Aortic Dissection: Patient Pathways and Research Funding

I beg to move,

That this House has considered patient pathways and research funding for aortic dissection.

It is a pleasure to serve under your chairmanship, Mr Pritchard. After many applications, I am delighted to have secured an opportunity to have this very important debate. Hon. Members may be aware that this is an extremely difficult and personal topic for me, but I hope that sharing my experiences will prompt action that could save lives in the future.

I will begin with a case study, which happens to be my personal story, then move on to what we do in this place to improve patient pathways and research funding for aortic dissection. Before I do so, I must draw the House’s attention to my entry in the Register of Members’ Financial Interests: I am an unpaid trustee of the Aortic Dissection Charitable Trust, a charity that I helped to set up.

In the early hours of 11 December 2018, I received a phone call that no mother would ever want. I was told that our son Ben had died. Four years later, we all still feel numb. It seems implausible that Ben, a gregarious 44-year-old with two children and a loving wife, will not simply walk back into our lives. Ben died after suffering an aortic dissection. He had been feeling unwell the previous day, but was sent home after spending four hours in A&E and told to return the next day if he did not feel better. Tragically, the emergency doctors had not understood his symptoms and had not come up with a diagnosis.

Aortic dissection is a tear in the aorta, the body’s largest artery, which carries blood from the heart to the brain, limbs and vital organs. It is a condition that affects approximately 4,000 people a year in the UK and, like Ben, almost all of them are unaware that they have it. Half of them—almost 2,000 people—die soon after the dissection occurs, which is more than die from road traffic accidents in this country. Five hundred of those who die reach hospital, but sadly, as in Ben’s case, their condition is not diagnosed quickly enough, or at all. The other 1,500 die almost immediately after the acute event.

Many of these deaths are preventable. With proactive genetic screening for family members of those who have suffered an aortic dissection and with better treatment of high blood pressure, many of these deaths could be avoided. I am delighted to learn today that the Minister of State, Department of Health and Social Care, my hon. Friend the Member for Colchester (Will Quince), has announced a fund of £175 million for cutting-edge genomics. As a charity, we would be happy to work with the Department on this issue.

I have to admit that, like most people, I knew nothing about aortic dissection before Ben died, but knowing what a gap his death has left in our family I have immersed myself in efforts to prevent other tragedies. In late 2020, with the eminent cardiac surgeon Graham Cooper and the long-time aortic dissection campaigner, patient and public voice co-ordinator of the NHS cardiac clinical reference group, Catherine Fowler, whose father died in Ireland from this condition, I helped to set up the Aortic Dissection Charitable Trust. I am delighted that Graham and Catherine are in the Gallery and listening to the debate. The trust is now a leading UK-registered charity that aims to unite patients, families and the medical community. Our mission is to improve diagnosis, increase survival rates and reduce disability caused by aortic dissection.

The hon. Lady is making an incredibly passionate and personal contribution to the House. We all recognise that this is a subject very close to her heart, and we recognise her passion and commitment.

I thank the hon. Gentleman for his intervention. It is important that all parties work together to make this better.

First, I encourage the Minister to see what more can be done to increase and improve data collection around aortic dissection, to make as much of the data as possible publicly available to assist with clinical research. Secondly, I would like to focus on improvements that we can make to the patient pathway. The single most important improvement is in diagnosis. For those accurately diagnosed, more than 80% survive.

I will come back to how we can focus research funding. For now, I would like to emphasise that increased research funding for diagnosis is required. The other improvement on diagnosis that the Government can make is to ensure that doctors in emergency departments receive adequate training and advice on the symptoms of aortic dissection and how to spot a potential case. A freedom of information request recently showed that only half of NHS trusts  had a policy or procedure concerning the diagnosis of aortic dissection in the emergency department and that only a small proportion used the guidelines from the Royal College of Emergency Medicine or from the Royal College of Radiologists. The charity is doing a huge amount to educate medical professionals. Can the Minister comment on what central guidance has been made available from the NHS for emergency departments?

