Category: Health

Maria Caulfield – 2022 Statement on Ian Paterson, Patient Safety and Government Implementation Plan

The statement made by Maria Caulfield, the Parliamentary Under-Secretary of State for Health and Social Care, in the House of Commons on 15 December 2022.

On 16 December 2021, the Government published their response to the findings of the inquiry into the issues raised by disgraced surgeon, Ian Paterson. We reiterated the apologies of the Government to the patients affected and those close to them and committed to ensuring we did more to protect patients in the future.

In line with this commitment, the Government accepted the overwhelming majority of the recommendations made by the inquiry and set out an implementation plan of 40 actions to put those recommendations into effect. Finally, we committed to providing a further update on the progress of this implementation plan in 12-months’ time. I am happy to be able to publish this report fulfilling that commitment today.

All the relevant bodies within the health sector have been united in understanding that these changes are essential. We all agree that patients cannot be failed in the same way again. On behalf of the Government, I want to thank every organisation that has engaged in this process for their commitment to making improvements. I would especially like to thank the representatives of patient groups impacted by Ian Paterson, who have campaigned tirelessly to ensure their experiences do not go unheeded. They have continued to be a source of inspiration and expertise throughout the implementation period.

I am pleased to report that good progress has been made across the implementation plan which we set out in December 2021. The report published today provides full details of this progress against the four themes of the Government’s response as laid out in the implementation plan. In this statement, I will highlight some of the most important developments under each of these themes.

Patient-centred information

Patients now have more access to information relevant to their treatment than they did during Ian Paterson’s time practising. This includes access to information about the performance of consultants working for independent sector healthcare providers, and specialties in the NHS. These continue to be added to, so patients will have more, and better, access to independent information before choosing a consultant. NHS England (NHSE) will work with the professions so that meaningful consultant-level information on the numbers and types of procedures performed should be made publicly available. If patients choose to be treated in the independent sector, there is now more information about what to expect, with further information to be made available over the coming year.

Patients now have the right to access their treatment records and clinicians are aware of the need to write to patients directly following a consultation or treatment, rather than only writing to their GP. This information gives patients a record of their condition, and test results to reflect on, or to seek a second opinion if required. This is reinforced by ensuring patients gets the time they need to consider treatment options and have access to a range of new resources to help them consider their options; options that patients will also be able to discuss with medical professionals who are equipped to handle these conversations.

Making challenge heard

Doctors across more specialties now have independent data on their practice available and will be required to use this as part of their appraisal and revalidation processes. This will help to identify issues and fix them. Staff in the health system also have more opportunities to make their voices heard about a patient’s care, including through clarified guidance and assessment of multidisciplinary team use as a forum.

Care Quality Commission (CQC) updated its guidance on complaints processes in early 2022. It is now easier for patients to raise concerns about treatment they receive and access independent resolution of their complaint if they are unsatisfied with the provider’s handling. As part of the implementation of the NHS patient safety strategy, NHSE has introduced measures to advance safety and the response to harm. The Government have appointed the first ever patient safety commissioner for England, Dr Henrietta Hughes OBE.

Ensuring accountability

CQC published the new single assessment framework in July 2022, which sets out what good care looks like, and National Quality Board published national guidance on system quality groups, setting out the requirements for quality governance in integrated care systems.

Alongside this, we have seen significant culture change in the independent sector, now leaving no doubt that independent providers must take responsibility for maintaining high standards of care in their facilities, irrespective of how the medical professionals involved are engaged by them (through employment or practising privileges). This has been supported by Independent Healthcare Providers Network’s refresh of the medical practitioners assurance framework in September 2022. NHS Resolution launched new exclusion guidance in April 2022.

Putting things right

Patients who are impacted by potential issues with their care will be reviewed through recall processes which are now better informed of how to put patients at the centre of their focus. The new national recall framework was published in June 2022 to facilitate this.

Patients will continue to receive apologies from healthcare professionals and providers for potential issues with their care when appropriate. Enhanced training and resources are now available to clinicians to ensure these apologies are delivered effectively and meaningfully.

The Government are working to ensure that any future changes to indemnity and insurance arrangements will be made using the best evidence base available. This includes a thorough assessment of the impact on patients, healthcare professionals, providers, and the wider market; with the aim of improving the position for patients when receiving treatment from any regulated healthcare professional, regardless of the setting. The Government’s ambition is that when this work concludes, patients have confidence that they can access appropriate compensation if harmed while receiving care, including when harm arises from criminal/intentional acts or omissions. The summary of responses to the consultation on appropriate clinical negligence cover for regulated healthcare professionals will be published alongside this implementation update on 15 December 2022.

The Government will be continuing to ensure this work is built upon, as part of our wider commitment to ensuring patient safety and high standards of care across the health system. We understand that there is no room for complacency when it comes to patient safety and, together with the patient safety commissioner, will make sure this is one building block towards a health system in which patients and those close to them can have the maximum possible confidence.

December 16, 2022
Maria Caulfield – 2022 Speech on the Potential Harms of Vaccines

The speech made by Maria Caulfield, the Parliamentary Under-Secretary of State for Health and Social Care, in the House of Commons on 13 December 2022.

I thank my hon. Friend the Member for North West Leicestershire (Andrew Bridgen) for securing the debate. It is important that all Members get to discuss and debate such issues, and they are entitled to their opinion.

I have to say that I strongly disagree with my hon. Friend, not only in the content of his speech, but in the way he derided doctors, scientists and nurses. Many of us worked through the pandemic and saw at first hand the devastation that covid caused. There is no doubt in my mind that, despite the personal protective equipment, social distancing and infection control, the thing that made the biggest difference in combating covid was the introduction of the vaccine.

Safe and effective vaccines have underpinned our strategy for living with covid. Covid has not gone away, but we are living with it in a way that was not possible this time last year. Vaccines have saved thousands of lives, reduced the pressure on the NHS, and allowed the economy and society to reopen, not just in this country but in countries across the world. In countries with lower vaccination rates, their ability to open up, move on and live with covid was reduced.

