Liz Twist
MP for Blaydon and Consett · Labour · United Kingdom
“I thank my hon. Friend for this report on redress schemes, which certainly reflects the experiences of my constituents who have been involved in some of those campaigns.”
“As the Leader of the House said, today is World Suicide Prevention Day, and I thank him for his comments. In the UK, someone takes their own life every 90 minutes—the length of a football match.”
“These standards, which cover both community and urgent care, must be developed in consultation with the chief medical officer. Crucially, the new clause mandates the Secretary of State to report performance against those waiting times, alongside mental health expenditure, to Parliament every year.”
“I certainly agree with my hon. Friend’s concerns about the need for action on autism. She may be pleased to hear that the all-party groups on suicide and self-harm prevention and on autism will be doing joint work on the matter in the near future.”
“The right hon. Gentleman touches on another angle, namely the world of the internet, which provides such a challenge. The work of Ripple is important in preventing that harm, but there is so much more to do. I congratulate Ripple on its award.”
“I welcome the Bill, and was pleased to be a member of the Bill Committee. I also welcome the Government’s new clauses, about which the Minister has spoken today. New clause 159, to which I have added my name, seeks to address a long-standing legislative omission in our health service. I thank my hon.”
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“There was some discussion of this in the opening statements, but I would like further assurance from the Minister in her closing remarks that the issue of decent standards, which are so much needed in private rented housing, will be urgently addressed and brought forward in this Bill. Earlier this year, I heard from a constituent renting from a private landlord who was left without a cooker for three months of his tenancy, as well as having ongoing issues with his boiler and with rising damp, all of which he had attempted to take up with his landlord. We of course took up these issues locally to try to resolve the problems. In fact, he left the property before they were resolved, leaving the problems for the next tenant, as I understand it.”
“Furthermore, many of the families that come to me after receiving a section 21 notice are currently able to receive priority assistance from the council due to their risk of homelessness, but this Bill appears to remove the right to immediate help if families are served with a possession notice. In the absence of section 21, we desperately need this right to assistance to be reinstated as the Bill passes through its many stages. Moving away from the specific issue of no-fault evictions, I am concerned about the Government’s U-turn on the promise they made in the White Paper to introduce a requirement that privately rented homes meet the decent homes standard.”
“There is no doubt that passing the Bill into law will be a vital step forward, but it needs to be effective as well. So the issues about the courts need to be resolved as a matter of urgency, and I hope that the Minister will address those in her closing comments. I have some other serious reservations about how some of the provisions will work in practice. Just on the issue of section 21 evictions, the new grounds for landlords to reclaim possession make it clear that they will be banned from re-letting their property only for three months after evicting a tenant. The kind of rent increases we are seeing today may well mean that repossession is still well worth it for a landlord, I am afraid.”
“Many of my other constituents’ stories reflect this one—families with disabled members who are distraught at losing their homes to landlords who are putting up the rents, making them beyond their reach. These are just some of the 70,000 households that have been unfairly evicted since the Government first promised that they would take forward this legislation. How many more of my constituents will be served a section 21 notice before this legislation not only gets on to the statute book, but becomes effective with the reforms to the justice system and the courts? I have had so many constituents write to me asking us to press for this Bill to come forward, but I fear we will not have met their expectations and their hopes for the protection of tenants in the future, particularly in relation to section 21.”
“Never a day goes by without a constituent, or more than one constituent, contacting me about problems they are having with their housing. In particular, my caseworkers and I have been startled in recent months by the number of people coming to us who have been served with section 21 notices. I will give just one example. I was contacted just a few weeks ago by a family in my constituency who had been served both a section 21 notice and a section 13 notice of increasing the rent. The son in the family has epilepsy, asthma and autism, and he attends a local school where he has an education, health and care plan in place. The family cannot afford private rent, but with the social housing stock under so much pressure, they were terrified they would not find a home close enough to his school and to much-needed family support.”
“Water companies need stable finances to make improvements. In December 2022, Ofwat outlined concerns about the financial resilience of several water companies. What has the Minister done to mitigate the risks, and what will she be doing in future?”
