Holocaust Memorial Day

Debate between Baroness Hodge of Barking and Jim Shannon

Thursday 25th January 2024 Commons Chamber

[Dame Margaret Hodge (Barking) (Lab)]

I beg to move,

That this House has considered Holocaust Memorial Day.

I thank the right hon. Member for Stratford-on-Avon (Nadhim Zahawi)—who is not in the Chamber—the hon. Member for East Renfrewshire (Kirsten Oswald) and the right hon. Member for Orkney and Shetland (Mr Carmichael) for co-sponsoring the debate. Let me also pay tribute to two organisations, the Holocaust Memorial Day Trust and the Holocaust Educational Trust, both of which devote much energy and time to organising the events that help us to commemorate the holocaust. Without their excellent work, we would not keep alive the memory of those who lost their lives in the Nazi death camps, or indeed those who were killed in other genocides from Rwanda to Cambodia and from Bosnia to Darfur. Without them, our efforts to learn the lessons of history would weaken and fade away.

This is the last time I shall have the privilege of participating in this important debate, but it could not be a more difficult and depressing time to do so. I have just returned from a short visit to Israel. We went to support the people who lived on Kfar Azar, a kibbutz that we had visited in February last year. Many of those living on the kibbutz were people committed to peaceful co-existence with their neighbours in Gaza, but tragically many were killed on 7 October, many who survived are distraught because their loved ones were captured as hostages, and many, especially the women, were treated with the utmost abominable, sadistic cruelty, sexually assaulted in utterly inhumane ways, and then murdered. Israel and its people are experiencing a national trauma and a real, existential fear for their survival, with memories of the holocaust at the heart of their minds; and the same is true in Gaza, with innocent civilians experiencing a similar national trauma, an identical existential fear and a comparable terror of genocide as they live with bombardment, death, injury, displacement, and a lack of humanitarian aid.

So we meet at a deeply depressing time to reflect on the holocaust, with many asking themselves, “When will the world ever, ever, really learn from our past?” But the truth is that we must keep trying. This year’s focus for Holocaust Memorial Day is the fragility of freedom. That theme allows us to reflect on how, by better understanding the past and better understanding how easily freedom can be eroded, we can act today to make the world a better place for those fleeing persecution today.

I want to raise these matters in the context of my own family’s experience. Like others, I lost close relatives in the holocaust: my grandmother, whose last written words to her son, my uncle, were “Don’t forget me completely”, and my uncle, whose wife wrote in a letter pleading for his release, “He’s only a number to you. He’s everything to me.” But I had other relatives who escaped days before the start of the war, and were dispersed across the diaspora as they sought safety. They too were victims of the assault on Jews, they too suffered hugely, and they too should be the focus of our concerns as we commit ourselves to its never happening again.

My grandfather came to England on 29 March 1939. He was 66 and had just recovered from a prostate operation and an embolism in his leg. We have a powerful account of his experiences and emotions in the diary that he kept. He described his last visit to his parents’ graves in Vienna, in tears because he would never visit those graves again. He recalled how his parents, my great-grandparents, visited the graves of their own parents, my great-great-grandparents, in Poland, in tears because they were driven out of their homes by pogroms—a never-ending cycle of violence.

My grandfather described his feelings a few days after arriving in England:

“Because of the lack of language skills very lonely, depressed, cannot memorise, miserable pronunciation. Living like a recluse.”

Even six months later, he said that those who stayed in Vienna

“may have saved themselves from all the horrors and all the difficulties of emigrating.”

He talked about antisemitism in Britain and how it reached up into the Government, when the only Jew in the Cabinet was sacked by Neville Chamberlain. On his arrival in Britain, my Jewish refugee grandfather was classified as an “enemy alien.” That was later changed to “friendly,” but he was still an alien.

