I beg to move,
That this House has considered NHS funding for treatment of pectus deformity.
It is a pleasure to serve under your chairmanship, Ms McVey. I will also discuss e-petition 329161 on the same subject, which I am delighted to say has been signed by more than 6,000 people, including 183 from Middlesbrough South and East Cleveland. I thank everyone who has taken the time to sign the petition, as well as its organisers.
The lack of treatment for pectus excavatum on the NHS is an issue by which I have been deeply moved and for which I am determined that we should deliver lasting change. The situation as it stands amounts to an injustice for a young girl in my constituency and many more like her across the country. It is, however, a matter that can be simply solved. The solution would not be particularly expensive and is not controversial, so I sincerely hope it attracts ministerial support.
About six weeks ago, I was contacted by the parents of Autumn Bradley, a 14-year-old girl from Guisborough who suffers from pectus excavatum. Caused by an overgrowth of cartilage, the condition means that as she grows, her breastbone is being pushed inwards towards her spine. In her case, that inward growth has advanced to the point where her sternum is now just 25 mm from meeting her spine.
For many people living with less severe forms of pectus, its impact is predominantly psychological, but for Autumn, the condition has been nothing short of life-changing. Her parents have watched the physical condition of their once active, energetic daughter deteriorate beyond recognition. Growing up, she excelled at athletics and competed at county level, but today she struggles to blow up a balloon. Complications of the condition have led to numerous hospitalisations, so her school attendance and academic performance are being increasingly affected. It now causes her pain even to hiccup.
Treatment for the condition is effective, routine and widely available across the developed world. It is available free of charge on the NHS in Scotland, Wales and Northern Ireland, but since early 2019, it has not been available to patients in England. Because about 90% of surgeries to treat pectus are deemed to be cosmetic, last year the decision was made that the treatment would no longer be funded by NHS England.
Ruling out treatment for psychological reasons is a debatable proposition, but it is not inherently unreasonable. What is unreasonable is that the 2019 NHS policy document is clear that treatment for pectus will not be available, irrespective of the seriousness of the symptoms. As a result, Autumn’s surgeon, Mr Dunning, has found it impossible to make the case for treatment on an exceptional basis, even in cases where the physical impact of pectus is as devastating as it is for Autumn.
Mr Dunning is based at the wonderful James Cook University Hospital in my constituency. He estimates that, as a result of this situation, about 50 patients a year in England—overwhelmingly teenagers—are left suffering life-limiting symptoms that could easily be fixed. The symptoms include shortness of breath, heart rhythm disturbances and even episodes of collapse.
Mr Dunning spoke recently on BBC Radio Tees about how the current NHS policies affect Autumn:
“I believe it is a complete disaster and a mistake that we cannot turn this around. We’ve found it impossible to change it. We’re looking for anything we possibly can to try and get this poor short-of-breath person an operation. I couldn’t be more confident in being able to fix this poor girl with an operation”.
He said that if he were allowed to carry out the procedure, Autumn would be in hospital for four days with three weeks to recover at home, and after that,
“she’ll be a new person for the rest of her life.”
The average cost of surgery to correct pectus deformity is between £7,000 and £16,000. Treating 50 such patients a year would therefore cost less than £1 million, which, in the context of the wider NHS budget, is a minute sum of money.
Mr Dunning’s passion for helping patients such as Autumn has led him to campaign extensively on the issue and to dedicate a significant amount of time to supporting those affected. His commitment to her care and that of her fellow pectus sufferers is beyond all praise. He represents the best of our national health service. I am equally grateful to BBC Radio Tees and campaigning newspapers such as TeessideLive and The Northern Echo for helping to raise the profile of the issue.
What, then, has gone wrong with the NHS commissioning process? The process, which began in 2015, resulted in a 2018 literature review that considered only six papers, all of which focused on the psychological benefits of surgery. It resulted in the following judgment:
“The evidence that was found is not sufficient to conclude that the physical, psychological, social and behavioural benefits of surgical treatment of pectus deformities are sufficient to justify its use.”
That is despite the fact that the final policy document acknowledged:
“The impact of a pectus deformity can vary substantially, ranging from mild and symptomless to severe and impacting on both lung…and heart…function.”
During the consultation process, the Society for Cardiothoracic Surgery submitted nine additional papers that it felt contained important evidence that should be considered. All nine were rejected, some for what seemed dubious reasons. One study of 168 patients from the United States was rejected on the grounds that a single surgeon performed all the operations, yet most of the papers included in the 2018 review are single-centre studies, and one included paper is explicitly a single-surgeon case series. A 2015 NHS England policy document stated, with reference to previous papers from 2007 and 2010:
“Leading US centres report inclusion criteria for surgery as severe pectus excavatum that fulfils two or more of the following: CT index greater than 3.25, evidence of cardiac or pulmonary compression on CT or echocardiogram, mitral valve prolapse, arrhythmia, or restrictive lung disease”.
