Aortic Dissection: Patient Pathways and Research Funding

Steve Brine Excerpts

Tuesday 13th December 2022 Westminster Hall

[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.