Meet your Patient & Public Voice Board Representatives

Patient and Public Voice is vital to our network.

We have Fetal/Paediatric and Adult PPV Reps on our board who want to engage with patients, parents and carers to discuss issues and gather views.  

These views are then raised with the Board to be discussed and to see how improvements to your service can be made. 

Please also see the Network Patient News and Events page.

To get in touch with any of the PPV Reps, please use the contact us option at the bottom of this page or click here https://www.lifelong.nhs.uk/contact-us/

Meet your PPV Reps below:

Fetal/Paediatric Representative

Sean O’Grady

I have been a member of the previous CHD Network Board and have two children with different congenital heart diseases. This gives me a unique understanding of patient and parent experiences, having attended multiple appointments and surgeries, and stayed for extended periods in hospitals.

I have the experience and skills to add value in this role and shape the way in which the network operates. 

I also appreciate the importance of what the network does, not just for me and my family, but for a huge number of patients and parents across the network.

Fetal/Paediatric Representative

Katie Jackson

I am a dedicated parent and passionate advocate for those affected by congenital heart disease. My journey began when my son was diagnosed with congenital heart disease at age three, a late diagnosis that led to open-heart surgery six months later during Covid. This experience came as a significant shock and was an incredibly challenging time for all of us, and whilst my son will be under lifelong cardiac care I am now fortunate that my son is thriving.

Through this journey, I have become deeply committed to supporting patients, parents/carers and their families who are navigating similar situations. I am honoured to serve as PPV Rep on the Board for the Lifelong Congenital Heart Disease Network, where I strive to make a positive impact and advocate for the needs of our community.

Fetal/Paediatric Representative

Kate Digby

From diagnosis through to recovery and aftercare, the voices of parents and patients are crucial. Life can change in an instant, as it did for us when my son went into heart failure at just seven days old. Since then, he has undergone three open-heart surgeries and numerous procedures.

Before this I had barely entered a hospital, but I now have a deep understanding of heart disease, hospital systems, and most importantly, empathy for others.

With this first-hand experience, I hope to give back by supporting families navigating their own CHD journeys, helping them find their way and fostering stronger connections among all parties involved. 

Adult Representative

Andrea Farley Moore

I am a patient with CHD and have been cared for by Guys and St Thomas’ for 50 years.  It has been a long and sometimes difficult journey but I have also benefitted from some amazing care. I have lived in many locations and experienced services in many contexts. Through board involvement I would like to support the development and sustainability of specialist services in England and ensure that the views and voices of all patients are well represented and everyone has the opportunity to participate. My working life has included roles on education, health, criminal justice and the media. I am a trained teacher and counsellor.

I am particularly interested in the psychological aspects of having a lifelong condition and would like to raise awareness of this in society and within the NHS. I would like to think more about how we create new approaches to managing wellbeing in the context of CHD.

Adult Representative

Jane Western

I have years of managing the experience of major surgery in my childhood and teens, and now in retirement – and could contribute my learning etc to the network. 

I bring a commitment to the NHS and its staff plus a knowledge of the effect on an individual of congenital heart disease.