I’m David, a 51-year-old ACHD patient from the Wirral. I’ve been married to Clare for 25 years and we have 3 daughters – one aged 24 and 18 year old twins.

I was born with a hole in the heart (Ventricular Septal Defect) and had my first operation in 1974 aged 15 months. Apart from annual checks up, I lived a normal life until my mid 30’s when I had my second open heart surgery in 2009 at LHCH – Right Ventricular Outflow Tract reconstruction. Post surgery I suffered electrical issues with my heart rhythm (atrial fibrillation) and spent the summer of 2009 in Manchester Royal Infirmary receiving treatment including several ablations and cardio versions.

I started to suffer symptoms of heart failure from 2018 and had my third surgery to replace the tricuspid value and insert a pacemaker in 2021. In September 2024 I was admitted into LHCH and diagnosed with endocarditis and needed another open-heart surgery to replace the tricuspid value and pacemaker. I spent 4 months being treated pre-and post-surgery in LHCH and am grateful for all the help and support provided by the ACHD team.

Balancing working full time as an HR/Communications professional for companies like Unilever and Bank of America and handling my symptoms has not been easy. Following the latest surgery, I’ve made a number of life choices in order to spend more time with my family and focus on my wellbeing. Since my most recent hospital stay I have been looking for a way to help other patients/families given my experiences and this is why I joined the Patient and Public Voice group.

Hello, I’m Lowri and I’m a PPV group rep having joined when the group was first established in 2020. I’m an adult congenital heart patient and live in rural North Wales and I am a long-standing advocate for efforts to support CHD patients. I have recently been re-elected Governor of Alder Hey Children’s NHS Foundation Trust, something I never envisaged when I was a patient there over 18 years ago . I was very fortunate to have been cared for by the same consultant for 33 years – firstly at Alder Hey and then at his adult clinic at Liverpool Heart and Chest, where I’m still a patient. I’m also a patient at the Royal Brompton Hospital in London. In 2003 I spent a very brief period as a patient at Great Ormond Street due to endocarditis.

I am the first patient to undertake a Fellowship with the Bevan Commission where I helped develop an electronic patient passport which will allow clinicians dealing with an emergency admission of a CHD patient, instant digital access to their medical history. We were invited to present the concept at the Senedd (Welsh Government) and it is now available for anyone in the UK . In addition , I write about my experience for the British Journal of Cardiac Nursing and regularly attend conferences run by the Somerville Heart Foundation where I have made some great friends.

We are very fortunate to have a great CHD service here in the North West including colleagues who are educating the next generation of clinicians in the complexities of caring for CHD patients. I’m passionate about improving services for all patients and their families and will bring all that I’ve learned to the PPV.

I am Janet  a geriatric congenital heart patient. I am married with two children and three grandchildren. I had my first surgery aged 11 at Myrtle Street hospital in Liverpool.

I trained as a cardiac and respiratory technician at the cardio-thoracic surgical centre, now known as Liverpool Heart and Chest, and worked there for six years. I moved to Chester Hospitals managing a very busy cardiac, respiratory, and vascular department. I was an active member of the British Heart Foundation in Chester for over thirty years and was vice chair or chair for many years. I set up a charitable fund in the hospital for the purchase of medical equipment and was heavily involved in the campaign to raise £500,000 to build a dedicated coronary care ward for Chester.

I took early retirement, due to differences of opinions with higher management but was then offered a consultancy post with the cardiac network initially to coordinate the training and degree courses of all technicians in the North West. I was then asked to assist the network with the ACHD service that had recently been set up in Manchester. This work was mainly on policies, patient pathways and looking at ways to find patients who had been lost to follow up.

I retired again in 2010 and had further surgery in London the following year. I think my four-year term runs out in March next year, so you won’t have to put up with me for long.

Hello, my name is Heather, and I was born with Tetralogy of Fallot. I had my original heart op in 1979 at the old Mrytle Street Children’s Hospital in Liverpool and as an adult I have had a pulmonary valve replacement and an ICD fitted.

I’ve lived in different parts of the North West including Lancashire and Merseyside, and am currently based in South Cumbria. I work in tourism marketing but have also done a variety of different journalism and communications roles, hopefully skills which I can bring to the PPV group.

I put myself forward as a volunteer for the PPV group in early 2024 because I have benefited directly from congenital heart services throughout my life, and I wanted to do something positive for fellow patients and their families.

