Covid-19 Update

Bob Stewart Excerpts

Thursday 26th November 2020 Commons Chamber

[Matt Hancock]

Yes, I agree with every word of what the hon. Lady said.

[Bob Stewart (Beckenham) (Con)]

My constituency of Beckenham is very relieved to be in tier 2. Very kind of you, Secretary of State. I have had a couple of constituents ask me whether they have to have a vaccination. I have said that no, they do not, as far as I know. Can he tell the House what percentage of the population is required to be vaccinated in order for the measures to be effective, so we can get back to normal?

[Matt Hancock]

I would urge everybody to get a vaccination, if we manage to get a vaccine that is approved by the authorities, because the regulator will only approve a vaccine if it is safe and effective. Having said that, we are not planning to make it mandatory, because we hope that the vast majority of people will take it up, not least because it will help to protect them and their community, and get the whole country and indeed the world out of the mess we are in.

Coronavirus Regulations: Assisted Deaths Abroad

Bob Stewart Excerpts

Thursday 5th November 2020 Commons Chamber

[Matt Hancock]

That incredibly important and sensitive matter needs to be considered as part of the overall approach. These questions should all be brought out in a debate on this subject. That is Parliament’s role, given that this is an area of conscience on which the Government do not take a view.

[Bob Stewart (Beckenham) (Con)]

It is very sad that anyone has to go abroad to end their lives when they have a terminal illness—I find that dreadfully sad. I ask my right hon. Friend, because I am unsure of this: how many people on average go abroad to end their lives every year?

Covid-19

Bob Stewart Excerpts

Thursday 22nd October 2020 Commons Chamber

[Matt Hancock]

I want to keep it that way. It is true that the all-cause mortality rates are around the typical levels for this time of year, and that is partly because non-covid deaths are actually lower at the moment than in most years, and because, thus far, we have worked to keep this virus under control. We know from the basic mathematics of compounding growth and the exponential nature of the growth of any virus that the number of deaths will increase if the number of cases increase exponentially, hence the need for the actions that we in this House have voted for.

[Bob Stewart (Beckenham) (Con)]

On that point, many of my constituents were frightened to go to hospital because they thought that they might get infected with covid. With that in mind—I am quite sure my right hon. Friend has thought of this—would it not be an idea to separate out hospitals, so that we have a covid centre of excellence, say using the Nightingale hospitals, where everyone goes, and then the normal hospitals that deal with everything else? Forgive me for raising this point, because I am quite sure that the Secretary of State has a very good answer.

[Matt Hancock]

It is a brilliant idea—so brilliant that the NHS has spent the summer working on that concept. We cannot do it as perfectly as my hon. Friend suggests, and the reason is the practicalities of the treatment of covid—for instance, if someone has covid and something else, they need a normal intensive care unit. But the Nightingale hospitals are there—in fact today, sadly, the Nightingale hospital in Manchester is reopening. For all the rest of the hospitals, we are making sure that different parts of the hospital are deemed either blue or green—essentially covid-free or at risk of covid. Some of the different buildings are covid-free or non-covid, or, in some cases, whole hospitals are covid green sites and people cannot go to them unless they have tested negative. That means we can have a high degree of confidence because, for instance, if we are treating cancer patients, we want to ensure that there is not any covid in there.

We need these long-term solutions and, like other liberal democracies around the world, we are wrestling with this question—as we have wrestled with it in the last few minutes—of how to keep people safe from the virus while protecting other important things in life: our liberties, our livelihoods and the things that we love. That is what leads us to the strategy of suppressing the virus and supporting the economy, education and the NHS. The NHS needs to be supported to do all the other things that it needs to do until a vaccine is available.

I reject the false choice that says we must pick a side and choose between a healthy economy and a healthy nation, because the two are intrinsically linked. If, God forbid, we were to let the virus unleash its full force, the damage to not just the NHS and the hundreds of thousands of lives, but our livelihoods would be catastrophic. We can only get our economy and our society going gangbusters again if we drive this virus down, so that people have the confidence that they need to live their lives to the full—and drive it down we must.

This is a deadly virus, and, yes, it reserves its biggest impact for the oldest in society, which means the rise in the number of cases among the over-60s gives me a lot of cause for concern. We also just heard compellingly from the Minister for Equalities about the impact on people from ethnic minority backgrounds, but the impact is not confined to these groups. The virus can affect anyone of any age and any background, and we have already seen worrying numbers of young, fit, healthy people suffering debilitating symptoms months after contracting covid. Yesterday, a study by King’s College London showed that one in 20 people with coronavirus is likely to have virus symptoms, such as fatigue, breathlessness, muscle pain and neurological problems, for eight weeks or more. Yesterday, I visited the cutting-edge long covid clinic at University College London hospital. I have met people in their 20s and 30s unable to work, sapped of all their energy, living with the long-term effects of a virus that has completely changed their lives. Therefore, to anyone of any age, catching covid can be very grave indeed. Long covid underpins, again, our strategy for suppressing the virus until a vaccine arrives.

--- Later in debate ---

[Chris Bryant (Rhondda) (Lab)]

I want to talk about a dangerous bit of fake science that is doing the rounds—the so-called Great Barrington declaration which calls for focused protection for the vulnerable and ending all lockdowns and restrictions so that everyone else should immediately be allowed to resume life as normal. It sounds wonderful, doesn’t it? Idyllic. Some 6,300 people have signed the declaration. That sounds impressive, but that is a tiny, tiny proportion of all the medical professionals in the world, the vast majority of whom dismiss that approach out of hand.

Many of the signatories to the declaration are not world-leading epidemiologists and virologists. Many of them are homeopaths and self-certified therapists. They include the famous Dr Johnny Bananas, the Rev. Booker Clownn, Dr Person Fakename and Mr Matt Hancock, although not the one of this parish. I remember what fake science did over the MMR vaccine when lots of journalists paid court to one man, Dr Andrew Wakefield, simply because he had the title Doctor in front of his name. That caused immeasurable harm to a very important vaccine programme.

