PARLIAMENTARY DEBATE
Aortic Dissection: Patient Pathways and Research Funding - 13 December 2022 (Commons/Westminster Hall)
Debate Detail
Contributions from Feryal Clark, are highlighted with a yellow border.
16:28:22
Mrs Pauline Latham
Mid Derbyshire
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.
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.
16:34:37
Jim Shannon
Strangford
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.
16:39:46
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?
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?
16:42:34
Dr Dan Poulter
Central Suffolk and North Ipswich
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?
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?
16:43:27
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.
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
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.
11:22:20
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.
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.
16:54:33
Jim Shannon
Strangford
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).
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).
16:59:43
in the Chair
Mark Pritchard
We now come to the Front Benchers, who will have five minutes each, and then the Minister will have 10 minutes.
17:00:19
Steven Bonnar
Coatbridge, Chryston and Bellshill
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.
Dr Alex Fletcher is leading a study on behalf of the University of Edinburgh that is monitoring around 60 patients at risk of dissection, which aims to develop a more effective screening tool. That study could not have been conducted without the SNP Scottish Government recognising the important work and impact of medical research charities, and I urge the UK Government to uplift support for medical research to ensure that vital studies can continue and more positive breakthroughs can be made.
However, research is not enough. The strategic direction of the UK Government must change if they are truly committed to supporting those with aortic dissection. This is particularly the case when the covid-19 pandemic has brought an even greater need for action into sharp focus. The pandemic had a significant impact on people with heart disease and on the services that support them.
In recognising that material societal change, the Scottish Government have published their heart disease action plan, supported with an investment of £2.2 million. The four priorities of that plan are prevention, timely diagnosis, treatment and care, and workforce.
The Scottish Government have outlined the importance of providing appropriate support to enable people with heart disease to live well with their condition. That means identifying ways to support people experiencing the emotional and psychological impacts of heart disease, and giving as many of them as possible access to specialist support, including vital rehabilitation services and, wherever necessary, supporting access to palliative care.
These measures may seem simple, but they are fundamental to helping minimise the presence of heart disease within our communities. I encourage the Minister to follow the Scottish Government’s footsteps, and to learn and share best practice methods to ensure that aortic dissection cannot continue to blight people’s lives, and have a difficult and lasting impact on their families.
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.
Dr Alex Fletcher is leading a study on behalf of the University of Edinburgh that is monitoring around 60 patients at risk of dissection, which aims to develop a more effective screening tool. That study could not have been conducted without the SNP Scottish Government recognising the important work and impact of medical research charities, and I urge the UK Government to uplift support for medical research to ensure that vital studies can continue and more positive breakthroughs can be made.
However, research is not enough. The strategic direction of the UK Government must change if they are truly committed to supporting those with aortic dissection. This is particularly the case when the covid-19 pandemic has brought an even greater need for action into sharp focus. The pandemic had a significant impact on people with heart disease and on the services that support them.
In recognising that material societal change, the Scottish Government have published their heart disease action plan, supported with an investment of £2.2 million. The four priorities of that plan are prevention, timely diagnosis, treatment and care, and workforce.
The Scottish Government have outlined the importance of providing appropriate support to enable people with heart disease to live well with their condition. That means identifying ways to support people experiencing the emotional and psychological impacts of heart disease, and giving as many of them as possible access to specialist support, including vital rehabilitation services and, wherever necessary, supporting access to palliative care.
These measures may seem simple, but they are fundamental to helping minimise the presence of heart disease within our communities. I encourage the Minister to follow the Scottish Government’s footsteps, and to learn and share best practice methods to ensure that aortic dissection cannot continue to blight people’s lives, and have a difficult and lasting impact on their families.
17:04:25
Feryal Clark
Enfield North
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.
The ADCT has made the case for a review of A&E triage processes, imaging, diagnosis and transfer for surgery. Notably, it also advocates diagnosis being made pre-hospital, which bypasses emergency departments and saves vital time. That work already happens with acute coronary syndrome and acute heart attacks. The ADCT states:
“The current pathways are ineffective… There are problems transferring images… Medical management, blood pressure control, imaging protocols, investigation of genetics…and long-term follow-ups are all sporadic and often not addressed well.”
The AAD toolkit has made a positive difference to some of those problems, but there is still much work to do. Has the Minister met with ADCT recently to review pathway processes? In addition, what work is taking place to eliminate regional variations in aortic dissection care, and to streamline aortic care so that patients can be seen before it is too late?