At 8.30 am on 27 June 1940, in the middle of a war that led to the death of 6 million Jews, my grandfather was in his bath and there was a knock on the door. He was arrested, removed from his home and interned. He tried to ring his doctor to certify his illnesses but then, as today, no doctor picked up the phone. He was taken to Huyton, in Liverpool, and given a number: “Group number 28/2, number 1428.” He was housed in overcrowded conditions with a rubber sheet, straw and blankets. In the early days, he was not allowed to write or receive letters. The sanitary conditions were dreadful, and the German Jews found themselves housed with German Nazis. His freedom was indeed fragile. Our treatment of Jewish refugees was unconscionable.

Fast forward to my own experience. I came to the UK from Egypt, stateless, in 1949. After the creation of Israel, Egypt became an increasingly hostile environment for Jews. My father had a stone thrown through the window of his office and, with the memory of the holocaust still raw in his mind, he decided to get the family out of Egypt. We were rejected by three English-speaking countries, and the UK finally, to my father’s eternal gratitude, gave our family of six entry visas to this country. My father’s freedom was indeed fragile.

Five years later, we were still stateless and my father applied for British nationality. At that time, my mother was dying in hospital and my older sister and brother were away at school and university, so I was at home with my younger sister. She was six and I was nine. A Home Office inspector came to tea. I remember that occasion vividly as, instead of our usual boiled eggs and toast, we had to eat cucumber sandwiches and fruit cake, which I absolutely hated, having grown up on succulent fresh fruit in the middle east. Worst of all, we were interrogated —two young girls on their own—for a full hour on who our friends were, what books we read and what games we played. My freedom was indeed fragile, dealing with a hostile, not friendly, environment that remains forever locked in my memory.

What do all these stories tell us? My family know, and indeed the families of millions of refugees know, that freedom is never guaranteed. We should understand that how we treat those who escape persecution and genocide is central to our reputation as a country that boasts a humanitarian approach to genocide and the holocaust.

[Jim Shannon (Strangford) (DUP)]

I commend the right hon. Lady for securing this debate and for the tone of her speech. Most of us are proud friends of Israel. I think of what the nation of Israel was put through because so many people would not speak out, and we saw the result in the horrific atrocity that is remembered today. Does she agree that we remember not out of a sense of morbidity, but out of the absolute necessity to ensure that the lessons taught by the slaughter of the Jewish people are learned by people of all faiths, so that it is never permitted to happen again?

[Dame Margaret Hodge]

I completely share that sentiment expressed by the hon. Gentleman.

As I was saying, we are not as good as we proclaim to be. My grandfather did not feel welcome and I did not feel wanted as a nine-year-old girl. The asylum seekers who try to come here today face a similar hostile environment. They are told by leading Government politicians that they pose an “existential threat” to the west’s way of life, that they are part of a “hurricane” of mass migration, that MPs feel “besieged by asylum seekers” and that asylum seekers are “invading” Britain. We should reflect on what we say and what we do today before we exercise any moral entitlement to condemn the atrocities of the past.

The language we use today matters; the laws and practices of today designed to exclude many of those seeking freedom from persecution, which make a mockery of our commitment to the victims of genocide, matter; the fees we charge for visas today matter; and our refusal today to allow those seeking asylum to work matters. The hostility my grandfather faced in 1938 and the trepidation I felt when subjected to questioning in 1954 echo through the generations. All of this contributes to our credibility in the debate on the holocaust and subsequent genocides.

So before we applaud ourselves for keeping alive the memory of the holocaust, we should think about how fragile freedom was then for those who sought to escape death and how fragile it remains today. We must take responsibility and stand up to genocide wherever it rears its ugly head, and we must protect those who seek refuge in Britain. If we stand by while genocides unfold, or fail to protect those who need it the most, the horrors the likes of which my grandfather, father and even myself experienced will have all been for nothing. Freedom is one of our basic values, so surely we owe it to our children and our children’s children to be able to stand up and really mean it when we say, “Never again.”.