Across the piece—not just for covid—vaccines remain our biggest line of defence, particularly during a challenging winter period. We see with our seasonal flu vaccine roll-out and our covid programme that getting the most vulnerable people vaccinated—

Andrew Bridgen

Will the Minister give way on that point?

Maria Caulfield

I will not. I have just three minutes to respond to the many points that my hon. Friend made.

It is important to put on the record that all the vaccines used in the UK are safe, and we have some of the highest safety standards in the world, with the MHRA globally recognised for requiring high standards of safety. I have worked in clinical research, and I can say categorically that the data is not hidden from the public or the MHRA; it is inspected rigorously and can be reinspected at any time.

Each of our covid vaccine candidates is assessed by a team of scientists and clinicians on a case-by-case basis, and it is only once a potential vaccine has met robust standards of effectiveness, safety and quality that it is approved for use. That is the case for all medicines, not just covid vaccines. Extensive data shows that the vaccine is safe and highly effective in reducing the deaths that we sadly saw during the pandemic. That does not end when the vaccine is approved; surveillance of vaccines continues, as it does with any medicine, and any adverse reaction is recorded on a regular basis. That does not stop following approval.

My hon. Friend talked about the yellow card reports. Those have been in place for many years. Anyone who has a side effect from any medicine can make a yellow card report. When I was first starting out in nursing, that was a physical yellow card; it is now online. Anyone can submit any suspected adverse drug reaction. The MHRA will collate and review them, and it has in the past gone on to suspend the licence of a medicine if it has concerns. That is something that it can do for any vaccine, including any covid vaccine.

The nature of the yellow card reporting system means that some reported events are not always proven side effects. A side effect can be reported; the MHRA will then go and look to see whether it is actually related to that medicine, and there is a list of probabilities of how likely it is that the side effect is related to that medicine. There is comprehensive surveillance to alert us to any unforeseen adverse reactions to vaccines and to enable us to act swiftly when required.

We know that there are some circumstances where individuals have sadly experienced harm with a possible link to a vaccination. I recognise how difficult that is for those individuals and their families. We have put measures in place to monitor any possible side effects and to commission further research that will help us better understand how to diagnose and treat those who have suffered or continue to suffer any ill effects from a covid-19 vaccine. That is the case for any medicine—even with a simple medicine such as paracetamol, people can get side effects—and that is why every medicine that is prescribed and dispensed has a patient safety information sheet listing the most likely side effects and encouraging people to report any that may not be included.

Danny Kruger

Will the Minister give way?

Maria Caulfield

I will give way quickly, because I have only a couple of minutes.

Danny Kruger

I am grateful. The Minister’s predecessor had asked the Joint Committee on Vaccination and Immunisation to review the evidence behind the decision to roll out the vaccine to children. Can she update the House or write to us to explain where that review has got to? Does she agree that the JCVI should be looking at the vaccination of children?

Maria Caulfield

I will write to my hon. Friend with an update on that report. It was touched on that the MHRA has licensed the vaccine for babies, but that has not yet been approved by the JCVI, so that is just a licence rather than a recommendation to roll out. However, I am happy to send him the details of that report.

I want to put on the record that the covid vaccines have saved tens of thousands of lives and prevented hundreds of thousands of people from being hospitalised. I completely disagree with my hon. Friend the Member for North West Leicestershire that there is a whole conspiracy of doctors, nurses and scientists—they have done nothing but work hard to get us through the pandemic.

Andrew Bridgen rose—

Maria Caulfield

I will give way for one brief point.

Andrew Bridgen

I thank the Minister for giving way on that important point. The claims about the number of lives saved worldwide by the vaccination are sponsored by vested interests. The modelling is the lowest form of scientific evidence—in fact, it is more science fiction than science fact.

Maria Caulfield

I completely disagree. I worked on the covid wards with patients who were dying from that virus. We had infection control measures, antibiotics, dexamethasone—a steroid—and every known facility available, and the only thing that made a difference was when those vaccines were introduced. They do not necessary stop people from getting the virus, but they certainly reduce its intensity and the likelihood of someone dying from it.

I completely debunk the conspiracy theories about a whole group of people benefiting financially from the roll-out of the vaccine and would gently say to my hon. Friend that if he has evidence, there are mechanisms in place for raising concerns, as we have seen with other drugs. Only today, I was before the Health and Social Care Committee talking about sodium valproate—we also had an Adjournment debate on that last week—where there are genuine safety concerns. The MHRA is taking that extremely seriously. It is not worried about pharma concerns; its first priority is patients, and it is exactly the same with the covid vaccine. So if there is evidence—I am not saying that there is not—it absolutely must go through the proper channels so that it can be evaluated.

We have launched a nationwide campaign to encourage people to come forward this winter to get their booster. I recommend that people do that safe in the knowledge that the vaccine is safe for people to have.

December 15, 2022
Andrew Bridgen – 2022 Speech on the Potential Harms of Vaccines

The speech made by Andrew Bridgen, the Conservative MP for North West Leicestershire, in the House of Commons on 13 December 2022.

Three months ago, one of the most eminent and trusted cardiologists, a man with an international reputation, Dr Aseem Malhotra, published peer-reviewed research that concluded that there should be a complete cessation of the administration of the covid mRNA vaccines for everyone because of clear and robust data of significant harms and little ongoing benefit. He described the roll-out of the BioNTech-Pfizer vaccine as

“perhaps the greatest miscarriage of medical science, attack on democracy, damage to population health, and erosion of trust in medicine that we will witness in our lifetime.”

Interestingly, there has so far not been a single rebuttal of Dr Malhotra’s findings in the scientific literature, despite their widespread circulation and the fact that they made international news.

Before I state the key evidence-based facts that make a clear case for complete suspension of these emergency use authorisation vaccines, it is important to appreciate the key psychological barrier that has prevented these facts from being acknowledged by policymakers and taken up by the UK mainstream media. That psychological phenomenon is wilful blindness. It is when human beings—including, in this case, institutions—turn a blind eye to the truth in order to feel safe, reduce anxiety, avoid conflict and protect their prestige and reputations. There are numerous examples of that in recent history, such as the BBC and Jimmy Savile, the Department of Health and Mid Staffs, Hollywood and Harvey Weinstein, and the medical establishment and the OxyContin scandal, which was portrayed in the mini-series “Dopesick”. It is crucial to understand that the longer wilful blindless to the truth continues, the more unnecessary harm it creates.