The launch of the NHS aortic dissection toolkit, which I mentioned, is incredibly important, but it only covers the patient pathway from the point of diagnosis to treatment and does not cover diagnosis itself. Can the Minister commit to considering extending that toolkit or working with experts and the charity to design and develop a new toolkit for diagnosis of aortic dissection, which can be rolled out in all emergency medicine settings around the country?

I pay tribute to my hon. Friend’s bravery in bringing this debate to the Chamber. I know that she has been through a lot personally. As she says, no parent would want to experience the death of a child as a result of aortic dissection and her subsequent and recent work to bring this debate here and her work with the charity is commendable. I am sure that it will lead to many lives being saved in future.

On the point about diagnosis, I remember from my days in the emergency department that fast scanning, which is a simple technique that uses an ultrasound scan to check for free fluid in the abdomen, was a very important tool that we could use to detect aortic dissection. It is a simple thing to train ED doctors to do, but that training is not available in the way that it should be. Will my hon. Friend join me in pressing the Minister to ensure that the focus is not always on service delivery in ED? If we are going to have good clinicians, we need to have the right training for them and this is an area that would save lives. Can the Minister put some funding aside specifically for that purpose?

I thank my hon. Friend for his intervention, knowing as he does what it is like to work in an emergency department. A lot of people come through the department, but the study he refers to about the abdominal aortic aneurysm was only for men of a certain age. This affects people from 17, or even younger, to 90. Although that sounds like a good idea, I am not sure that it would work in practice. We need more CT scanners used more frequently in emergency departments, and that is what is missing in part from emergency medicine settings.

The next phase in the patient pathway for those who have been correctly and speedily diagnosed is treatment. As I mentioned, 80% of those diagnosed survive. That is not enough and research is ongoing into better methods of treatment. However, one area where we can certainly improve is long-term treatments that do not require further medical interventions. There is currently a call for research proposals into that from the National Institute for Health and Care Research. That is excellent news and I encourage the Minister to make as much money as possible available for this area of research.

After treatment, it is imperative that the follow-up treatment for aortic dissection patients and their families is of the highest quality. Two thirds of survivors of aortic dissections have some kind of post-traumatic stress disorder. They need specialist treatment by somebody who understands their conditions. Furthermore, aortic dissection survivors have a long-term condition that places them at risk of future complications. They need to be monitored by specialist teams and currently, that provision is highly variable. Teams exist in some specialist hospitals, but not all patients are reliably followed up, and too often that is a failure to take a holistic approach to follow up. The employment of specialist nurses in every aortic centre, similar to those in cancer and palliative care, would greatly strengthen follow-up.

On the point about genetics and screening, the Health and Social Care Committee, which I chair, will be doing a big inquiry next year on prevention, and one of the things we will be looking at is upstream prevention for cancers and some of the other big killers. I extend the offer to my hon. Friend and the charity to get in touch with us when we launch that inquiry to give evidence on the screening that they are proposing. We would be interested in looking at that and to take evidence in written or oral form. That inquiry is all about saving lives. What she has said makes a lot of sense to me—it could do just that.

I thank my hon. Friend. I am sure the charity would be delighted to come and give evidence. This is a condition that nobody has ever heard of; it is not just about raising awareness, but changing outcomes, and I hope that the Committee’s inquiry into saving lives can help to save some of those 2,000 people. Obviously, they will not all be saved, but 2,000 is a huge number—it is not a very rare condition, but nobody knows about it until it devastates their family. I am delighted to accept that offer on behalf the charity.

Two studies that the charity is supporting known as DAShED—diagnosis of aortic syndrome in the emergency department—and ASES, the aortic syndrome evidence synthesis, are looking at the development of decision tools for use in emergency medicine to ensure that aortic dissections are diagnosed as quickly as possible and can then be effectively treated. These studies are designed to look at the available evidence to improve diagnosis of aortic dissection. Once concluded, there will need to be a second round of funding to measure the impact of implementing those recommendations. Studies that focus on improved diagnosis, while important, are just the first step. The critical breakthrough will be made by the identification of biomarkers and artificial intelligence to detect unusual patterns of presentation of aortic dissection. This research has the potential to save 10 lives a week according to the charity, and I hope that the Minister will comment on what her Department is doing to increase the funding available for research into better diagnosis for aortic dissection.