Autumn Statement Resolutions

Debate between Baroness Hodge of Barking and Jim Shannon

Monday 27th November 2023 Commons Chamber

[Dame Margaret Hodge (Barking) (Lab)]

I congratulate my new hon. Friend the Member for Tamworth (Sarah Edwards) and I wish her well, but she arrives in difficult times, because in 30 years as an MP, I have never seen the country’s finances in such a mess. We have the highest taxes since records began, the highest public sector debt since the 1960s and inflation at a 41-year high, and average households will be £1,900 worse off by the end of this Government.

At the same time, public services are on their knees and the OBR predicts a miserable 0.1% growth rate for the fourth quarter. The Government try to pile the blame on others—covid, Ukraine, the middle east and even their own past leaders—but the whole Conservative Government have done this, having voted through 13 years of flawed measures and disastrous policies that have not helped growth and jobs, but have intensified inequality and increased child poverty. We have had enough, the country has had enough and Britain deserves better.

I will focus on three areas that could make a real difference if the Government made different choices. In 2012, the tax gap—the gap between what HMRC receives and what taxpayers pay—was £34 billion. This year, it is up by nearly £2 billion, and if tax campaigners calculated it, they would probably triple or quadruple that figure. Failing to collect £36 billion is massive—that is £3 billion more than we spend on the whole of primary education across the UK.

Those who benefit most from HMRC’s failure to pursue them are the rich. Last year, only 11 wealthy individuals were prosecuted for tax cheating and only eight were pursued for evasion over two years. However, 420,000 people on low incomes, many not earning enough to pay a penny in tax, were taken to court for filing their tax returns too late.

What about the big multinationals who still aggressively avoid tax? TaxWatch’s analysis of just eight tech companies, including Google, Facebook and Apple, shows UK profits of £9.6 billion, but the tax paid amounted to a miserly £297 million. They avoided £1.5 billion in UK tax. Add the estimated £350 billion annual loss through fraud and money laundering, and we are talking about eye-watering sums, yet prosecutions and convictions by HMRC have both fallen by 75% in the last five years. This wretched failure to pursue tax avoiders, evaders, fraudsters, money launderers and multinationals is a scandalous stain on this Government and destroys faith in our system.

Equally awful is the fact that the Government cannot be trusted to spend our money wisely. Government waste is yet another scandalous stain on the Conservative Government’s record: £15 billion lost to fraud and error across all covid schemes, £1 billion overspent on a contract for a new warhead facility, another billion pounds lost on the Astute nuclear-powered submarines and £2.2 billion wasted on the now abandoned HS2 phase 2 project. The bill for the failed asylum support system has gone up fivefold in four years and cost us a shocking £3.6 billion. The staggering costs of meeting the needs of nearly 300,000 homeless families are at least £18 billion a year. With services so stretched, the waste of taxpayers’ money because of sheer incompetence is unforgivable. People are struggling while the Government squander.

I want to turn to the unfairness in the tax system that the Government deliberately promote. Our system is ridiculously complex, opening opportunities for aggressive tax avoidance. Take the 1,180 tax reliefs, of which 339 are non-structural reliefs, supposedly introduced to help a particular group achieve a particular policy outcome. We have no idea how much those tax reliefs cost or whether they are effective, and there is no accountability for the expenditure, because it is all below the line. One hundred reliefs have been costed, at an estimated £195 billion, which is almost double what we spend on local government and double the £46 billion spent on defence. That sum accounts for only a third of the 339 non-structural reliefs. With little data, and scant scrutiny and evaluation, we are sitting on a time bomb.

Take, for example, the cost of the research and development tax credit—up from £2.3 billion to £5.2 billion in five years, yet without an equivalent increase in R&D investment by companies. The patent box relief was introduced to encourage companies to commercialise their inventions, but has now been exploited as a tax loophole. The moment the KPMG partner seconded to the Treasury to write the technical rules for the relief left the Treasury, he produced a brochure entitled “Patent Box: what’s in it for you”. That relief is costing us £1 billion a year. Entrepreneurs’ relief cost £427 million in 2008-09, but that had ballooned to £2.2 billion by 2018-19, the last year for which I could find proper figures. The relief is supposed to encourage investment, but a survey of those who claimed it found that only 8% said the relief had influenced their decision at the point of investment.

