Hilary Benn
MP for Leeds South · Labour · United Kingdom
“As the right hon. Gentleman knows, the Irish Government published on 8 June their legislative outline, entitled “The General Scheme of the Legacy of the Troubles Bill 2026”. That is intended to fulfil the commitment that the Irish Government gave in the joint framework to co-operate to the fullest extent possible with the commission.”
“Northern Ireland is a society, as the hon. Gentleman knows better than most, that has been undergoing profound change since the signing of the Good Friday agreement 28 years ago. As the famous lines go, we have a shared history, but not necessarily a shared memory.”
“The right hon. Gentleman raises a really important point, and I am grateful to him for his question. We all have a responsibility—political leaders have a responsibility to call out what was witnessed for what it is and not mince our words, and as I have already indicated, social media companies have a responsibility to ensure that such m…”
“I hope the hon. Lady will recognise that the common travel area, which is more than a century old, is of great benefit to the citizens of the United Kingdom and the Republic of Ireland. Many people in Northern Ireland live their lives across that border every single day.”
“I do agree with my hon. Friend. The attack on Mr Ogilvie was truly shocking, and there was no justification whatsoever for the racist thuggery we witnessed on the streets of Belfast in the days following.”
“That was, of course, an awful feature of what we saw. One of the things I learned in my discussions was that those from the far right had taken a list of houses in multiple occupation in Belfast—a list that, in the interests of openness, was properly available on the Belfast city council website; the council has now taken it down—and used…”
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Every one of 6,304 lines we hold for Hilary Benn, in date order, each linked to its source. Free to read, in full, without an account. Page 25 of 127.
“Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements. They would also help to improve understanding of the disease on the part of other health and social care professionals. It is hugely complex, and how it presents itself and the sheer scale of support that sufferers require are much misunderstood.”
“There is some wonderful expertise in hospitals and a number of centres of excellence throughout the United Kingdom, including the Huntington’s Disease Centre at University College London, but outside those specialist centres it is a different story. At the moment, it is hit or miss; it was put to me recently that it is more miss than hit in areas without specialist support. Social care is of course vital to help those with Huntington’s to manage day-to-day life. The cost of private care for someone with Huntington’s can amount to thousands of pounds a week—who can afford that? Some councils provide specialist care homes, but not all.”
“I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out. What needs to be done and how can the Minister help? That is why we are here today. First, we have to raise awareness of the impact of the disease and the suffering of those with it and their families. By acknowledging what it is and talking about it, we can help families who all too often choose the path of silence and shame because they do not want to talk about it to anybody else. We should say with one voice that no one should have to carry this burden alone. Secondly, families need more support, including financial help and better care.”
“Until that day dawns, we must unite in our resolve to ensure that the families and their loved ones who have this appalling disease visited upon them have the support they need and deserve, regardless of where they live in our United Kingdom.”
“I thank all the scientists who are searching for ways of lessening the impact of this awful disease and, ultimately, for a cure, as well as all those who participate in the trials, because, when a treatment does come, we will remember them as the pioneers who made it happen. I am sure that the Minister and all of us here today offer our best wishes to the scientists and researchers, hope they have every success on their journey and want to encourage them—including, where necessary, by providing more funding—in order to speed us towards the extraordinary day, which the scientists are confident will eventually come, when the awful shadow of this disease can be lifted from those who feel so helpless today.”
“There have been drug trials, including the Roche GENERATION-HD1 study, and the UK trial sites included Leeds—where my constituency is—Glasgow, Aberdeen and Cardiff. Unfortunately, last year that trial was halted, which was a terrible shock to the global Huntington’s community. However, the treatment that was being tested is to be investigated in a new trial with a different cohort of patients, and other trials are looking at easing the impact on cognitive impairment. Yes, there have been setbacks, but there will be further trials. Other scientists, with very powerful microscopes, are peering at the make- up of the sticky proteins—if I may use that phrase—that seem to be associated with this disease, but also with Alzheimer’s disease and Parkinson’s disease.”
