About Little Hearts Matter 

Little Hearts Matter (LHM) is a national charity with over 7000 members. We are the only charity in the UK that offers support and information to, and represents the needs of, children and families following a diagnosis of single ventricle heart disease (half a working heart). These congenital cardiac conditions can never be cured, even following repeated surgery, so the children must learn to live within the restrictions that their disability and fears for their future create. 

Little Hearts Matter is there from the time parents learn of their child’s condition, through risk-filled treatment into a challenged-filled life at home. LHM is there to support the children, and their families, through their hopes and aspirations and the gradual realisation that they will never have the same life as their peers. Our aims are to: 

Alleviate isolation by offering support, friendship and understanding from the time a diagnosis is made, through treatment decisions, hospital care and into life at home, eventually introducing parents and patients to other families who have similar experiences and shared concerns helping them to build a network of support. 

Reduce fear by offering patients, parents, siblings, and the extended family a greater opportunity to understand the diagnosis and treatment paths available. 

Reduce confusion and a lack of understanding by producing and supplying for free, user focused information that supports and aids understanding from the time of diagnosis, through treatments and into life at home. 

Raise a greater awareness within Medical, Educational, Social and Governmental circles of the needs of children, and their families, as they travel through every stage of their lives. 

Job Summary 

Each year in the UK, as many as 600 families receive the devastating news that their child has only half a working heart. These children are born with one of the most complex congenital heart conditions—and there is no cure. Families facing this reality need clear information, emotional support, and guidance to navigate the lifelong medical, emotional, and practical challenges that come with single ventricle heart disease.

That is why Little Hearts Matter exists. We wrap a blanket of care and understanding around families at every stage of their journey. From the moment of diagnosis through to adulthood, bereavement and beyond, we are always here when they need us.

This pivotal Senior Service Lead role is essential to Little Hearts Matter’s strategic growth. Working closely with the Chief Executive, you will drive the development and delivery of impactful, responsive services that meet the evolving needs of our members. You will play a key role in strengthening our offer to families, deepening engagement, and raising the profile of our work across health, education, and social care.

Building on a 30-year legacy of supporting families affected by single ventricle heart disease, your leadership will ensure our services remain compassionate, credible, and life-changing. Within 24 months, your success will be evidenced through:

·       A sustainable and responsive service: You will have reviewed, developed and delivered our core services to meet members’ current and future needs. Families will be engaged, supported, and able to see the difference we make at every stage of life.

·       Robust impact measurement: You will have implemented systems to capture data and demonstrate the tangible outcomes of our work, helping us to evaluate, improve, and advocate for our members with confidence and evidence.

·       A future-facing strategy: You will have shaped a clear vision for the continued evolution of our services, with defined priorities and a sustainable approach to growth, building on a strong foundation of member trust and organisational learning.

In summary, this is a rare opportunity to shape the future of a vital national service for people with single ventricle heart conditions, making a lasting difference for individuals and families living with the reality of half a working heart.

To apply, please submit your CV and covering letter (no more than 2 pages) to [email protected].  This should tell us how your skills and experience meet the job specifications and your motivation for working with Little Hearts Matter.   For initial conversations or questions about the role please phone Lisa Davies, Chief Executive at 07548758048.  No agencies please.