Finally, we talk about making work pay, but we have a system in this country whereby the income that people gain from work is taxed at a higher rate than the income they gain from wealth. No such system can ever justify that we are a country that enables work to pay.

[Jim Shannon]

The rise in taxation for working-class people has implications for their childcare costs. Does the right hon. Lady agree that when it comes to childcare costs, it is impossible to make ends meet, and that working-class people and those on the poverty line need more help? Unfortunately, I do not see that help.

[Dame Margaret Hodge]

I agree entirely with what the hon. Member says. I simply point out that if we got the money in that was owed to us, spent it wisely and taxed fairly, we would be able not only to pay for childcare costs but to have the high-quality childcare that is essential to ensure that we equalise life chances.

This Government have failed. They have failed to get the money in, they have wasted billions and they have failed to tax and spend in a fair way. Trust and confidence have been squandered. It is time for them to go.

Budget Resolutions and Economic Situation

Debate between Baroness Hodge of Barking and Jim Shannon

Wednesday 15th March 2023 Commons Chamber

[Dame Margaret Hodge (Barking) (Lab)]

It is pleasure to follow the hon. Member for Cheadle (Mary Robinson), although I have to say that I disagree with her, in that I do not think the Budget of 2023 will go down in history as the moment when the UK Government finally got to grips with 13 years of pitiful growth rates. I do not think this will go down as the year when the Government honestly confronted the dire state of our public services, which are much valued by my constituents but much neglected by this Government. And I do not think this will be the moment when the Government admitted that child poverty has reached the highest levels for a generation and recognised that we need urgent action to tackle the inequality that brings.

For me, this Budget is a tragically missed opportunity. It represents a failure of political leadership and a woeful lack of responsible stewardship over the nation’s finances and taxpayers’ money. During a cost of living crisis, we heard that the people who are probably going to benefit the most from its proposals are those who will benefit from the lifting of the lifetime allowance. I wonder whether Ministers at the end will tell us: who is going to benefit from that? It will be not only the doctors, but the bankers and the millionaires. Is it really right to prioritise them in the middle of the cost of living crisis?

My constituents are desperate to feel real hope for their future and that of their families, but what are the realities facing families in Barking and in Britain? Public sector pay has been cut by 4.3% since the financial crash, with police officers taking home 13% less in real terms than they were in 2009. The OBR says that living standards are expected to go down by 6%, and not just this year but next year.

[Jim Shannon (Strangford) (DUP)]

I call what the right hon. Lady is referring to a “squeezed middle class.” Does she agree that the unfairness of the Government’s refusal to uplift the child benefit cap over the past 10 years, especially given the price increases of the past year, greatly impacts on working families, those people in the middle classes to whom she refers?

[Dame Margaret Hodge]

The hon. Gentleman talks about the squeezed middle, and I agree that they will not benefit from the Budget either.

There are 800,000 fewer owner-occupiers today than there were in 2010, while the number of rough sleepers has grown by a staggering 169%. We heard no mention of health in the Budget speech, but hospital waiting lists are growing, access to GPs is often impossible and we are now facing the most appalling record of having the highest waiting times in accident and emergency for nearly 20 years. We have all of that and the tax burden is at its highest since world war two. I say to Ministers that that cannot offer hope to the people of Barking. One cannot offer hope by proclaiming a slogan, and I fear that much of the Budget is full of slogans.

On childcare, everybody can agree that we must support women back to the workplace, but ensuring that our children get high-quality education and care in their early years is just as important, because that is how we give our children the very best chance in life and how we tackle inequality at its roots. I am always reluctant to harp back to the past but there are lessons to be learned from what the Labour Government achieved in this area, and I was privileged to play a key role in delivering our early years services. Children were at the heart of our concerns. We knew that if we gave them the best start in life, parents would feel confident that their little ones were in good hands and that would help to develop the next generation of educated, skilled and productive workers. To see that, we need just ask Labour’s deputy leader, my right hon. Friend the Member for Ashton-under-Lyne (Angela Rayner), as her life was transformed by her experience of a Sure Start children’s centre.

