompton Hospital

Sydney Street, London, SW3 6NP

Tel: 020 7352 8121

ACHD Nurse Specialist: Ella McDonnell; Clare Finlay; Suzanne Rowsell (Paul Wood ward nurse manager); Lynda Shaughnessy (ACHD Transition); Virginia Castro Miera Pires (ACHD Transition); Loredana Haidu (ACHD Transition); Carl Harries (Pulmonary Hypertension)

ACHD Nurse Specialist Tel: Contact Switchboard: 020 7352 8121 for urgent enquiries re Cardiologists – ask for the on call ACHD or adult cardiology registrar. To contact via email: achd@rbht.nhs.uk

ACHD Cardiologists: Dr Lorna Swan, Prof. Michael Gatzoulis, Dr Anselm Uebing, Dr Konstantinos Dimopoulos, Dr Raphael Alonso-Gonzalez, Dr Sonya Babu-Narayan, Dr Aleksander Kempny; Dr Wei Li, Dr Sabine Ernst, Dr Tom Wong, Dr John Wort, Dr Laura Price; Dr Colm McCabe

View website

St Thomas’ Hospital

Guy’s and St Thomas’ NHS Foundation Trust, 6th Floor East Wing, Westminster Bridge Road, London, SE1 7EH

Tel: 0207 1889 712

ACHD Nurse Specialist: Alex Corless (Pulmonary Hypertension & Atrial Fibrilation) , Hajar Habibi (Transition), Heather West (pregnancy), Rachel Witts (Special and Additional needs in ACHD, Pulmonary Hypertension); Email: gst-tr.achd@nhs.net

ACHD Nurse Specialist Tel: ACHD Secretary: Sylvia Kahl | Tel: 020 7188 1090 | Secretary email: sylvia.kahl@gstt.nhs.uk | Out of hours: Routine queries – Answerphone in operation, please leave a message with your contact details. Urgent queries – On call cardiology registrar telephone

ACHD Cardiologists: GUCH Cardiologists:Dr Natali Chung; Dr Cathy Head; Prof Shakeel Qureshi; Dr Alessandra Frigiola; Dr Yaso Emmanuel; Dr Harith Alam; Prof Eric Rosenthal | ACHD Surgeons: Prof. David Anderson, Mr Conal Austin, Mr Caner Salih

View website

Bristol: Bristol Heart Institute

Bristol Royal Infirmary, Bristol, BS2 8HW

Tel: 0117 923 0000

Consultants: Dr G Stuart; Dr M Turner; Dr R Bedair; Dr S Curtis

Surgeons: Mr A Parry; Mr S Stoica; Mr M Caputo

Team secretary: 0117 342 6571 / 6557 / 6550

Adult Congenital Heart Disease Specialist Nurses: 0117 342 6599

Cardiology Outpatient Appointments: 0117 342 6502

Cardiology Waiting List: 0117 342 6557

Cardiac Surgery Waiting List: 0117 342 6558 / 6559

View website

Southampton: University Hospital Southampton

NHS Foundation Trust, Cardiothoracic department, Tremona Road, Southampton, Hampshire, SO16 6YD

Tel: 02380 777222

ACHD Cardiologists: Dr Tony Salmon, Dr Aisling Carroll, Dr Lindsay Smith, Dr Samantha Fitzsimmons

ACHD Nurse specialists: Lynda Tellett, Melanie Finch, Jane Lewis

ACHD Advice Line: 0238 120 4739

View website

Glasgow: Scottish Adult Congenital Cardiac Service,

Golden Jubilee National Hospital, Agamemnon Street, Clydebank, West Dunbartonshire G81 4DY

Tel: 0141 951 5000

Email: saccs@gjnh.scot.nhs.uk

Clinical Nurse Specialists: Jim Mearns; Elaine Muirhead; Sandra Jansz; Maggie Simpson

Clinical Nurse Specialists Tel: 07795 953 070

Consultant Cardiologists: Dr Niki Walker; Dr Ines Uribe-Morales

Consultant Cardiac Surgeons: Mr Kenneth MacArthur; Mr Mark Danton; Mr Andrew McLean; Mr Ed Peng

View website

 

Level Two Centres

Manchester Heart Centre

Manchester Royal Infirmary, Oxford Road, Manchester, M13 9WL

Tel: 0161 276 5672

North West ACHD Advice Line: 0151 254 3333

ACHD Nurse Specialists: Kate Shammas; Sophie Howard; Kim Laurie

ACHD Cardiologists: Dr Jaspal Dua; Dr Petra Jenkins; Professor Bernard Clarke 

View website

Norwich: Norfolk & Norwich University Hospital

Cardiology Department Level 3 East Block, Norfolk and Norwich University NHS trust, Colney Lane, Norwich, Norfolk, NR4 7UY