For reasons that are unclear, those impacts were not considered by the 2018 literature review. I find it concerning that a submission was not corrected even when highlighted by thoracic surgeons.
The case for allowing surgery for more extreme cases of pectus seems clear, based on the expert reviews that I have seen, which show measurable improvements in cardiopulmonary function in patients with a Haller index of between 4.5 and 5. The Haller index is used to describe the severity of an individual’s pectus deformity. I will outline those reviews, and it is worth remembering that Autumn’s condition is far more severe: she has a Haller index of 9.7.
A 2011 French study of 120 severely affected patients with a mean Haller index of 4.5 showed that surgery delivered sharply improved heart function. Prior to surgery, the maximum rate of patients’ oxygen consumption was just 77% of their age-predicted maximum. One year after surgery, it had increased to 87% of their age-based prediction. A 2013 Danish study with 49 patients with a mean Haller index of 4.9 showed that patients with pectus had a 20% lower cardiac index than healthy control patients of the same age prior to surgery. Three years after surgery, the cardiac index of treated patients had normalised to be similar to the controls.
I am clear that the NHS commissioning process has failed on this occasion. It has excluded crucial evidence about the benefits of pectus surgery for those presenting severe physical symptoms, and it is written too prescriptively to allow any discretion for individual funding requests. Autumn has already been rejected for an IFR twice, despite her life being made an increasing misery by the condition. I defy anyone to explain how in severe cases such as Autumn’s a normal, healthy life is possible without surgical correction of the deformity.
I pay great tribute to Autumn and her mum Sarah. Until now, Autumn has been known publicly as Katie to protect her anonymity, but ahead of this debate she has bravely waived that anonymity for the first time. She has asked me to share with the House, in her own words, how her life has been affected by the condition. She said the following:
“For as long as I remember I have had pectus excavatum.
When I was younger I embraced it as it made me unique. It didn’t affect me massively.
I loved sports, I ran and did long jump for the County competitively, I surfed, climbed mountains, played football with friends, went to scouts and much more.
I spent free time caring for animals in a pet rescue. However as the years went on, my pectus has got progressively worse.
The dent deepened. I began to suffer with my health. Every cold I had went on my chest and needed antibiotics and steroids and I often ended up in hospital.
I began to miss massive amounts of school and all the things I loved.
Fast forward to now. I can’t do any sports, all the clubs I loved have gone. I feel so tired constantly, my ribs and back are in so much pain I take painkillers all the time, but it still hurts.
I can’t breathe.
I can’t take a deep breath—it feels restricted and like my chest is being crushed and I can feel my sternum touching my spine.
Climbing stairs leaves me breathless. I don’t even attend school now.
My dream was to be an athlete or a nurse, my chance of the first dream is gone.
I’m so worried about what the future holds for me as my school grades will start to suffer.
All I am asking is that you reconsider the decision not to offer pectus surgery as it would give not only me, but lots of teens like me, a chance of a normal life like those who are not born with this condition.”
What should be done? I am grateful to the Minister for his time and the consideration he has given the issue in the days leading up to the debate. He is an excellent Minister, and I am all the more grateful given the many other demands on his time because of the wider national situation. Likewise, I am thoroughly appreciative of the time that my right hon. Friend the Secretary of State for Health and Social Care gave me a fortnight ago. He could not have been more attentive, and he joined me and my hon. Friend the Member for Bury South (Christian Wakeford) in a good discussion about what we might do to move the situation forward. Last week he raised the matter personally with the NHS chief executive Simon Stevens.
My central request is that the NHS should be asked to reconsider its wider policy on the issue as a matter of urgency. While such a review is being conducted, and in the interim, it would be fantastic if a holding position could be established, by which there would be a facility for surgeons to appear in person to discuss the evidence for pectus surgery in the most severe individual cases—effectively a kind of extraordinary carve-out from the wider policy. That would reflect a suggestion made by four of the five stakeholders during the commissioning process. It would make sense to allow that subset of severe patients to be identified so that selected centres could perform the operation on the NHS and report their findings in a registry. That commissioning through evaluation would allow a continuation of surgery for that small subgroup, along with monitoring of the impact of the surgery, and the provision of valuable new data to inform a wider policy review.
That would offer both a short-term and a medium-term solution to the issue. No one expects a miracle solution overnight. The process of NHS commissioning is rightly complex and independent. None the less, we should try to kickstart the process today. I should be happy to meet further with the Minister or his officials, but the current policy on pectus excavatum is not right, and it should not continue. I agree with Autumn and her parents, and with experts in the field such as Mr Dunning, that there are cases where pectus surgery is anything but an aesthetic choice. For a small group of young people in this country, it is the only route to anything resembling a normal life, and we should restore the treatment free at the point of need at the earliest opportunity.