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Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round

The Theatre Improvement Project

In 2018, Dr Alyson Walker, paediatric cardiac anaesthetist, NHS Greater Glasgow and Clyde, embarked on a transformative journey destined to reshape the landscape of paediatric surgery at the Royal Hospital for Children, Glasgow, and touch the lives of over 10,000 children each year. Guided by Dr Walker’s vision and in partnership with Glasgow Children’s Hospital Charity, the million-pound initiative aims to create a more compassionate and empathetic environment for patients, their families and the dedicated staff who care for them. Glasgow Children’s Hospital Charity has proudly committed more than £500,000 in funding for the ambitious project.

“For children, parents, and caregivers, visiting the operating theatre can be a daunting experience, whether it’s for a dental procedure or brain surgery. The stories that children and families share about their experiences in the theatre last a lifetime, so we want them to be positive.”

The centrepiece of the flagship project is an ambitious art installation by illustrators Laura Darling and Mark Faulkner. Stories from patients, families, communities and staff were collected and brought to life in artwork that will flow throughout the entire Theatre Department. Within each anaesthetic room, a family of 11 animals, chosen based on children’s feedback, is featured in the artwork. As children progress through the department, they will be able to spot these animals, creating a comforting and familiar connection. The zebra represents children who have rare conditions and their families.

Dr Martina Rodie, consultant neonatologist and member of the Office for Rare Conditions, Glasgow

Becky Pender, community engagement senior associate with RARE Revolution Magazine was part of the group that helped develop the project, with her daughter Hannah, who lives with several rare conditions. She has also been a member of the patient advisory group with the Office for Rare Conditions, based at the hospital since 2018.

“Hannah is a thrill-seeker and loves to play with her sisters in the park. She absolutely loves the wheelchair equipment, especially the roundabout and adapted swings. Seeing Hannah and other children who use mobility equipment represented in such a fun way is vital for inclusion.”

Dr Walker, Becky and Hannah
Hannah’s swings artwork

Office for Rare Conditions

The Office for Rare Conditions in Glasgow was opened in 2017 thanks to generous support from Glasgow Children’s Hospital Charity. As the only Office for Rare Conditions in Scotland, the Glasgow project is leading the way to improve the management of patients and families with rare conditions. Several thousand children and adults from around Scotland are treated for rare conditions in Glasgow’s hospitals each year, and the office will work to support the health care professionals and researchers who are involved in the care of these patients.

Through the Office for Rare Conditions, thousands of families also have access to groups that provide practical and emotional support to cope with the challenges of having a child with a rare or undiagnosed condition.

Since January 2023, Claire Dinning has been working with Office for Rare Conditions Glasgow as a patient navigator. Her role is the first of its kind in Scotland and she is working tirelessly to ensure equitable access to support for everyone affected with a rare condition. Glasgow Children’s Hospital Charity is proud to fund Claire’s role through grants provided by Health and Social Care Alliance Scotland. She has engaged with many families affected by rare, low-prevalence and undiagnosed conditions, offering support and signposting. Claire was also a finalist for 2023 Scottish Health Awards for the category “Tackling Health Inequalities”.

Claire Dinning, Patient navigator, Royal Hospital for Children, Glasgow

Every time a family receives the news that their child has been diagnosed with a rare condition, they receive a letter from the Office for Rare Conditions in Glasgow titled “A Warm Hug”. The letter, written by Becky Pender, is designed to tell families that while their condition is rare, that doesn’t mean support has to be hard to come by. The Warm Hug letter is just one way that charity funding helps families who have a child or children living with rare conditions.

You can read more about The Warm Hug Letter here.

Kirsten Watson, chief executive of Glasgow Children’s Hospital Charity said:

“Hundreds of children from around Scotland are treated for a rare condition at the children’s hospital each year. Rare conditions are chronic, often life-threatening, and can be very overwhelming for families faced with the unknown. Our Office for Rare Conditions is the only resource of its kind in Scotland, leading the way to improve the care and experiences of young patients with rare conditions. Many patients with rare conditions require a visit to the operating theatre, and the new empathic environment will help them feel calmer and more welcomed, as reflected in the artwork. Every step we take, every project we embark upon, is a testament to our dedication to improving the lives of these extraordinary children and their families.”

Hannah and Dr Walker admire the artwork
Hannah and Dr Walker play ‘spot the zebra’

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