About us
Youth at Heart are a charity, set up to empower, inform and support teenagers and young adults aged 13-24, and their families, living with congenital heart disease (CHD) across South West England and South Wales.
Through our CHD Health Youth Worker Team, we offer face to face and online support. As independent advocates we listen to your stories, we enable your voice to be heard and for you to make informed choices. We recognise, and facilitate help, for the many challenges faced, we empower you to access opportunities and we walk alongside you on your journey.
Our Why?
Youth at Heart was set up in May 2014 in memory of Alice who was born with complex CHD.
Never defined by her illness, once her medical team started to talk to her about Transition and Transfer to Adult Cardiac Service, Alice realised that this step was huge. She wanted the face to face opportunity to talk to a trusted, independent person about her health, choices and opportunities.
More than anything, Alice also wanted to help other young people living with CHD. Her ambition was to make a positive difference to their live, and help find solutions to the many challenges she knew only too well, that they faced.
Following her death, Alice’s family spoke to the clinical team at the Bristol Heart Institute about what they could do. Clinicians advised funding an independent health based Youth Worker post. Youth at Heart was born and proudly realises Alice’s legacy on a daily basis.
1 in 100 babies are born with congenital heart disease.
Every 2 hours a baby is born with a serious heart condition.
90% of those born with CHD go on to thrive into adulthood.
10 Years of Youth at Heart
Join us in our 10th Anniversary Year of Youth at Heart and making a difference to the lives of young people (aged 13-24) with Congenital Heart Disease (CHD) and their families.
Although independent from the NHS, Youth at Heart works in partnership with the Bristol Heart Institute, Bristol Royal Hospital for Children and the South Wales and South West Congenital Heart Disease Network, holding an ‘honorary’ contract for our Youth Workers.
This enables our Youth Workers to have access to the Bristol Heart Institute and Children’s hospital wards where they are based, as well as hospitals and clinics across the region.
Our Youth Workers attend clinical team meetings for CHD, with Consultants and Clinical Nurse Specialists inviting our Youth Workers to transition and young people clinics across the region. We have visited Taunton, Cardiff, Bridgend, Pontypool, Torbay and Tonypandy so far.
Our staff team currently comprises of our Operational Manager, Senior CHD Health Youth Worker, and Administrator.
Our Youth Worker position is full time, whilst all other staff posts are currently part time. Additional funding will help to increase our staff team’s capacity, and the number of children, young people and families we are able to support.
Our Board of Trustees consists of 6 trustees with backgrounds in Finance, CHD Clinical Nurse Specialist, Safeguarding, Education and lived experience of CHD.
Meet the team
Hello, Xander here. I’m the Senior Congenital Heart Disease Health Youth Worker. I have been in post for over 4 years now, building relationships with the clinical teams across the region, meeting young people and families, attending clinics, seeing inpatients, talking at and attending study days. There is A LOT to learn in the world of CHD and every young person and family have a different journey, story and lived experience. When I am not working for Youth at Heart I am usually unwinding with my two cats Astra and Tache, watching TV shows with my wife or playing the PS5.
Hi I’m Audrey. After 35 years working in financial services I took early retirement and in October 2022 joined Youth at Heart as the Office Administrator.
I love lots of variety in my life and working at Youth at Heart certainly is varied, everyday I learn something new. I also run a good neighbour scheme and a community café twice a month in the village where I live.
I have a husband and two cats, love watching sport, doing HIIT at the gym and practicing yoga. I have a greenhouse where I try to grow summer veg and flowers. Originally from Manchester, I’m a lifelong Manchester United supporter.
..webp)
Hi, I’m Nikki! After many years of being a supporter of Youth at Heart I joined as Operations Manager in July 2022. In my previous career I worked as a Family Services Manager in a local Children’s Centre. I am part of our school PTA, and also run my own business. I live with my husband, three children and two cats, as a family we enjoy visiting friends and family, going for walks and days out. The children keep us busy and active with their clubs and racing around after them.