Some of the people who signed the declaration told us earlier this year that the virus would just melt away by the summer and others guaranteed that there would not be a second wave. Yet some people still support them. None of the declaration’s assertions is supported by evidence. They do not even pretend to be. There are no references to peer-reviewed research; they are simply assertions.

It is completely wrong to call people who believe all this stuff “nutcases”. I did earlier this week and I wish that I had not used that word the other day. I have worked long enough in acquired brain injury and as a personal counsellor to others to know that that is wrong. I apologise. But this really is a fringe opinion shared by conspiracy theorists, funded by hard-right economic libertarian extremists in the United States of America and advocated entirely by fake scientists. Ignorance is one thing. Deliberate ignorance really is stupidity.

At the heart of the declaration is the belief that we need to acquire herd immunity by letting everybody get infected. The facts—and there are no alternative facts here—are that there is no evidence that contracting covid-19 grants long-term immunity to future infection. We already know that one can catch it twice and it is not yet a year old. Other coronaviruses only grant temporary immunity. Fact.

[Bob Stewart]

To support the hon. Gentleman’s case, may I point out that if we could achieve herd immunity, we would not contract diseases like measles? We still get them, so herd immunity is impossible to achieve.

[Chris Bryant]

In this case, the point is that we will not achieve herd immunity just by trying to let everyone get the disease. That is an immoral proposition. We have all heard the line that this virus is not that dangerous and is less dangerous than flu. I am sure that we have all had emails about it. The facts—and again there are no alternative facts here—are that covid is more easily transmitted than flu and has more complications for more people. Between January and August 2020, there were 48,168 deaths due to covid-19—not associated with it—compared with 13,619 deaths due to pneumonia and 394 deaths due to influenza. The number of deaths due to covid up to 31 August this year was higher than those due to influenza and pneumonia in every single year since 1959, including years when we did not have a vaccine for flu.

The other theme of the great declaration is supposed to be focused protection. Again, that sounds great—“let’s protect the most vulnerable”—but we cannot just shut the elderly and vulnerable away and throw away the key. They do not live in hermetically sealed units, funnily enough. They rely on nurses, carers, home helps and family members. All those people would presumably have to be locked away. Is somebody going to suggest that the most vulnerable communities—in fact, the BAME community—are en masse all going to be locked away, as well as the overweight, no doubt, and all the men? Of course, that is a complete and utter nonsense. By one estimate, we would be incarcerating a quarter of the whole UK population.

There is a cruelty at the heart of this proposal: it is basically survival of the fittest. Yes, it does make me angry when people propose it. It makes me angry for those who have lost loved ones this year, who seem to be ignored. It makes me angry for the NHS staff who have slogged their way through the misery on our behalf and need us all to realise that there is a much better creed than survival of the fittest, and it is that we are all in this together.

Down Syndrome Awareness Month

Bob Stewart Excerpts

Thursday 22nd October 2020 Commons Chamber

[Dr Cameron]

I thank the hon. Gentleman for raising that extremely important point. I do share his concern. I understand that, in England, the number of babies born with Down’s syndrome is down by about 30%. I was alerted today to an article in one of our Scottish papers, the Daily Record, about Stacey Corrigan, whose six-year-old son, Daniel Murray, has Down’s syndrome. She said:

“When many think of Downs Syndrome it’s most often with a negative outdated view”.

She also said that the language used by medical staff when speaking to parents-to-be is really important and should not be negative, and that parents should be given “balanced information and support”.

As I was saying, I want to build on the positivity and speak about people’s talents, passions, hopes and dreams. Their accounts are not uniform and follow no common narrative, but that is exactly the point. The richness and diversity of the Down’s syndrome community across the UK reflects the richness and diversity of society at large. However, all too often their lives and contributions have historically been medicalised or pigeon-holed into discussions about difference and limitations rather than talent, skills, ability and contribution. A more comprehensive and accurate narrative needs to be provided.

One baby in every 1,000 in the UK is born with Down’s syndrome, and there are approximately 40,000 people who have Down’s syndrome living in the UK today. Down’s syndrome was first described by an English physician, John Langdon Down, in 1862, and that then became the universally accepted descriptive term. It is a genetic condition occurring as a result of an extra chromosome—chromosome 21. People with Down’s syndrome can experience cognitive delays, but the effect is usually mild to moderate and is certainly not indicative of the many strengths and talents that each individual possesses.

People with Down’s syndrome have an increased risk of certain medical conditions such as congenital heart defects and respiratory and hearing problems, to name a few, but many of those conditions are treatable. Nowadays, most people with Down’s syndrome lead healthy lives.

[Bob Stewart (Beckenham) (Con)]

I thank my friend, the hon. Lady, for giving way. My family had a child with Down’s syndrome when I was young, and unfortunately he died very young. Does she agree that modern medicine has extended the lives of people with Down’s syndrome so much that they live as long as anyone else—perhaps as long as me?

[Dr Cameron]

I thank the hon. Gentleman for all his excellent work in the House of Commons in so many ways, on this issue as well as on the armed forces. I totally agree with his point; in fact, I understand that life expectancy has increased dramatically in recent decades, from 25 years in the ’80s to 60 today. Medical science has advanced and people can live extremely healthy and long lives and be great contributors to our society.

Every person with Down’s syndrome is, of course, a unique individual. People with Down’s syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote—which we should all remember to do—and contribute to society in many wonderful ways.

--- Later in debate ---

[The Minister for Care (Helen Whately)]

I would like to thank the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) for securing this debate on this important topic, and also for her work as chair of the all-party parliamentary disability group. Thanks to her, we are marking Down Syndrome Awareness Month here in the House with this debate today, and I am truly pleased that we have this opportunity to celebrate the brilliant contribution that people with Down’s syndrome make to our society, and also all the work of the many people and organisations who support those with Down’s syndrome to live their lives to the full.

Today, the hon. Member has outlined some fantastic stories about the achievements of people with Down’s syndrome, and also their hopes and dreams. I would like to share Michael’s story with the House. Michael has Down’s syndrome, a visual impairment and the muscle condition hypotonia. Despite his family being warned by doctors that he would probably need a wheelchair for the whole of his life, Michael has represented Wales and Great Britain in the Special Olympics and he has won more than 60 medals, which is an incredible achievement. He has not let the pandemic stop his plans. Earlier this month, he ran his first marathon in support of Mencap. He ran through rain, wind and mud to complete the virtual route around his local area in Wales. I want to take this opportunity to extend my congratulations to Michael on such an outstanding achievement.