Good-quality childcare costs money, and it is a scandal that we are still paying childcare workers the minimum wage, while those who teach in universities are probably in the top 10% of earners. The Government have agreed today to change the ratio of adults to children, in order to cut costs. If the early years matter the most, the state should invest properly to make sure that we get well-trained and skilled people working with little ones and that each child has the level of attention they need to develop and grow properly. I wonder how many times either the Prime Minister or the Chancellor has looked after five toddlers and babies under two for 12 hours, seven days a week.

Let us look at the funding. Generously, I assume that the £4 billion would all go to one and two-year-olds. That will allow £2,670 to be spent on each child. Labour, with our Sure Start, childcare and early years investment spent, in today’s prices, £4,100 on each and every child—one third or £1,430 more on each little one. Cheap, underfunded childcare delivered by low-paid, under-trained workers will fail the next generation of children, and it will not help mothers to feel confident about going back to work. It is a political and electoral con, not a serious policy to support children and tackle inequality, and it will be largely ineffective in encouraging women back to work.

I will now quickly focus on three other areas that received scant attention in the statement, the first of which is getting the revenue in. It is a scandal that the gap between what we collect and what we should collect is still £32 billion—getting on for half the total amount we spend on defence. It is a scandal that His Majesty’s Revenue and Customs has only prosecuted eight cases where there is evidence of enabling tax evasion by a string of professionals such as accountants, lawyers and bankers. At the same time, it has pursued almost 400,000 people earning less than £13,000 each for not filling in a tax return on time—remember that the personal allowance is almost £13,000. It is a scandal that HMRC investigated 30% fewer compliance cases last year, and that prosecutions fell from 700 to a mere 163. That failure cost us an estimated £9 billion, the equivalent of the total budget for the Foreign Office. We know that every £1 spent on compliance activity yields £18 in additional revenue.

It is a scandal that we spend hundreds of billions of pounds on a vast array of tax reliefs that are not viewed in the public accounts as expenditure, so we have no idea how much they cost, whether they fulfil the purpose for which they were intended and whether they provide value for money. I have seen estimates that suggest that the total cost of non-structural reliefs can come to 8% of GDP. The Chancellor’s only response to this particular scandal is to abolish the Office of Tax Simplification, which examined tax reliefs, including R&D tax reliefs. Agricultural property reliefs and business property reliefs are both used to avoid inheritance tax.

Finally, let me talk about Government waste. Some £15 billion was lost to fraud and error on covid schemes. Eight sites for nuclear power stations were approved in 2010; not one has been built, and the costs for Hinkley Point have so far increased from £18 billion to nearly £30 billion. That is not to mention the white elephant that is HS2.

Why can the Government not act to make our tax system fairer? Why can they not adopt the principle, established in the 1980s by Nigel Lawson, that income secured from wealth should be taxed at the same rate as income secured from work? Taxing capital gains at the same rate would raise £16 billion. Ensuring that landlords paid national insurance would gain another £8 billion. Insisting that pensioners, like me, who are still in full-time employment paid the full national insurance on our wages would bring in another £3.6 billion. Abolishing the out-of-date £50,000 upper earnings limit on national insurance could raise another £21 billion.

I have spoken for too long, but this is a missed opportunity. It is an ill thought through gimmick on childcare. It is more for the better-off in their pensions and nothing for ordinary families struggling to make ends meet. That is how history will judge this Budget.

Economic Crime

Debate between Baroness Hodge of Barking and Jim Shannon

Thursday 2nd December 2021 Commons Chamber

[Dame Margaret Hodge]

One of my growing concerns is that economic crime and the laundering of money into the country—particularly, one suspects, of a lot of Russian money that has probably been stolen from the Russian people—is having an influence right through society, and I will reflect on that later in my contribution.

