Undiagnosed children's day

Posted by
Roald Dahl's Marvellous Children's Charity
Posted on
2:30pm, 28th April
Roald Dahl nurse Anna

Hear from Roald Dahl nurse Anna about her work with children who have Syndromes Without a Name (SWAN)

Today is Undiagnosed Children's Day and one year on from taking up her post as Roald Dahl SWAN Clinical Nurse Specialist at Great Ormond Street Hospital (GOSH), we learn from Anna how challenging it can be for the families of children without a diagnosis.

“The most challenging thing about not having a diagnosis is living with uncertainty and fear of the unknown.  Families describe how isolating it can feel having a child with no diagnosis.  They often feel like people do not believe all the problems they report as it can often not be explained.

Not knowing another family who are in the same position as themselves, or not knowing another child with the same problems can contribute to the family’s sense of isolation, and the multiple trips to hospital for different appointments is wearing for everyone in the family.”

Anna’s pioneering role, funded by Roald Dahl's Marvellous Children's Charity, focusses on supporting these families and coordinating care.  She attends outpatient appointments with families if they have a particular worry or if they need someone to help them understand and remember what is being said.  Families can be overwhelmed by the complexity of their child’s condition and it can be difficult to take in all of the information offered in an appointment.  Anna also liaises with the multiple specialist teams at GOSH and the child’s local hospital, community teams and schools, to improve communication and lead to a better experience for the child and their family.

As one parent says: “I think what Anna does is brilliant.  Anna also thinks about small things.  My daughter often cries at appointments, so last time Anna arranged for a play worker to meet us.  I wouldn’t know you could do that.  I thought she would be a point of contact but she does so much more than that to support us.”

Roald Dahl’s Marvellous Children’s Charity is proud to be working with SWAN UK and Great Ormond Street Hospital to support the families of undiagnosed children.  We are grateful to St James Place Foundation for their funding towards this important nursing post.