While Michael’s achievements stand out as an inspiration to us all, I also want to celebrate the everyday achievements and contributions that people with Down’s syndrome make to their families and our communities, and the contribution they make to employment through participation and through love, friendship and laughter, enriching all our lives. That said, people with Down’s syndrome still face too many challenges and barriers. I want to see a society that works for everyone, where everyone can participate fully, feel included and be free to be themselves, so I want to talk briefly about some of the work we are doing to ensure that disabled people, including those with Down’s syndrome, are enabled to live full and rewarding lives.

First, in education, our ambition is for every child, no matter what challenges they face, to have access to a world-class education that sets them up for life, and that absolutely includes children and young people with Down’s syndrome. Supporting children, young people and adults with special educational needs is a particular need for us at this time, and our aim, even during the pandemic, is that education, health and care continue as far as possible, so that children and young people with SEND get the provision and support they need to fulfil their potential and achieve their ambitions.

The hon. Member spoke about work and employment in her excellent speech. We want everybody to have the opportunity to participate in meaningful and rewarding work and to gain the life skills and rewards that come from doing that. I am sure she knows from her work on the APPG that the Government have several programmes in place to support disabled people. An example is the Access to Work grant, which enables employers to buy personalised and tailored support to help disabled people to move into and retain employment. I should also say that, during the pandemic, Access to Work has particularly strengthened its support by making greater use of assistive technology and supporting the transport of assistive technology from workplaces to homes to enable more disabled people to work from home.

There is also the intensive personalised employment support programme, which helps disabled people with complex needs who want to work but require specialist support to do so, and the Disability Confident scheme, which supports employers to have the confidence to recruit and retain disabled people. However, I will take away the hon. Member’s question about what specific support is available through the kickstart scheme for people with disabilities, and also her point about particular schemes for those with disabilities to start their own businesses.

I also want to talk about health inequalities. We had a brief exchange about the improved life expectancy for people with disabilities, particularly those with Down’s syndrome, but despite the increase in life expectancy, there are still health inequalities facing those with Down’s syndrome and also those with learning disabilities. For instance, they are more likely to experience premature mortality. The recent Learning Disability Mortality Review report stated that the life expectancy gap for those with learning disabilities is 22 years for men and 27 years for women. That is absolutely not right.

[Bob Stewart]

When I was born in 1949, the life expectancy of someone with Down’s syndrome was 12 years. The life expectancy now, we hope, is somewhere in the 60s or 70s. I am sure the Minister will agree that we have to find a way to employ these people properly, and not just because, as some people would say, they are disabled; in my view, they are not.

[Helen Whately]

I completely agree with my hon. Friend. I do know that those with Down’s syndrome are in employment, but let us continue to support that as one of the rewarding things for everybody to experience in life. As he said, life expectancy has indeed improved enormously, but I am ambitious and determined that we go further and make sure that we reduce health inequalities for people with disabilities.

Botulinum Toxin and Cosmetic Fillers (Children) Bill

Bob Stewart Excerpts

2nd reading & 2nd reading: House of Commons
Friday 16th October 2020 Commons Chamber

[Laura Farris]

I must confess to my hon. Friend that I found that particular story in the scientific tome that is the Daily Mail. I must also confess that when the details of that particular mother came to light and her story was reported, the child was at least temporarily taken into care. That is probably not a surprise to any Member.

I would like to give three reasons for supporting the Bill. The first relates to something that my hon. Friend the Member for Sevenoaks touched on: the skyrocketing number of botched procedures. In 2018, approximately 610 botched treatments of this nature were reported; that had more than doubled by 2019.

[Bob Stewart (Beckenham) (Con)]

This sounds awful. I am learning by sitting here and listening to this. Has anyone died as a result of these procedures? Apart from perhaps medically, has anyone been affected mentally and committed suicide? Have these procedures killed anyone?

[Laura Farris]

I am not aware of any case where somebody has, but I am happy to take an intervention on that point. However, focusing on personal injury, we can probably all agree that this is an area of law that is ripe for change, regardless of whether a child has actually died from a complication.

--- Later in debate ---

[Mike Wood (Dudley South) (Con)]

It is nice to be able to start a speech in a debate on a private Member’s Bill without having to declare an interest, although my children suggest I should perhaps reconsider. As the next piece of business is on drugs testing in prison, I should say that the same applies to that debate.

Shortly after I was elected in 2015, a constituent came to one of my surgeries with a case that was later taken up by Save Face. It concerned a cosmetic surgeon who was conducting procedures from his home in my constituency, claiming to be a nurse consultant and describing himself as on the same level as a doctor. The truth was that he had been struck off for failing to disclose a serious assault conviction related to domestic abuse.

The lack of safeguards around these procedures is shocking, as is the lack of accountability of many of those carrying them out. That is a huge problem for the population as a whole. Fortunately, my constituent’s daughter’s procedure was not botched, but too many are. When they are, they too often have life-changing impacts. That is a terrible scar—quite literally—for many adults, but when it affects children and young people we have a particular responsibility to act.

The growth in botox, fillers and other similar cosmetic procedures is of great regret to Members on both sides of the House, because it reflects a deeper problem in society and the way that people feel about themselves and value themselves. A large part of it is down to the effect of celebrities and influencers in making treatments popular, particularly among young people who see Kylie Jenner in TV shows such as “Keeping Up with the Kardashians”, to give just one example, as a way of measuring their own worth, yet nothing could be further from the truth. That is damaging enough when the actions taken amount only to a filter on Snapchat to alter appearance into some idealised version, but it cannot be right to leave unregulated such permanent life-changing surgery on people who are not yet at the age of majority. There is a responsibility to act in law.

