Aortic Dissection: Patient Pathways and Research Funding

Pauline Latham 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?

[Dr Dan Poulter (Central Suffolk and North Ipswich) (Con)]

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?

[Mrs Latham]

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.

The massive improvement in the patient pathway would not be expensive. Although I understand that every penny is being counted in the current situation, to provide a specialist nurse in each of the 29 NHS centres in the country that deal with aortic dissection, for two days a week, would cost less than £400,000 in total per year. The charity has explored the replication of the Macmillan nursing model for aortic nurses and, with funding, would be well positioned to support the design and roll-out of that initiative. Given the enormity of the NHS budget, I hope that is something that the Minister will confirm that she will look into.

The final stage of the patient pathway is genetic screening. About a third of patients who suffer an aortic dissection have some sort of genetic predisposition to the condition. That is why I welcome funding. Screening relatives of sufferers can detect those at risk and proactive treatment can significantly reduce their risk. However, that requires specialised clinical genetics input, access to which is, again, very variable. The technology exists to do that, and it would certainly save lives every single year.

There are two steps the Minister could take to improve this stage of the patient pathway. First, the employment of the specialist nurses I mentioned would be of great assistance. They would lead on the patient’s follow-up plan, part of which would include screening for their relatives. The second step would be for the Minister to facilitate a series of meetings between the relevant professional societies and appropriate NHS staff, to agree and implement a set of NHS guidelines for genetic screening for those suffering aortic dissection and for their relatives.

As I have set out, there are improvements to be made all along the patient pathway, which would go a long way towards saving many of the 2,000 patients every year who would otherwise die from aortic dissections. If nothing is done, that number will only increase in the coming years, so it is crucial that we act now.

Turning to the opportunities for investment in research, which would make a huge difference to the diagnosis and treatment of aortic dissection.

[Steve Brine (Winchester) (Con)]

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.

[Mrs Latham]

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.

It is not an exaggeration to say that the improvements I set out both in the patient pathway and on research funding have the potential to save hundreds of lives a year. As I have explained, the number of aortic dissections will only increase with our ageing population, so it would be wise to act now. The charity is partnering in the implementation roll-out of the NHS aortic dissection toolkit across the country, and it has already received a positive and enthusiastic response, but there is more to be done. As I mentioned, there is an opportunity for the Minister to endorse the design and implementation of further toolkits to address the current challenges with diagnosis, elective surgery follow-up and aftercare, covering those aspects of the patient pathway that are not included in the existing toolkit. Improvements in the patient pathway and research funding, such as those that I have set out, are greatly needed, and I hope that the Minister can carefully consider all the recommendations.

Too often in government and in this place, we speak about tragedies in terms of scale—of the numbers of lives lost or numbers of people affected by a catastrophe—but it is all too easy to forget that behind every single statistic there is a family whose lives have been upended by these terrible events. While 4,000 aortic dissection patients a year is a huge number, we must remember that it is much more than that: it is 4,000 people with a family—parents, children, husbands, wives, siblings, relatives and friends. None of them are likely to be aware of aortic dissection before it happens. In Ben Latham’s case, the family was mine, and every single one of us is still feeling the effects of this awful condition that we did not know existed. It has been important for me, as for the other trustees and ambassadors of the charity, to do everything we can to improve the survival rates and treatment of future sufferers, so that other families do not have to go through what we have been through.

--- Later in debate ---

[Mrs Latham]

First, I thank everyone who has contributed. The hon. Member for Strangford (Jim Shannon) is obviously a prolific contributor to all kinds of debates, but he always has an interesting perspective and works very hard.

I particularly thank the Chair of the Health and Social Care Committee, my hon. Friend the Member for Winchester (Steve Brine), for his intervention, because he can take evidence and work with the charity to find out more about prevention and saving lives. I also thank the Minister for taking on board all the requests that I made during my speech, which will make so much difference to so many people and so many families. I thank her for embracing the whole issue of aortic dissection.

I guess that many of the people in this room had never heard of the condition until they took part in this debate, so it is important to ensure that people know about it and that doctors—from GPs right the way through the patient pathway—understand it, understand how to treat it and understand how best to save as many lives as we possibly can. To lose 2,000 people a year—more than the number who die on the roads—is criminal, and the condition is preventable. We have reduced the number of deaths on the roads over many years, not least by putting on seatbelts, and we need to do a similar thing with aortic dissection. I thank the Minister very much for taking it all on board.

Question put and agreed to.

Resolved,

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