Here are the cold, hard facts about the mRNA vaccines and an explanation of the structural drivers that continue to be barriers to doctors and the public receiving independent information to make informed decisions about them. Since the roll-out in the UK of the BioNTech-Pfizer mRNA vaccine, we have had almost half a million yellow card reports of adverse effects from the public. That is unprecedented. It is more than all the yellow card reports of the past 40 years combined. An extraordinary rate of side effects that are beyond mild have been reported in many countries across the world that have used the Pfizer vaccine, including, of course, the United States.

Jim Shannon (Strangford) (DUP)

I spoke to the hon. Gentleman beforehand and he knows my feelings about the vaccines. I am a supporter of the vaccines, as are many of my family, but I understand where he is coming from. In fact, I have had some constituents come to me about this. Does he agree that, in this House, we must acknowledge risks and not simply relegate them to fine print?

Andrew Bridgen

The hon. Gentleman is absolutely right. Those who feel that they have been damaged by the vaccine should of course have the full support of their elected Members of Parliament and the NHS. Only a couple of weeks ago, I was interviewed by a journalist from a major news outlet who said that he was being bombarded by calls from people who said that they were vaccine-harmed but unable to get the support they wanted from the NHS. He also said that he thought this would be the biggest scandal in medical history in this country. Disturbingly, he also said that he feared that if he were to mention that in the newsroom in which he worked, he would lose his job. We need to break this conspiracy of silence.

It is instructive to note that, according to pharmaco-vigilance analysis, the serious adverse effects reported by the public are thought to represent only 10% of the true rate of serious adverse events occurring within the population. The gold standard of understanding the benefit and harm of any drug is the randomised controlled trial. It was the randomised controlled trial conducted by Pfizer that led to UK and international regulators approving the BioNTech-Pfizer mRNA vaccine for administration in the first place.

Contrary to popular belief, that original trial of approximately 40,000 participants did not show any statistically significant reduction in death as a result of vaccination, but it did show a 95% relative risk reduction in the development of infection against the ancestral, more lethal strain of the virus. However, the absolute risk reduction for an individual was only 0.84%. In other words, from its own data, Pfizer revealed that we needed to vaccinate 119 people to prevent one infection. The World Health Organisation and the Academy of Medical Royal Colleges have previously stated and made it clear that it is an ethical responsibility that medical information is communicated to patients in absolute benefit and absolute risk terms, which is to protect the public from unnecessary anxiety and manipulation.

Very quickly, through mutations of the original strain—indeed, within a few months—covid fortunately became far less lethal. It quickly became apparent that there was no protection against infection at all from the vaccine, and we were left with the hope that perhaps these vaccines would protect us from serious illness and death. So what does the most reliable data tell us about the best-case scenario of individual benefit from the vaccine against dying from covid-19? Real-world data from the UK during the three-month wave of omicron at the beginning of this year reveals that we would need to vaccinate 7,300 people over the age of 80 to prevent one death. The number needed to be vaccinated to prevent a death in any younger age group was absolutely enormous.

Danny Kruger (Devizes) (Con)

I am very grateful to my hon. Friend for bringing this debate to the House. It is a very important debate that we should be having. He is talking about the relative risks for different cohorts of the population. He will remember that, when the vaccine was first announced, the intention was that it would be used only for those who were vulnerable and the elderly because, as he says, the expectation was that the benefit to younger people was minor. Does he agree that it would be helpful for the Minister to explain to us why the original advice that the vaccines would be rolled out only for the older population, and would not be used for children in particular, was laid aside and we ended up with the roll-out for the entire population, including children?

Andrew Bridgen

I thank my hon. Friend for that intervention and his support on this very important issue. Of course, it is important that the Government justify why they are rolling out a vaccine to any cohort of people, particularly our children. He will recall that, in the Westminster Hall debate, we questioned the validity of vaccinating children who have minimal risk, if a risk at all, from the virus when there is a clear risk from the vaccine. I will again report on evidence from America later in my speech about those risks, particularly to young children.

In other words, the benefits of the vaccine are close to non-existent. Beyond the alarming yellow card reports, the strongest evidence of harm comes from the gold standard, highest possible quality level of data. A re-analysis of Pfizer and Moderna’s own randomised controlled trials using the mRNA technology, published in the peer-reviewed journal Vaccine, revealed a rate of serious adverse events of one in 800 individuals vaccinated. These are events that result in hospitalisation or disability, or that are life changing. Most disturbing of all, however, is that those original trials suggested someone was far more likely to suffer a serious side effect from the vaccine than to be hospitalised with the ancestral, more lethal strain of the virus. These findings are a smoking gun suggesting the vaccine should likely never have been approved in the first place.

In the past, vaccines have been completely withdrawn from use for a much lower incidence of serious harm. For example, the swine flu vaccine was withdrawn in 1976 for causing Guillain-Barré syndrome in only one in 100,000 adults, and in 1999 the rotavirus vaccine was withdrawn for causing a form of bowel obstruction in children affecting one in 10,000. With the covid mRNA vaccine, we are talking of a serious adverse event rate of at least one in 800, because that was the rate determined in the two months when Pfizer actually followed the patients following their vaccination. Unfortunately, some of those serious events, such as heart attack, stroke and pulmonary embolism will result in death, which is devastating for individuals and the families they leave behind. Many of these events may take longer than eight weeks post vaccination to show themselves.

An Israeli paper published in Nature’s scientific reports showed a 25% increase in heart attack and cardiac arrest in 16 to 39-year-olds in Israel. Another report from Israel looked at levels of myocarditis and pericarditis in people who had had covid and those who had not. It was a study of, I think, 1.2 million who had not had covid and 740,000 who had had it. The incidence of myocarditis and pericarditis was identical in both groups. This would tell the House that whatever is causing the increase in heart problems now, it is not due to having been infected with covid-19.