I am pleased by the work that Girlguiding has done to promote body confidence through its Free Being Me programme, helping to address some of the root causes of this trend. There is a clear need for the Bill that my hon. Friend the Member for Sevenoaks (Laura Trott) has rightly introduced to restrict the use of such procedures on children for aesthetic purposes when it is not medically necessary.

[Bob Stewart]

Will my hon. Friend give way?

[Mike Wood]

Very briefly, and then I must move on.

[Bob Stewart]

I am absolutely shocked that anyone who is not medically trained could wield a syringe, particularly on someone who is under 18. That is what I have learned this morning, and I suspect my hon. Friend agrees with me.

[Mike Wood]

I absolutely agree. When people are unqualified and also uninsured, there is a lack of accountability and recourse when things go wrong.

Too often people focus on the cosmetic part of cosmetic surgery, and imagine that it is a development of putting on make-up, whereas of course it is surgery in every sense of the word. Like all surgery, it has real risks. When it is being used for aesthetic purposes, it is one thing for adults to be allowed to make their choices while being aware of the risks, but we cannot allow that for children and young people. We rightly legislate to protect our young people. We rightly say that under-18s cannot use sunbeds or get tattoos because of the risks and the long-term impacts, but the acute risk that comes with Botox and similar procedures is far more immediate and drastic. As other Members have said, it is an outrage that this is not yet illegal, so I congratulate my hon. Friend the Member for Sevenoaks on bringing forward the Bill. In doing so, she has done a great service to our nation, and I am proud to support it this afternoon.

Social Distancing: 2 Metre Rule

Bob Stewart Excerpts

Monday 15th June 2020 Commons Chamber

[Mr Speaker]

I call the gallant Member, Bob Stewart.

[Bob Stewart (Beckenham) (Con)]

Mr Speaker—at least I have got that right this week. Mr Speaker—not Mr Deputy Speaker. I have at last acknowledged it.

My question is very much like that from my hon. Friend the Member for Broadland (Jerome Mayhew). As the R figure approaches zero—in some places, it is getting there—why the heck do we need social distancing, face masks on public transport and social isolating? If we get near zero, surely we can get back to normal.

[Edward Argar]

I am always grateful for questions from my hon. and gallant Friend. The latest figures—as of last week—are that R is not near zero, but is between 0.7 and 0.9. That shows that the infection and transmission rate is going down, but it is still only just below 1, which is why we must keep up the pressure on this disease and keep transmission rates down. He is right, as my hon. Friend the Member for Broadland (Jerome Mayhew) alluded to, that as that figure and the transmission rate falls further, there will be more opportunities to relax, step by step and cautiously, the restrictions, but we are not there yet.

Lesbian, Bisexual and Trans Women’s Health Inequalities

Bob Stewart Excerpts

Tuesday 10th March 2020 Commons Chamber

[Hannah Bardell]

I absolutely agree. Technical details of legislation and the concerns that people may have can and should be discussed, but they have to be discussed in a respectful way. As my hon. Friend says, there is open season on trans people. We could literally cut and paste some of the rhetoric that was used against lesbian, gay and bi people the ’70s and ’80s. That it is now being used against trans people is just utterly deplorable. We must do everything we can to protect trans and non-binary people’s rights and their mental health.

We know the LGBT community, including lesbian, bi and trans women, experience significant health inequalities and specific barriers to services and support. Stonewall Scotland’s survey of LGBT people in Scotland found that half had experienced depression in the past year, including seven in 10 trans people, and that more than half of trans people have thought of taking their own life in the past year. Let us just reflect on that. Half of trans people have thought of taking their own life in the past year. So when we think about and reflect on the debate that is currently ongoing, we must look at that statistic and take it very, very seriously.

[Bob Stewart (Beckenham) (Con)]

The hon. Lady refers to half of trans people. Can she put a figure on that? I would like to know, because that is terribly sad.

[Hannah Bardell]

The statistic in the Stonewall Scotland report is 52%. That is specific to Scotland. I do not have the exact number, but I am very happy to get it and to share it with the hon. Gentleman. It is a significant number.

One in six LGBT people have deliberately harmed themselves in the past year. One in four LGBT people have witnessed discriminatory or negative remarks against LGBT people by healthcare staff. One in eight LGBT people have received unequal treatment in the healthcare system because of their sexual orientation or gender identity. Almost two in five trans people have avoided healthcare treatments for fear of discrimination. One in four LGBT people have experienced healthcare staff having a lack of understanding of specific lesbian, gay and bi health needs, and nearly three in five trans people have experienced healthcare staff having a lack of understanding of specific trans health needs.

I understand that some of these matters are very technical. They are challenging and they require a level of expertise. That is why education, open discussion and proper resourcing in Scotland and across the UK is absolutely vital. We know how incredibly hard staff in the NHS work in all countries and parts of the UK. We salute them. However, the studies show that there is a bit more work to be done. I want to share some of the experiences that a number of lesbian, bisexual and trans women have been kind enough to contact me and offer. Their very personal experiences and perspectives are invaluable. It is right that today in this debate we give them a voice.

One trans woman who transitioned a number of decades ago in another country, but who now lives in the UK, contacted me with her experience. She says:

“Almost all of my medical appointments have been for general medical issues. The only time I have seen anyone in the GIDS”—

Gender Identity Development Service—

“pathway was once when I had a consultation with a surgeon…regarding a long-term consequence of the particular type of gender reassignment surgery I had, which was satisfactorily resolved.”

She mentioned issues with access to drugs, but that was not necessarily about her being trans; it was about two health boards in England not speaking to each other, and it was resolved. She said that all these appointments were handled in a very courteous, respectful and professional manner. “However,” she says,

“I suspect the combination of my age, the length of time since my transition, and especially my professional status may have afforded me a certain degree of privilege. I’m not certain others, particularly younger transwomen or those who are just beginning transition, would necessarily have the same experience.”

Interestingly, she says, although all of her doctors have been aware of her transgender status, as it affects some aspects of her medical care, no doctor has ever inquired about her sexuality or whether she is sexually active.

It may be useful to know that she is a registered clinical and forensic psychologist, a long-time member of the World Professional Association For Transgender Health, an affiliate member of the British Association of Gender Identity Specialists, and a member of the editorial board of the International Journal of Transgender Health. She has been a full-time faculty member at many universities and is, by all accounts, an expert in her field.

