Sudden Cardiac Death: Young People

Gerald Jones Excerpts

Wednesday 1st February 2023 Commons Chamber

[Holly Mumby-Croft (Scunthorpe) (Con)]

I am very grateful to have the opportunity to speak on a genuinely important issue. What I am about to speak about was brought to my attention by my constituents, Stephen and Gill Ayling, who are in the Public Gallery today. They experienced the very worst thing that could ever happen to a parent when, sadly, their son Nathan died at the age of 31 in February 2019. While I was not fortunate enough to have known Nathan, we were close in age and we both went to the same local school.

Nathan lost his life to young sudden cardiac death after a problem with his heart went undetected all his life. Before his death, Nathan appeared fit and healthy. He played football and rugby regularly, and lifted weights and cycled. Stephen and Gill have previously described how they will never, ever be able to escape from the memory of when they found their son, who had died in his bed. As a parent myself, I cannot begin to grasp how utterly shattering that moment must have been. My condolences go out to them and to their family, and to all who knew and loved Nathan.

In the wake of Nathan’s death, Stephen and Gill became involved with the charity Cardiac Risk in the Young, which provides heart screenings—I will come on to this later—for young people. Stephen and Gill founded a community group, The Beat Goes On, which is a wonderful name and a wonderful tribute to Nathan. As part of the group, Stephen and Gill raised £10,000 to fund private screenings on 10 and 11 January this year, providing tests for 186 young people in our community. Ten of those young people have been referred for further cardiac investigation. I commend them for all their hard work and put on the record my thanks, and the thanks of many in our area, for all they have done for our community in Scunthorpe.

Last summer, I tabled a written question to ask the then Secretary of State for Health and Social Care what steps his Department was taking to increase the diagnosis rate of cardiac conditions in people aged 14 to 35. Once those conditions are diagnosed, it is often possible for them to be treated, either with pharmaceutical or surgical intervention or through lifestyle changes.

In the Government’s response, I was informed:

“Since July 2021, we have launched community diagnostic centres (CDCs) to increase diagnostic activity and reduce patient waiting times. CDCs offer checks, scans and tests in community and other health care settings and delivered over 880,000 diagnostic tests…This will support Primary Care Networks to increase the detection of conditions such as heart valve disease.”

While that answer is good news for some people, I would welcome any assessment the Government have carried out of how helpful those diagnostic centres are in relation to heart conditions in young people specifically.

I was also told:

“The diagnosis of cardiac conditions is based on the presentation of symptoms, rather than the age range of the patient”

or their genetic risk factors. That is a crucial point, and for young people it takes us to the crux of the problem. Research has shown that in 80% of cases of young sudden cardiac death, there were no prior symptoms of a heart defect; no opportunity was presented to step in and intervene and potentially save a young person’s life. As a result, families have lost sons, daughters, brothers and sisters—someone they loved.

Doctors have raised with me their concerns about a completely symptom-focused approach to young people. Aside from the fact that the overwhelming majority of people who have this condition do not exhibit symptoms, my understanding is that the symptoms that GPs are trained to look for are breathlessness, heart palpitations, dizziness, chest pain and losing consciousness. Those are common symptoms that can be attributed to other ailments, many of which will be more common in young people. As such, GPs could potentially misdiagnose a heart condition, perhaps providing medication—for anxiety or depression, for instance—that could aggravate an undiagnosed condition.

The best approach to take in healthcare is always a preventive one—a process that intervenes to stop someone suffering or dying. In cases involving young people, the best way to do this may be through proactive screening. The majority of conditions—but not all—associated with sudden cardiac death in the young can be identified on the basis of an electrocardiogram, or ECG, abnormality. That is the type of screening that Stephen and Gill, and other parents like them, and CRY fundraise and campaign for, sometimes resulting in follow-up tests. Approximately one in 300 people screened by CRY will be identified as having a potentially life-threatening condition, and one in 100 will be identified as having a condition that could cause significant problems by the ages of 40 or 50. Those conditions need to be monitored every three to four months, so that action can be taken when most appropriate.