[Jim Shannon (Strangford) (DUP)]

First, I congratulate the right hon. Lady. I just want to say that this money is not all from Russia; it is closer to home. I make this point because it is important to do so. I am sure that the right hon. Lady is aware that Northern Ireland has paramilitary groups that have become experts in money laundering. Does she not agree that information sharing UK-wide—it is no different here or in Scotland, Northern Ireland and Wales—is imperative if we are to stop those terrorist, criminal, evil thugs living the high life, which they do while the communities that they live in live in fear?

[Dame Margaret Hodge]

I completely concur with the sentiments expressed so powerfully by the hon. Member.

We are now, sadly, one of the jurisdictions of choice for money launderers, criminals and kleptocrats. We do not just tolerate, but—unwittingly, perhaps—facilitate economic crime. Our Moody’s credit rating has fallen a notch, specifically because of the

“weakening in the UK’s institutions and governance”.

Fraud, an important element in economic crime, now affects one in 15 adults, and it too often destroys the lives of innocent victims who are just normal, trusting citizens.

Netflix: Tax Affairs

Debate between Baroness Hodge of Barking and Jim Shannon

Monday 3rd February 2020 Commons Chamber

[Dame Margaret Hodge (Barking) (Lab)]

Thank you for selecting the debate, Mr Speaker, and I give my heartfelt thanks to George Turner and the investigative think-tank, Tax Watch, for providing me with so much information.

For many years, global digital companies have been avoiding tax. I have spent the last decade campaigning for more corporate transparency and arguing for stronger action at both the national and international level to stamp out this abuse. Indeed, the Minister, when he was a member of the Treasury Committee, was extremely helpful in exposing some of the unacceptable tax behaviour in one of our major banks—HSBC—and he effectively held the bank’s chief executive to account. In the light of his previous interest and commitment to ensuring that everybody acts responsibly and pays their fair share of tax, I hope that he will respond positively to the suggestions I am making tonight. These suggestions will go some way to tackling the shocking example of corporate tax avoidance that we have uncovered.

I have secured this Adjournment debate because until now one major tax avoider has remained under the radar: Netflix. Netflix demands our attention for a number of reasons. Not only does it deliberately dodge its corporation tax bills, but it, in fact, receives moneys from the public coffers through the high-end television tax relief.

[Jim Shannon (Strangford) (DUP)]

This is a very important issue and I thank the right hon. Lady for securing the Adjournment debate. Bearing in mind that last year Netflix UK subscribers paid some £700 million, does she not agree that the fact that it uses loopholes to avoid tax is simply disgraceful? Government really must close these loopholes and ensure that big business has to pay a reasonable rate of tax.

[Dame Margaret Hodge]

I entirely support the hon. Member on that.

Netflix takes out of the public purse more than it contributes in corporation tax. While Her Majesty’s Revenue and Customs fails to collect money from it in corporation tax, the US Government is extracting tax from the same profits that it earns here and then hides in unknown tax havens.

Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis

Debate between Baroness Hodge of Barking and Jim Shannon

Wednesday 13th July 2016 Westminster Hall

[Dame Margaret Hodge (Barking) (Lab)]

I beg to move,

That this House has considered awareness and funding for treatment of Stevens-Johnson syndrome and toxic epidermal necrolysis.

It is a delight to move a motion under your chairmanship for the first time, Mrs Gillan, and I am grateful to the Speaker for selecting this issue for debate. I am also grateful to the Minister and look forward to having a positive exchange with him.

I had never heard of Stevens-Johnson syndrome or toxic epidermal necrolysis—my pronunciation of some of these medical terms may leave a little to be desired—until my constituent Nadier Lawson, who had suffered from the condition, contacted me. She has set up an awareness group, SJS Awareness UK, which is based in my constituency. It was because of her and that group that I asked for the debate.