The group came to my attention after I attended a patient information day in 2023. I think it’s a really important way to put patients’ needs and opinions at the forefront of care for people – of all ages – with congenital heart problems.

Hello, I am Janet from Cheshire. In 1964 I underwent open heart cardiac surgery for an ASD at Myrtle Street in Liverpool.

Having always after that being interested in hearts and hospitals I decided to go into a career in cardiology. I trained as a basic grade technician, with more experience became a senior technician at Warrington Hospital. I then transferred to Chester where I began to move into the Echocardiography side of the career. I became manager of the Cardio- respiratory & Vascular department at COCH. After retirement from this post, I began locum work in Echo. In 2012      I worked in Sydney Australia for 8 months in a private cardiology clinic.

On my return to the UK, I continued locum work until the Covid pandemic after which I retired

In 2014 my son also underwent open heart surgery for ASD this was only discovered when he was 26 years of age. He also had a pacemaker implanted 3 weeks later. During this time as my son and I had very similar ECGs and history we had genetic testing for Holt Oram syndrome which we both have. My daughter was also tested, and she does not have the gene for this. My son’s pacemaker was removed 3 years later, and he continues to do well. He now has 2 children who are well.

In 2018 I had a pacemaker implanted with no issues. I historically have episodes of Atrial Flutter and bradycardia.

The PPV group is important as patients need support and information which I hope this group can provide in different ways. Most of us on the group have cardiac history or have a family member who has therefore we have first-hand knowledge and experience which we are willing to impart. I really want this group to make a difference to people with cardiac problems which I want to be a part of.

I am Patrick. I was born in 1982 with Tricuspid Atresia and had my Fontan procedure at Myrtle Street, Liverpool in 1988. A few years ago, I was fortunate to meet my surgeon, Roxanne McKay, at a NW ACHD convention in Liverpool.

In early 2024, while preparing to join the PPV team and completing my Level 4 Counsellor training, I experienced a stroke that affected my balance and speech. After a year of recovery, I restarted my Counselling course in February 2025 with a first-year group, and returned to placement that summer after an 18‑month break. I am now nearly halfway through my placement, approaching 50 hours. I reapplied to join the PPV Group in 2025 and am pleased to be part of the team.

Regarding my cardiac health, I have had several pacemakers and ablations, with many hospital stays at Liverpool Heart & Chest Hospital. I lived with AF since my teens but have been free of it since my last ablation in May 2022. My heart health has been stable for the past couple of years, though I will eventually need a transplant. I currently see my cardiologist at Manchester Royal Infirmary and have annual online appointments with the transplant team at The Freeman, Newcastle.

I am preparing a presentation on CHD and mental health for my Counselling course in January. After a challenging year, I look forward to a more positive future.

Hello, my name is Alexandra.  My friends and family call me Lucy, I have grown up with a heart condition. I have some of the best support from the cardiac nurses and cannot wait to help improve the care of other patients. I am a nursery deputy manager, and I have a passion for supporting families.

My name is Kyrstie Crompton I was born with CHD and had all my operations in Japan. I have a pacemaker now. I like going for walks, especially in new places. I like history and have volunteered to take part in an archaeological dig which was amazing. I also like listening to audibles and completing puzzle books.

I was born with vactural syndrome. Which includes congenital heart disease, I was blue lighted to Alder Hey Children’s Hospital at birth from Manchester to have a pulmonary valve replaced & a whole in my heart (ASD) patched & I have had 3 open heart surgeries to date.

I have been on the Patient & Public Voice group in the Northwest since September 2025 & I feel it’s a great opportunity to give back to service that has helped me immensely.

I was a beauty therapist for many years & I loved my job, helping others to feel good about themselves.

Hello I’m Heather and I am from Cumbria. The PPV group has given me the opportunity to shine a light on an amazing group of congenital heart patients – those with learning difficulties.  My brother, Alistair, who was born with Down’s Syndrome and was diagnosed with congenital heart disease was truly inspirational. He sadly passed away last December but has left a huge legacy, one that involves ensuring all patients have a platform and a voice.

“The Learning Disability Forum – an off shoot from the PPV group – provides a wonderful opportunity for patients with a learning disability alongside their families and carers to share experiences. Their thoughts and opinions are vital if we are to continue to improve NHS services for all.

Hello, I am Tom from the Isle of Man. I became a member of the PPV group following the many stays we had in hospital for my daughter Lola, who was born with Hypoplastic Right Heart Syndrome.