It was accepted by a peer-reviewed medical journal that one of the country’s most respected and decorated general practitioners, the honorary vice-president of the British Medical Association and the Labour party’s doctor of the year, Dr Kailash Chand, likely suffered a cardiac arrest and was tragically killed by the Pfizer vaccine six months after his second dose, through a mechanism that rapidly accelerates heart disease. In fact, in the UK we have had an extra 14,000 out-of-hospital cardiac arrests in 2021, compared with 2020, following the vaccine roll-out. Many of these will undoubtedly be because of the vaccine, and the consequences of this mRNA jab are clearly serious and common.

Mr Jonathan Lord (Woking) (Con)

My hon. Friend is making an interesting and important speech. In particular, he is giving a lot of detail about the Pfizer vaccine. Does he have similar concerns about other vaccines, and if so, will he be talking about those later in his speech?

Andrew Bridgen

I thank my hon. Friend for that intervention. Clearly this is related to all mRNA vaccinations. He will be well aware that many of us have had the AstraZeneca vaccine, which has effectively been withdrawn because of health concerns. Indeed, I will declare to the House that I am double-vaccinated with AstraZeneca, which has now been withdrawn.

Ministers may understandably wish to defer the responsibility for a decision such as withdrawing vaccines from the population to regulators such as the Medicines and Healthcare products Regulatory Agency, or in America the Food and Drug Administration. Historically, when undertaking the approval of any drug, the regulators ultimately end up relying on the summary results from the drug companies in their sponsored trials, where the raw data is kept commercially confidential. Furthermore, the MHRA has a huge financial conflict of interest, receiving 86% of its funding from the pharmaceutical industry it is supposed to regulate. In effect, we have the poacher paying the gamekeeper.

In a recent investigation by The BMJ into the financial conflicts of interest of the drug regulators, the sociologist Donald Light said:

“It’s the opposite of having a trustworthy organisation independently and rigorously assessing medicines. They’re not rigorous, they’re not independent, they are selective, and they withhold data.”

He went on to say that doctors and patients

“must appreciate how deeply and extensively drug regulators can’t be trusted so long as they are captured by industry funding.”

Similarly, another investigation revealed that members of the Joint Committee on Vaccination and Immunisation had huge financial links to the Bill and Melinda Gates Foundation running into billions of pounds. Ministers, the media and the public know that the foundation is heavily invested in pharmaceutical industry stocks.

Unfortunately, the catastrophic mistake over the approval, and the coercion associated with this emergency-use authorisation medical intervention, are not an anomaly, and in many ways this could have been predicted by the structural failures that allowed it to occur in the first place. Those shortcomings are rooted in the increasingly unchecked visible and invisible power of multinational corporations—in this case, big pharma. We can start by acknowledging that the drug industry has a fiduciary obligation to produce profit for its shareholders, but it has no fiduciary obligation to provide the right medicines for patients.

The real scandal is that those with a responsibility to patients and with scientific integrity—namely, doctors, academic institutions and medical journals—collude with the industry for financial gain. Big pharma exerts its power by capturing the political environment through lobbying and the knowledge environment through funding university research and influencing medical education, preference shaping through capture of the media, financing think-tanks and so on. In other words, the public relations machinery of big pharma excels in subterfuge and engages in smearing and de-platforming those who call out its manipulations. No doubt it will be very busy this evening.

It is no surprise, when there is so much control by an entity that has been described as “psychopathic” for its profit-making conduct, that one analysis suggests that third most common cause of death globally after heart disease and cancer is the side effects of prescribed medications, which were mostly avoidable. Because of those systemic failures, doctors often receive biased information, deliberately manipulated by the pharmaceutical industry, which exaggerates the benefits and the safety of their drugs. Furthermore, the former editor of The BMJ, Richard Smith, claims that research misconduct is rife and is not effectively being tackled in the UK institutions, stating:

“Something is rotten in…British medicine and has been for a long time”.

It has also been brought to my attention by a whistleblower from a very reliable source that one of these institutions is covering up clear data that reveals that the mRNA vaccine increases inflammation of the heart arteries. It is covering this up for fear that it may lose funding from the pharmaceutical industry. The lead of that cardiology research department has a prominent leadership role with the British Heart Foundation, and I am disappointed to say that he has sent out non-disclosure agreements to his research team to ensure that this important data never sees the light of day. That is an absolute disgrace. Systemic failure in an over-medicated population also contributes to huge waste of British taxpayers’ money and increasing strain on the NHS.

Danny Kruger

My hon. Friend is being very good with his time. I just want to call his attention to some research, since I chair the all-party parliamentary group for prescribed drug dependence. He refers to the waste of money; there is £500 million being spent every year by the NHS on prescribed drugs for people who should not be on those habit-forming pills, causing enormous human misery as well as waste for the taxpayer.

Andrew Bridgen

I thank my hon. Friend for making a point that only reinforces the items in my speech that the public need to know. I thank him again for his support.

We need an inquiry into the influence of big pharma on medications and our NHS. That is been called for many occasions and by some very influential people, including prominent physicians such as the former president of the Royal College of Physicians and personal doctor to our late Queen, Sir Richard Thompson. On separate occasions in the last few years those calls have been supported and covered in the Daily Mail, The Guardian and, most recently, The i newspaper.

We are fighting not just for principles of ethical, evidence-based medical practices, but for our democracy. The future health of the British public depends on us tackling head-on the cause of this problem and finding meaningful solutions. In 2015 a commentary by Richard Houghton, editor-in-chief of The Lancet, suggested that possibly half of the published medical literature “may simply be untrue”. He wrote that

“science has taken a turn toward darkness”,

and asked who is going to take the first step to clean up the system.

That first step could start this evening with this debate. It starts here, with the vaccine Minister and the Government ensuring in the first instance an immediate and complete suspension of any more covid vaccines with their use of mRNA technology. Silence on this issue is more contagious than the virus itself, and now so should courage be. I would implore all the scientists, medics, nurses and those in the media who know the truth about the harm these vaccines are causing to our people to speak out.

