Nursing children with nameless conditions

3 Aug 2018, 11:26 a.m.

Anna Jewitt, Roald Dahl Clinical Nurse Specialist for children with syndrome without a name

During Paul O’Grady’s Little Heroes, we’re shining a spotlight on the wonderful staff across the hospital who help children get better and fulfil their potential. Anna Jewitt, a Clinical Nurse Specialist, featured in Episode 1.

Great Ormond Street Hospital (GOSH) often treats children with the most rare and complex conditions. As the hospital's Roald Dahl Clinical Nurse Specialist, Anna Jewitt looks after children with conditions that are so rare, they don’t have a name.

Children with syndromes without a name (SWAN) have lots of medical needs and will visit specialist departments across the hospital. Anna explains that this can be overwhelming for families, “I help coordinate their care, because they are often under multiple teams at GOSH and so [I'm] a point of call.

“[Families] feel quite isolated, because they’re under so many teams, they need that someone who’s there to give them emotional support for the child as a whole.”

Lara is one of the patients who Anna looks after. She is nine years old and was previously diagnosed with hemophagocytic lymphohistiocytosis (HLH) – a potentially life-threatening blood disease.

Thanks to chemotherapy treatment and a successful bone marrow transplant at GOSH, Lara is now free of the condition. However, her growth is impaired – Lara has a very rare form of skeletal dysplasia and as of yet she has no diagnosis for this despite ongoing investigations. This means she is smaller than other children her age.

Lara continues to visit the hospital for treatment under the SWAN team. She loves drama, music, singing and playing the violin.

Raising awareness of SWAN 

For Anna, being involved in the filming of Little Heroes was all about raising awareness of SWAN among the public and the medical community.

“Even professionals will say ‘what’s a SWAN?’” she says. “Before I did this job, I didn’t know how many children there are without a diagnosis.

“I think it’s really important that awareness is raised for these families because they often feel that people don’t understand them at all.”

Anna also wants people to take away the fact that many of these patients are still just children and young people – and want to be treated as such.

“Lara, the young girl being filmed, wanted [people] to know that just because she’s short, she’s still a nine-year-old girl. When she sings, she is able to show she is a nine-year-old girl, but people might look at her and think she was a two-year-old, because of her height. There’s a lot of things people still don’t understand and perhaps don’t like to ask about children without a diagnosis. So I think getting a chance to tell her story is really important.”

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