Rising aortic dissection cases can't be ignored
In the early hours of 11 December 2018, I received the phone call that no mother would ever want.
I was told that our son Ben had died. Ben died after suffering an aortic dissection. He had been feeling unwell the previous day and attended A&E, but was sent home and told to return if he didn’t feel better. Tragically, he died overnight.
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.
After Ben’s death, I helped to set up the Aortic Dissection Charitable Trust, which advocates for changes to policy all the way through the patient pathway, so that in the future, fewer families have to go through what my family went through.
The Aortic Dissection Charitable Trust also delivers educational events to emergency doctors, provides resources to support patients and their families as well as supporting and funding research.
Aortic dissection should be an urgent priority for the Department for Health and Social Care. Because of our ageing population, by 2050 there are predicted to be around 7,000 cases of aortic dissection a year – so we need to act fast.
There are three key policy steps which I believe the Department for Health and Social Care could take to immediately improve aortic dissection policy.
Diagnosis is the single most important area. Of those correctly diagnosed and treated on time, more than 80% survive. However, the fact is in the UK only 50% of people survive the acute phase of an acute aortic dissection. A recent freedom of information request revealed that less than half of NHS Trusts across the country have a policy or procedure concerning the diagnosis of aortic dissection in their emergency department.
The government have launched the NHS Acute Aortic Dissection Toolkit, which is an incredibly valuable resource for practitioners, but it only covers best practice from the moment of diagnosis to definitive treatment.
The government should therefore commit to working with the Aortic Dissection Charitable Trust to develop the Toolkit into a resource which also covers diagnosis, and to ensuring that every single emergency department in the country has a procedure in place to accurately diagnose aortic dissection.
Those who survive the acute phase are left with a long-term medical condition which needs monitoring and active care. Not only this, but two thirds of survivors of aortic dissection report some kind of post-traumatic stress disorder.
The management of these conditions is a highly specialised area, and whilst there are examples of fantastic teams in some specialist hospitals, far too often follow-up care is not reliable.
What is needed is the employment of specialist nurses in every aortic centre, similar to those who work in cancer or palliative care, who can take charge of the patients’ journey after the initial treatment.
To provide a specialist nurse for two days per week in each of the 29 NHS aortic centres would cost less than £400,000 per year. This is a tiny fraction of the overall NHS budget and would make a huge difference. This phase of follow-up treatment should also be added to the aortic dissection toolkit.
About a third of patients who suffer an aortic dissection have a genetic predisposition towards the condition which can be detected by screening.
Through proactive screening of relevant groups, such as the relatives of those who suffer aortic dissections, we would be able to identify high-risk individuals and provide treatment and management that would prevent them having an acute aortic dissection.
The technology exists to do this, and the government has recently invested another £175m into cutting-edge health genomics.
Screening relatives and high-risk populations could hugely reduce the number of people suffering an unexpected aortic dissection, and therefore the number of people who die from this condition.
Taken together, these three policy steps would be absolutely transformative in the treatment of aortic dissection. They focus on the three key areas - prevention, diagnosis and the follow-up treatment of the condition, and could save many of the 2,000 patients who die every year.
The number of people killed by aortic dissections already exceeds the number killed on Britain’s roads each year. By 2050, this number will be even higher as we come to terms with an ageing population.
Without the three comparatively inexpensive policies that I have suggested, the country could be sleepwalking into a crisis. We have the opportunity now to take hold of this disease and make sure that our health service is in a position to deal with aortic dissection correctly in the future.
Pauline Latham is the former Conservative MP for Mid Derbyshire.