As my hon. Friend the Minister knows, in 2019 the UK National Screening Council recommended against a systematic screening programme for cardiac conditions in the young. There is set to be another review by the end of this year. I would like to speak briefly first on the previous review, and then on the future one.

One of the reasons cited for not rolling out a screening programme was the continuing uncertainty over the true incidence rate of sudden cardiac death. To say that there was not a consensus on what that figure was would be a gross understatement. I cannot stress enough how important it is that we have accurate data on that issue, especially if it is influencing clinical or policy decisions.

In preparation for this debate, I spoke to representatives from CRY. They said that, just on the basis of the number of autopsies they are performing at their centre for cardiac pathology each year, we are disastrously underestimating the full extent of the problem. I want my language to be very clear, so I repeat that they say that we are disastrously underestimating the full extent of the problem.

In order to shed light on the issue, one of the stakeholders contributing to the review stated that it would be

“very helpful if the review outlined more specific research recommendations, providing potential researchers with a framework of the characteristics of a project that could address the uncertainty.”

I have spoken to others involved with the review, who advised me that that framework was not in place. I would be grateful if the Minister could urge the UK National Screening Council to provide clarity, so that we can get reliable data that we can use to make policy decisions. Without that, we risk having an unhelpful fog shrouding this issue; if we do not dispel it, we may lose more lives to undiagnosed heart conditions.

Similarly, there are questions about testing accuracy. Some stakeholders have asked for more specific research recommendations. In particular, it is really important to specify the test, or group of tests, that would enable simultaneous screening for all the potential causes of sudden cardiac death. Again, I ask the Minister to push for those recommendations to be laid down, so that the scientists can get on with the job that they do best.

Looking forward to the next review, I would be grateful if the Minister confirmed a timeline for when this will be completed and when we should expect the findings to be published. It is important to note that several other countries are steps ahead of us when it comes to proactive screening programmes, and, although I appreciate that these might be out of scope of the review, I do think it would be a missed opportunity not to raise them. Several American sporting bodies—

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

I congratulate the hon. Lady on securing this debate. My goddaughter, Sophie Pearson, passed away in 2006 at 12 years of age from cardiomyopathy. Sophie’s parents spent many years helping to raise awareness and raise funds. I congratulate the hon. Lady on the work that she is doing and hope that the awareness that she is raising today will go some way in supporting families and avoiding unnecessary deaths of young people.

[Holly Mumby-Croft]

I am terribly sorry to hear what the hon. Gentleman said, and I thank him for his intervention.

Let me continue on the sporting aspect. Italy has introduced pre-participation screening. Although I appreciate that there are issues with extrapolating the data to the non-athletic population, one study in 2006 did show that screening led to an 89% fall in sudden cardiac death in that cohort.

I know that every Member in this House will be united in wanting to reduce the number of young people dying from undiagnosed cardiac conditions, and expanding access to the screening available will help to reduce that.

World Menopause Day

Gerald Jones Excerpts

Thursday 27th October 2022 Westminster Hall

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate my hon. Friend the Member for Swansea East (Carolyn Harris) and the right hon. Member for Romsey and Southampton North (Caroline Nokes) on securing this debate to mark international Menopause Day, and also on their work to raise awareness of the need to be talking much more about menopause and to challenge many of the taboos that exist around this issue in women’s health. Potentially, around 51% of our population will experience menopause, so the lack of discussion absolutely needs to be challenged. I know that, in my hon. Friend the Member for Swansea East, there is no better champion to bring a focus to this issue and shine a light on the needs of women across the nation, and of course those of their families.

I absolutely do not profess to be as aware as many others here of the issues and challenges faced by women going through the menopause, but I recognise that it is a significant issue and one that has a big impact on society, workplaces and, more importantly, women themselves. That is why it is incumbent on us all, including men, to be aware and to do everything possible to offer support, because we know that around 75% of menopausal women experience symptoms and that around one third of those suffer severe symptoms.