I also wish to highlight preventive interventions and why it is important that the Government support diagnostics to enable clinicians to save lives. Genetic screening, functional imaging and biomarker analysis are now possible, and if used efficiently, they enable clinicians to provide treatment before an aortic dissection occurs. As the hon. Member for Mid Derbyshire highlighted, once a patient is identified as having a family history of the disease, there is scope for potentially life-saving genetic screening. The ADCT estimates that 20% to 30% of families with dissections have an identified gene. Work is ongoing to identify the remaining 70% to 80% of genetic causes, but if we can screen that 20% to 30%, potentially thousands of lives could be saved over the next few years. I am sure that both sides of the House will agree that that is a worthy endeavour. Will the Minister therefore clarify what steps she is taking to support those exciting and potentially life-saving diagnostic tools?
Finally, let me touch on the workforce. We know that the NHS has the facilities to treat those suffering from aortic dissection. The problem lies in diagnostics. The reality, however, is that system-wide pressure on the NHS exacerbates misdiagnosis and compounds issues in patient pathways. It is therefore essential that targeted aortic dissection strategies come alongside whole-system workforce overhaul.
The next Labour Government will oversee the biggest expansion of the NHS workforce in history, doubling the number of medical school places, training 15,000 new doctors, creating 10,000 new nursing placements, and recruiting 5,000 new health visitors. That will be paid for by abolishing the immoral non-dom tax status. I encourage the Minister to nick Labour’s idea and commit to implementing that workforce strategy as soon as possible. Unless we solve the systemic workforce shortages, we will not be able to robustly tackle conditions such as aortic dissection.
In conclusion, I want to see a future where aortic dissection is diagnosed quickly, treated rapidly, and receives appropriate long-term care and management.
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.
The ADCT has made the case for a review of A&E triage processes, imaging, diagnosis and transfer for surgery. Notably, it also advocates diagnosis being made pre-hospital, which bypasses emergency departments and saves vital time. That work already happens with acute coronary syndrome and acute heart attacks. The ADCT states:
“The current pathways are ineffective… There are problems transferring images… Medical management, blood pressure control, imaging protocols, investigation of genetics…and long-term follow-ups are all sporadic and often not addressed well.”
The AAD toolkit has made a positive difference to some of those problems, but there is still much work to do. Has the Minister met with ADCT recently to review pathway processes? In addition, what work is taking place to eliminate regional variations in aortic dissection care, and to streamline aortic care so that patients can be seen before it is too late?
I also wish to highlight preventive interventions and why it is important that the Government support diagnostics to enable clinicians to save lives. Genetic screening, functional imaging and biomarker analysis are now possible, and if used efficiently, they enable clinicians to provide treatment before an aortic dissection occurs. As the hon. Member for Mid Derbyshire highlighted, once a patient is identified as having a family history of the disease, there is scope for potentially life-saving genetic screening. The ADCT estimates that 20% to 30% of families with dissections have an identified gene. Work is ongoing to identify the remaining 70% to 80% of genetic causes, but if we can screen that 20% to 30%, potentially thousands of lives could be saved over the next few years. I am sure that both sides of the House will agree that that is a worthy endeavour. Will the Minister therefore clarify what steps she is taking to support those exciting and potentially life-saving diagnostic tools?
Finally, let me touch on the workforce. We know that the NHS has the facilities to treat those suffering from aortic dissection. The problem lies in diagnostics. The reality, however, is that system-wide pressure on the NHS exacerbates misdiagnosis and compounds issues in patient pathways. It is therefore essential that targeted aortic dissection strategies come alongside whole-system workforce overhaul.
The next Labour Government will oversee the biggest expansion of the NHS workforce in history, doubling the number of medical school places, training 15,000 new doctors, creating 10,000 new nursing placements, and recruiting 5,000 new health visitors. That will be paid for by abolishing the immoral non-dom tax status. I encourage the Minister to nick Labour’s idea and commit to implementing that workforce strategy as soon as possible. Unless we solve the systemic workforce shortages, we will not be able to robustly tackle conditions such as aortic dissection.
In conclusion, I want to see a future where aortic dissection is diagnosed quickly, treated rapidly, and receives appropriate long-term care and management.
17:10:52
Helen Whately
The Minister of State, Department of Health and Social Care
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.
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.
17:13:49
Jim Shannon
I see more of the Minister than my wife.
17:15:19
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.
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.
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.
17:24:28
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.
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.
Sitting adjourned.
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