We have already sacrificed far too many of our citizens on the altar of ignorance and unfettered corporate greed. Last week the MHRA authorised those experimental vaccines for use in children as young as six months. In a Westminster Hall debate some weeks ago, I quoted a report by the Journal of the American Medical Association studying the effect of the covid-19 mRNA vaccination on children under five years of age. It showed that one in 200 had an adverse event that resulted in hospitalisation, and symptoms that lasted longer than 90 days.

As the data clearly shows to anyone who wants to look at it, the mRNA vaccines are not safe, not effective and not necessary. I implore the Government to halt their use immediately. As I have demonstrated and as the data clearly shows, the Government’s current policy on the mRNA vaccines is on the wrong side of medical ethics, it is on the wrong side of scientific data, and ultimately it will be on the wrong side of history.

December 15, 2022
Helen Whately – 2022 Speech on Aortic Dissection

The speech made by Helen Whately, the Minister of State at the Department for Health and Social Care, in Westminster Hall, the House of Commons, on 13 December 2022.

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.

Jim Shannon

I see more of the Minister than my wife.

Helen Whately

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

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

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

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

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

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

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

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

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

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

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

Jim Shannon

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

Helen Whately

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

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

December 15, 2022
Feryal Clark – 2022 Speech on Aortic Dissection

The speech made by Feryal Clark, the Labour MP for Enfield North, in Westminster Hall, the House of Commons, on 13 December 2022.

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.

December 15, 2022
Steven Bonnar – 2022 Speech on Aortic Dissection

The speech made by Steven Bonnar, the SNP MP for Coatbridge, Chryston and Bellshill, in Westminster Hall, the House of Commons, on 13 December 2022.

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.

December 15, 2022
Jim Shannon – 2022 Speech on Aortic Dissection

The speech made by Jim Shannon, the DUP MP for Strangford, in Westminster Hall, the House of Commons, on 13 December 2022.

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).

December 15, 2022
Pauline Latham – 2022 Speech on Aortic Dissection

The speech made by Pauline Latham, the Conservative MP for Mid Derbyshire, in Westminster Hall, the House of Commons on 13 December 2022.

I beg to move,

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

It is a pleasure to serve under your chairmanship, Mr Pritchard. After many applications, I am delighted to have secured an opportunity to have this very important debate. Hon. Members may be aware that this is an extremely difficult and personal topic for me, but I hope that sharing my experiences will prompt action that could save lives in the future.

I will begin with a case study, which happens to be my personal story, then move on to what we do in this place to improve patient pathways and research funding for aortic dissection. Before I do so, I must draw the House’s attention to my entry in the Register of Members’ Financial Interests: I am an unpaid trustee of the Aortic Dissection Charitable Trust, a charity that I helped to set up.

In the early hours of 11 December 2018, I received a phone call that no mother would ever want. I was told that our son Ben had died. Four years later, we all still feel numb. It seems implausible that Ben, a gregarious 44-year-old with two children and a loving wife, will not simply walk back into our lives. Ben died after suffering an aortic dissection. He had been feeling unwell the previous day, but was sent home after spending four hours in A&E and told to return the next day if he did not feel better. Tragically, the emergency doctors had not understood his symptoms and had not come up with a diagnosis.

Aortic dissection is a tear in the aorta, the body’s largest artery, which carries blood from the heart to the brain, limbs and vital organs. It is a condition that affects approximately 4,000 people a year in the UK and, like Ben, almost all of them are unaware that they have it. Half of them—almost 2,000 people—die soon after the dissection occurs, which is more than die from road traffic accidents in this country. Five hundred of those who die reach hospital, but sadly, as in Ben’s case, their condition is not diagnosed quickly enough, or at all. The other 1,500 die almost immediately after the acute event.

Many of these deaths are preventable. With proactive genetic screening for family members of those who have suffered an aortic dissection and with better treatment of high blood pressure, many of these deaths could be avoided. I am delighted to learn today that the Minister of State, Department of Health and Social Care, my hon. Friend the Member for Colchester (Will Quince), has announced a fund of £175 million for cutting-edge genomics. As a charity, we would be happy to work with the Department on this issue.

I have to admit that, like most people, I knew nothing about aortic dissection before Ben died, but knowing what a gap his death has left in our family I have immersed myself in efforts to prevent other tragedies. In late 2020, with the eminent cardiac surgeon Graham Cooper and the long-time aortic dissection campaigner, patient and public voice co-ordinator of the NHS cardiac clinical reference group, Catherine Fowler, whose father died in Ireland from this condition, I helped to set up the Aortic Dissection Charitable Trust. I am delighted that Graham and Catherine are in the Gallery and listening to the debate. The trust is now a leading UK-registered charity that aims to unite patients, families and the medical community. Our mission is to improve diagnosis, increase survival rates and reduce disability caused by aortic dissection.

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

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

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

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

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

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

Jim Shannon (Strangford) (DUP)

The hon. Lady is making an incredibly passionate and personal contribution to the House. We all recognise that this is a subject very close to her heart, and we recognise her passion and commitment.

Mrs Latham

I thank the hon. Gentleman for his intervention. It is important that all parties work together to make this better.

First, I encourage the Minister to see what more can be done to increase and improve data collection around aortic dissection, to make as much of the data as possible publicly available to assist with clinical research. Secondly, I would like to focus on improvements that we can make to the patient pathway. The single most important improvement is in diagnosis. For those accurately diagnosed, more than 80% survive.

I will come back to how we can focus research funding. For now, I would like to emphasise that increased research funding for diagnosis is required. The other improvement on diagnosis that the Government can make is to ensure that doctors in emergency departments receive adequate training and advice on the symptoms of aortic dissection and how to spot a potential case. A freedom of information request recently showed that only half of NHS trusts had a policy or procedure concerning the diagnosis of aortic dissection in the emergency department and that only a small proportion used the guidelines from the Royal College of Emergency Medicine or from the Royal College of Radiologists. The charity is doing a huge amount to educate medical professionals. Can the Minister comment on what central guidance has been made available from the NHS for emergency departments?

The launch of the NHS aortic dissection toolkit, which I mentioned, is incredibly important, but it only covers the patient pathway from the point of diagnosis to treatment and does not cover diagnosis itself. Can the Minister commit to considering extending that toolkit or working with experts and the charity to design and develop a new toolkit for diagnosis of aortic dissection, which can be rolled out in all emergency medicine settings around the country?

