Pectus Deformity Treatment: NHS Funding
(3 years, 12 months ago)
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Mr Simon Clarke (Middlesbrough South and East Cleveland) (Con)
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.
Christian Wakeford (Bury South) (Con)
It is a pleasure to serve under your chairmanship, Ms McVey. I thank my hon. Friend the Member for Middlesbrough South and East Cleveland (Mr Clarke) for bringing this important topic forward for debate. Similarly to him, I had a constituency case, which involved a 17-year-old girl. Using the Haller index, a value of 3.1 would normally be the threshold for requiring surgery. My constituent had a measurement of 9.6 and was told that her chest capacity was similar to that of someone aged over 100. Her chest capacity was so poor that she could not bend down to pick up the shopping, or go upstairs, without being out of breath. That cannot be right for a 17-year-old girl with her entire future ahead of her.
It is therefore a disappointment that the previous commissioning report suggested that pectus excavatum would not be covered by the NHS. I fully support continuing not to cover the more cosmetic procedures, but for the small cohort in question, which we estimate is fewer than 50, the surgery is a life-changing and potentially lifesaving procedure, especially when it is considered how small the cost is in comparison with most treatment.
I pay tribute to Dr Joel Dunning, to whom my hon. Friend the Member for Middlesbrough South and East Cleveland also referred. My constituent came across him purely by chance, while he was doing some great work during the first lockdown. Obviously elective procedures were cancelled, so he volunteered elsewhere in the NHS—as a nurse. My constituent was in the hospital seeking advice and treatment, and he overheard the conversation. Being an expert in the field he stepped forward and stepped up, and made a representation. My constituent has now had the surgery, as she and her family were in the fortunate position of being able to afford it. They should never have been in that position of having to do that, but her chest capacity has already improved dramatically and she is able to breathe and to walk without getting out of breath. She is still in a lot of pain and on morphine, but she is already feeling the improvements that she should have as a basic right.
It has been suggested that we carry out further studies and recommissioning, but because it is such a small cohort and there are so few experts in the field, it is very difficult to carry out individual studies. My hon. Friend’s proposal that we have a panel from which a surgeon can step forward and make representations on what procedure he thinks necessary and most likely to improve the lives of these young women is the best approach.
I have kept my comments extremely brief because I want to hear from the Minister about the great work that he is doing. I hope there will be more to offer. Again, I put on record my thanks to my constituent’s family, Dr Joel Dunning and to my right hon. Friend the Health Secretary for discussing this important topic for a small cohort of constituents in the middle of the second lockdown.
The Minister for Health (Edward Argar)
It is a pleasure to serve under your chairmanship, Ms McVey.
I am grateful to my hon. Friend the Member for Middlesbrough South and East Cleveland (Mr Clarke) for bringing to the attention of the House the issue of funding for the treatment of pectus deformity and the impact that that has on people with that condition. I also pay tribute to my hon. Friend the Member for Bury South (Christian Wakeford), who, in what is a week or two shy of being in the House for a year, has already made a huge impact on behalf of his constituents. I hope that, through him, I can wish his constituent well and a full and speedy recovery from her surgery.
Before I discuss the particular case and issue, I want to place on record my thanks and gratitude to the hard work of NHS staff across the country, who as always have gone above and beyond in supporting us all during the pandemic. We remain indebted to them for their service.
I also want to be clear that the Government have and always will support our NHS, providing it with the finance and resources it needs to continue to provide high-quality, life-changing care. As hon. Members will know, through the NHS long-term plan, we committed to and then legislated for increasing investment in the NHS by £33.9 billion in cash terms by 2023-24.
A fundamental principle of the NHS is that, for people who live in the UK, treatment is free at the point of need regardless of an individual’s ability to pay. That is the basis on which our NHS is built. At the same time, however, clinical commissioning groups have a duty to commission responsibly and to use the funding they have to deliver the best service they can to meet the needs of the overall local population. As such, there will be some treatments or services that are not routinely commissioned locally. These decisions can be difficult but must be subject to rigorous assessment. Surgery for those patients with severe physical complications arising from pectus excavatum is one such area, as my hon. Friend the Member for Middlesbrough South and East Cleveland set out.
NHS England Improvement—which I will refer to as NHSEI for brevity—recognised that a small number of patients might benefit more from surgery and, as my hon. Friend, set out has explored this area in depth. He mentioned that in August 2018 NHSEI launched a clinical commissioning group policy consultation for surgery for pectus deformity and sought feedback on that proposition for surgery for pectus deformity for all ages. In developing its policy proposition, NHSEI commissioned two evidence reviews to ensure that evidence-based surgical outcomes and psychological benefits were considered. The reviews considered whether scientific research has shown treatments to be of benefit to patients and whether its use represents the best use of NHS resources. In that context, I hear very clearly the points made by my hon. Friend about, in his view, the limitations imposed on that by the nature of the process and the evidence base.