“5. What assessment she has made of the implications for her Department’s policies of the Climate Change Committee’s 2023 Progress Report to Parliament, published in June 2023.”
“The latest Climate Change Committee report found that, out of 50 key indicators of Government progress on tackling climate change, just nine were on track. According to Energy UK, even before the disastrous offshore wind auction, the UK was forecast to have the slowest growth in low-carbon electricity generation of the world’s eight largest economies up to 2030. Does the Minister recognise that the Government’s failure has cost every family £180 in higher bills?”
“This Sunday is World Suicide Prevention Day, and so many organisations and groups will be working hard to highlight the need for all of us to work towards preventing suicides—groups such as If U Care Share in the north-east, which will be running its “Inside Out” campaign, as well as national charities. I hope that Members from across the House will help to spread the message that it is good to talk, to reduce suicides. As we await the publication of the national suicide prevention strategy—imminently, I believe —can we have a debate in Government time on the strategy and how we can prevent suicide?”
“Can I just say that I concur with the right hon. Gentleman’s comments about research and health research? There is a concern about how it is being handled.”
“This severely limits the ability of those affected to perform the most basic tasks of daily life. Children with FOP lose their independence just at the point they should be gaining it. Many of the issues affecting families of children with FOP are experienced by other people across the rare disease communities, including long diagnostic odysseys.”
“I thank the right hon. Member for Hemel Hempstead (Sir Mike Penning) for bringing this debate to the Chamber and for all the work he has been doing to raise these important issues within Parliament. It was good to hear such a fulsome and good description of the condition and how people are affected by FOP. As chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad to be able to take part in this debate to highlight the issues facing people with FOP. We have heard from the right hon. Member about just how debilitating this condition is. Usually caused by a gene mutation, FOP is the only known condition where the body changes one organ to another. Bone forms in muscles, tendons and other connective tissues, progressively and irreversibly restricting movement.”
“Member for Hemel Hempstead said, time really is of the essence if we are not to lose the benefit of the work already done and if we are to give those with FOP, and those who may be born with the condition in future, the best chance of the earliest possible diagnosis and treatment.”
“Member for Hemel Hempstead about the STOPFOP trial, which is supported by funding from the European Union’s Innovative Medicines Initiative as part of Horizon 2020. Is it not ironic that we are discussing this on the day we have heard that we are now in the Horizon programme? Thank goodness we are; it is an important move. However, there have been two years of wasted opportunities and uncertainty for people going through trials and research, such as people with FOP. I understand that researchers would have to apply for new funding from the scheme to carry on with the STOPFOP trial. How will the Government ensure that funding continues to be available to allow the trials to continue, and to ensure real progress in diagnosing and treating FOP? As the right hon.”
“Despite genetic tests being available, FOP is not included in the national genomic test directory for rare and inherited conditions. Can the Minister explain why it is not included in that directory? What plans do the Government have to change that position? The real hope for FOP, as we have heard, is new research. Like much of the research into rare conditions, it is likely to have far-reaching benefits for more common illnesses, such as osteoporosis, childhood brain cancer and heart disease. At the moment, the Government are overseeing a decline in research and international life science competitiveness, with commercial clinical trial activity in the NHS declining over recent years. We have heard from the right hon.”
“Within the rare conditions community, a diagnostic odyssey, as he will know, refers to a common scenario in which delays to accessing the right support and the right treatment—where it exists—can cause irreversible deterioration of an individual’s condition. While there is no treatment for FOP, repeated investigations, such as biopsies, can trigger the condition’s progression. That can be triggered by trauma, too. Furthermore, delayed diagnosis prevents parents from taking action to keep their children safe from situations and activities that could trigger injuries and flare-ups. Unfortunately, a diagnostic odyssey is the norm for many children with FOP. Getting a diagnosis takes one and a half years on average, and more than half of people with FOP get the wrong diagnosis in the first instance, as we have heard.”