SJS—and its much more severe form, TEN—is a severe reaction that affects the skin. It is caused by a whole range of standard medicines that we all use regularly. The reaction is most commonly caused by drugs used to treat epilepsy; some antibiotics, such as penicillin and sulphonamides; over-the-counter drugs such as ibuprofen; and medications that are commonly used to treat HIV and gout. The adverse reaction triggered by those drugs is devastating. I have seen pictures of children and adults who have had such a reaction, and they are truly shocking. People start with a skin rash, which rapidly develops into excruciating blistering across their skin, which starts to peel off. The condition particularly attacks the mucus membranes in the body—in the mouth, eyes, nasal passages and guts—and is similar to having third-degree burns on the skin. The condition is classified according to how much of the body surface is blistered: if it is less than 10%, the condition is called Stevens-Johnson syndrome; if it is 11% to 30%, it is called overlap syndrome; and if it is over 30%, it is called toxic epidermal necrolysis.

The initial symptoms that people experience are non-specific. Someone can take a pill one day and feel nothing for up to a week or two but then start to feel unwell and develop a rash, which is often assumed to be chicken pox, and may experience flu-like symptoms. A key problem associated with the condition is that all too often, it takes far too long to identify. Obviously, the first thing to do is to stop taking the medication that is causing the condition. Failure to identify the condition early enough can lead to terrible lasting effects, including permanent damage to the eyes—resulting at its most extreme in blindness—and lungs, loss of nail beds, arthritis and chronic fatigue syndrome. At the very worst, people die. Around one in 10 people with SJS, the mildest form of the condition, and up to a quarter of those with TEN, the most severe form of the condition, die.

I have a whole lot of case studies, but I thought it worth reading out just one, which was given by a young man who came to an event that I held in the House to bring together people who had experienced the condition. He is called Stuart Doyle, and he wrote and said this:

“Nine years ago I had a TENS reaction. I burned from the inside out and lost around 95% of my skin, all through second and third degree burns with permanent scarring. My finger and toenails burned off and have never grown back. The enamel on my teeth burned away. Mouth, throat, lungs and stomach all burned. My eyes burned and ulcerated, then fused to my upper and lower eyelids. My tear film was destroyed, as was my tear production and I lost all saliva production too. I also had inner ear burning and am now partially deaf in one ear. My genitals burned.”

I will skip a bit and give just a summary of what he said and wrote. He continued:

“I spent six weeks in a ketamine-induced coma, which I was placed in just two days after I arrived at my first hospital. I arrived with what seemed to be meningitis, it was textbook and it was moving fast. Two days later my oxygen SATS had dropped to the point where brain damage had begun its process. They acted quickly; they had already started treating me, my son, and my partner for meningitis. It wasn’t until after the lumbar puncture results came back, that they realised it was not what they first thought it was.

The high doses of anti-biotics were stopped, by this point my throat and lungs had begun burning and blistering and a rash now covered more than half of my body. It was the lungs and throat burning that had begun to close up my airways and provoked the need for a ventilator to keep my brain intact. The ketamine-induced coma was to try and get my heart rate back down from the 180 beats per minute mark caused by the pain of the internal burning. If they’d not done that, I’d have certainly died from cardiac arrest there and then. I was to stay in the coma on full life support for six weeks; my total hospital stay was three months. I woke up in a different city.”

He goes on to describe how the condition has impacted his life, saying:

“I hoped I’d die, I wished every night for 3 years after my reaction that I’d not wake again. I had more surgeries than I can recall, my eyes were in a terrible state.”

This is the treatment that he requires today:

“My eyes require a tremendous amount of work. My day starts before 6am and ends around midnight. I have to change my lenses at least 20 times a day, put in more than 100 drops, both lubricants and steroids, and then there is the ever present pain. But, it’s totally worth the effort and I am so lucky, and grateful for all the work that my doctors put in to get me to here.”

He then says:

“The hardest thing about my new life, is the chronic pain”.