As my hon. Friend set out, the findings of the NHSEI findings review concluded, after careful consideration, that for the surgical correction of pectus deformity there was not sufficient evidence to routinely commission that intervention. He has clearly set out his counterpoint to that position. The study, published in February of last year, noted that in most cases, although surgery can correct the chest wall deformity, surgical intervention does not always take. That is because the majority of people experience only mild physical or psychological symptoms associated with having a pectus deformity, according to the evidence put forward by the review. I understand that the review also discovered areas where further evidence was required, and NHSEI has been working with clinicians and the National Institute for Health Research to further build the evidence, to support commissioning decisions.
I want to be clear that although, based on the existing evidence, the current evidence base, surgery for this condition is not currently routinely commissioned, that does not mean that patients cannot access it if it is deemed clinically necessary in particular circumstances, as my hon. Friend the Member for Bury South was able to set out in the case of his constituent. There are processes in place to ensure that, if it is deemed clinically appropriate, patients can still access the treatment even if it is not routinely commissioned by the individual CCG. The process is, as he set out, the individual funding request or IFR, which can be an alternative route, although as my hon. Friend the Member for Middlesbrough South and East Cleveland set out, this clearly has not worked for Autumn.
I turn now to the particular circumstances of my hon. Friend’s constituent’s case. I am incredibly sympathetic to the case that he raises. I understand both his concerns and the need for pace in finding a solution to help Autumn. I will at this point, if I may, pay tribute to my hon. Friend. He is a doughty fighter on behalf of his constituents, as we have seen in respect of this case. We in the House are incredibly lucky, as are his constituents, to have him representing them. I would say that he has made very good use of what I hope will be a very short period of freedom from ministerial office, allowing him to speak in debates such as this. He has used that freedom powerfully once again on behalf of his constituents in bringing Autumn’s case to the House. I hope that his constituents will not take it amiss if I say that although I know that that has been incredibly useful to them and he has been a powerful advocate, as he always is, I hope that his freedom will be short-lived and he will return to the bonds of ministerial office soon, because he was a fabulous Minister while he was fulfilling his various roles.
I also want to place on the record my recognition of and tribute to the courage that Autumn and her mother Sarah have shown. It takes incredible bravery, incredible courage, to speak out and, as Autumn has done through my hon. Friend, to speak out under her own name and her family’s and her mother’s name. That shows a courage that it is very rare to see in any walk of life and in anyone, and I think it deserves recognition by the House. I hope that my hon. Friend will pass on to her my words in respect of that. She is an incredibly brave young lady.
Let me turn to the specifics of the points that my hon. Friend made. Although he will know, and it is only right, that I will caution him that decisions and the response on this of course sit with NHSEI and are not within my gift as a Minister to give, he makes an incredibly powerful case, so what I will say to him is that I am very happy to convey very clearly, as my right hon. Friend the Secretary of State has done, to NHS England and NHS Improvement and to the chief executive, Sir Simon Stevens, his and his constituent’s very clear request that the position be reviewed once again, with additional evidence considered. I will also put to them his very sensible, or what seems to me very sensible, suggestion of an approach in the short term and then in the longer term. As I have said, I have to be honest with him; I cannot make a commitment on what the NHS response will be, because quite rightly it is independent and will make those decisions itself. But what I can promise him is that I will put his case to it very clearly.
I can also reassure my hon. Friend that I am of course always delighted to meet him, and if he feels that it would be useful, I will be very happy to meet him again. We may do that in the next few weeks, while he enjoys a few more weeks of freedom from the red boxes, but I am very happy to do that for him, because this is an incredibly moving case. He has put the case in very human and very moving terms, but I suspect that, if I may put it this way, Autumn in a sense represents probably many more cases, as my hon. Friend the Member for Bury South has set out. They may not have felt able to come forward and may not be publicly known, but there are others who are in Autumn’s position and will be listening to what my hon. Friend the Member for Middlesbrough South and East Cleveland said. I pay tribute to him, as always, for his eloquence, but I have to say I am afraid that although he put the case very powerfully, Autumn’s words put it even more powerfully to the House. There will be people listening to what she said and identifying with that and feeling the same things, so I am always happy to meet my hon. Friend if he feels that that would be helpful.
To conclude, I will reassure my hon. Friends that we will continue to work with clinicians and researchers to build the evidence base and understanding of this condition, to support future commissioning decisions but also, hopefully, within the confines of the clinical evidence base and decisions by NHSEI, to be able to better help people like Autumn in the future. I am grateful to the House.
Question put and agreed to.