PANS and PANDAS

Selaine Saxby Excerpts
Tuesday 12th September 2023

(1 year, 2 months ago)

Westminster Hall
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Selaine Saxby Portrait Selaine Saxby (North Devon) (Con)
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It is a pleasure to serve under your chairmanship, Mr Dowd. I thank the hon. Member for North East Fife (Wendy Chamberlain) for bringing this important debate to the House.

As already detailed, PANS and PANDAS can change a family’s life overnight. That is exactly what happened to my constituent Neil Gilson and his family. His son Jack was 18 months old when he caught tonsilitis, and an otherwise innocuous childhood illness turned their life upside down. Jack went from being a normal and happy little boy to one who was aggressive and anxious. He struggled playing with his friends, would go days without wanting to leave the house, and would not speak a word for long periods of time. His illness was not limited to his mental health but affected his physical health, too; he lost his fingernails and toenails and had very little energy. Neil describes it as,

“it was like there was no-one there”

some days—far from normal behaviour for a young boy.

For years, Neil and his wife sought a diagnosis. Various behaviours were put down to Tourette’s syndrome, an allergy or even just normal behaviour for his age, but one morning, Neil heard a news story about PANS and PANDAS that matched Jack completely. His doctor had never heard of the condition, but after an appointment with a specialist and a course of antibiotics, they had their son back in just two weeks. That is what makes PANS and PANDAS so shocking. It is an inflammation of the brain that can be quickly and effectively treated with a course of antibiotics, but it is so little known that it is impossible to say how many parents’ concerns are being put down to other causes simply because their GP has never heard of PANS and PANDAS. Will the Minister bring in training and guidance, so that obtaining a diagnosis is no longer a matter of chance, and work to raise awareness among healthcare professionals and those involved in childcare, so that families do not have to go through years of anxiety and all the problems that come with an unwell child.

I pay tribute to Neil’s fantastic work in raising both awareness and money for PANS and PANDAS. Since 2019, he has swum marathon distances in Loch Lubnaig and in 2021 became the first person to swim across the Bristol channel from Swansea to Ilfracombe. He attempted to swim the 70 km length of Lake Geneva this summer; he was 56 km in when he developed hypothermia and had to be pulled out by his team, but he has vowed to try again next year. Regardless of the distance, Neil has raised a fantastic amount of money and awareness and will change the lives of many children like his son Jack.

I hope that us coming together today and highlighting the cases in our constituencies will in itself help to raise awareness, so that early access to those antibiotics is more widely available to children who may have PANS and PANDAS.