Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Pauline Latham Excerpts

Wednesday 22nd May 2024 Westminster Hall

[Andrew Selous (South West Bedfordshire) (Con)]

I beg to move,

That this House has considered the Major Conditions Strategy and people with Ehlers-Danlos syndrome and hypermobility spectrum disorders.

I am delighted to serve under your chairmanship, Mr Dowd. I am extremely grateful to colleagues across the House who have turned up to attend this important debate. We understand that anywhere between 135,000 and up to 300,000 people in the United Kingdom have Ehlers-Danlos syndrome. Those are only the diagnosed ones, and we think that that is the tip of the iceberg. If we take that higher number, in rough terms, that is about 460 per constituency for all of us—that is only those with a known diagnosis.

I am grateful to Dr Emma Reinhold, who is herself a GP no longer able to work because she has EDS. She sent me this quote by Professor Rodney Grahame, who is well respected in the field:

“No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

Ehlers-Danlos syndrome is a group of 13 genetic disorders in which connective tissue is abnormal. That results in fragile and hyperextensible tissues throughout the body, which can lead to a range of very debilitating symptoms. The effect on the body is widespread and not limited to one body system, as connective tissue is everywhere in our bodies. It is a complicated condition and can come with many comorbidities, which can include pain, gut issues, nutrition, cardiovascular autonomic dysfunction, postural tachycardia syndrome, low blood pressure, mast cell issues, musculoskeletal issues, and head and neck issues. Special considerations for children and women’s health, and anaesthetic and surgical considerations are issues as well. EDS can lead to physical disability and reduced quality of life. Some rarer types can be life-limiting. Hypermobility spectrum disorders have similar symptoms to the most common type of EDS, and are treated in the same way.

I am very grateful to Ehlers-Danlos Support UK; I publicly acknowledge the support it has given me for this debate. It supports people across the United Kingdom who live with Ehlers-Danlos syndrome and hypermobility spectrum disorders. It is a wonderful charity and has been a big driver behind the debate. It wants us to come here and make a difference, and that is my plea to the Minister.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

This is an important debate and many people, as my hon. Friend has said, do not know about Ehlers-Danlos syndrome or its diagnosis. Another complication, which he did not mention, is aortic dissection. People with Ehlers-Danlos syndrome can suffer from that and it can be deadly. One of my constituents has Ehlers-Danlos syndrome, but it took 30 years to diagnose. At one point, she was under 11 different consultant teams. Both her sons have the same symptoms, yet they cannot access diagnosis or service. Over those 30 years, there has been no improvement in our care. I hope that when the Minister responds, he will be able to give some hope to the people who suffer from this syndrome.

[Andrew Selous]

I am grateful to my hon. Friend, because it is these individual stories that really make the case. My hon. Friend’s constituents had to wait 30 years: that is a very long time indeed.

Aortic Dissection: Patient Pathways and Research Funding

Pauline Latham Excerpts

Tuesday 13th December 2022 Westminster Hall

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

I beg to move,

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

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

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

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

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

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

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

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

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

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

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

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

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

[Jim Shannon (Strangford) (DUP)]

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

[Mrs Latham]

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

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

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

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

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

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

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

[Mrs Latham]

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

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

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

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

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

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

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

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

[Steve Brine (Winchester) (Con)]

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

[Mrs Latham]

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

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

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

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

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

--- Later in debate ---

[Mrs Latham]

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

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

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

Question put and agreed to.

Resolved,

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

Oral Answers to Questions

Pauline Latham Excerpts

Tuesday 1st November 2022 Commons Chamber

[Helen Whately]

Sadly, cancer takes far too many people before their time, and the Government are determined to improve cancer outcomes in the short term and the long term. I am very happy to meet the hon. Gentleman to discuss this further.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

What steps is the Minister taking to improve health outcomes and early diagnosis for people with aortic dissections?