As I mentioned, this is not just about diagnosis but about treatment. The NIHR has issued a call for research proposals into methods of treatment that would reduce the need for further medical intervention down the line. I know that budgets are likely to remain tight for some time, given the current economic conditions, but I repeat my plea for the Minister to find some money and recommit to the importance of research funding. We must improve how we diagnose and treat these conditions. Of course, the better we diagnose and treat aortic dissection, the less money we will spend in future on treating so many cases. Some 45% of people who have an aortic dissection are under the age of 60, so being diagnosed and treated early allows them to live a life with their family and continue to contribute economically to society.

First, I commend the hon. Member for Mid Derbyshire (Mrs Latham). It is never easy coming to Westminster Hall to lead a debate; it is even harder to come and tell a personal story—one that is so heartbreaking for the hon. Lady. She has made us more aware of the condition. We sympathise greatly with her on the loss of her son Ben. We support her and what she asks for.

No parent should have to go through the horror of losing a child. I have the greatest respect for the hon. Lady for coming here today and talking about it, which is often the hardest thing to do. As my party’s spokesperson on health, it is great to be here to support wholeheartedly her call for better patient pathways and more funding for aortic dissections. She set out a really good case and has asked for a number of things. I endorse what she has asked for and will give some factual background to the debate.

Aortic dissection kills over 2,000 people a year. The UK statistics are clear: three to four people per 100,000 are diagnosed with aortic dissection each year. It typically presents with abrupt onset chest, back or abdominal pain that is severe in its intensity, or is described as ripping or tearing, particularly in the patient with a high-risk condition such as Marfan syndrome or a family history of aortic disease.

The hon. Lady was right to refer to diagnosis. We often refer to diagnosis in these debates, and she has asked for work on that. The Chair of the Health and Social Care Committee, the hon. Member for Winchester (Steve Brine), has taken her thoughts on board, and I know that next year, or whenever the inquiry is done, when the hon. Lady makes her contribution, we can expect a fairly good response from him. He will never be found wanting in that regard. It is good to have him here to hear the story.

By improving diagnosis of aortic dissection in terms of familial connection, we can improve patient pathways to get better treatment and easier maintenance of the disease. Aortic Dissection Awareness UK & Ireland is the national patient charity for aortic dissection in the UK. It was founded by a small group of people who were diagnosed with aortic dissection in 2016. The charity provides vital information and support for patients and families affected by the condition, which the hon. Lady outlined so well, including the families who are left to deal with what happens. The charity works with healthcare providers to improve diagnosis and treatment and reduce healthcare inequalities. It partners with researchers to bring forward new insights that will improve future care for aortic dissection patients. In addition, the Aortic Dissection Charitable Trust research advisory group has been actively promoting research in the field of aortic dissection, aiming to save lives and improve the quality of life for those suffering from the condition now and in the future.

We now come to the Front Benchers, who will have five minutes each, and then the Minister will have 10 minutes.

It is a pleasure to see you in the Chair today, Mr Pritchard.

I begin by paying tribute to the hon. Member for Mid Derbyshire (Mrs Latham), not only for securing this debate, but for the strength and courage she has shown in leading it. My thoughts and those of all in my party are with her and her family after the tragic loss of her son, Ben. May he rest in eternal peace.

No parent should witness the loss of their child, and I welcome the positive and heartfelt contributions from across the House today about taking more effective action in preventing this disease. As we have heard, 2,000 people a year in the United Kingdom lose their lives from aortic dissection. It is a treatable condition; indeed, it has a better than 80% survival rate when it is diagnosed and treated in time. Yet today, in the year 2022, 50% of people who are struck by this condition ultimately lose their life.