We have heard from hon. Members about the various studies showing that around 75% to 85% of menopausal women are in work. There is a great need to tackle attitudes and implement policies related to the menopause in the workplace, to ensure that women are supported and do not feel forced out of their jobs. It is staggering to learn that nearly 1 million women leave their workplaces due to menopause every year, and we all appreciate that that will exacerbate gender inequality in the workplace and, indeed, the gender pay gap. It is unfortunate and absolutely wrong that many employers still fail to consider menopause as the proper health condition that it is. We know, too, that there is a significant lack of supportive policies to help those going through the menopause.

Women who have experienced the menopause while working have discussed the frustration of suffering from a loss of concentration—we have heard many examples today—brain fog, fatigue, anxiety, hot flushes, sweats and bleeding while at work, along with a range of other symptoms. My awareness of the symptoms and impact of menopause was raised when I was invited—that is perhaps not the right word—by my hon. Friend the Member for Swansea East to a menopause event at the Labour conference in Brighton last year, where, among other things, I attended a session of menopause bingo. That certainly raised my awareness—yes, there are lots of symptoms.

Many will have seen the Fawcett report, “Menopause and the Workplace”, which has been referred to today. It highlighted the fact that only 22% of women and trans men disclose when they are experiencing the menopause, while half said that it made them less likely to apply for promotion and a quarter said that they would consider early retirement. These are quite depressing figures. Surely the Government must therefore co-ordinate and support an employer-led campaign to raise awareness of menopause in the workplace and help to tackle the taboo surrounding menopause and work. Of course, the most important thing is that employers recognise the need to be aware and offer support to their employees. Policy may differ, but the key thing is that employers do not ignore the issue. Sadly, that has been the case for too long with many employers.

I end by once again congratulating my hon. Friend the Member for Swansea East and the right hon. Member for Romsey and Southampton North, and thanking all those involved in the APPG for the work it does to support women and their families across the UK and to tackle the lack of awareness. The APPG’s recent report highlighted the impact of this issue, and it is incredibly welcome. The report rightly highlights the need for reform and the need for more to be done to increase awareness. I hope that the Government will listen and take action.

Menopause (Support and Services) Bill

Gerald Jones Excerpts

2nd reading
Friday 29th October 2021 Commons Chamber

[Paula Barker (Liverpool, Wavertree) (Lab)]

I start by reflecting on the importance of these sitting Fridays. They are full of noble pursuits, with hon. Members trying their utmost to leave their small stamp on the world.

To my hon. Friend the Member for Swansea East (Carolyn Harris), whether it is this Bill today, or measures on gambling machines, school holiday hunger and child funeral costs, she always champions the right and just causes, using her voice in this place to elevate the voices of those who feel that they have been long forgotten. I congratulate her and thank her for the support that she has always given me.

Madam Deputy Speaker, perhaps this will come as a surprise to you, as it will, I hope, to everyone in this place today, that I, too, am a woman of a certain age. The challenges that women face in this place are great. Many women may be starting families or raising young families and I can only imagine how difficult that must be.

I was first elected in December 2019, not long ago, and my two sons were of high school age. I had avoided such challenges, but new ones presented themselves. I want to briefly share a little of my personal experience. A number of years ago, I had a blood test and went to get my results. I was told by the GP quite incredulously, “You are in your 40s and peri-menopausal.” A few weeks ago, I contacted the GP to ask for a referral to the women’s hospital in Liverpool to go to the menopause clinic. He asked me why. I said that I wanted to discuss HRT. He said, “We can prescribe HRT.” I replied, “I was told I had to discuss that with the nurse, and last time I discussed my symptoms with her, she prescribed anti-depressants to me when I wasn’t depressed. I also asked her how long I needed to take the medication for. She told me, ‘Forever’.”