[Helen Whately]

I know that my hon. Friend has a real understanding of this particular challenge. In March 2022, NHS England launched an aortic dissection toolkit to support the implementation of robust clinical pathways to identify and manage type A and type B aortic dissection, and English regions are working with the cardiac pathways improvement programme to improve diagnosis and treatment.

Covid-19 Update

Pauline Latham Excerpts

Thursday 13th January 2022 Commons Chamber

[Sajid Javid]

I very much agree with what the hon. Gentleman has shared with the House. Unfortunately, I was not able to attend that debate, but the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield) did, and she will also be meeting the all-party parliamentary group on radiotherapy and listening more. I know the hon. Gentleman agrees with me that it has been absolutely right during this very difficult time for the NHS to direct more resources especially to looking after more covid patients and to the booster programme, but it has also been right to protect cancer care.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

As the world improves with the vaccine programme that we have had and continue to have, which has been brilliant in this country, could I ask the Secretary of State to urge doctors who are not on the covid frontline to actually see their patients face to face again, because doctors in hospitals and GPs are still not doing this fully and people’s problems are being missed?

There is also a problem as the world opens up that if someone who has had covid needs to travel, they cannot take a PCR test because that shows they are positive even though they may have long since had it—they are not positive for covid any more, but it still shows positive on a PCR test—and they cannot prove to the country they are going to, and many people are wanting to travel more now, that they do not have covid, so people can actually be stuck for 90 days during which they cannot go out of this country to any country that requires a negative PCR test because they cannot get one.

[Sajid Javid]

First, I agree with my hon. Friend about the points she has made on these issues. On her final point about travelling, as she has seen just in the last few days, the UK Government keep our travel rules under constant review. The moment we have been able to safely remove any of those rules based on the evidence, we have done so, and I know my hon. Friend has respected that. When it comes to the rules of other countries for British citizens wishing to travel for holiday, business or otherwise, those are of course their rules. However, we are working at many levels—in my Department, the Department for Transport, the Foreign Office and others—with those countries to see how we can best co-ordinate on such rules.

Covid-19 Update

Pauline Latham Excerpts

Wednesday 8th December 2021 Commons Chamber

[Sajid Javid]

The hon. Gentleman is right to talk about the importance of cancer and he will know that it remains a priority for the NHS. That is one reason why recently, when the Government set out the extra catch-up funding for the NHS over the next three years to pay for a lot more elective operations and diagnosis, cancer was a priority in that.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

As in South Africa, many people in this country have had covid, particularly young people and school age children. Can my right hon. Friend tell us what is the estimation of that in this country? He must be aware that while he was delivering his statement, in No. 10, Chris Whitty was saying that hospitalisations and deaths have gone down, so why are we having a kneejerk reaction today when we were not going to do it until Monday at the earliest? We should have waited.

[Sajid Javid]

I am happy to answer that. Thankfully, hospitalisations have fallen in recent weeks; they are at roughly 6,000 in English hospitals at the moment. Although they have fallen, however, the numbers are still relatively high. It is good and encouraging that they are falling, but all those hospitalisations at this time are to do with the delta variant. With omicron, as I mentioned in response to a previous question, there will be a lag between infections and hospitalisation. With delta, that has often been about 10 or 12 days, or even longer. We are not quite sure what it will be with omicron, but we know that there will be a lag. The history of the pandemic has always backed that up.

Automated External Defibrillators: Public Access

Pauline Latham Excerpts

Thursday 18th November 2021 Westminster Hall

[Jim Shannon]

I appreciate the hon. Lady’s intervention about the importance of councillors, which I will return to, such as the friend of the hon. Member for Sedgefield. Communities lead on such matters.

There are many defibrillators across great parts of the United Kingdom of Great Britain and Northern Ireland, but the Bill legislates so that everyone must have one in place. There is no cost to the Government; the Bill just puts in place the necessity to do it, rather than saying that it must come from community activities or otherwise.

