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Working hand in hand for 20 years

As well as being the 40th birthday of CLDF, 2020 marked the 20th anniversary of the specialist liver unit at Leeds Children’s Hospital, which was established after the Department of Health ruling that paediatric liver surgery should be confined to specialist regional centres.

Originally a 10-bed unit as part of St James’ hospital, the unit moved to its current site in 2010, and is now a combined liver and renal transplant unit which can accommodate up to 16 patients at a time and undertakes around 20 liver transplants each year.

The Leeds paediatric liver unit team in 2000

Lisa Beaumont, Therapeutic and Specialist Play Manager at Leeds, who has been a part of the unit since the beginning, says that CLDF have always been very supportive.

“I was a play specialist here when we opened and I remember CLDF providing resources – including play resources – to ensure that the unit was less clinical and more appealing to children,” she says. “The charity has continued to fund materials over the past 20 years, most recently new play equipment, television monitors and a new fish tank – the first thing patients see as they come onto the ward.

A fish tank was one of the latest items CLDF provided for the Leeds liver unit.

The Leeds team are keen to stress, however, that the relationship is about more than funding. Clinical nurse specialist, Lynne Henderson, who has been with the unit for 17 years, recalls helping to produce CLDF’s information leaflets. “I would go to meetings at the Birmingham office where we would discuss and agree the content,” she says. “It was very important to me that parents had as much information as possible presented in a way they can understand and I’m pleased CLDF produce such a wide range of literature. We still give them to all our families after diagnosis and I find them invaluable.

“In the early days of the unit, we would also collaborate with CLDF on study days, when health professionals from around the region would come to learn about childhood liver disease. They were so useful because most nurses in the community rarely came across a case and it really helped us educate professionals to spot the signs of biliary atresia.

The team at Leeds have also played a regular part in CLDF’s national conference over the years. “We’ve always appreciated being involved in the conferences”, says Lynne. “It’s great seeing so many families at once and being able to work together to provide something of real value to them.”

During 2017 Lisa worked closely with CLDF on developing Joe’s Transplant Story, the book which is used to help explain the transplant process to young patients and their siblings. “I was really happy to get involved with this – it’s just a brilliant resource,” she says. “I use it as a tool when preparing young children for transplant. And our parents find it so helpful that we have now recorded it as an audio book so that they can replay it again and again.”

CLDF’s transplant story book is a useful resource for the team

For older patients, the looming transition to adult services can cause anxiety and is another area where the hospital and charity have collaborated. “CLDF helped fund the first youth worker at Leeds and more recently they kindly allowed us to use some of their resources in the transition folders which we developed to provide health advice and guidance for young people,” says Lynne.

“Now we like to involve CLDF in our transition clinics as they can reassure young people that they are still there for them, wherever they are having their medical appointments. Since the pandemic, staff can’t attend in person, but Michelle from CLDF attended our last transition clinic virtually and it worked really well so we’re planning to do that again.”

Michelle from CLDF joined the Leeds team for the launch of the transition folders

“Working with charity partners is hugely beneficial to us”, adds Lisa. “CLDF have been by our side from the start and they complement the work which we do. It’s great to see them at the Transplant Games, knowing they are supporting our families. And it’s the reason we always join in Big Yellow Friday. There are currently plans in the pipeline for a new children’s hospital in Leeds in the next five years and we know that whatever that means for our unit, CLDF will be involved.”


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