Until two years ago, I had never heard of the conditions of pectus excavatum and pectus carinatum. They are peculiar conditions whereby a person’s sternum either sinks inwards (excavatum) or grows outwards like a pigeon’s chest (carinatum). It had completely slipped my mind that when interviewing my father for his own life story a few months earlier, he had mentioned in passing that my grandfather had been “barrel-chested”. There was no particular purpose for calling it out, other than it was odd. I thought nothing more of it.
It was only after Dad passed that I discovered the condition was present in my own family. Both of my sons have chest wall deformities, albeit these conditions only became visible with the onset of puberty. The eldest has pectus excavatum, the youngest pectus carinatum. The full double whammy. Dad would be incredulous to think that a genetic condition suffered by his Dad had bypassed him, my sister and I and had played out in his grandsons. I am glad he went to his grave unaware of the diagnoses that were to unfold.
What I didn’t expect to discover as I scrolled through Dr Google in a quest to self-diagnose the dip in my eldest son’s chest was that treatment for these conditions had been decommissioned by NHS England back in 2019. Meanwhile, treatment remained available in all devolved Nations and around the globe. I also didn’t expect the GPs in my local surgery to be quite so dismissive about the condition, claiming it to be simply “cosmetic”. Something that he “might grow out of.” This will sadly never be the case. I was however to learn that we were one of thousands of families across the UK, facing the same blank wall of information. Lost at sea with no compass for guidance. It felt terrifying.
In my thirst for information and a treatment plan, I stumbled across the wonderfully supportive Pectus group on Facebook – a group comprising over two thousand families and patients in similar situations to ourselves. They too were craving information, treatment pathways, support, information and guidance. There was a name that was consistently being mentioned in many of the posts online. Dr Joel Dunning. A consultant cardiothoracic surgeon based at James Cook hospital in Middlesbrough and someone who had been leading the charge to get treatment recommissioned on the NHS ever since the day it was dropped. Occasionally Joel himself would post on the group, creating that reassurance that at least someone out there cared about the plight of us all. He was clearly an expert in his field, vastly knowledgeable on all pectus conditions and he was offering his time free of charge to operate on patients so desperately in need of life-changing “Nuss” or “Ravitch” correction surgery. Patients meanwhile would need to foot the bill of paying for the hospital services, no drop in the ocean at approximately £10,000 per operation (Patients paying privately were having to find £20,000 to cover the cost).
I was astounded. In England, families were crowdfunding, running marathons, holding cake sales just to raise vital funds to support their surgeries. Meanwhile, patients in Wales, Scotland and Northern Ireland continued to receive treatment free on the NHS. For the less severely affected patients (the category of people that we sat in), Joel was also offering to put patients onto non-surgical programmes to correct their chests – supplying a device called a vacuum bell to correct PE and chest bracing to correct PC. This was ultimately the route we took and we remain exceptionally grateful for the fact we were able to seek treatment with Joel and his orthotics team.
Whilst NHS England remained adamant that Pectus is primarily a cosmetic condition, Joel and a multitude of Pectus patients were all too aware that the side effects are often far more debilitating – presenting both physiological as well as mental health aspects. Patients on the group complained about feeling breathless, dizzy. They spoke of their hearts not having the space to beat and their lungs feeling crushed, leaving them struggling to breathe. If the excuse to withdraw treatment was cost-based (using cosmetic as the excuse), NHS England was simultaneously haemorrhaging cash by sending the same patients off on futile pinball journeys around different NHS departments, being treated for non-existent conditions. The worst story I heard on Facebook was of a child being given open heart surgery when the only issue with his heart was trying to operate within a cavity that left 1cm between his sternum and spine.
The catalogue of social media posts enabled me to build up a picture over a period of months – both of what was going on and of how people were trying to circumvent the system which had failed them. In November 2022, The Society of Cardiothoracic surgeons (SCTS) announced on Facebook they would be holding an event at the Royal College of Surgeons on Feb 2nd 2023 with the aim of educating policy makers and families on the need to reinstate treatment for Pectus conditions. I spoke to a friend and PR specialist in charity work about the event and she suggested that the best way to stir the government into action was to pull on heartstrings. The seed of an idea was born there and then. Wouldn’t it be great if we could encourage pectus families and patients to open up and share their jarring stories in a book which could be shared at the event? I hoped I might at best get up to ten families on board and shared the “seed” with Dr Simon Kendall, Past president of the SCTS who jumped at the idea. He would support me in getting the book distributed with the powers that be within the UK medical institutions.
The response to my request posted on Facebook for Storytellers to share their Pectus journeys was overwhelming. No doubt a measure of the frustration and desperation felt by so many. By the end of December, I had collected stories from forty-one people, covering both the pectus conditions (carinatum and excavatum), spanning different ends of the age spectrum, male and female, some who had benefited from life changing surgery, some whose lives were being deeply compromised by not accessing surgery. People’s honesty was both humbling and hard-hitting. It was impossible not to feel moved to tears when editing the stories and collating them into what I knew would be an incredibly powerful book.
Just under a month later, one hundred copies of “Pectus and Me” (the title chosen by my son at the breakfast table) went to print. Aside from being shared with the Storytellers, they were sent off to a multitude of medical departments and government bodies including all four Royal Colleges of Surgery, British Association of Paediatric Surgery, Royal College of Paediatrics and Child Health and numerous other medical societies and groups. A true cross-functional approach since the symptoms of pectus touch a myriad of different health departments.
The event itself was humbling, bringing together surgeons, patients, the media and key stakeholders within the NHS. Several Storytellers from the Pectus & Me book shared their journeys and the impact in the room was palpable and stirring.
Incredibly, just a couple of weeks after the Pectus event, and in main down to the relentless campaigning from several Cardiothoracic surgeons and in particular, Dr Aman Singh Coonar (President-Elect of the Society for Cardiothoracic Surgery Great Britain & Northern Ireland) and Dr Joel Dunning (Consultant Cardiothoracic surgeon), the NHS specialist commissioning team agreed to reintroduce a patient pathway for Pectus patients with the most severe symptoms. The new NHS England Pectus Policy went live on April 11th 2023 with the first Multidisciplinary Team meeting reviewing patients in most need of treatment taking place at St Bartholemew’s hospital in London on April 17th 2023. At the date of this blog, fifteen patients have now been granted treatment for Pectus conditions, some of whom shared their own stories in the Pectus and Me book. Work is also now underway in setting up a second treatment hub in the North of England which is expected to open in early 2024.
There is still a significant way to go to ensure treatment is offered to all sufferers of pectus, regardless of the severity of their condition. Nevertheless, this has been one of the most rewarding projects I have ever had the honour of being part of. It also is testament to the power of patients and clinicians having one voice and the impact of sharing a story.