To give an example from my constituency, in Newtownards some of the shop owners got together and spent £1,000 on a defibrillator, which is available on the high street in the middle of town. Every school in Northern Ireland has a defibrillator. As I will say later, I had a meeting with the former Secretary of State for Education about this issue, and he was committed to it in that role.

I am deeply encouraged by and thankful for the amount of support for the Bill on both sides of the House. I thank hon. Members present for contacting me to offer their support and for suggesting that I hold a debate before Second Reading. The purpose of the debate is to raise awareness and to build the campaign outside the House. We are all able to point to many cases. It is a fundamental aspect of our democracy that Members are able to scrutinise and debate proposed legislation. This debate offers Members the chance to do just that. I have worked with the Minister and look forward to continuing that work to bring this important piece of legislation forward—to bring this ideal into reality. If we can do that, and deliver across the United Kingdom, I will be more than pleased.

Since the Bill’s First Reading, I have been overwhelmed by the amount of support. Support has come from across the House—from all sides, from all parties—which is a reflection that it is welcomed across society. I thank all Members who wrote to the Secretary of State for Health and Social Care urging him to engage on this issue. I was able to meet the Secretary of State to discuss the Bill and he demonstrated his sincere support, which we appreciate. The members of the public and people in industry who have contacted me—I have held meetings with as many as possible over the past few months—are the driving community spirit behind this Bill. The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) referred to that community spirit. It drives us as constituency MPs.

I thank the Minister for her invaluable contribution. I thank Tom, Sandra and Daniel from Stryker, Matthew Spencer from Healthcomms Consulting, Greg Quinn from BD, Sarah French from SADS UK, Gabriel Phillips of APCO Worldwide, Iain Lawrence from Aero Healthcare UK, Sudden Cardiac Arrest UK, as well as the Arrhythmia Alliance, the Community Heartbeat Trust and British Heart Foundation Northern Ireland. I suspect most of those bodies have already contacted the Minister, as well as her local community and other community groups.

I have been interviewed by university students about the Bill. This demonstrates the concern and interest of a wide cross-section of society about the need for public access to AEDs. I am very grateful for their interest and for broadening my knowledge. No matter what age I am, I will always learn. Today I learn more, and the next day more again. I have an open and active mind, and I want to respond and to learn things that we can use in this House for the benefit of everyone. They taught me about the consequences of a lack of awareness of and training in cardiopulmonary resuscitation, which added to my knowledge and understanding of sudden cardiac arrest.

There is momentum growing, not only from The Mirror, which has its own campaign. I turned on the Denmark match at the Euros and did not realise what had happened. I was trying to figure out what was happening on screen, as I had missed the first 30 minutes or so of the match. I thought somebody had got hit on the head by a bottle thrown from the crowd or something. The Danish team were all around Christian Eriksen, and I realised that he had had a heart attack. That day, an AED saved his life, because it was there. The Premier League has donated 2,000 AEDs or thereabouts, aiming for them to filter down to some of the junior clubs. There is definitely a growing momentum out there.

I want the debate today to be marked by hope and commitment, but also by respectful demand. We should all support this issue. I am in no doubt as to the wishes of people in the community with regard to the proposed legislation, its importance and the need to have it in place now.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

This is an incredibly important debate. Does the hon. Gentleman agree that AEDs should be put on public buildings? Those buildings are not open 24/7 and the AEDs should be accessible to the public 24 hours a day, so they should be on the outside of the building. Does he also agree that if every child in school had one hour’s training in CPR every year, we would have far fewer deaths? A combination of those two measures would save many more lives.

[Jim Shannon]

I do agree, and I think there would be a positive consensus in the House on that. I will give an example later of how an AED in a school saved a life in my constituency. I have two examples to illustrate the point.

I have seen over the past year how we have begun to address the importance of CPR training, to which the hon. Lady referred, and AED availability. I agree with her. The AED in Newtownards is in the street, but it could have been in the shop, which closes at six o’clock, so from 6 pm to 9 the next morning it would not have been available. The hon. Lady is right about what should be done.