My hon. Friend the Member for Ochil and South Perthshire (John Nicolson) just passed me a note with some of the numbers. To go back to the point made by the hon. Member for Beckenham (Bob Stewart), there are up to half a million trans people in the UK, according to the Government Equalities Office. If we break that down in terms of the percentage of Scotland’s population, a significant number of people are being affected and are considering taking their own lives, so the seriousness of that is very important. I thank my hon. Friend for that wee bit of information.

The woman who got in touch with me advises that she was recently offered a position as a psychologist at a specialist clinic in the UK. That is good news, given her expertise, but there are a number of reasons why she declined the position. In her own words:

“The most important reason why I declined the position, however, was the horrendous amount of transphobia currently rampant in the UK, spurred on by what seems to be an ever-growing number of highly inaccurate, one-sided, or genuinely bigoted and hateful articles and columns in the press…I felt that to be a trans woman working within the GIDS would place me directly on the firing line for a barrage of hatred and abuse—something which, honestly, I was not willing to endure.”

Those are the words of someone who is highly professional with specialist training, who I imagine that the NHS would have been hugely fortunate to have. That is the lived experience of a trans woman in our society, and it should give us all pause for thought and reflection.

The reality of the services not being properly or fully funded was highlighted to me by another person who contacted me. They raised the issue of the very long waiting list to access the gender identity development service. They explained that there is a

“very long (2+ years) between referral and first appointment, leaving hundreds of children and adolescents in distress for extended periods. The UK government promised an inquiry into the massive increase of referrals, but it appears to have vanished. These”

young people

“are in desperate need of better care but are being ignored. GIDS say that they should be treated under Child and adolescent mental health services (knows as CAMHS) in the interim, but for the most part CAMHS won’t touch them once gender identity issues are mentioned.”

They advised me that they

“are lucky enough to be able to afford private therapy”

but that the

“the children’s GIDS service is failing and should form part of your debate.”

I hope that the Minister will consider those matters and perhaps update not only the Chamber but me in writing, so that I can share it with the person who got in touch with me.

On gender recognition legislation and why it is needed, I was struck by a contribution by Time for Inclusive Education, which created a podcast called TIE Talks, which is well worth a listen. Mridul Wadhwa, a trans woman of colour who lives and works in Scotland, recently spoke alongside Sharon Cowan, professor of feminist and queer legal studies from Edinburgh on the podcast. They spoke compellingly about the Gender Recognition Act 2004 and the impact of the current system on the mental and physical health of trans people. I urge people to listen to it because it is hugely informative. I pay tribute to Jordan Daly and Liam Stevenson, who founded TIE, and the chair, Rhiannon Spear; they do remarkable work in Scotland for young people around LGBT education.

Mridul spoke about the patriarchal nature of the gender recognition panel and how a group of anonymous people decide other people’s future and fate in a way that echoes and has parallels, in her view, with the immigration system, which she has direct experience of. I was interested in hearing more about that and had a discussion with her about the differences and parallels of coming out as trans versus coming out as lesbian, gay or bi. She came out and transitioned in a different country, but she was clear that there are inherent similarities. I certainly remember people saying to me when I came out, “You can look forward to coming out every day.” I have to say, that is still pretty true nearly five years on, but what she told me was that as a trans person, there are so many hurdles to overcome. At times, she feels:

“how many people do I need to convince that I’m a man or a woman?”

I cannot imagine what it is like for someone to have to justify their very existence repeatedly. It must be exhausting and take a huge toll—as we saw from the statistics—on their mental and physical health. Back in 2013, a study in the US said, unsurprisingly, that legalising gay marriage might improve health and reduce healthcare costs. Another similar study last year found that legalising equal marriage could improve the mental health of same-sex couples. Wow—what a revelation! You can marry the person you love and live the life you want as the person you are, and it might actually make you happy and reduce the burden on the healthcare system.

Wuhan Coronavirus

Bob Stewart Excerpts

Monday 3rd February 2020 Commons Chamber

[Matt Hancock]

Yes, absolutely. We are to hold a briefing with the lead Minister and the chief medical officer that is open to all MPs from across the House, so they can put questions directly to the chief medical officer and get the clinical evidence behind the decisions we are taking.

Specifically on the hon. Lady’s question, the Royal Liverpool is one of the best hospitals in the world for dealing with these sorts of disease. It is one of the hospitals that we identified in advance as a place where people with coronavirus would be taken. One of the advantages of using the facilities at Arrowe Park was its proximity. Transit from A to B will of course be in secure conditions, so that no one is affected on the way. People can rest assured that if a case emerges in the isolation area at Arrowe Park, we have plans in place to get those affected to Liverpool and into the hospital in a way that does not affect nearby residents. To be frank, local residents should be very proud of their hospital.

[Bob Stewart (Beckenham) (Con)]

Apparently, there have been 361 deaths from coronavirus in China, with many more infected. Can my right hon. Friend assure me that in the worst-case scenario—if it does get into this country—and people develop symptoms, their chances of dying are not that great?

[Matt Hancock]

One part of that is true and another is sadly not, in that it is no longer “if” it comes to this country—it is here. However, the thrust of what my hon. Friend says is absolutely right: the current rate of mortality—those who die having contracted the disease—is around 2%, which is significantly lower than other recent diseases of this type, such as SARS, and a lot lower than Ebola. However, as the shadow Secretary of State said, the rate of transmission appears to be higher, and the number of cases appears to be doubling around every five days. We have the challenge of a disease that is transmitting relatively quickly, but the vast majority of people who have it survive.

Genetic Haemochromatosis

Bob Stewart Excerpts

Wednesday 3rd July 2019 Westminster Hall

[Mark Pawsey (Rugby) (Con)]

It is a pleasure to serve under your chairmanship, Mr Sharma. It is a great privilege to secure this important debate on genetic haemochromatosis. I chair the all-party parliamentary group for genetic haemochromatosis (iron overload). I want to raise awareness of the condition, within Westminster and beyond. I will explain what genetic haemochromatosis is and its prevalence within the UK. I will also look at how the condition fits into the NHS priorities. I will conclude with three asks to the Minister on behalf of the charity Haemochromatosis UK, which is represented here, and the APPG.