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

I pay tribute to my hon. Friend’s bravery in bringing this debate to the Chamber. I know that she has been through a lot personally. As she says, no parent would want to experience the death of a child as a result of aortic dissection and her subsequent and recent work to bring this debate here and her work with the charity is commendable. I am sure that it will lead to many lives being saved in future.

On the point about diagnosis, I remember from my days in the emergency department that fast scanning, which is a simple technique that uses an ultrasound scan to check for free fluid in the abdomen, was a very important tool that we could use to detect aortic dissection. It is a simple thing to train ED doctors to do, but that training is not available in the way that it should be. Will my hon. Friend join me in pressing the Minister to ensure that the focus is not always on service delivery in ED? If we are going to have good clinicians, we need to have the right training for them and this is an area that would save lives. Can the Minister put some funding aside specifically for that purpose?

Mrs Latham

I thank my hon. Friend for his intervention, knowing as he does what it is like to work in an emergency department. A lot of people come through the department, but the study he refers to about the abdominal aortic aneurysm was only for men of a certain age. This affects people from 17, or even younger, to 90. Although that sounds like a good idea, I am not sure that it would work in practice. We need more CT scanners used more frequently in emergency departments, and that is what is missing in part from emergency medicine settings.

The next phase in the patient pathway for those who have been correctly and speedily diagnosed is treatment. As I mentioned, 80% of those diagnosed survive. That is not enough and research is ongoing into better methods of treatment. However, one area where we can certainly improve is long-term treatments that do not require further medical interventions. There is currently a call for research proposals into that from the National Institute for Health and Care Research. That is excellent news and I encourage the Minister to make as much money as possible available for this area of research.

After treatment, it is imperative that the follow-up treatment for aortic dissection patients and their families is of the highest quality. Two thirds of survivors of aortic dissections have some kind of post-traumatic stress disorder. They need specialist treatment by somebody who understands their conditions. Furthermore, aortic dissection survivors have a long-term condition that places them at risk of future complications. They need to be monitored by specialist teams and currently, that provision is highly variable. Teams exist in some specialist hospitals, but not all patients are reliably followed up, and too often that is a failure to take a holistic approach to follow up. The employment of specialist nurses in every aortic centre, similar to those in cancer and palliative care, would greatly strengthen follow-up.

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

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

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

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

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

Steve Brine (Winchester) (Con)

On the point about genetics and screening, the Health and Social Care Committee, which I chair, will be doing a big inquiry next year on prevention, and one of the things we will be looking at is upstream prevention for cancers and some of the other big killers. I extend the offer to my hon. Friend and the charity to get in touch with us when we launch that inquiry to give evidence on the screening that they are proposing. We would be interested in looking at that and to take evidence in written or oral form. That inquiry is all about saving lives. What she has said makes a lot of sense to me—it could do just that.

Mrs Latham

I thank my hon. Friend. I am sure the charity would be delighted to come and give evidence. This is a condition that nobody has ever heard of; it is not just about raising awareness, but changing outcomes, and I hope that the Committee’s inquiry into saving lives can help to save some of those 2,000 people. Obviously, they will not all be saved, but 2,000 is a huge number—it is not a very rare condition, but nobody knows about it until it devastates their family. I am delighted to accept that offer on behalf the charity.

Two studies that the charity is supporting known as DAShED—diagnosis of aortic syndrome in the emergency department—and ASES, the aortic syndrome evidence synthesis, are looking at the development of decision tools for use in emergency medicine to ensure that aortic dissections are diagnosed as quickly as possible and can then be effectively treated. These studies are designed to look at the available evidence to improve diagnosis of aortic dissection. Once concluded, there will need to be a second round of funding to measure the impact of implementing those recommendations. Studies that focus on improved diagnosis, while important, are just the first step. The critical breakthrough will be made by the identification of biomarkers and artificial intelligence to detect unusual patterns of presentation of aortic dissection. This research has the potential to save 10 lives a week according to the charity, and I hope that the Minister will comment on what her Department is doing to increase the funding available for research into better diagnosis for aortic dissection.

As I mentioned, this is not just about diagnosis but about treatment. The NIHR has issued a call for research proposals into methods of treatment that would reduce the need for further medical intervention down the line. I know that budgets are likely to remain tight for some time, given the current economic conditions, but I repeat my plea for the Minister to find some money and recommit to the importance of research funding. We must improve how we diagnose and treat these conditions. Of course, the better we diagnose and treat aortic dissection, the less money we will spend in future on treating so many cases. Some 45% of people who have an aortic dissection are under the age of 60, so being diagnosed and treated early allows them to live a life with their family and continue to contribute economically to society.

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

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

December 15, 2022
Helen Whately – 2022 Speech on Government Funding for Research into Motor Neurone Disease

The speech made by Helen Whately, the Minister of State at the Department of Health and Social Care, in Westminster Hall, the House of Commons on 13 December 2022.

It is a pleasure to serve under your chairmanship, Mr Mundell. I begin by thanking the hon. Member for Kingston upon Hull East (Karl Turner) for securing this debate. I too pay tribute to Doddie Weir, an incredible man who sadly passed away at the end of November. My thoughts are with his wife Kathy, and their sons, Hamish, Angus and Ben.

I had the good fortune to meet Doddie during an online roundtable—online because it was during the pandemic—and I was inspired by his campaign for a brighter future for people living with MND. His charity, the My Name’5 Doddie Foundation, works tirelessly to raise funds for research and provide grants to people living with this cruel condition.

During the pandemic, and again since, I also met with my Mid-Kent MNDA branch as a constituency MP. Those meetings are vivid in my mind. The first call I had with them had literally everybody on the call in tears, as we talked about the experiences of those suffering with MND and their carers—usually family members—and how they were seeing their loved ones losing a bit of themselves day by day to MND. It is such a cruel disease, as the hon. Gentleman said. I am thankful to him and to several other Members of Parliament who have campaigned for research funding and actively lobbied me and other Ministers on that point.