The right hon. Member for South Staffordshire (Gavin Williamson) backed the campaign, in his former role as Secretary of State for Education, to see all schools equipped with defibrillators. I believe that has been accomplished. I was encouraged by that, as we are trying to do it back home as well. However, it is not just about primary schools; it is about having AEDs available in streets, shopping centres, Government and local government buildings, and leisure centres. The Bill says that they should be available, but it does not put a cost factor on it. To make this happen is a win-win for the Minister and the Government.

I will explain where the campaign came from. The Minister will remember that we met with Mark King, of the Oliver King Foundation, whose 12-year-old son Oliver died of cardiac arrest during a school swimming lesson in 2011. I was incredibly moved, as I know the Minister was, by Mark’s experience. I was motivated too by his commitment to installing AEDs as far and wide across the community as possible. I know that he will be watching the debate today, and it will be a poignant one for him. Throughout this journey, I have stayed in touch with the foundation. I want to remind Members that this Bill was inspired by a young fella called Oliver King—a 12-year-old—and that we bring this debate to the Chamber in the hope of ensuring that Oliver’s legacy continues.

I am encouraged that in Northern Ireland, the Education (Curriculum) (CPR and AED) Bill has reached its second stage. This is not about politics; it is about the issue. That is the way I see things. I am a political person, of course, but what drives me is asking what is the right way to do things—that is important. One of my colleagues who is not of my party, Colin McGrath MLA, has brought the Bill to the Northern Ireland Assembly. We have worked together; he was keen to know what I was doing and I was keen to assist him back home in the Assembly. He has expressed his best wishes for the Bill, because it is just as important for children to acquire the CPR and AED skills that the hon. Member for Mid Derbyshire referred to, as it is for adults. It is good to see a devolved Administration talking, taking this on and encouraging others to follow suit.

I believe in acts and not just words. Very shortly, the hon. Member for High Peak (Robert Largan) and I will be doing an AED instruction session in the House, when we are able to. I am not sure when that will be, but we are hoping to do it this side of Christmas—the idea is to have a date that coincides with the Bill’s Second Reading on 10 December. It will be with David Higginbottom of Driver First Assist. My staff and I back home will also be taking part in a CPR and AED training session in the office in Newtownards led by Mrs Pauline Waring, superintendent of the St John Ambulance Dufferin Cadet Unit in Bangor. She, along with many other volunteer leaders, does incredible work with St John cadets by training them in first aid and lifesaving skills. It is always good to remember that the St John Ambulance is voluntarily staffed and funded by its own efforts; I encourage Members to engage with their local St John Ambulance if they can.

The hon. Member for Sedgefield, in his representation to the Committee for this debate, raised the very important point that many people are afraid of AEDs. They should not be, and that is why the training is important. Right away, people ask, “Will I know what to do?”. They will know what to do, because it is quite simple. I am not being smart by saying that; the instructions are really easy—they are easy for children to use as well, if that is necessary. People will learn that AEDs and CPR cannot do any harm; they can only do good. That is the motivation. I refer again to my message of hope for this debate, because anything that equips and inspires our young—anyone, in fact—to do good for the community carries the spirit of hope.

I want to raise some important facts about AEDs and CPR because they are two of the links in the “chain of survival” referred to in the UK Resuscitation Council’s updated guidelines. The third link is targeted temperature management. I want to touch on TTM here because I have been made aware of how this impacts on the recovery process. While the focus of this debate is on promoting the prevalence and availability of AEDs in public spaces and buildings, it remains essential that we consider the whole “chain of survival” once a person has experienced a cardiac arrest and been resuscitated.

In my constituency of Strangford one Saturday afternoon at a football match, one of the supporters collapsed at the side of the pitch. I spoke about this at the debate on the ten-minute rule Bill in February. What saved that man was the fact that the club had a defibrillator at all its matches. That is characteristic of all football matches in my region. People were able to resuscitate that man and he is alive today because the Portavogie football team and one of its staff members were able to get him back. He is alive today and can still attend football matches.