“Recently, we have seen the development of covid vaccines. We remember how antiretrovirals were created and turned HIV from a terminal illness into a disease that can be lived with. Science, as we know, has an astonishing capacity to change lives. As I said earlier, there is currently no treatment for Huntington’s, but scientists have identified the gene, and that leads some people to argue that Huntington’s is—this is a wonderful phrase—the most curable of the incurable diseases. That is why lots of research is going on—because the gene is known—and about eight or nine pharmaceutical companies are involved. The disease is caused by a faulty protein, and Huntington’s-lowering drugs, as I think they are called, aim to tell cells, “Make less of that.” That is sometimes referred to as gene silencing.”
“By contrast, I am advised that some individual police forces do recruit candidates with the gene, but ask them to undergo a yearly meeting with a neurologist and have an MRI scan as a form of MOT. I was encouraged by the answer to my written question to the Secretary of State for Defence, because it said: “If there is clear evidence that a candidate is unlikely to develop Huntington's disease during a Service career”— that can be as short as eight or 10 years, although it can be longer— “then they may, on a case by case basis, be considered medical fit for service.” I ask the Minister simply to pass on my words to the Defence Secretary, in the hope that young people in particular aged 16, 17 and 18 who have always dreamed of a military career will have the chance to fulfil their dreams. The final thing I want to raise is research.”
“Apart from anything else, there are many clinicians and nurses who, on first encountering someone with Huntington’s disease, have to admit that they know absolutely nothing about it—they have never seen it before. That is another powerful argument for NICE guidelines: they would set an expected standard and be backed up by NHS England, and sufferers and their families could draw attention to them if the services offered in their community fell short. Fifthly, there is a specific issue related to our armed forces. Those who are known to be carriers of the gene are normally graded medically unfit for service, as are candidates with a proven immediate family history of the condition, unless they are known, as the result of a genetic test, not to carry the gene.”
“I say that because that is what she said to me this week in answer to another of my written parliamentary questions. If that is still the Government’s position, I urge the Minister to think again. Huntington’s disease is not just about neuropsychiatry. It is frankly so unique, it has such a complex range of symptoms and the challenges that it presents are so difficult, that all the UK’s Huntington’s disease organisations together believe—and I agree with them—that there is an overwhelmingly strong case for the development of NICE guidance on Huntington’s that can support the care and management of patients and help to avoid the unwarranted variation in diagnosis and care that currently occurs.”
“Scotland already has a national care framework for Huntington’s, which was developed by the Scottish Huntington’s Association and funded by the Scottish Government. It makes clear that all NHS boards must have a Huntington’s clinical lead and an adequate number of Huntington’s specialists to support the local community. I am told that the majority of boards, although not yet all, now have such posts. Formally setting out the needs of Huntington’s families for all to see in NICE guidelines would surely be beneficial to the whole UK. I anticipate that the Minister will probably argue, in response, that “There are no current plans for the National Institute for Health and Care Excellence to develop a guideline on Huntington’s disease”, and that “NHS England is developing a neuropsychiatry service specification”.”
“If that is the case—I am sure the Minister will check after the debate—such practice would be at odds with what I was told in that answer. If that is the case, it cannot be right, because patients who experience mental health problems—those who are, for example, profoundly depressed or suicidal—need help regardless of the reason for their experiencing those symptoms. We need good support everywhere. Fourthly, to come on to the point raised by the right hon. Member for Ludlow (Philip Dunne), we need NICE to produce specific guidelines on the treatment of Huntington’s disease, because there are currently none; that is in marked contrast to the situation for motor neurone disease, Parkinson’s disease, multiple sclerosis and epilepsy, for which there are NICE guidelines that have helped to improve treatment.”
“Those words reflect the fact that access to the right support is limited and varies across the UK, even though we have had commitments in the past decade, including the UK rare diseases framework in January last year. Thirdly, we need better access to mental health services and support. I asked the Secretary of State for Health and Social Care about this in a recent written parliamentary question, and the answer said: “Access to mental health services is based on clinical need, including for people with organic brain disorders such as Huntington’s disease.” I must tell the Minister that I have been advised by the Huntington’s Disease Association that some mental health trusts exclude people with organic brain disorders, regardless of their presenting symptoms.”
