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We recently worked on a project to influence UK policy making in the NHS.
Treatment for Pectus conditions, where the chest can grow inwards (excavatum) or outwards (carinatum) was abolished by NHS England in 2019. The Memory Shed worked in collaboration with a group of patients and their families all desperate to receive treatment for these debilitating conditions. They bravely told their stories in the book “Pectus and Me” which was printed and cascaded to multiple health departments ahead of a UK Pectus event held at the Royal College of Surgeons in February 2023. The collective power of their voices used in conjunction with medical evidence provided by the Society of Cardiothoracic Surgeons has led to treatment for the most severe cases being reinstated in April 2023 with a wider treatment pathway now being put in place.
Please read about the story of “Pectus and Me” in the blog here.
Note
As of April 11th 2023, treatment for the most severely affected Pectus patients has been reinstated by NHS England. Work continues to broaden the treatment pathways for less severely affected patients England-wide.
Praise for Pectus and Me
"Pectus and Me" has simply been the most incredible project that has been led throughout by Lynne Evans. As a national society, we have been trying to advocate for patients with Pectus excavatum, so we decided to hold a patient engagement day. Lynne suggested this project to collate some personal stories but she went beyond our wildest imagination, pulling together 41 incredible stories. She turned these into a book in time for the event, providing such an incredibly vivid testimony of the plight of these patients. It is already turning the heads of members of Parliament and those in NHS England. She has worked tirelessly and rapidly on this project throughout and we are incredibly grateful for her very hard work on behalf of this previously voiceless group.
Dr Joel Dunning, Consultant Cardiothoractic Surgeon, James Cook Hospital, Middlesborough
Lynne used our story as part of the “Pectus & Me” book to capture how challenging it has been living with a chest wall malformation. We were amazed with the remarkable end result. It was put together beautifully and represented our community perfectly. Her guidance on how to present our story enabled us to show the full impact of our struggles to the readers and really promote support for our cause.
Becky, Mother of a Pectus Patient
Read Pectus and Me
Click on the link below to access the “Pectus and Me” ebook on the Society for Cardiothoracic Surgery in Great Britain and Ireland (STCS) website.
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