That story is not unique; it is the story of so many women. Whether it is brain fog or migraines, whether it is hot flashes—which I have suffered incredibly from all morning—weight gain or overwhelming tiredness, as a perimenopausal women, I know all these signs and symptoms to be true and real, and I appreciate the toll that it can take on physical and mental health.

Despite my challenges, I know how lucky we in this place are. The challenges that perimenopausal and menopausal women must negotiate in the workplace are many and sometimes complex. Many co-workers simply do not understand bosses and shift managers concerned at the drop in productivity, the changes in mood and the need for time off, given the irregular periods, bladder problems and much else besides. There are no warning signs, and no timeframe is set out by our bodies, which are all unique and respond very differently.

As my hon. Friend the Member for Swansea East set out so eloquently with her Bill, we should abolish prescription charges for HRT right away, and what is so evidently lacking is a national conversation on the menopause. That is why clause 2 is so important.

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

I congratulate my hon. Friend the Member for Swansea East (Carolyn Harris) on her campaign, which she has delivered in her inimitable and passionate style, which we know and love. As well as awareness in medical school and in the workplace, does my hon. Friend the Member for Liverpool, Wavertree (Paula Barker) agree that it is hugely important that we have awareness across society? Until this campaign, my awareness of menopause was shockingly bad and awareness in society, particularly among men, is really important.

[Paula Barker]

I thank my hon. Friend for his intervention. I was going to say that education and awareness for those of school age right through to GP practices should form the backbone of a new dawn for women, who so often feel alone and frustrated that men around them just do not get it.

Finally, I say to my hon. Friend the Member for Swansea East: “From one sister to another, I stand with you today and with every woman out there who needs to know that someone, somewhere has got their back.”

Health and Social Care Workers: Recognition and Reward

Gerald Jones Excerpts

Thursday 25th June 2020 Commons Chamber

[Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)]

I am pleased to be able to speak in this important debate, supported by millions of people across the country, including some in my constituency. Nothing we do will ever truly recognise our care workers for what they do, but the Government must acknowledge their sacrifices and their dedication and commitment. As Ministers and Members from across the House have acknowledged time and again during the pandemic, these are truly exceptional times. Our NHS and care workers across the UK are doing truly exceptional work, so often invisible to the vast majority of us.

It has never been more important than now to recognise the invaluable contribution our care workers make, especially those who are not paid properly for their sacrifices and the often difficult and long hours they work to support those in need, families and local communities. I pay tribute to the Welsh Labour Government for leading the way, as ever, in recognising care workers. In April, the Welsh Government agreed a £500 payment and subsequently agreed that it will apply not only to carers in Wales, but to cooks, cleaners and a range of other key frontline staff working on the frontline in care who make an immeasurable contribution to the health and wellbeing of those most in need.

I urge the UK Government to do the right thing, make an exception in this case and allow care workers to keep the entire £500 one-off payment in recognition of their efforts not only during the pandemic, but all year round. To do anything less is an insult to the sacrifices they have made and the pressure that they put themselves under to care for those most in need during such a difficult time. I ask the Minister to confirm that she will make representations to the Treasury in this regard and will indeed allow carers in Wales to receive the full £500 in recognition of their amazing efforts during the pandemic, and remove the tax requirement in this case.

The Welsh Government have arranged for payment to thank care workers, despite operating on a budget from Westminster that has been subjected to a decade of harsh austerity. As we have heard, there are many ways in which the UK Government can give proper recognition to the many thousands of people working in social care across the country, rather than simply clapping on a Thursday night. The Government should fully recognise the work of care staff and, at the very least, increase pay, testing and the provision of PPE for NHS and care workers immediately to ease the immense pressure on the shoulders of many who provide care to those in need, allowing them to feel safe, given the many risks they face day to day, not only on the frontline during the pandemic but throughout the year. I urge the Government to act and I hope the Minister will respond accordingly.