Chris Evans (Islwyn) (Lab/Co-op)

I refer Members to my entry in the Register of Members’ Financial Interests, and I am a biographer of Don Revie. This is an important debate, because Don, who played for Hull City during his playing career, passed away from motor neurone disease in 1989. Like Doddie Weir and Rob Burrow, he played sport at a high level. If the Government are going to invest in research, will they look at the fact that sportsmen seem to be more likely than the rest of the population to develop motor neurone disease?

Secondly, I urge the Minister to tell GPs to ensure that people are tested for motor neurone disease early in their journey, because the problem is that it is one of the last things people test for. In the case of Don, he believed that the pain in his back was caused by slipped discs—tragically, it was motor neurone disease. I ask the Minister to look into those two asks.

Helen Whately

The hon. Member makes two really important points. As he says, several prominent sportsmen who have been effective campaigners have sadly been affected by the disease, and there is a potential relationship with head injuries. He also made a point about the challenge of diagnosis, which I will take away.

The hon. Member for Kingston upon Hull East rightly talked about the tenacity of campaigners such as Rob Burrow and how effective their visible campaigning has been at raising awareness of MND. The disease affects a significant number of people, with around 5,000 suffering from it right now. Sadly, we know that people do not live very long with MND, so a really significant number of people across the country are being affected over time. It is incredibly cruel for the individuals who suffer.

I heard the request of the hon. Member for Kingston upon Hull East for a meeting, and I will come to some of the plans to address his calls in a moment. As I said, MND has a huge impact on those who have been diagnosed, and it is devastating for them and their families. We have made real progress in research, but we are yet to learn why motor neurones die off. There is still no cure for the disease and only one drug is licensed in the UK to treat MND, which is why the Government committed back in November 2021 to make at least £50 million available for MND research over the next five years.

Before I go into more about research, I want to say something about how we are supporting people living with MND, which is a degenerative condition—often rapidly so—that requires complex and anticipatory care. For that reason, the majority of services for people with MND are specialised and commissioned nationally in the 25 neurological treatment centres across England. In the absence of a cure, we want to make sure that people with MND have access to the best health and care support available to meet their complex needs. It is really important for people suffering from MND and their carers to have specialised and targeted support, including devices to help people with MND to be able to continue to communicate effectively for as long as possible, as well as other types of care.

Since November 2021, we have invested £790 million in the National Institute for Health and Care Research biomedical research centres, which bring together experts to translate scientific breakthroughs into treatments for patients. At the Sheffield centre, researchers have already pioneered evidence-based interventions to manage the symptoms of MND. In September, the Sheffield researchers published promising clinical trial results for the drug tofersen. Professor Dame Pamela Shaw, the director of the NIHR Sheffield BRC, said:

“I have conducted more than 25 MND clinical trials and the tofersen trial is the first trial in which patients have reported an improvement in their motor function.”

I want to emphasise that because, until now, it has been very hard to be optimistic about developing a cure for MND or even effective treatment. The trial is, in fact, grounds for optimism against this cruel disease.

In June, the Government and charity partners invested in a £4.25 million collaborative partnership on MND, which includes LifeArc, the MND Association, the My Name’5 Doddie Foundation and MND Scotland. The Government are supporting groundbreaking research undertaken by the UK Dementia Research Institute. Seven of its 50 research programmes are dedicated specifically to MND, with world experts undertaking discovery science, translational and clinical research to drive medical progress.

There has already been work going on to invest in MND research, but I heard the impatience of the hon. Member for Kingston upon Hull East and have heard from other hon. Members. Indeed, my hon. Friend the Member for Northampton South (Andrew Lewer), who is here today, has also lobbied me and other Ministers on the desire for greater pace and so that money goes towards research quicker and then translates more quickly into treatments.

To that point, yesterday, we announced at the Department of Health and Social Care, together with the Secretary of State for BEIS, how we will deliver the full £50 million research commitment, which will build on our existing investments and successes to more rapidly fund MND research. In that regard, £30 million of Government funding will be invested immediately through specialist research centres and partnerships with leading researchers. That will include £12.5 million to the UK Dementia Research Institute to support groundbreaking research specifically into MND, a further £8 million investment into early-phase clinical research for MND via the NIHR biomedical research centres and £6 million for a translational accelerator that connects the DRI capabilities with those of the Francis Crick Institute, the Laboratory of Molecular Biology and the new MND collaborative partnership. We are investing a further £2 million in the MND collaborative partnership, which will specifically focus on data for MND research.

Andrew Lewer (Northampton South) (Con)

I am triggered by the reference to Francis Crick, who was also from Northampton, so there is quite a connection here, also given my great privilege to be the chairman of the all-party parliamentary group on motor neurone disease. I am grateful to the hon. Member for Kingston upon Hull East (Karl Turner) for having this debate, but particularly grateful to the Government for listening, making some really important announcements and pushing this forward. It has been received with great pleasure by the research community and MND sufferers. I hope the Minister will accept my thanks for that. I look forward to working further with her in taking this forward, now that we have the new announcements.

Helen Whately

It is good to hear from my hon. Friend. Credit goes to him for his campaigning, both personally and as chair of the APPG on motor neurone disease, together with that of other Members of Parliament, to push for investment to get out to the frontline on research. I look forward to working with him further so we can ensure this investment in research makes a difference for people suffering from MND and their carers, and for those in the future.

I have just mentioned the MND collaborative partnership, which is a mechanism by which the many initiatives that I just described will come together. The first meeting of this virtual institute took place at the end of November, and I am looking forward to hearing about further progress now that the funding is in place. The remainder of the committed £50 million of MND funding is available for researchers to access via the NIHR and the Medical Research Council. Government will support researchers in coming forward with ideas for new research via a joint highlight notice between NIHR and the Medical Research Council on MND. That will allow our funding to be responsive to progress in science and ensure breakthroughs reach patients in the quickest possible time. Further to that, the Secretary of State will shortly host leading researchers and patient groups at a roundtable to discuss MND research and help researchers make the best bids as quickly as possible. That addresses the call for a meeting from the hon. Member for Kingston upon Hull East.