Until recently I knew nothing about the condition. Two or three years ago I visited the charity Haemochromatosis UK, which was based in my constituency, and the condition was explained to me. The lack of awareness of the condition and the importance of early diagnosis were brought to my attention. As a consequence of those discussions with the charity and some other hon. Members, some of whom are here, we formed the APPG earlier this year.

The APPG was based on the report published by Haemochromatosis UK in October 2018, which highlighted the previously underestimated impact of the condition, in terms of the number of people affected and the chronic effect it has on people’s lives. The APPG first met in January and we met again in May to talk about the adoption of clinical guidelines, which I will refer to later.

What is genetic haemochromatosis? It is a genetic condition in which the body fails to control the absorption of iron. Some hon. Members may have heard it described as iron overload or iron overload disorder. Iron builds up within the body and reaches a highly toxic level. That can lead to a multitude of different health problems. Iron builds up particularly in the liver and the damage is progressive. At its worst, iron overload can kill through liver and heart failure.

[Bob Stewart (Beckenham) (Con)]

I stand as an ignoramus on this matter, but I want to support my hon. Friend who is leading the debate, and I want to know more about the matter. Is this something that is in a baby from birth, and if not, what is the normal age at which it develops?

[Mark Pawsey]

This is a genetic condition that becomes apparent in some people who possess the gene. People are affected to a variable degree. I will come on to some of the debilitating consequences of genetic haemochromatosis, which include arthritis, joint pain, diabetes, fatigue, psychological or cognitive difficulties, skin conditions, menstrual problems in women, impotence, breathing and heart problems, abdominal pain, liver problems and hair loss.

Just because the condition is not widely spoken about, in either medical or public life, that does not mean that it is not prevalent in the UK. The white UK population of north-European extraction, particularly people of Celtic extraction, gives the UK the highest prevalence anywhere in the world. The condition is found around the world wherever the Irish and Celtic population has migrated to, including Australia, the Americas and South Africa.

One in eight people in the UK carry a faulty copy of the GH gene. That faulty gene is known as HFE. One in 200 people carry two faulty copies of the HFE gene. Those are the people at risk of iron toxicity. In layman’s terms, people must have two copies of the gene in order to be affected by the condition. It is estimated that around 380,000 people worldwide have the genetic haemochromatosis mutation. Of those 380,000 people, 200,000 are under 40 years old, which is why early diagnosis is important. If we can diagnose the condition early, people will not be overlooked and can attend to their symptoms.

--- Later in debate ---

[Mark Pawsey]

The hon. Lady is exactly right. Very often, people suffer from the symptoms and persevere. They feel tired and just generally unwell, but they do not know why they are affected, so awareness of the condition among the medical profession when people present with those symptoms is vital in identifying those affected.

In terms of the additional demands placed on the NHS, we can estimate an extra 564 patients diagnosed with liver disease and 125 new liver cancer patients every year from among those with the condition. If we can diagnose it, enable patients to be aware of it and deal with it earlier, we can prevent it from making such a substantial demand on the NHS.

[Bob Stewart]

I congratulate my hon. Friend on securing this debate. As I am half-Scottish, have had my hip replaced and feel tired most of the time, I am worried, but not as worried as doctors must be, because it seems to me that if someone goes to a general practitioner with normal symptoms like that, it must be bloody difficult for them to diagnose the condition. Everyone here is nodding, so I presume that is right.

[Mark Pawsey]

My hon. Friend makes a valuable point. Next time he visits his GP, he can ask, armed with the knowledge that he has as a consequence of this debate, whether the condition might be something to consider.

Let me turn to the cost saving to the NHS. The basic test for iron levels in blood would cost only £1 per patient if routinely done at the same time as other blood tests. The test is not commonly done; perhaps it should be. Iron testing could be added to the NHS health check, which people receive at the age of 50. That might provide a pointer to some of the symptoms that my hon. Friend has referred to.

The UK Biobank study also indicates that the HFE gene is associated with significant morbidity, in particular associated arthritis and liver disease. Of course, because of the influence of the liver, there is a highly increased risk of liver cancer compared with the general population. There are approximately 6,000 cases of liver cancer per annum nationally, and the outlook for those with liver cancer is particularly poor. The survival rate for liver cancer is among the lowest of all cancers. Professor Ted Fitzsimmons of Glasgow University estimates the cost of a liver transplant at around £100,000. That is a broadbrush estimate, which excludes personal costs such as loss of employment and the need for family members to help with caring. Again, we know that early diagnosis could not only improve the lives of those affected but result in significant savings for the NHS.

Since my involvement with genetic haemochromatosis began, one thing that has had an impact on me is the stories of patients affected by it. I will read out a couple of patient testimonies. One comes from another trustee of Haemochromatosis UK, Michelle Weerasekera. This is her account:

“I was diagnosed with genetic haemochromatosis after suffering from chronic fatigue for some time. I had visited my GP and been told to take folic acid and wouldn’t have returned had I not had a routine blood test carried out for an insurance policy that I was taking out.”

She therefore became aware of her condition accidentally. She continues:

“I returned to my GP, who, thinking that I may be anaemic, ran a ferritin test. This showed that my results were elevated and I was referred to a Haematologist. I had a FerriScan carried out which showed some stored iron in my liver but luckily with regular venesections”—

the taking of blood—

“over the last eighteen months I have managed to reduce my ferritin levels and am now in what is called the ‘maintenance phase’. I hope to soon become a regular blood donor”—

an issue that I will raise with the Minister later on—

“so that my blood can be put to good use. I know how lucky I have been by being diagnosed when I was. Having talked to my GP since diagnosis, I know that Haemochromatosis was not on his radar and this is why raising awareness is so important. Had I not returned to the GP, my body would have carried on storing iron and the outcome and my future health may have not have looked so positive.”