“I agree completely with my hon. Friend and congratulate her on her work chairing that all-party group. There is a need for a Huntington’s disease clinical lead in every area, which is not the case currently. We need consultants in psychiatry, genetics or neurology who can run clinics in collaboration with a local care co-ordinator or Huntington’s disease specialist. As my hon. Friend identified, in the absence of that, carers carry a heavy load. Let me read what another person wrote to me: “We learn to be our loved one’s nurse, dietitian, speech and language therapist, risk assessor, health impact assessor, cognitive ability trainer, physiotherapist, medicine dispenser, advocate and care manager, amongst many other things.” That is one carer talking about their experiences.”
“The Minister was right to start with that, because if we can find a way of eradicating this gene, treating it, and preventing it from being passed on, all the other things that we have talked about will be echoes of the past for those who lived in an era when there was not a cure. All of us recognise that that day cannot come soon enough, but in the meantime, we need to be better at helping those who have the disease, and the families and loved ones who care for them. Question put and agreed to. Resolved, That this House has considered Huntington’s disease.”
“I suppose I take what she said as perhaps a slight opening of the door. I am very grateful to the Minister for saying that she will go away and look at the issue of mental health, and will pass on to the Defence Secretary the point that I raised about the armed services. In one sense, of all the replies to the parliamentary questions that I asked, the one to my question to the Defence Secretary was the most encouraging; he said that the services would be willing, in the right circumstances, with evidence, which I accept that candidates will need to provide, to consider recruiting those with the gene who they do not think are likely to get the disease. I thank the Government for the money that they are putting into research. There is always a need for more funding for all sorts of research.”
“I look forward to her response, because the request for a care co-ordinator is, as she can tell, heartfelt. She is going to go away and look at it, and I am sure that is the most one can ask for, but we would like to see a result in guidance and policy. On NICE guidelines, I heard her argument, which I anticipated she would make, but I welcome the fact that she will go away and look at the issue again. We have NICE guidelines for the other conditions that I mentioned. Given the nature of this disease, its all-encompassing impact, and what we have heard, including from Huntington’s disease associations around our country, about the difficulties that people experience, the case is overwhelmingly strong for NICE guidance to be produced on Huntington’s. We shall return to that.”
“Members for Paisley and Renfrewshire North (Gavin Newlands) and for Coatbridge, Chryston and Bellshill (Steven Bonnar) for talking about the work being done in Scotland, and for highlighting the high and increasing incidence of Huntington’s in that part of our United Kingdom. Why that might be, and whether it is due to better diagnosis, we probably do not know. I also thank my hon. Friend the Member for Leicester West (Liz Kendall), who talked about the constant battle. She made the powerful point that if we could get it right for Huntington’s, it will help us to get it right for other diseases. That brings me on to what the Minister had to say. I am genuinely grateful for her response and its tone. She said that she would take things away and look at them. The Huntington’s disease community will be back.”
“Figures for tribunal cases—I looked a couple of years ago at the figures for Leeds—show that more than 50% of people who appeal to the tribunal have the decision overturned, so we have not got that process right. To draw a parallel, if 50% of people convicted in a criminal court had their conviction overturned in a court of appeal, there would be a national scandal and outrage; yet over half of the cases that eventually get to the tribunal—after months, because there is a long delay—find that the original assessment by the Department for Work and Pensions was not correct. There will undoubtedly be people with Huntington’s in that group, so the right hon. Member raised a really important point. I thank the hon.”
“I thank all colleagues who have been present—those who were able to stay to the end of the debate, and those who obviously had other matters to attend to. There has been a striking unity of purpose and resolve. I thank the hon. Member for Strangford (Jim Shannon) for his contribution. He will clearly follow up on the point about Huntington’s nurses in Northern Ireland. I did not know that statistic. I am sure that he will do so with his normal dedication. I thank the right hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), who made a really important point about PIP. It is a more general point about something that many of us will have experienced. We know what it can be like to make a PIP application.”
“The delay to the elections is clearly sensible, but it deals only with the symptoms. We are told that technical discussions are taking place on the protocol, but we all know that this is a political problem that requires a political solution. So will the Secretary of State assure the House that the time that he is now making available will be used for intensive political negotiations with the EU to find that landing zone that he has said he believes there to be—I agree with him—so that the institutions in Northern Ireland can get up and running again?”
