The team at the liver unit at Birmingham Children’s Hospital have worked closely with CLDF since they began 30 years ago. Professor Deirdre Kelly, who set up the unit, shares her thoughts on the charity.
On behalf of the BCH Liver Unit, I wish to congratulate Children’s Liver Disease Foundation on their 40 year anniversary.
CLDF has been intrinsic to the development and success of the Unit, from our early days to the current time.
We have always valued the support to our families and our staff and have been delighted to see how much our young people value your events and focused support.
CLDF funded our first ever Senior Lecturer, Dr Stephen Murphy in 1991, which made a real difference to the development of research in the Unit and greatly improved patient care.
Since then, CLDF has supported a vast number of grants and research fellows, many of which changed the landscape of liver disease in children. I pick out a few key projects.
- BPSU Audit – Led by Professor Kelly and Dr Patrick McKiernan looking at the outcomes of Extra Hepatic Biliary Atresia 1987 -88. Publications from this audit and support from CLDF resulted in a change of DH policy and centralization of surgical management for babies born with Biliary Atresia in the UK, leading the world in improving outcomes for children with this disease (link to BPSU study story)
- Genetic studies to identify the causes of rare disease, which led to discovering two new diseases (ARC syndrome VPS33B – Professor Kelly and Paul Gissen) and (TTC37 cause trichohepatoenteric syndrome – phenotypic diarrhoea in infancy)
- Screening for conjugated bilirubinaemia in neonates – Professor Kelly, which demonstrated it was possible to screen for liver disease in babies using liquid blood.
- Understanding the causes of graft damage in children after transplantation through three current projects (Nano-String Project – Professor Kelly and Dr Nicola Ruth;VAP-1 – Professor Kelly and Dr Steffen Hartleif; and DSA – Dr Girish Gupte and Professor Kelly.)
We have also valued Catherine Arkley and now Alison Taylor’s input into many national and international grants as members of our steering groups to very effectively represent the patient voice.
CLDF has worked closely with the multidisciplinary team at the Birmingham Women’s and Children’s Hospital writing information leaflets and providing support for families, not just in the UK but internationally through the European Reference Network, Rare Liver.
Lindsay Hogg, Principal Specialist Nurse at the unit, explains what the CLDF connection means to her.
Congratulations to CLDF on your 40th anniversary!
CLDF is very important and in many cases a crucial lifeline to our patients and their families.
I have worked alongside the charity to support our families with liver disease for over 20 years. First as a junior sister on the paediatric liver ward and currently as the Principal Specialist Nurse – Hepatology and Transplantation in the Liver Unit at Birmingham Women’s and Children’s Hospital
CLDF do vital work for our families, they are there for the really 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.
Having the family and young people’s support team available for families to contact has been 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 at the family conferences, fun days and residential trips have been priceless. Families benefit from the networking and peer support that CLDF provide at their events- families 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 transition process, encouraging young people to become independent from paediatric support services and enhancing the transition to adult services. Talk, Tell Transform videos 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.
I have been privileged to attend some of the residential events that CLDF have organised for young people, giving me insight into how liver disease has affected them and the influence it has on being a “teenager”. How do you tell your friends? How do you go to the pub? Young people have given me the answers and helped me support other young people – learning from each other and sharing experiences.
I witness on a daily basis the impact and work that CLDF carry out with parents, carers, children and young people. Not always the big things though they are important – grants to enable research to drive the care of these very special children and young people in the future. Sometimes the little things – a listening ear, someone to talk to and be there make a massive impact.
On behalf of the multi-disciplinary team – we thank you CLDF for the care that you give our patients and their families. We look forward to working with you over the next 40 years.