The second piece of testimony comes from another patient with genetic haemochromatosis, a young woman. Katharine Hough is only 27 and has had to fight to be taken seriously by the medical profession, largely because genetic haemochromatosis generally affects older people. The key point about Katharine’s concerns is that she is relatively young. She says:

“Despite the advantage of being diagnosed young, I have often had to fight to be taken seriously by the medical profession. Doctors seem to think it will not affect me as I am young and they are accustomed to solving health issues rather than helping to maintain good health and prevent problems.

I have had many cases where specialists think that, as I am a young woman and my symptoms are not as severe as those suffered by older people, I am healthy and have nothing to worry about. But I am only 27...If they stop and think for a moment to consider it, I should not have joint pains, and my knees should not hurt when I walk. I want to prevent further damage and not wait until my symptoms are very bad…It is my health and only I can fight for it.”

Both these stories highlight the importance of early diagnosis and increased awareness of the condition among GPs and other medical professionals.

The frustrating thing is that in a large number of cases treatment will alleviate many of the symptoms. The earliest intervention prevents many of the problems that I have described, including the build-up of iron in the liver and heart. In the vast majority of cases, treatment is venesection, which is essentially giving blood. Done intensively, this removes excess iron from the body effectively. Done regularly, it will maintain iron levels. In simple terms, the body uses some of the stored excess iron to make red blood cells to replace those that have been removed.

Venesection is a safe and proven procedure. It is similar to donating blood, as those of us who donate blood will realise. The blood taken from a haemochromatosis patient is perfectly useable and would go some way to addressing NHS blood demand. However, blood taken in a venesection clinic is discarded, which does not seem to make sense. I will come back to that in my final remarks and asks of the Minister.

Why is this condition not higher on the UK health agenda? There are many and varied reasons, but one key reason is the lack of consistent clinical guidelines. What protocols exist are often non-mandatory, related to an individual trust, inconsistent and poorly adopted. The University of Exeter has conducted some research into the impact of iron overload, which shows wide inconsistencies in the experience of patients, and the prevalence of chronic symptoms arising from non-diagnosis is much higher in the UK than was previously thought. I am looking for the Minister to respond to the point about introducing guidelines. If there were guidelines, that could increase diagnosis perhaps as much as tenfold. That would prevent many people from developing the follow-on conditions, such as cancer, heart failure and diabetes, that I have referred to.

A consultant rheumatologist at St George’s Hospital in London, Dr Kiely, says that the cost of a typically large joint replacement is in the order of £10,000—which may be of interest to my hon. Friend the Member for Beckenham (Bob Stewart). Dr Kiely has also said that the big impact on healthcare costs would be in primary care, from delays in diagnosis. Those who suffer from genetic haemochromatosis suffer from less productivity when they are at work. They often have to take time off work, but also often want to continue at work. That leads to presenteeism, where people turn up for work but are ineffective because of the debilitating conditions that they suffer from. All those are costs to society, and are burdens that patients have to deal with.

A January 2019 editorial in The Lancet on gastroenterology and hepatology said:

“We wholeheartedly support the need to increase education and awareness of genetic haemochromatosis among clinicians to improve early diagnosis. The necessary tools are in hand, the guidelines are clear, and”—

very significantly—

“their implementation would be…cost-free. It is difficult to imagine a clinical problem that represents lower-hanging fruit for the…NHS. As such, there is no time like the present to elevate the priority of genetic haemochromatosis on the UK healthcare agenda.”

Professor Ted Fitzsimmons of the University of Glasgow, who attended the most recent meeting of the all-party parliamentary group for genetic haemochromatosis, has produced a set of guidelines for this condition. Those guidelines have been endorsed by a number of professional medical bodies, and the APPG would like them to be adopted and expanded on by the National Institute for Health and Care Excellence in order to improve and increase diagnosis, and to improve and, importantly, standardise care after diagnosis. We believe that doing so would put genetic haemochromatosis higher on the NHS agenda.

This condition fits into two of the priorities of the NHS long-term plan. First, the plan talks about prevention. Prevention of genetic haemochromatosis affecting patients means effective diagnosis before the damage is done. If we can identify it, we can save the NHS money and ensure that patients’ health is protected early. The Secretary of State for Health and Social Care drew attention to that in November last year, when he said that

“if we get prevention right, it holds the key to longer, healthier, happier lives and a sustainable, high quality health and care system… It’s why…I made it one of my big three priorities”.

There is no easier win than adopting prevention for this condition.

Another NHS priority is supporting people to age well. The University of Exeter report highlighted the impact of genetic haemochromatosis on our ageing population, and we know that the condition affects arthritis and frailty in older age groups and increases the risks of diabetes and chronic pain. It is an issue that we need to address.

My three asks of the Minister, which I hope she will respond to in her remarks, are as follows. First, what steps can she take to ensure that those who are affected are promptly and correctly identified, regardless of where they live? We have already heard that early diagnosis saves lives, yet so frequently people with genetic haemochromatosis suffer needlessly as a consequence of late diagnosis. Secondly, what steps can she take to encourage the NHS to adopt, share and embed the best practice we have referred to, both through screening and associated therapies, to ensure that venesection is available? We know from Haemochromatosis UK’s 1,800 members that NHS standards vary widely across the country. With a single system, we could offer a consistent, world-class approach.

That brings me on my third point. How can the Minister encourage different areas of the NHS system to collaborate more effectively to realise the economic benefits of joined-up care, and also the benefits to the patient? One example would be making use of the blood taken during venesection, incentivising NHS Blood and Transplant to make greater use of genetic haemochromatosis patient blood to meet ongoing needs. It is astounding that the blood collected is wasted. That distresses many of the people affected by genetic haemochromatosis, who take the view that if they are going to have their blood taken, they would love for it to be used productively to support other patients.

Mr Sharma, I know that other Members wish to contribute. I look forward to the Minister’s response to our asks at the conclusion of the debate.

[Liz McInnes (Heywood and Middleton) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Sharma. I am grateful to the hon. Member for Rugby (Mark Pawsey), the chair of the all-party parliamentary group for genetic haemochromatosis, for having brought this debate before the House. It is an important subject; I asked for a debate on it earlier this year following the release of the University of Exeter’s research, which showed that this condition was 20 times more common than was previously thought, so I am pleased that the hon. Gentleman has secured this debate. I am also grateful to the charity Haemochromatosis UK, which is based in his constituency and whose website contains a wealth of useful information.