Meet the trustees
I am the Enrichment Manager for Kingsholm Primary School. As the mother of a young person born with CHD I have an innate understanding of the joy and challenges associated with living with this illness. As a family we wanted to make a difference for those in a similar position. In collaboration with friends and family, we founded Youth at Heart in 2014 and have worked tirelessly alongside many valued volunteers to raise funds, and to build the charity into an organisation that makes a real difference every day.
I have chaired the board of trustees of Youth at Heart since July 2019. Presently I am the chairman of the UK insurance operations of Allianz Group, including LV= Insurance, and the Senior Independent Director of BUPA, the global healthcare group. I’ve worked for 13 years at PricewaterhouseCoopers in London and Toronto, followed by 16 years with the AXA insurance Group in Bristol, London and Paris, where I was the
Group CEO of Life, Savings and Health.
I was born in Auckland, New Zealand. I moved to England to play rugby 20 years ago. I live in the Essex countryside with my wife Laura and our two children, Noah & Zara. I spend my time outside of work as a taxi service for my children and like to play golf when I can and love watching sport of any kind. We love to travel as a family and see new parts of the world together.
I started in accounting in Cornwall where I did a bit of everything including auditing not-for-profit organisations. I spent 10 years at Aviva, working in various areas including Life, General, Health Insurance, asset management and digital marketing and Investor Relations. I have been at Bupa for 3 years and previously was the Director of Group FP&A.
I am the Lead Nurse for the Congenital Heart Disease (CHD) Network for South Wales and South West England.
The purpose of the Network is to ensure a high standard of equitable care across the Network, clinical information and resources for patients and families can be found on our website. www.swswchd.co.uk
I have an MSc in Advanced Nursing Practice and maintain my clinical practice one day a week as an adult congenital heart disease ACHD clinical nurse specialist. I lead the ACHD team in The Bristol Heart Institute and was inspired to push forward the idea of the Youth Worker role within the ACHD service. I’m committed to facilitating the youth worker role into to the ACHD service which is funded by Youth at Heart.
I have published in The Journal of Cardiac Nursing, am a member of the British Association Congenital Cardiac Nursing (BACCNA) Council, helped develop a Commissioning Guide for Services for Young People and Grown-ups with CHD, the Congenital Heart Disease Standards and Specifications (2016) and worked with Royal College of Nursing.
I’m a mother, wife, and former rugby referee, I was also a Teacher/School Leader for over 25 years.
In 2018, I launched my own freelance Safeguarding Consultancy, which complemented by my school experience, advises organisations, charities & social groups in keeping all vulnerable individuals safe.I have a Masters in ‘Advanced Child Protection Studies’ (University of Birmingham) in 2020 and now lecture (part time) on the degree.
I am the safeguarding trustee for Youth at Heart.
It’s great that S feels so relaxed and comfortable talking to you. This will make things easier for her as she progresses through her late teens and early twenties. Interesting times for sure!
It’s reassuring for me too, knowing that she has you as a contact and someone she can go to in confidence with any questions or worries she may have."
LP, Parent
Explore Youth at Heart
Youth at Heart are a charity committed to young people aged 13-24, and their families, who are living with Congenital Heart Disease (CHD) in South West England and South Wales.
We empower, inform and support them to live life to its full potential.
For young people
We are committed to supporting you as you start your Transition Journey aged 13 and leading up to your Transfer from Paediatrics to Adult Services and beyond, until your 25th birthday.
For the whole family
Youth at Heart recognise that congenital heart disease affects the whole family, which is why our Youth Workers are there for families too.
For professionals
Youth at Heart is a charity independent from the NHS that works in partnership with health professionals across the South Wales & South West Congenital Heart Disease Network.
Get involved
Youth at Heart rely on funds being raised through donations, grants, events and activities and for people to get involved to help us carry on our important work.