It was on this very Thursday, a year ago that something remarkable happened. One hundred copies of the book ‘Pectus and Me’ were shared with clinicians, the media, the head of NHS commissioning and importantly pectus patients and their families at a “Pectus Best Practice Event” held at the Royal College of Surgeons in London. The event was hosted by the Cardiothoracic society of Great Britain and as co-author of the book, I was invited to be a key speaker at the event, advocating for patients and their families who have been denied access to treatment by NHS England.
Pectus excavatum and carinatum are chest wall deformities that cause the chest to sink or grow outwards, causing many who live with the conditions to suffer from debilitating side effects such as chest pain, fainting episodes and breathing issues – to name but a few. In 2019, NHS England decommissioned treatment for pectus, deeming it to provide cosmetic benefit only. Knowing that the Pectus event in London would be an opportunity to influence key stakeholders on the matter, I wrote a book titled ‘Pectus and Me’ (credit to my youngest son for the name) which collated deeply powerful stories from forty one patients and families living with the condition. It is a condition that affects two members of my own family and something that up until two years ago, I had no knowledge about.
‘Pectus and Me’ was shared widely across all corners of the NHS, including all four Royal Colleges of Surgery, the British Orthopaedic Association, British Association of Paediatric Surgery, Royal College of Paediatrics and Child Health, British Thoracic Society and NHSE Specialised Commissioning. A group of Cardio-thoracic surgeons including Mr Joel Dunning had been spearheading the fight to overturn NHS England’s decision since 2019. They were able to share compelling medical evidence on the benefit of treatment for pectus conditions and the ‘Pectus and Me’ book helped to bring patients’ own experiences to life.
In April 2023, nearly four years since treatment was abolished on the NHS, a pectus treatment pathway was launched for the most severe cases, finally offering hope to hundreds of patients whose lives have been put on hold. Patients have been reviewed fortnightly by a Multidisciplinary team and St Bartholomew’s hospital in London was designated as the Centre for Pectus surgery in England. It has corrected over one hundred patients within the first year. In November 2023, a further surgical Centre for the North of England was approved. From January 2024, adults will be treated at South Tees Hospitals NHS Foundation Trust in Middlesborough, under the team led by Mr Joel Dunning and a Paediatric service is now also up and running at Alder Hey Children’s NHS Foundation Trust in Liverpool. In December, the NHS granted a further £1.9m funding for a RESTORE trial that will serve as the largest piece of research in the world to investigate the benefits of pectus treatment. It will be led by the Cardio-thoracic team at James Cook hospital and offer up the opportunity for a further 200 patients in England to receive treatment.
It is hard to believe that this level of progress has been made in just twelve months. It has been the culmination of the passion and drive of Joel Dunning, leading a wider team of clinicians and supported by an army of patients who have refused to adhere to a policy that was never fit for purpose. It has also helped to demonstrate the power of a collective voice, shared in a book.
The pectus campaign continues afoot. There is still much more to be done in terms of opening treatment pathways to less severe patients and educating general practitioners and paediatric services on the condition and treatment routes. Many patients still having to pay privately if they do not meet the stringent criteria, paying up to £25,000 for corrective surgery on their chests. I am also now working as part of a small team of people with a vested interest in pectus matters. We are in the process of setting up the first charity in the UK for pectus patients. Our hope is to create a support platform for fundraising, sharing information and continuing to advocate for patients to ensure that everyone gets the treatment they need and deserve. Watch this space…..
If you are interested in reading ‘Pectus and Me’ you can find an e-version on The Memory Shed website (on Bespoke Page) and on the Society for Cardiothoracic Surgery in Great Britain and Ireland website. It is now being widely used across the NHS to educate clinicians.
If you are interested in learning more about Pectus conditions and the new treatment pathway, please visit: Pectus Conditions | SCTS
