Support for patients

Patients and families affected by congenital heart disease can face a number of challenges. The network has a variety of facilities, staff and charitable support to help.

Support for patients

Patients and families affected by congenital heart disease can face a number of challenges. The network has a variety of facilities, staff and charitable support to help.

Support groups and charities

Children’s and adult cardiac services in the South of England and across the UK are fortunate to be supported by a number of organisations and charities, including a charity dedicated to the children’s heart unit at Southampton Children’s Hospital known as Families of Ocean Ward. 

More information on support groups specifically for young patients approaching transition is available on the transition page. There are also many support groups linked to individual medical conditions. 

If you would like information on a particular support group, please contact your cardiac nurse specialist team.

The Families of Ocean Ward charity is run by parents of children who have been treated on Ocean Ward at Southampton Children’s Hospital. The charity can provide emotional support to families of children referred to Southampton from antenatal diagnosis through to adulthood. The charity also provides equipment for the ward, such as saturation monitors, TVs, iPads, WiFi and parent beds.

The charity also provides an active online community on Facebook where parents can support each other through shared experiences, financial assistance for some families during long ward stays and information about other charities and useful services.

You can email the charity at [email protected], visit the website or search Families of Ocean Ward on Facebook.

Visit the Families of Ocean Ward website. 

The BHF website provides useful information about heart conditions, diagnosis and treatment. It also offers support for families and children and offers advice about preparing your child for a hospital stay.

Visit the British Heart Foundation (BHF) website.

LHM is a charity offering support and information for children and their families when a child only has half a heart (children with a single ventricle circulation). The website features parents’ and children’s experiences and includes a helpline, information and publications about feeding issues, travel advice, exercise and school information.

Visit the Little Hearts Matter (LHM) website.

 

Provides support and information for children and adults affected by heart arrhythmias and their families. It has downloadable child-friendly information about many aspects of treatment including information about implantable cardioverter-defibrillators (ICDs) , Reveal devices and pacemakers.

Visit the Arrhythmia Alliance website.

This charity aims to support and work with teenagers and young adults born with a heart condition by providing practical and emotional support and enabling them to take control of their lives and manage their conditions. See the website for information, support, advice and details of the charity’s helpline.

Visit the The Somerville Foundation website.

The Medicines for Children website is a partnership between the Royal College of Paediatrics and Child Health (RCPCH), Neonatal and Paediatric Pharmacists (NPPG) and WellChild. It provides useful information about medications used in children’s medical care.

Visit the Medicines for Children website,