“Further to the point made by my right hon. Friend the Member for Walsall South (Valerie Vaz) about the effectiveness of BBC local radio in questioning the Prime Minister in September—kicked off, of course, by Rima Ahmed from the wonderful BBC Radio Leeds—the Minister will have heard from Members in all parts of the House just how important that local content is to us and our constituents. I urge her to take that sense of unhappiness to her meeting with the director-general and encourage him to change his mind.”
“I welcome the Minister to his place. Can he confirm that the three premises referred to today have at no time been notified to the Government under the Vienna convention on diplomatic relations? If not, will his investigation include looking into how the people working out of these places came to be given visas by the Home Office?”
“If the House authorities decide to go down that road, will he ensure that people with all the expertise available to him will be able to attend to give us practical advice about everything we ought to be doing to keep our part in our democracy safe?”
“When it was reported in the press that the former Foreign Secretary’s phone had been hacked, the former head of MI6 said that Ministers needed to be properly educated about the use of their telephones. If we are absolutely honest—and the point has been made already today—all of us need to be properly educated about not just the use of our phones, but the use of our emails. Does the Minister agree that perhaps it is now time for us to move to a more proactive approach with Members, to ensure not only that we have the excellent advice that is available but that people are looking to make sure that we are following that advice?”
“In the announcement that it was pulling out of the deal, Russia said that it would be “risky” for Ukraine to continue to export grain via the Black sea. The only possible risk to ships comes from Russia itself. Further to the question that the right hon. Member for Maldon (Sir John Whittingdale) asked, if ships are moving out of Odesa, and with reports that the United Nations, Turkey and Ukraine have reached some agreement about ships currently in Turkish waters, does the Foreign Secretary think that there is any prospect that President Putin’s bluff will be called, that the ships will continue to be inspected by other parties to the agreement and that they can carry on helping to feed the world?”
“What is the justification for allowing Ministers to scrap legislation that currently applies simply by doing nothing because of the sunset clause? I have never seen anything like it before. What is the justification for allowing law to fall away if Ministers decide, “Well, I’m not going to address it at all”?”
“Even if Government Members agree with the aim of reviewing these laws—and there is an argument to be had for that—it is extraordinary that Ministers are asking the House to give them this power. The Under-Secretary of State for Business, Energy and Industrial Strategy, the hon. Member for Watford (Dean Russell), who is no longer in his place, did a good job of moving the Bill’s Second Reading having come to it very recently, but he had no answer to the point I put to him, and I have yet to hear one in the debate, about why Ministers should be allowed to get rid of law simply by sitting on their hands.”
“To paraphrase Lord Denning’s famous phrase, now that the incoming tide of EU law has ebbed away, have Ministers and civil servants searched every estuary, every river, every tributary and every salt marsh to make sure they have found all the bits of legislation that will be subject to this Bill? It is really important that they have done so, because if they have missed anything, that bit of legislation will fall in December next year—it will disappear from the statute book, whether Ministers want it to or not. The next thing that is objectionable about the Bill is that, for the first time I can recall, it allows Ministers to change the law of this country by doing nothing—by simply watching the clock move and the pages of the calendar fall until December 2023 comes around.”
“I point out that we are not doing very well on inward investment—we have the lowest level of inward investment in the whole G7. Part of the problem is that we have no idea, and I do not think the Government have any idea, which bits of EU law the Government want to scrap, which bits they want to amend and retain and which bits they want to keep in their entirety. We know that there is a list; reference has been made to it. It is not a little list—it is a jolly big list, and it is found on the famous dashboard. I echo the plea made by other Members: I really hope that the Government have counted everything.”
“Friend the Member for Stalybridge and Hyde (Jonathan Reynolds). What businesses want to know is what the rules are and what the framework is, because that knowledge provides them with certainty, on the basis of which they can invest and carry out their work. The Government are doing the absolute opposite with this Bill. They are saying to every one of those businesses and would-be investors, “We just need to point out that the laws, regulations and rules that are in place today may not be in place in the same form after Christmas 2023 if we don’t get round to saving them.” I cannot think of an approach more calculated to undermine confidence in the British economy and to deter would-be investors than the one in this Bill.”