The British Heart Foundation has done a tremendous amount of work in this particular area, and I thank it for its dedication. In Scotland, the BHF has worked alongside the Scottish Government, Members of the Scottish Parliament and local NHS boards to champion all those who are working to beat heart and circulatory disease. Through their record-high health funding, the Scottish Government have supported and will continue to support health research and innovation, as a vital part of pandemic recovery and their wider aims to improve the health of our populations.

In 2020, the Scottish Government announced a one-off £75 million increase in funding for Scottish universities to ensure that they can protect their world-leading research programmes against the financial impact of covid-19 and the other crises that we are having to live through, whether it be the food crisis, the energy crisis or everything else. That significant intervention helped to secure the jobs and training needed to support ongoing and future research work.

It is a pleasure to serve under your chairmanship this afternoon, Mr Pritchard.

I want to take a moment to sincerely thank the hon. Member for Mid Derbyshire (Mrs Latham) for securing this debate and for sharing her very personal story. I offer my profound condolences to her for the loss of her son, Ben, and I recognise her extraordinarily brave work in campaigning to improve the patient pathway for aortic dissection, and to increase research and screening.

As we have heard, aortic dissection occurs because of a partial tear in the wall of the aorta. The tear then spreads, and can rupture or interrupt the blood supply to vital organs. There are two distinct types of aortic dissection: type A, which occurs in the front of the chest, and type B, which occurs in the back of the chest. Type A is far more dangerous; if untreated, it is sadly almost always fatal. We have also heard today that over 2,000 people per year lose their lives from aortic dissection. Some 11% of maternal deaths from cardiovascular causes are due to aortic dissections. Worryingly, the Oxford Vascular Study projects that those figures will almost double by 2050. It is crucial, then, that we engage with experts and give this life-threatening condition the attention that it deserves.

As the hon. Member for Mid Derbyshire said, there have been some positive advances in aortic dissection care over the last year—notably, the launch of the acute aortic dissection toolkit—but we cannot afford to take our foot off the pedal. Deaths from aortic dissection are avoidable, and with timely treatment the survival rate is good, as we have heard. It is therefore crucial that we do everything we can to drive up diagnosis rates. The Aortic Dissection Charitable Trust estimates that one in three of those who have aortic dissection are misdiagnosed. I would be grateful, then, if the Minister will update colleagues on the steps her Department is taking to improve diagnosis rates for aortic dissection.

What we heard from the hon. Member for Enfield North (Feryal Clark) was a shame, but I will focus on what we heard from my hon. Friend the Member for Mid Derbyshire (Mrs Latham), which was one of the most powerful speeches I have ever heard in Parliament. It was also one of the most painful to hear, but I know that is not a patch on what she will have experienced in losing her son, Ben, so tragically, aged just 44. As she told us, he went to A&E to get help and was sent home, and then he died. How awful that was for her as his mother and for his whole family, including the loving wife he leaves behind and his two children. I am so sorry that she and all his family have had to go through that.

I cannot commend my hon. Friend enough on coming to the House and talking about her experience; on doing so in the Chamber, as she has done; on coming to meet me and other Health Ministers; and on drawing on her experience, her son’s experience and her whole family’s experience to try to make things better for other people who are at risk of aortic dissection—to prevent others from going through what she has gone through, and to try to save the lives of others so that some good can come out of what she has been through. I have a huge amount of respect for my hon. Friend for doing that, and I know that many people across the country, including those who will not necessarily even know what she has done, will be grateful to her for it. I thank her myself for that.

My hon. Friend helped to set up the Aortic Dissection Charitable Trust. She has been working with that trust very effectively to raise awareness of aortic dissection, improve diagnosis, and prevent aortic dissection in the first place, saving lives in doing so. She made several specific requests and asked several questions during her speech, which I will come to in a moment. We also heard from the hon. Member for Strangford (Jim Shannon), who is always so thoughtful in what he says and how he says it. He makes such valuable contributions to debates in this place, and it is so good to see him again—I think it is the third time in less than 24 hours that we have talked about healthcare.