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Lady on raising awareness of this issue. As far as I am aware, this is the first time that this condition has been brought to the attention of Westminster Hall and the Minister. The background information about the condition indicates that it can be triggered by normal medicines such as paracetamol. Is it time for the Minister and the NHS to address the issue by raising awareness of the condition among GPs, consultants and everyone else? The condition affects only one or two people in every million, but it is an important issue.

[Dame Margaret Hodge]

I completely agree. We are raising awareness through the debate, and I hope that the Minister will take action so we can get early identification and therefore prevent people from suffering the condition’s worst impacts.

The condition is rare, and therein lies the problem. I would appreciate it if the Minister addressed the following issues. There is a lack of awareness among many medical professionals, who just do not come across the condition. Insufficient attention is paid to the condition and its symptoms in the education and training of all health professionals. Survivors whom I have talked to all talk about that. A young man, Laurence McCalla, went to my local hospital, Queen’s hospital. They gave him antibiotics; it took about 24 hours to identify the condition. At one point he had 20 doctors and consultants looking at him, because it was new to them and they wanted to learn from it as a case study. Another lad, from Worcester, said:

“There is one big thing that stands out the most from this though. It astonishes me that so many doctors I have seen do not know about it.”

Debbie Hazel was misdiagnosed three times, as doctors thought she had chicken pox. She says:

“One of the problems was the lack of knowledge doctors have about the condition.”

The mum of a 13-year-old son, who lives in Surrey, says:

“My son was so ill and I couldn’t hold him or kiss him. He was screaming because his skin was so raw. I felt helpless. Nobody could tell us what was happening because nobody knew.”

My first ask to the Minister, therefore, is for a commitment that the condition, and its symptoms and treatment, should be taught to medical students, nurses and pharmacists as part of their educational courses. SJS Awareness, the organisation in my constituency, has a fantastic poster about the symptoms and how to spot the condition. Those posters could, if the Minister were to help us, be distributed to all GPs. Early diagnosis, and therefore awareness, would not just alleviate suffering; it would save lives.

Guidance has also been prepared on the clinical pathway by the British Association of Dermatologists. What steps will the Minister take to ensure that that guidance is followed throughout the country so that identification and treatment of the condition is not a postcode lottery? SJS Awareness has asked me to ask the Minister whether we could have an SJS awareness week for the general public. We are talking about such regularly used medicines—Optrex, ibuprofen, penicillin. They are standard medications, which we do not even think about using. We need to raise our awareness about the potential side effects.

Finally, because the condition is rare, money for research on it is limited. However, there is a cost to the NHS from not understanding the condition or recognising it early and understanding how to treat it. I understand the cost of treating skin reactions is about £500 million a year and it simply makes economic sense, as well as being a question of people’s lives, of course, to use research to get better at understanding why some people have such a reaction to drugs. An interesting key finding on genetic testing is that, in China, there is a gene in the population that predisposes people to different types of skin reaction, putting them at a higher risk from the drug carbamazepine. I do not know whether the Minister has come across that. In China and Taiwan, doctors test for the gene before they administer the drug. If we did more work here, we could manage that.

We also want research on new and better ways of treating severe reactions. From what I gather, more treatment should happen in burns units; often that is not understood and people are put into the intensive care unit and given the wrong medication. Finally, it is very important that we should have research on better understanding the features of drugs that make them more liable to cause the reactions in question. Those are three hugely important areas of research. I hope that the Minister can give us some comfort on that point.

People who saw the title of today’s debate would not have had a clue what I was going to talk about, yet the condition could affect any one of us, because we all take the medications concerned—they are standard. I have a file full of tragic cases of people affected by Stevens-Johnson syndrome, yet many people would not have a clue what we are debating. I ask the Minister, therefore, to do some practical things: to help us to raise awareness; to improve the training and development of all medical professionals, so that they understand the syndrome; and to get money for research so that we can understand the causes and prevent recurrences of this terrible condition in our population.