The UK’s first specialist nurse for undiagnosed conditions is to be based at Great Ormond Street Hospital for Children Foundation Trust, following campaigning by a mother whose son has an unidentified genetic condition.
The new syndromes without a name (SWAN) nurse post has been championed by Renata Blower, who realised there was no specialist nurse available to provide oversight of care for her son who has a rare, unidentified condition.
Ms Blower described her experience with her son Dominic as being “the loneliest and scariest of my life”.
She said: “No one could tell me if my baby was going to live or die, they couldn’t even tell me what was wrong with him… It was awful, like being stuck in a living nightmare with no one to turn to for support. It was even harder when we went home.”
“No one could tell me if my baby was going to live or die…It was like being stuck in a living nightmare with no one to turn to for support”
It is thought that around 6,000 children a year are born in the UK with a genetic condition that is likely to remain undiagnosed.
Ms Blower said she expected the new specialist post would be a “lifeline” to many families.
“This is the first step to ensuring proper support for very vulnerable families who have children with some of the most complex medical needs and disabilities in the country,” she said.
She added: “I hope this is just the start and we will be able to roll this out to other specialist children’s hospitals very soon.”
“This [new role] is the first step to ensuring proper support for very vulnerable families who have children with some of the most complex medical needs and disabilities”
Over the next few months the role will be developed jointly by children and their families with the trust’s Centre for Outcomes and Experience Research into Children’s Health, Illness and Disability. It is hoped the new position will be in place early next year.
The role has been made possible through funding from Roald Dahl’s Marvellous Children’s Charity and St James’s Place Foundation.
Richard Piper, chief executive of Roald Dahl’s Marvellous Children’s Charity, said: “By creating this unique Roald Dahl SWAN nurse post – and showing the difference it makes – we are championing these thousands of overlooked children and families, and helping to create genuinely child-centred care.”