Aortic Dissection: Patient Pathways and Research Funding

Jim Shannon Excerpts

Tuesday 13th December 2022 Westminster Hall

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

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.

Our work encompasses the whole patient pathway, from prevention to diagnosis, treatment, follow-up and support for all those living with aortic dissection. So far, the charity has designed and delivered accredited education events reaching over 3,000 medical professionals, and produced a fantastic set of patient resource videos to support those living with aortic dissection and their families. Instrumental in creating the videos was “Whispering” Bob Harris, who has suffered an aortic dissection and given up a huge amount of time to be an ambassador for the charity. I am delighted that Bob is also in the Gallery today.

The charity has created an online learning portal for the medical community, with learning modules that cover all the multidisciplinary aspects, in order to improve education on aortic dissection in the medical community, and ultimately to improve patient experiences and outcomes. The free and accessible learning portal, produced with experts in the field of aortic dissection, will be launched this week. We have also attended a number of medical conferences and presented to cardiac specialists and emergency medicine doctors, most recently in October at the European Emergency Medicine Congress 2022 in Berlin. We have designed and delivered national all-day education symposiums to establish learning communities and to increase knowledge and education for paramedics, emergency medics and surgeons in Scotland, Ireland and England, with many more such events planned. I have to say that the “we” are mainly the other trustees, because I am very much the junior and more silent trustee of the partnership.

The charity has also worked with NHS England and a group of clinical experts on the design of the aortic dissection toolkit. Seven key principles have now been established, setting out best practice for the patient pathways from the point of treatment through to diagnosis. We are delighted that the toolkit has reached the implementation phase, and the charity is actively supporting this critical phase by working with the regions that have reached out to the charity for support.

The charity has also launched research grants to fund research into how we can better diagnose and treat aortic dissection. For my part, I have sought to raise the issue in the House of Commons, including at Prime Minister’s questions in March and since then in meetings with Ministers. I thank the Minister responding to the debate for her commitment to aortic dissection and for having taken the time to meet the charity trustees last month.

In almost two years, the charity has had a big impact, but there is much more that we can do to save 2,000 lives a year in this country. I would like to set out some of the important changes we would like to see. So far, I have spoken about 2,000 deaths a year and 4,000 cases of aortic dissection, but a worrying statistic is that as our population ages, we expect to see about 7,000 cases of aortic dissection every year by 2050. It is crucial that we take steps now to improve the patient pathway, to ensure that as few of these cases as possible are fatal.

It is surprising but true that there is a lack of detailed and accurate data regarding the incidence, treatment and patient outcomes for acute aortic dissection in England. That is particularly true for patients like Ben, who do not reach a specialist treatment centre alive. Such data would assist in understanding the true scale of the problem and where any interventions might be directed. Of course our family understands that, even if he had been diagnosed, Ben might not have survived the catastrophic event, which happened in the middle of the night, but our passion to learn more about why he died seems to have highlighted gaps in the system, which, if filled, will help others. The least we can do is to press for that to be so. No child deserves to have their mother or father taken away, no wife should be bereft at the sudden loss of a husband, and no parents should have to bury their son.

[Jim Shannon (Strangford) (DUP)]

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.

[Mrs Latham]

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?

--- Later in debate ---

[Jim Shannon (Strangford) (DUP)]

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.

The hon. Lady asked very clearly for more to be done. The Minister and all of us were listening intently to her contribution. It would be very hard for anyone in this House not to respond in a positive fashion to her requests. More needs to be done across the whole of the United Kingdom of Great Britain and Northern Ireland, especially in co-operation with the devolved nations. This is something we should all work together on. We can always exchange ideas in these debates. The hon. Lady and I have both participated in debates in the past 24 hours. There was an Adjournment debate last night and a debate this morning at 11 am—the Minister has been kept extremely busy. We always have a helpful response from her and I look forward to something similar this afternoon. We owe a duty of care to the hon. Member for Mid Derbyshire, and I am sure the Minister will respond in a positive fashion.

We also need to produce a research strategy that is developed and implemented as a support network for all. The Royal College of Emergency Medicine has made the diagnosis of acute aortic syndrome and dissection one of its top 10 priorities, and we must do the same across the whole of the United Kingdom of Great Britain and Northern Ireland. I encourage the Minister to engage with her counterparts in Northern Ireland and other devolved Administrations to ensure that we approach this in collaboration, with all of us asking for the same thing and all working together to achieve the same goal and ensure the correct patient pathways and sustainable funding for aortic dissections.

Again, I commend the hon. Member for Mid Derbyshire; I think we were all particularly moved by her contribution. This debate would be suitably concluded with the support that the Minister can give us. I very much look forward to hearing from the two shadow Ministers: the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar) and the hon. Member for Enfield North (Feryal Clark).

[Mark Pritchard (in the Chair)]

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

--- Later in debate ---

[Jim Shannon]

I see more of the Minister than my wife.

[Helen Whately]

The third welcome I want to give is to Bob Harris, who is here today. He himself has suffered aortic dissection, and is working as an ambassador on this issue. It is very good to have him here with us.

We have heard during this debate about the sudden and heartbreaking impact that aortic dissection can have on families. That is why it is absolutely right that we should be talking about this issue today: we should be talking about how to raise awareness of the condition among medical professionals, about how to improve diagnosis so that aortic dissection is detected as quickly as possible, and about the research we need to make sure that more people survive. Sadly, around 4,000 people suffer from an aortic dissection in the UK each year, yet still many people have never heard of the condition. It is crucial that it is diagnosed and treated urgently, otherwise very sadly, it can be fatal. It need not be.

