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I have led a backbench business debate calling for greater recognition of the neuropsychiatric conditions PANS and PANDAS which affects children. There is currently no uniform recognition of the conditions in the UK and affected families typically struggle to secure support.
PANS and PANDAS affect children and are triggered by a misdirected immune response to an often mild viral or bacterial infection. They can result in a number of potentially severe symptoms including anxiety, tics, depression, developmental regression, symptoms of acute-onset OCD and eating disorders.
There is currently no uniform recognition or treatment for the condition in the UK. While WHO guidance recognises the condition and recommends treatment with anti-biotics, this has not yet been adopted by the NHS across the UK. As a result many children are being treated for their individual symptoms, often with anti-psychotic medication causing side effects.
You don’t need to be a parent yourself to understand how utterly distressing it must be for your healthy happy child to suddenly find themselves unable to leave their bedrooms, to dress, to eat, to talk to others, to attend school. To see your child vanish as the illness takes over. But sadly this is distress is compacted and worsened many times over by the lack of available support for patients and their families.
Globally PANS and PANDAS are recognised and treatment pathways have been set up. The World Health Organisation has explicitly acknowledge the conditions in their latest guidance. However as things stand, there is neither NHS nor NICE guidance as to the diagnosis or treatment of PANS PANDAS in any country of the United Kingdom. This leaves patients subject to an unfair and arbitrary lottery. All of the evidence suggests that the best treatment is early diagnosis and a two week course of antibiotics.”
The debate today was a hugely important opportunity to raise awareness of PANS and PANDAS which is currently sorely lacking. I am very grateful to the MPs who spoke in the debate, many of whom had also learned of the condition after being contacted by their constituents.
There was a great deal of consensus about the problems and the need for action, and the minister’s acknowledgement of PANS and PANDAS was very welcome. I am also grateful to the families and children I have met who suffer from PANS and PANDAS. They have been so brave in telling me about their experience. There is still a long way to go, but I hope that this debate is a step in the right direction.