“It is a form of linguistic and legislative purge, which may make those who argued to leave the EU feel better, but it does not add to the sum total of human happiness. The former Business Secretary, the right hon. Member for North East Somerset (Mr Rees-Mogg), who has just left the Chamber, made it crystal clear what the aim was when he wrote to me on 13 October and said that the Bill will require Departments “to remove unnecessary or burdensome laws which encumber business and no longer meet the Government’s policy objectives.” I remind the House that one person’s burdensome law is another person’s safe working conditions; it is their right to take parental leave. At a time of great uncertainty and economic difficulty, what the Bill does is simply add to the uncertainty. This point was brilliantly made by my hon.”
“Here we go again: another piece of legislation introduced in the name of Brexit, which we were repeatedly told was about restoring Parliament’s sovereignty and supremacy, and yet one that gives Ministers absolute control over whole swathes of legislation that impact upon our national life by cutting Members of Parliament out of the process almost altogether, and the public as well. This is what the Hansard Society had to say: “The Bill…Sidelines Parliament because it proposes to let all REUL expire on the sunset deadline unless Ministers decide to save it, with no parliamentary input or oversight.” This is a shocking Bill. As I see it, one of the main purposes of the Bill is presentational: it is trying to remove the words “Europe”, “European” and “EU” from the statute book.”
“The Bill has not just one sunset clause, but three: 31 December 2023, 30 June 2026 and forever. Under clause 1(2), Ministers can decide to retain EU law in perpetuity or until such time as they choose to change it. I wager, therefore, that as next December approaches, many Ministers will find lots of reasons to use clause 1(2), because they will not have had time to decide what to do with the legislation. In conclusion, this is a bad Bill. It threatens lots of laws that people value; it creates uncertainty; it takes powers away from the House; and it allows Ministers to repeal the law by doing nothing. For all those reasons, it should be rejected.”
“One part in particular is extraordinary; clause 7(3) proposes to amend section 6(5) of the 2018 Act by substituting it with: “In deciding whether to depart from any retained EU case law…the higher court concerned must (among other things) have regard to…the extent to which the retained EU case law restricts the proper development of domestic law.” What on earth does that mean? Can any hon. Member explain what the proper development of domestic law is? I think that clause 7 is trying to kick the judiciary again into being more enthusiastic about Brexit, but Ministers know that in the end, the courts will take into account the things that they think are relevant. I will say what I think will happen after this song and dance and all the chest beating about the wonderful new freedom.”
“I listened carefully to the commitment that the Minister made from the Dispatch Box on environmental and employment laws, but I am sorry to say that it is still not clear what he means by that. It is the detail that matters, so what will be changed and what will be kept the same? The Bill does its best to tell the courts what they can and cannot take into account when considering cases before them. The Government tried to do that previously with the European Union (Withdrawal) Act 2018 and they are back to have another go.”
“We have often heard Ministers complain about some of the consequences of the working time directive, but at other times we have heard them say, “Under no circumstances will we weaken workers’ protections.” The Minister acknowledged that we have entered into certain commitments as a country—although that does not mean that the Government will keep to them, if the Northern Ireland Protocol Bill is anything to go by—and that certain employment and environmental legislative commitments are engaged by the trade and co-operation agreement. We all know that, if we act in a way that the EU thinks gives us an unfair competitive advantage, it can retaliate. How will it help economic growth if we are inviting the prospect of that happening?”
“I say good luck to the new Secretary of State for Environment, Food and Rural Affairs, whose Department has 570 pieces of legislation—the Department for Transport has 424 and the Treasury has 374—and who will have between now and next Christmas to decide what on earth to do about them. While they are valiantly trying to do that, there is absolutely no provision in the Bill for public consultation and there will be no impact assessment on any changes that they are proposing to make. It takes a particular type of genius to make an enemy of worthy organisations such as the Wildlife and Countryside Link, the Green Alliance and others by threatening that which we and they value in pursuit of a headline. What about workers’ rights? What exactly is the Government’s intention, in detail, when it comes to the working time directive?”