As we have heard today, diagnosing aortic dissection promptly is, unfortunately, not straightforward. The condition is relatively rare, which means medical professionals may be less familiar with its presentation. The symptoms of aortic dissection, such as chest pain, can be similar to other more common conditions, making it harder to accurately diagnose. Care pathways for aortic dissection vary across the country, meaning different patients often get different treatments.

I can reassure my hon. Friend the Member for Mid Derbyshire and other hon. Members here today that I am determined to improve the way the condition is diagnosed and treated. Earlier this year, NHS England launched its aortic dissection toolkit, which sets out the steps that commissioners, providers and clinicians should take to improve the care of patients with acute aortic dissection. The toolkit covers the pathway for aortic dissection, from recognition and diagnosis to treatment.

NHS England’s regional teams are currently implementing the toolkit within their local services, and we expect those improvements to significantly reduce delays to diagnosis and improve patient outcomes following treatment. NHS Digital has also made changes to NHS Pathways, which is a triage system used by NHS 111 and 999, to improve the recognition of chest pain likely to be associated with aortic dissection. However, I heard my hon. Friend say that the toolkit does not cover all the challenges that she is aware of in the pathway, so I will take that away and see how we can go further to make sure the toolkit is comprehensive or supplement it as necessary.

We have also heard today about the importance of raising awareness of aortic dissection among medical professionals. The Royal Colleges of Radiologists and Emergency Medicine published a best-practice guideline last year on the diagnosis of aortic dissection in the emergency department, in response to a report published by the Healthcare Safety Investigation Branch in 2021. I expect that to have a major impact on the prompt diagnosis of aortic dissection. The Royal College of Emergency Medicine, which sets standards of care in all emergency departments in the UK, has also developed guidance to support the timely diagnosis of aortic dissection. However, my hon. Friend told us that a freedom of information request showed that only some EDs are using the guidelines. Again, I will look into that, as guidance should be followed consistently across emergency departments.

Research is the piece of the puzzle that will drive forward progress and find the treatments of tomorrow. We need to understand better who is at risk of aortic dissection and how we should monitor them, we need to know how to most effectively detect and diagnose aortic dissection in emergency settings and how to improve treatment to make sure patients recover successfully. That is why the Department of Health and Social Care brought together a multidisciplinary group of experts and patient representatives in 2020 to consider research priorities for aortic dissection. That significant event identified research questions in diagnosis, treatment, care, awareness and education and, crucially, what matters most to people with aortic dissection and their families. In response to that event, the Department of Health and Social Care-funded National Institute for Health and Care Research launched a call for research on surgical treatment for aortic dissection. We await the outcome of the commissioning pool early in the new year.

The NIHR invests around £50 million a year on research into cardiovascular disease, including aortic dissection and other heart conditions. For example, the NIHR funded a major programme of work at Barts Health NHS Trust to develop and test a novel surgical treatment for aortic dissection, which is less invasive than routine care, allowing quicker procedure times and shorter hospital stays. It is also vital that we harness our understanding of risk to help prevent aortic dissection. UK Research and Innovation, which is funded by the Department for Business, Energy and Industrial Strategy, is supporting a study on how we can use genetic and other factors to predict aortic dissection and identify people at greater risk. That will pave the way for more preventive measures, such as blood pressure control, to be prescribed.

We know that there is interest in the academic community for a pipeline of research to improve outcomes for people at risk of and who have survived aortic dissection. I encourage researchers working in the field to harness the momentum building around aortic dissection research and to please come forward and make applications for funding.

My hon. Friend the Member for Mid Derbyshire also asked about data and called for more data on aortic dissection to be collected and made public. I will take that request away and raise it with NHS England, because she makes a really important point: the more data we collect, the more we know. Again, making it available more widely is one of the best things that we can do to improve understanding and support research into prevention, diagnosis and treatment. My hon. Friend also requested that we meet to discuss guidelines for genetic screening, which is another thing that I will take away and look into. I will get back to her on that.

This debate has made us all stop and reflect, and I will pause for a moment as well, because I think the hon. Member for Strangford is waiting to intervene on me.

[Jim Shannon]

I thank the Minister for her very helpful response. I always ask these questions, because it is important that we share the issues. In my contribution, I asked whether we could share information with Northern Ireland, Scotland and Wales, because we can all learn from it. We need to collaborate on research, because we can all benefit from it, wherever it may be—in Northern Ireland in my case, and in Scotland in the case of the hon. Member for Coatbridge, Chryston and Bellshill (Steven Bonnar). That might be helpful for us all.

[Helen Whately]

I completely agree with the hon. Member, and we can only do better if we share information across the whole United Kingdom and internationally, as work on this condition will be going on across the world.

This has been a really powerful debate, but it is not a patch on the pain that my hon. Friend the Member for Mid Derbyshire has been through. As she said so powerfully, each life lost to aortic dissection is not just one life affected. The condition affects the lives of all those around the person who is lost, be they mothers like her, fathers, husbands, wives, sons, daughters, grandchildren or friends—everyone who is affected when somebody is sadly lost too soon. I thank her again for her tireless work in raising awareness and campaigning, and I assure her that I will, in turn, do what I can in Government to support her efforts and to improve outcomes for all those affected by aortic dissection across the country.