Tel: 01603 286259

ACHD Nurse Specialists: Toni Hardiman; Beth Wilson; Rachel Ball

ACHD Cardiologists: Dr Leisa Freeman; Dr Catherine Head

Helpline: 01603 287292 (answer phone Mon-Fri 8:00-16:30)

Email: nnu-tr.guch@nhs.net

Fax: 01603 287494

Evenings and weekends only: If urgent advice is needed please contact the Cardiology coordinator on 01603 286286, bleep 0099

View website

Cardiff: University Hospital of Wales (UHW)

Heath Park, Cardiff, Wales, CF14 4XW

Tel: 029 2074 7747

Lead ACHD Consultant Cardiologist: Dr G Szantho

Consultant Cardiologists: Dr D Wilson; Dr N Masani; Dr H Wallis

Service Co-ordinator: Elizabeth Corris 02920 743892 Elizabeth.corris@wales.nhs.uk

Clinical Nurse Specialists: Bethan Shiers and Sarah Finch 02920 744580 bethan.shiers@wales.nhs.uk / sarah.finch2@wales.nhs.uk

Transition Nurse Specialist: Ann Jermyn 02920 748046

Lead Physiologist: Sam Bowen 02920 744551

Cardiac Obstetric Team: Dr H Wallis and Dr Claire Francis 02920 745196

Peripheral Cardiology Support

Dr H Wallis (Abertawe Bro Morgannwg & Hywel Dda)  01639 862049

Dr C Williams (Cwm Taf) 01443 443 642

Dr P Campbell (Aneurin Bevan)  01495 765 055

View website

Belfast: Royal Victoria Hospital

Grosvenor Road, Belfast, Antrim, BT12 6BA

Tel: 02890 240503

Oxford: John Radcliffe Hospital

Headley Way, Headington, Oxford, Oxfordshire, OX3 9DU

ACHD Nurse Specialists: Emma Weingart and Angie Austen

Consultant Cardiologist: Dr Elizabeth Orchard

Patient advice line: 01865 (7)40412, normal working hours are Monday to Friday 8.00am–4.00pm

If the nurse can’t take your call immediately, please leave your name, hospital number and contact details on the answerphone and they will contact you as soon as possible.

Email: ACHD&PHT.Nurse@ouh.nhs.uk

Cardiac Investigations Annexe
Level 0, John Radcliffe Hospital
Headley Way
Headington
Oxford OX3 9DU

View website

CONGENITAL HEART DISEASE STANDARDS

The UK’s first congenital heart research centre

The Somerville Foundation has always worked hard to improve the lives of people who were born with a heart condition. However much more needs to be done; especially when it comes to research.

That’s why, with your help, The Somerville Foundation opened the UK’s first dedicated congenital heart research centre.

The first ever dedicated congenital heart research centre in the UK, and part of only a handful worldwide; this state-of-the-art facility is run in partnership with The Somerville Foundation and The University of Suffolk.

Combining the University’s expertise in cardiovascular science, exercise physiology, and psychology, and our expertise in supporting people with CHD, the centre focuses on finding more effective ways to treat and support CHD patients.

But more still needs to be done.

Today, too many congenital heart defect patients are dying prematurely and living restricted, and in some cases, unhappy lives. We are a long way from having all the answers.

So, please make a donation today and help us carry on our valuable work.

Become a Friend

Do you think it’s unfair that CHD patients have to pay for prescriptions? Do you think that there should be a much greater emphasis on congenital heart research and better awareness of the defect? Do you wish that your GP, employer and the government understood the condition and challenges better?

If you answered yes to any of these questions, join the thousands already raising awareness of congenital heart defects and fighting for patients’ rights.

BECOME A FRIEND FOR JUST £2 per month

BECOME A FRIEND

How can you help us?

FUNDRAISE
DONATE
CAMPAIGN
VOLUNTEER

With your help, we’ve helped fund new and improved treatments for congenital heart disease. we opened the UK’s first dedicated Congenital Heart Research Centre. we’ve organised receptions at the House of Lords and House of Commons, a film première, concerts, parachute jumps, marathon runs, annual sponsored walks and masquerade balls. we ensure that adult CHD patients enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives. we’ve staged annual conferences, regional patient information days and workshops throughout the UK. we’ve published a range of leaflets for CHD patients on a wide-range of topics. we’ve launched a Freephone patient helpline to provide practical advice, a listening ear, and emotional reassurance at times of stress. we’ve created online networks where congenital heart patients can connect with each other. we successfully applied for a Comic Relief grant to help develop mental health support services. we’ve contributed to adult congenital heart disease nurse training days and taken part in various study days and conferences for medical and health professionals. we’ve established a benevolent fund for members who are in financial hardship. we’ve organised residential weekends and outward bound holidays for teenagers and adults, providing congenital heart patients with the opportunity to meet and gain support from each other.

Just think what else we could do if you donate, fundraise or volunteer for us.

FIND OUT HOW WE’RE HEALING BROKEN HEARTS  

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