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Raising awareness of childhood condition to improve outcomes

3 May 2022

The newly crowned “Nurse of the Year” is calling for increased awareness of a little recognised condition in children in efforts to improve their treatment and outcomes.

Diane Palmer, Associate Director of Nursing at Norfolk and Suffolk NHS Foundation Trust, has just been handed the Nurse of the Year title by the British Journal of Nursing for her work with veterans and for setting up a COVID support mental health resilience hub.

Now Diane, a previous winner of the RCN Mental Health Nursing Award and RCN Innovations in Your Speciality Award, wants to take advantage of her latest accolade to raise awareness of paediatric acute-onset neuropsychiatric syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS).

PANDAS is a physical condition that manifests itself in a psychological way following repeated recurrence of Strep Throat,” Diane said.

“A simple test and then prescription of antibiotics can completely cure a child within a couple of weeks if diagnosed early enough. If left untreated the condition can worsen, affecting the executive function, brain or even the heart.”

Diane, who is based in Suffolk, explained that children can often be misdiagnosed when they are first taken to see a doctor.

“Parents visit the doctor because suddenly their child develops symptoms such as sudden onset tics, obsessive-compulsive disorder and eating restrictions, often combined with urinary issues and deterioration in handwriting,” Diane said.

“Many GPs are unaware of the condition and refer the child to child and adolescent mental health services (CAMHS). By the time the child sees someone, some six months later, the original trigger has gone and can’t be found, leading to a misdiagnosis.

“I have known parents of a four-year-old being told their child has psychosis, while others have been informed their child has autism.”

Diane said she wants to give a voice to the children and parents affected by these conditions.

“5,000 children are being failed, with their parents pleading for help and to be heard,” she said.

“I am trying to do something about this injustice, using my social media and bringing it to the attention of the NHS and MPs. It is all about collaboration and coproduction.”

Diane is working to set up a pilot multidisciplinary clinic in Suffolk bringing together practitioners from different fields to provide a holistic approach.

“GPs would be able to make referrals, allowing for a quick diagnosis and rapid treatment,” she said.

“This would provide better outcomes for families and prevent children and their parents being traumatised.

“There is a whole cohort of parents whose voices have been silenced - many of whom are accused of doing wrong, being over-anxious, over-exaggerating and being prone to hysteria.”

Diane, working with the RCN’s Professional Lead for Mental Health, Stephen Jones, has also joined the All-Party Parliamentary Group on PANS and PANDAS. She is lobbying for the creation of NICE guidelines for PANDAS to provide guidance for clinicians.

Stephen said: “With symptoms that can overlap with both mental and physical health, PANS and PANDAS appear to be under-recognised conditions.

“Having met with Diane several times over the past year, she is dedicated to raising awareness of PANS and PANDAS across nursing and beyond.

“All interventions we provide to people in our care must be underpinned by robustly evaluated research. It is vital that nurses have clear evidence-based guidance around how to best support people and their families with suspected and confirmed PANS and PANDAS.”

Diane added: “The hope is to raise awareness of PANs and PANDAS. GPs are discouraged from prescribing antibiotics and sometimes think the condition is purely psychological or a viral infection, but with short-term use of the appropriate antibiotics, the lives of the families affected can be changed for the better.”

She highlighted the importance of nursing staff in spreading the message and paid tribute to the “wonderful team” she works with. The COVID Staff Support Services Diane manages were finalists in the RCN Team of the Year 2021 Award.

“Nurses are the life blood of the NHS – flowing through all areas from A&E and mental health to GP practices. Although most nurses cannot prescribe, they can alert others to the possible symptoms of strep throat,” Diane said. “The more people who shine a light on PANS and PANDAS, the more children will be helped.”

Diane has also set up an international network for those involved in trauma informed care. The network holds monthly meetings for its 375 members coming from different areas such as mental health, perinatal and refugee charities.

Find out more about the British Journal of Nursing Awards here - BJN Awards 2022

For more information about PANS and PANDAS, please visit the PANS PANDAS UK website.

Page last updated - 06/05/2022