I want to give another example, but I am conscious of the time and other Members want to speak. A father was outside a school after leaving his children there. Unfortunately, he then had a heart attack. The children were inside and did not know what was happening to their daddy. The school had a defibrillator and, again, access to an AED saved that man’s life—he is alive today. Not only is he alive; he is able to continue taking his children to school.

I have given two examples, and I know that other Members will have lots of their own. It is hard not to get enthused about this issue, because of the clear benefits. I have referred to Christian Eriksen who collapsed at the football match. I acknowledge and praise the hard work and unfailing efforts of the Minister, who brought forward legislation in 2016 and 2019. Her support is needed if we are to get this done.

In May 2021, the Italian Government passed legislation requiring all offices open to the public with more than 15 employees, transport hubs, railway stations, airports, sports centres and educational establishments—schools, universities and all those places—to have public access to AEDs. In France, a Bill was passed in 2018 requiring almost all buildings where people gather to have access to an AED, including restaurants and shopping centres. It went a stage further by including holiday centres, places of worship, covered car parks and even mountain refuges. In Singapore, AEDs are carried in taxis.

In this House, we are at an important stage. We have more AEDs per head than across the whole of the country—that is not a criticism, Mr Hollobone. I am not saying we should not have them, but I would like to see that replicated everywhere else.

Covid-19 Update

Pauline Latham Excerpts

Monday 14th June 2021 Commons Chamber

[Matt Hancock]

I would love to surge vaccinate the whole country. Supply is the rate-limiting factor; it has been from the start. To surge the whole country would be to go as fast as we can, which is what we are doing already. Yes, we can surge in relatively small areas. In the areas that need extra support, which now constitute about 10% of England, we are increasing testing where we have the spare capacity, especially of the lateral flow kits; we are putting in place the guidance to be more cautious; and we are putting in place the extra support we can give to get the vaccines out, especially to groups who are harder to reach. But we need to bring the whole country forward with the vaccination programme. That is why we are going as fast as we can, and I am delighted that we are able to bring forward the date by which we will have been able to offer all adults a dose from the end of July to 19 July as part of what we are able to announce today.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

My right hon. Friend has taken the wedding industry up to the top of the hill and told them they can open up without restrictions, but marched them down again and said, “Only if you can socially distance.” Many wedding venues do not have huge rooms, so that is going to be very difficult. I am very concerned that the wedding industry, and the couples who want to get married are going to be incredibly disappointed by the announcement today. Is there no way that the Secretary of State can overrule that and allow them—with care, obviously—to go ahead with no restrictions so long as they are sensible, but without the fear of social distancing?

[Matt Hancock]

I of course understand why many in the wedding industry and many who are planning to get married in the next month would prefer to be able to do so without any of these rules at all. I do not want these rules either, but, unfortunately, we have a virus that is growing again. We have to take the extra time to allow the vaccines to come through, so the social distancing rules are staying in place right across the board. Carving them out for one very specific activity is something that we looked at, but that we found a very, very difficult decision to take for all sorts of reasons, legal and practical, and in terms of fairness to everybody right across the board in different circumstances.

Covid-19 Update

Pauline Latham Excerpts

Monday 19th April 2021 Commons Chamber

[Matt Hancock]

I refer the right hon. Gentleman to my previous answer, which is that the Chancellor of the Duchy of Lancaster is leading a review on this area that will report in due course.

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my right hon. Friend on the phenomenal roll-out of the vaccine programme, which has been astonishing. I, too, have had my second vaccine, which makes me feel much happier.

We have been told regularly that we are following the data, not the dates, but sadly it seems to be the other way round—that we are following the dates, not the data. We know that in Derbyshire, for instance, there are huge swathes of villages and towns with no covid whatsoever, and that is repeated over all sorts of areas of the country. Last week I managed to go out on several nights because I could—which was great, and the atmosphere was fantastic—but we need to start getting businesses back to normal. We need to get hospitality businesses operating, fully functioning, and using their indoor spaces. Some of the outdoor spaces I have been in are quite enclosed, so can we not go indoors as well now?