“Well, what I do know is that I sat on the Council of Ministers for seven years as a Cabinet Minister and took part in discussions and decisions about directives. That is a point the hon. Gentleman never, ever mentions; it is like everybody was locked out of the room. He makes that argument to avoid addressing what is in the Bill. Saying that something in the past was not perfect—I happen to agree with him about the fact that we were not allowed to watch the Council of Ministers at work—is not an argument for what is proposed in the legislation before us today. What is more, are Ministers seriously arguing that, given all the pressures and the things that the new Prime Minister no doubt wants to do, civil servants should spend time going through 2,417 pieces of legislation?”
“In describing Russia’s increased targeting of Ukraine’s energy infrastructure, which we learned this morning has led to restrictions on power supply, the Secretary of State referred to the sheer quantity of cruise missiles and drones that are being used in those attacks. Is it now a question of increasing the equipment and capability he has announced to the House today to enable Ukraine better to resist those attacks, or are there other capabilities—he referred to some—that could be supplied or that Ukraine has requested?”
“My hon. Friend is making a very powerful case on behalf of her constituents, but does she share my puzzlement about this? The Government have made a screeching U-turn today and finally committed to a local veto. Every Member who has spoken representing areas where there has been fracking or there might be fracking has made it quite clear that there is no prospect of getting local consent; there will be a veto everywhere. Why are we going through this whole process when every one us of knows what the outcome will be?”
“As well as having to cope with the cost of remortgaging, thousands of people who thought they had bought a safe and secure home are still living with unsafe cladding and other fire-safety defects. What is the Secretary of State’s current assessment of the total number of properties in England that have yet to be made safe?”
“The Leader of the House said yesterday that what the country needs is stability and not a “soap opera”. I agree, so will she explain why the Prime Minister is still in office when it is clear to almost everyone, including many of the colleagues of the Leader of the House behind her today, that she is no longer in power?”
“Do the Government regard the Kerch bridge, which links Russia with Ukrainian territory seized by Russia in 2014, and which was attacked over the weekend, as a legitimate military target? Would the Minister care to contrast that target with the pictures we saw yesterday of a large missile crater in Kyiv, right next to a children’s playground?”
“The sheer bravery of all the women and girls who have taken to the streets of Iran to fight for their freedoms is inspirational to all of us in this House. Does the Minister agree that the oppression that they face has nothing to do with so-called religious observance, and everything to do with that age-old problem of men trying to tell women what they can and cannot do?”
“The Chancellor argues, on the one hand, that those on the lowest incomes—people on universal credit—should face the threat of their income being reduced further to boost economic growth, while on the other hand, that people already on the highest incomes, such as bankers, need an increase in their incomes through their bonuses to do the same. How on earth is that fair?”
“Will the small charities that are not registered with the Charity Commission be eligible for this assistance? I am thinking of those with an income of less than £5,000 a year that cannot register voluntarily and are not required to do so. Will they get help as well?”
“And now the day has come, as we long feared but knew it would, when she is no longer here; and, as the people of Leeds and of Yorkshire and of the country come to terms with their deep sense of loss at this moment in the history of our nation, our United Kingdom, let us give thanks for her uniquely long and well-lived life. Just as faith, hope and love abide, so will our memories of the Queen: her constancy, her service, and her profound sense of duty. Thank you for everything that you did, ma’am, and may you rest in peace eternal.”
“We have known no other, and we feel the Queen’s passing so keenly precisely because she was always here. Her devotion to duty, to service and to representing our country ran like an unbroken thread through the decades, and through each of our lives. Like the passing of time and the changing of the seasons, she was always here, and although, as we have heard, so many things changed during her reign, she did not change. Above the noisy clamour of politics and public debate, she carried on and showed us what service means—carried out with grace and with humour.”
“I rise on behalf of my constituents in Leeds Central as we, together, mourn the Queen’s passing, offer our heartfelt condolences to His Majesty the King and to the royal family on their private grief borne so publicly, and mark an extraordinary life. It was at my first meeting of the Privy Council that I came to understand that the Queen was determined that things should be done correctly. We were waiting outside the door, and one of the footmen opened it to see what was going on. As he closed it, he turned to his colleague and said, “She’s moving the footstools again!”, to which he received the reply, “She’s the Queen. If she wants to move the footstools, she can move the footstools.” Hers was a life that, above all else, embodied constancy.”