Being diagnosed with and living with a congenital cardiac condition can be exhausting and emotionally draining for the children, young people, and adults that we care for, as well as their families. These families also have to deal with being given a wealth of information at all points in their care. In the current age, more and more patients turn to the internet for information, and many these websites carry false or anecdotal evidence, so it is important that we as nurses can point these families towards genuine websites to obtain information. The websites listed below also function as support groups and facilitate communication between families who are living with the same condition.
Little Hearts Matter http://www.lhm.org.uk
Little Hearts Matter are a national charity supporting families affected by the diagnosis of a single ventricle heart condition such as Hypoplastic Left Heart Syndrome. They offer a 7 day a week telephone support line, which out-of-hours is manned by parent volunteers who can share their own experiences. They facilitate a family linking service and hold open days so people can support each other and share ideas. They also have a large directory of publications and information booklets that cater to varying degrees of understanding.
The Children’s Heart Federation Children’s Heart Federation
CHF is a national charity championing children with heart conditions, wherever they live in the UK and whatever their condition. CHF provides a wide range of information sheets covering most heart conditions in children and on subjects related to their care. The popular Molly’s Dollies and books for children, provided by CHF, help children understand their heart condition and how it affects them. CHF also hosts the private forum Pulse parents and holds regular online events for parents and carers with a guest speaker answering their questions.
Lagan’s Foundation www.lagans.org.uk
Lagan’s Foundation deliver respite support for children with complex health needs, specialising in heart defects and feeding issues. Founded in 2012 by Carren, parent to Lagan, Lagan’s Foundation offers individual and flexible care services via 2 streams:
1.Donated care: 2 hours of specialised respite care in the home or hospital setting, to allow parents to take a well-earned break from their caring role.
- Eligibility: Children aged 0-5 who are not entitled to funded social care or continuing care packages and have no other form of respite provision.
- Funded: This service is sustained by donations, corporate giving and grants.
- Lagan’s Care: Providing specialised respite care for more than two hours per session, available during daytime, school hours, and waking nights. Offering 1:1 and 2:1 provision for families with children facing complex health conditions.
- Eligibility: Open to children aged 0-19 with various complex clinical health conditions, including but not limited to invasive and non-invasive airway management, TPN, epilepsy, and stoma care.
- Funded: This service is funded through private contributions, Personal Independent Payments or Local Authority Commissioning and NHS Continuing Care Commissioning.
Arrythmia Alliance http://www.heartrhythmcharity.org.uk/
Arrythmia Alliance is a coalition of charities, patient groups, patients, carers, medical groups, and allied professionals. Although these groups remain independent, they work together under the name of Arrythmia Alliance to improve awareness, diagnosis, and treatment of cardiac arrythmias. They provide links to local support groups across the country, have various campaign events not just in the UK but the USA as well, and have many resources for patients and clinicians.
If you would like your charity or organisation to feature here, please contact Kerry.gaskin2@bcu.ac.uk