Karl Turner

I am grateful to the Minister and I welcome everything that she has helpfully just announced. However, my researcher spoke yesterday to the association and it still requests that meeting. It is the only ask. I accept what she says about roundtables and all sorts of other things going on behind the scenes, but the association wants a meeting with the Secretary of State for Health and Social Care and the Secretary of State for Business, Energy and Industrial Strategy. Perhaps it is difficult to get them together, so there could be separate meetings. That is the only thing the association has asked me to ask for today, so it would be remiss of me if I did not push her to request that meeting after she leaves here.

Helen Whately

The hon. Member’s request is very clear. As I said to him a moment ago, the Secretary of State for Health and Social Care will meet researchers and patient groups at a roundtable about this issue. If that is not the same meeting as the one he wants, I am very happy to take that point away and find out exactly what meeting he wants and how we can make sure that it takes place as well as the planned meeting.

I have heard from my hon. Friend the Member for Northampton South over the past few weeks about red tape getting in the way of research, which we clearly do not want to be the case. To help cut red tape, research funders from NIHR and the Medical Research Council are working together so that MND proposals will go to the right scheme at the early idea stage and so that applications can be considered before they even have full sign-off from their universities and institutions.

We are also building on our recent announcement of £790 million for the NIHR biomedical research centres by putting in MND funding, so that it gets quickly to the most promising researchers already working on MND.

To sum up and return to where we started, there is no doubt that MND is a cruel disease that takes people before their time and, as it does so, takes them bit by bit from their loved ones. As yet, there is no cure. However, I say “as yet” because I have hope, and we have real grounds for optimism with the clinical trials. We also have £50 million going into MND research. I have outlined today how we are accelerating that funding to go to the frontline of research and to develop the treatments that will make a difference to MND sufferers, whether here and now or in the future.

In no small part, that is thanks to the late Doddie Weir and his family, Rob Burrows, Ed Slater, Kevin Sinfield, and all the other MND campaigners and carers who have worked so hard to raise awareness of MND and push for more action on MND research. I can assure them that their efforts are not in vain. I personally take inspiration from all their tireless work, which reinforces the Government’s commitment to fund and support research into MND. We owe it to people with MND, future sufferers, and all the campaigners and researchers to push ahead with the groundbreaking research that will help to develop effective treatments and, indeed, cures for this cruel disease.

December 14, 2022
Karl Turner – 2022 Speech on Government Funding for Research into Motor Neurone Disease

The speech made by Karl Turner, the Labour MP for Kingston upon Hull East, in Westminster Hall, the House of Commons, on 13 December 2022.

I beg to move,

That this House has considered Government funding for research into motor neurone disease.

It is an absolute pleasure to serve under your chairship, Mr Mundell. MND is a devastating, debilitating and untimely life-limiting disease. We saw that just two weeks ago with the tragic loss of Doddie Weir, to which you have referred. Doddie was a giant of a man, both on and off the field, but the MND Association estimates that in the UK six people a day die of MND. A third of them die within 12 months of diagnosis, but it is now more than a year since the Government pledged—in response to the tireless efforts of campaigners and following meetings between me and the then Business Secretary, the right hon. Member for Spelthorne (Kwasi Kwarteng)—to invest £50 million. We met the Secretary of State that day with campaigners, and he gave an assurance to us all that immediate action, meaning immediate money, would be forthcoming. It was not.

Jim Shannon (Strangford) (DUP)

I thank the hon. Gentleman for bringing forward this important issue. I have a close working relationship with MND campaigners back home, and ahead of the debate they got in touch to point out the lack of adequate care and provision in Northern Ireland. The Department of Health back home needs help to improve the standard for accessing clinical trials, and the same applies for people across the UK. Does the hon. Gentleman agree that it is imperative that people in all parts of this great United Kingdom of Great Britain and Northern Ireland are able to gain from research and be involved in clinical trials? We all stand to gain from that.

Karl Turner

I agree with the hon. Gentleman, who is an incredibly impressive campaigner on the issue. I pay tribute to him. He is knowledgeable on the subject, and he raises it both publicly in debate and privately with Ministers when given the opportunity. I commend him for that.

I very much welcome the Secretary of State for Health and Social Care commenting at the weekend that the money will be fast-tracked into the hands of researchers, but I am sorry to say that it feels as though the Government have dragged their feet. They have been dragged kicking and screaming to this point by the impressive dedication of MND campaigners—not least Rob Burrow, who is a rugby league legend—and it is disappointing that we have had to wait 12 months for anything. This debate was secured, then there was talk in the media that there would be funding available, but campaigners are entitled to be a little concerned and a little nervous about where and when that money will be forthcoming.

I pay tribute to the campaigners. I have briefly mentioned Rob Burrow; for all his brilliance on the pitch, the whole rugby league community has been blown away by his determination to raise awareness of MND. It is his tenacity that has brought us to where we are today. I have to be honest that I knew very little about MND. I am a rugby league fanatic; I support both of the rugby league teams in Hull. I am bound to say, being the Member for east Hull, that I support the red and whites a bit more than the black and whites on occasion. Rob is the person who brought this to my attention. Special mention should also be given to Rob’s former teammate and best pal, Kevin Sinfield, who has completed seven ultra-marathons in seven days to raise about £1.5 million for MND charities. That is an incredible effort from an incredible campaigner and man.

This debate was secured before the Secretary of State announced the money at the weekend. I want to mention that I have spoken with the MND Association at length, and my office has spoken with it in preparation for this debate. It has one single ask. It desperately needs a meeting with the Secretary of State for Health and Social Care and the Secretary of State for BEIS, so that it can get a timeline and some understanding of when the money will be made physically available. It is no good promising money and then not delivering it. The promise was made more than 12 months ago—nothing has been forthcoming.

I am quite annoyed at the fact that the debate was secured, and all of a sudden there is discussion in the media that the money is coming. People are asking me whether it means 50 million quid last year and 50 million again this year. The reality is that it is 50 million quid, which is much needed—the association and campaigners are grateful for it—but they need to know when and how the money is going to be made available.

I am going to rest there; I do not think I have anything further to add. It is a simple ask: will the Minister agree to speak to the Secretaries of State concerned and put the meeting together as quickly as possible, so that we can move forward?

December 14, 2022