Coronavirus

Pauline Latham Excerpts

Thursday 25th March 2021 Commons Chamber

[Mrs Pauline Latham (Mid Derbyshire) (Con)]

Let me start by congratulating the Government on the remarkable success of the vaccination programme. It has been phenomenal and it has made many, many people feel incredibly safe, me included—I have only four weeks until my second jab, and. I cannot wait to get it, as I will feel even better. It has given reassurance to the elderly, the disabled and those people who have felt trapped in their homes for so many months—some did not even take advantage of going out much last summer. The Government have done a fantastic job with the vaccination programme.

Like my right hon. Friend the Member for North Somerset (Dr Fox), I want to congratulate those people who have worked day in, day out, without much thanks, to keep the country moving. I refer to the people in the public health system and, in particular, the people in the supermarkets, who have had all sorts of people coming in and standing pretty close to them, without knowing whether covid was being passed on or not.

There have been some remarkable successes in this pandemic, but there have been some errors. My view is that we have been moving the goalposts—they started at Wembley and they are now nearly at Derby County! I am extremely worried that if we are not careful, they will be up in Scotland. We thought the vaccine was going to be the thing that would save us, and it is going to save us. We are not where we were a year ago. We are much safer than we were then. People feel safer, but we seem to be thinking that still we cannot open hospitality businesses and weddings cannot go ahead in any sort of normal circumstance. That has such a huge impact on the rest of society—it is about the supply chains and all those single-people businesses that have had no help and no earnings for a year. We need to get those people back to work so that they can earn and get back on their feet.

We have to remember that this is not just about the pandemic; it is about the all-round health of the nation. We heard tragically from my hon. Friend the Member for Gloucester (Richard Graham) about suicides. There was one down the lane from us, which I did not even know about. It is tragic that there are so many suicides because people cannot face being trapped in their homes any more and they are frightened to go out. I agree with my hon. Friend the Member for Wycombe (Mr Baker) about stopping all these terrifying views through adverts and things in the paper. We need to say that we are doing well and will continue to do well—Europe permitting —to get the vaccines in. But we must move forward; we must let people out. Those hospitality businesses and wedding venues have spent hundreds of thousands of pounds protecting their businesses, but they are not allowed to open. The wedding industry—I wonder whether it is because the businesses are mainly run by women—has been left with contradictory messages, and I feel the Government could be much clearer about how weddings can operate and how quickly. It is Easter and love should be in the air, but it is not.

Health and Social Care Update

Pauline Latham Excerpts

Thursday 18th March 2021 Commons Chamber

[Matt Hancock]

The need to catch up on the backlog is there across all elective operations and of course that includes those for cancer. The good news is that the NHS has worked incredibly hard, especially in this second peak, to make sure that cancer services have remained working and effective as much as possible. Some cancer services have in fact delivered more than their normal pre-pandemic levels of care. The hon. Gentleman is absolutely right that we have to make sure that any backlog is reduced—that is a critical part of what I have been talking about today.

[Mrs Pauline Latham (Mid Derbyshire) (Con) [V]]

The vaccine roll-out has been incredibly successful, but we have now come up against a bit of a hiccup with the AstraZeneca vaccine. Europe does not seem to be too keen on using that vaccine; could we not use its vaccines? Will my right hon. Friend assure me that the Pfizer vaccine will be available for not just second jabs but first jabs in April?

[Matt Hancock]

My hon. Friend has put her finger on a certain irony in two different positions that our European friends are taking at the same time. The best thing to say is that I hope that, following the MHRA’s statement later today and consideration by the European Medicines Agency, we can get the vaccine going everywhere, because the data are really very clear that it saves lives, as the European Medicines Agency itself has said throughout past couple of weeks. It is important to follow the science on this one.