Cystic Fibrosis Charity donates final fundraising to continue life-changing legacy at Sheffield Children’s Hospital

Caring for Cystic Fibrosis (CFCF) was set up in 1989 by a group of parents to provide relief for young people with Cystic Fibrosis and their families at Sheffield Children’s Hospital.

Bringing together clinicians as well as local businesses, it initially supported the Cystic Fibrosis team by funding specialist nurses and physios at the hospital and in the community.

In 2001, Alan Cassidy joined the group as a trustee and treasurer, after being moved by the care his daughter Becky received at Sheffield Children’s Hospital.

Alan, 48, from Sheffield explains: “When Becky was born, her bowel had perforated which caused massive inflammation and infection in her stomach. Within four hours of coming into the world, she was transferred to Sheffield Children’s Hospital.

“She was acutely unwell, and they were confident from the outset that it was Cystic Fibrosis.”

Becky would go onto spend a month in the Neonatal Surgical Unit (NSU) at Sheffield Children’s Hospital before she was able to go home. She then required ongoing care throughout her childhood, attending frequently.

“I had great care at Sheffield Children’s Hospital, we always had everything we needed” Becky, now 19, recalls. “It is a very close-knit team; you get to know all the staff and they become like family. I’d just like to thank them for being kind and always being there for me.”

Becky’s treatment and a determination to improve the experience of other families in the same situation inspired dad Alan to become a trustee and treasurer of CFCF:

“It was a team effort, made up of lots of parents, relatives and clinicians who gathered the support of local businesses to make a difference. By the time I became involved, the care for Cystic Fibrosis was already changing.

“In 1999, a dedicated unit for Cystic Fibrosis opened at Sheffield Children’s- previously patients were treated across several different departments. As the NHS recognised the need for dedicated care, the vision for the organisation changed to providing community staff as well as medical equipment and improvements to the Unit.”

The Cystic Fibrosis Service at Sheffield Children’s Hospital sees children up until the age of 16 from Sheffield and the wider region. It is 1 of just 13 specialist centres in the UK, helping patients maintain independence, improve their quality of life and extend their life expectancy.

To support the unit, CFCF funded portable nebulisers, which are machines that converts liquid medicine into a fine mist or spray to be easily breathed in by a mask or a mouthpiece.

A mural on the ceiling was also funded to distract young patients during traumatic treatments and video games consoles for use within the isolation rooms, where young patients have to go for clinic visits to avoid cross-infection on the unit.

Becky is now currently studying to become an Operating Department Practitioner, to support patients before, during and after surgical procedures.

“I’m really proud of all my dad did to help the Cystic Fibrosis Unit at Sheffield Children’s and I just want to be able to give something back to the NHS too.”

As the children of the trustees transitioned into adult care, the decision was made to hand over the remaining fundraising of more than £73,000 to The Children’s Hospital Charity, for the Cystic Fibrosis Unit at Sheffield Children’s, to help fund enhancements above NHS provision.

Explaining the decision, Alan added: “We all felt it was the right time. The Children’s Hospital Charity and our objectives are completely aligned, which are fundamentally to support the CF Unit and improve the experience of patients.”

David Vernon-Edwards, Director of The Children’s Hospital Charity added: “Caring for Cystic Fibrosis has made a substantial contribution to the Cystic Fibrosis Unit at Sheffield Children’s Hospital over more than three decades. The dedication of the parents involved in fundraising in their spare time is inspiring.

“We are honoured to continue their legacy of life-changing work. The money will be dedicated solely to the Cystic Fibrosis Unit, which will enable us to continue improving the equipment and environment for patients under the care of Sheffield Children’s Hospital.”

To find out more about The Children’s Hospital Charity’s work transforming Sheffield Children’s Hospital, visit www.tchc.org.uk