The hon. Gentleman has given a comprehensive opening speech, showing his understanding and knowledge of this condition, so I do not need to repeat it. Instead, I will talk about the research that was published this year and its implications. As we have heard, haemochromatosis is thought to be the UK’s most common genetic disorder and is inherited in a recessive manner, linked to a faulty gene passed from both parents to their child. It was previously believed to seriously affect about one in 100 carriers, but the new research has suggested that the true level could be closer to one in 10 among women, and one in five for men.

Researchers at the University of Exeter analysed data from 2,890 people from the UK Biobank who had the specific mutation to which the hon. Gentleman referred. The research was conducted on subjects aged between 40 and 70, so the point he made about that research being limited in its age range was a good one. In the light of those findings, the UK National Screening Committee has said that it will look at the evidence on screening for haemochromatosis in 2019-20, as part of its routine three-yearly review. I would be interested to hear the Minister’s comments about that.

The lead researcher, Professor David Melzer of the University of Exeter, has said that haemochromatosis is easy to treat if diagnosed early enough, which I think is the key point of this debate. However, the hon. Member for Rugby has observed that haemochromatosis can be difficult to spot, which is also a pertinent point. A lot of the symptoms can be very non-specific, and it is not a condition that is uppermost in the minds of general practitioners, which is why we are now considering routine screening. As we have heard, the treatment is relatively simple and involves regular venesection, or bloodletting. As the body makes more blood to replace that which is taken, it uses up the excess stored iron. That treatment, if started early enough, can avoid the complications of haemochromatosis that we have already referred to—liver failure, diabetes, chronic pain and severe arthritis—developing later in life.

I will illustrate the effect of having a diagnosis of haemochromatosis later in life by telling the story of my constituent, Paul Dicken. Paul has given me permission to use him as a case history, and I think his story will strike a chord with many haemochromatosis sufferers. He was diagnosed only this year after years of suffering from symptoms including liver, joint and stomach problems, for which he has been taking multiple painkillers over the years. Since his diagnosis, he has been having venesection, but he tells me that he now suffers from lethargy due to the frequency of venesection, no energy, muscle loss and joint pain. He has said that his depression is hitting a new low and, regarding his eventual diagnosis, has said that

“I was being asked for a long time if I had a drink problem because of my liver problems…but I don’t drink and the haemochromatosis was only discovered because the doctor was worried about my white blood cells being high.”

Paul’s case is a clear example of how raising awareness of the disease among GPs and medical professionals might have helped him get an earlier diagnosis and spared him some of the painful symptoms and possibly inappropriate treatment he had. I am grateful to him for allowing me to tell his story. Testing for iron overload is simple and GPs should be aware of the transferrin saturation test, where a result of greater than 50% indicates a risk of iron accumulation. If such a result is found, the patient should be referred to secondary care for further tests.

[Bob Stewart]

From what I have heard today, which is the entire encyclopaedia of my knowledge, it seems to me that we could cover the issue pretty well if every blood test included a check, because most people have blood tests at some stage—that happens fairly often these days.

[Liz McInnes]

I thank the hon. Gentleman for making that point, but I issue a caveat about blanket screening: it has to be proven to be clinically effective and it must not throw up false positives and false negatives. The tests are fairly specific for haemochromatosis, but they will have to go through an evaluation process, as I am sure the Minister will inform us when she makes her closing remarks.

At this stage, I want to mention the biomedical scientists and clinical scientists working in our NHS pathology labs. Those often unsung heroes of the NHS are the people who will be performing the tests. Indeed, that was my profession before I was elected as the MP for Heywood and Middleton.

In closing, I want to say that it is important to discuss with any patient diagnosed with genetic haemochromatosis the desirability of genetic testing for other members of the family, as there is at least a one in four chance that a sibling will also have haemochromatosis. Family checks frequently lead to the detection of haemochromatosis before organ damage has occurred. That is important.

It is important we are having this debate. Early diagnosis will help save lives, help cut costs for the NHS and reduce unnecessary suffering for so many individuals, such as my constituent Paul, and families around the UK.

Mental Capacity (Amendment) Bill [Lords]

Bob Stewart Excerpts

2nd reading: House of Commons & Money resolution: House of Commons & Programme motion: House of Commons & Ways and Means resolution: House of Commons
Tuesday 18th December 2018 Commons Chamber

[Matt Hancock]

The hon. Gentleman is absolutely right about the importance of getting highly trained social workers to make these judgments and about the importance of making sure such training is provided for and embedded in the Bill. He speaks powerfully, and I agree with how he puts it.

The Bill introduces a new liberty protection safeguards system, and it makes the authorisation simpler and more straightforward. It removes some bureaucracy and duplication, and it makes the system easier to navigate for individuals and their family. People will get their rights protections sooner, there will be greater independence when decisions are taken to restrict liberty, and the NHS and social care providers will be given a bigger role in the decision-making process so that people under their care receive the right care and their rights will be protected. It will introduce an explicit duty to consult the person being cared for and to consider their wishes and feelings.

[Bob Stewart (Beckenham) (Con)]

An appropriate person will be appointed when dealing with vulnerable people. Who are these appropriate people, and what will be their role?

[Matt Hancock]

An appropriate person will have greater involvement in any decision to restrict liberty, so their role is essentially to speak for those whose liberty is potentially being restricted. We have framed this in terms of an “appropriate person” because in large part this will be a family member or a carer, but that cannot always be the case.

[Bob Stewart]

It could be a nurse.

[Matt Hancock]

It could easily be a carer, yes. Some people have no family and in others cases the family are not the appropriate people to be the spokesperson for those who are mentally incapacitated. The appropriate person—the families and carers—will have greater powers to intervene or to object. Crucially, where there is no family or an appropriate person to advocate for the individual, the person has the right to an independent mental capacity advocate. So in all cases there should be a person whose role in the system is to advocate on behalf of the person whose liberty is being restricted.