Lindsay Hogg, Principal Specialist Nurse at Birmingham Children’s Hospital Liver Unit, explains how Children’s Liver Disease Foundation provides a vital lifeline to patients and families.
CLDF do vital work for our families, they are there for the difficult moments when families and young people are given life changing information. They provide support to parents, carers, children, and young people, both while they are in-patients, and when at home trying to “get on” with “normal” life. They are an active listening service for the families and young people, signposting as required to whatever support they need. They work with families at the crucial and important times in their lives, providing information for schools and for all important holidays! They provide information that gives families confidence to do nice things and make special memories.
The charity provides dedicated support for young people and their parents which can be critical for some families to cope with the emotional worries that go hand in hand with having a child with a chronic illness.
The opportunities to meet with other families, both virtually and in person is priceless. Families benefit from the networking and peer support that CLDF provides and make therapeutic relationships with other families to help them along the often difficult and unique journeys that they face.
Our transition team value the specific peer support for young people to aid the move from paediatric to adult medical care. Talk, Tell Transform videos Talk, Tell, Transform – YouTube are incredibly powerful pieces of film which remind us medical professionals about the importance of understanding our patients and the impact of their liver disease on life outside the four walls of the hospital.
The written information that CLDF has produced has helped families understand their child diagnosis and treatment plans, enabling them to feel part of the team looking after their child, empowering them with information.
We witness daily the impact and work that CLDF carry out with parents, carers, children and young people. The big things are obviously important – such as grants to enable research to drive the care of these very special children and young people in the future. But sometimes it’s the little things – a listening ear, someone to talk to and just be there which make a massive impact.