Being on the Isle of Man has made this journey with Lola even tougher. So, I’m passionate about promoting Isle of Man health issues and ensuring that everyone is provided with a first-class service – no matter where they live – and any help required is given immediately to alleviate the additional pressures that families face.

My name is Angelique, I am from Liverpool, married and have 2 children. My daughter Aurelia was born with a single ventricle in 2014 and my warrior princess has had multiple heart operations, now giving her a Fontan circulation. She is a beautifully kind hearted, empathetic and resilient girl and is such an inspiration to us all.

I myself became a cardiothoracic nurse after my daughters diagnosis and I now volunteer for the PPV group so that I can help to support other families through their own difficult journey.

I am passionate about ensuring services are accessible for all and that the standards of care for this specialist group of patients and their families remains to the highest standard possible.

Hello, I am Anne from Central Manchester. I’ve been involved with the congenital heart community since my daughter Rachel was born.  I really needed to meet other heart families in a time before the internet and social media and was relieved to find the Children’s Heart Association.  They were friendly and crazy with slightly older children, and this gave me hope of a future.

Rachel is now 33 and has a 1yr old so we have experienced the children’s service, moved up to adults, and also experienced congenital services for pregnancy for her – although this was in Leeds.

I am part of the PPV as I want the service in the North West to be the best it can be, and as I am chair of the Children’s Heart Association, I want to make sure we have good links so we can care for families in the best way possible.

Hello, I’m Claire and I’m a PPV Group Rep. I joined at the very beginning 4 years ago and I love it so much, I’m staying on an extra year! The reason I became involved in the PPV is because of my amazing 9-year-old son, Jake, who was born with Cardiomyopathy and is 3 years post Heart Transplant – and of course all the other amazing children and families I have met along the way!

I work as a Sales Manager for an IT Distributor as my Day Job, so I am not medical, but in my \”Spare\” Time I am the CEO of Team 1C, which is a charity I founded 2 years ago, with other Cardiac Parents. Our Charity is dedicated to supporting Cardiac families here in the North West and our less fortunate Cardiac Cousins in the developing world who do not have access to the NHS.

I’m really passionate about getting the best possible outcomes for our families, not just from a surgical and clinical point of view, but holistically too. My particular interests are in supporting families who transfer to Transplant Centres outside of the North West and ensuring that Parents/Carers/ Siblings are listened to and supported. I would also like to see more focus on Rhythm and Muscle patients in the future.

It’s an honour to be a PPV, I have loved every minute and I’m really proud of everything we have achieved.

Hello my name is Janet Rathburn and I’m the Chair of the PPV Group. The reason I’m involved is because I have a daughter who was born with Fallots Tetralogy. She has had many operations during her life but has had good outcomes and leads a full life. I am also a grandma of a baby grandson who had the same heart condition as his mummy.  Sadly, Dominic died after having surgery when he was 3 months old.

I’ve been involved with charities for children with CHD for over 40 years. I was Chair of the Children’s Heart Association for over 20 years and the founding Chair of the Children’s Heart Federation.  I have attended many meetings over the years, nationally, internationally and in the North West.

The reason I’m still involved, after so many years, is because I believe passionately that all patients with CHD should get the best possible treatment and outcomes.  I also believe that all families, of a child or an adult should get the help and support they need.

Health professionals need to hear the voice of patients and families so they can continually try to improve the services they provide. The history of the provision for patients with CHD is a fascinating one and I feel very privileged to be part of the process in trying to ensure that the North West has a world class service for patients with CHD.

Hello, my name is Gemma I am a primary school teacher from Anglesey in North Wales.  I am married and have 2 children Elsi 8 and my little heart warrior Mabon Gwyn who is forever 4.  Mabon was born with CCTGA, VSD & sub-pulmonary stenosis, he had 4 open-heart surgeries during his short life, as well as many other procedures.  We spent a lot of time in hospital after Mabon’s third surgery and although he fought so hard, unfortunately he passed away in December 2023.

My personal experience during pregnancy and Mabon’s life led to me feeling passionate about helping other heart families and improving services and support especially in North Wales as at times we feel so far from Alder Hey.  I have previously volunteered for the charity Heart Heroes and ran hubs for families in North Wales and the North West, building strong relationships with families.  I am also in the process of setting up my own charity in Mabon’s memory (Mighty Mabon’s Legacy) as I still want to support families in hospital, to ensure standards of care are high in all centres and that families are aware of what support they can access, as well as raising awareness of CHD and supporting other heart charities.  The support families receive after the loss of their child is also an area I would like to see improved.