“I thank the right hon. Member for making that clear. He is right that it is important for the families. Sometimes in this House—even in our APPGs—we use a kind of shorthand about issues to bring people together. FOP is indeed, as he said, a genetic condition. The rare disease community has some issues in common, including those long diagnostic odysseys. How long do people have to wait for their condition—I will use that term—to be recognised? There is a lack of clinical awareness with many of these conditions and limited treatment options for far too many people. FOP, as the right hon. Member has said, is perhaps one of the rarest and most disabling of these conditions, with no treatment or cure.”
“I thank the Minister for his comments about the UK rare disease funding. It is very welcome, and I am particularly pleased to see that some of those centres are in Newcastle, in the north-east. That is really important, as I will discuss in my Adjournment debate later. Will he talk specifically about research into this condition, which is what the families will want to hear?”
“On newborn screening, is the Minister aware that there is concern among the rare disease community about the limits of our newborn screening process? This is something that we are speaking about at the moment. We think that there are options for it to be expanded in a positive way.”
“I hope that the Minister can today provide assurances that his Government plan on delivering a detailed strategy to support the expansion of the cell and gene therapy sector, to allow patients equitable access to treatments that stand to transform their lives. We have so many opportunities now, and we need to make the most of them for those who are affected by rare conditions and rare diseases.”
“There are a lot of considerations here, but first and foremost what we need is a strategy—a strategy that will not only plan for the expansion of the sector but do so in a manner that puts patient need and care at the heart of its goals, because that is what this is all about. It is important that patients are listened to in all this and that plans are put in place not only to develop and deploy treatments but to ensure that patients are supported prior to, during and after receiving new therapies. As we upskill people to get involved in this space, we need to imbue them with an intimate understanding of the lives of the people they are working to treat, so that they might best serve their needs and understand their priorities.”
“We have to make sure that we are capturing the talents and experiences of people across the UK, not just in London, Oxford and Cambridge. We also need to ensure that there are research facilities looking at rare diseases right across the UK. Newcastle is a key centre, and the north-east has an important part to play; I would like to stress that. The cell and gene therapy sector must work with local authorities to develop more locally responsive recruitment and regional skills pipelines, with greater information sharing between manufacturers and treatment centres to ensure that patient demand is met.”
“That is why we need a national vision to ensure an equitable, standardised approach to the expansion of the cell and gene therapy field and the training of NHS staff. Accreditation passports, a central learning hub and provision of flexible, blended training opportunities could all come into play. Geographic considerations are important more broadly within the sector and life sciences as a whole. While much of the UK’s life science industry is concentrated in the golden triangle, the cell and gene therapy industry is generally better distributed. My local enterprise partnership in the north-east has identified cell and gene therapy as a key area of growth for the future, and the sector could offer jobs for people with various levels of qualifications across the region.”
“To tackle that, we need new forms of accreditation that can guarantee consistent and quality practice. We should also find ways to incentivise companies to share their knowledge to the benefit of the whole sector. Of course, many of these issues relate to the development and manufacturing of cell and gene therapies, but if patients are to benefit from these new treatments, NHS staff must also be trained to deliver them, or we could end up in a situation where treatments are available but patients cannot access them. There is also a risk of geographic and socioeconomic inequities in access to advanced therapies. Without proper planning and preparation to ensure health service readiness, some patients could be disadvantaged based on where they live.”
“For non-graduates or those changing careers, we should be taking advantage of the cell and gene therapy catapult’s existing advanced therapies apprenticeship community and advanced therapies skills training network. With ringfenced funding and the convening power of Government, the Government could help to expand those schemes into a national training framework, to develop a sustainable workforce pipeline. Training bursaries may also need to be provided for those changing careers, so that adult workers can learn new skills without losing income. At the moment, training academies run by well-funded individual companies risk undermining collective training efforts, fragmenting training standards and depleting the workforce pool for small and medium-sized enterprises.”
“Instead, it will need to draw on workers in declining industries, such as oil and gas production, and attract people who have not been to university. The Government need to support the CGT industry to access all those potential pools of recruitment by promoting the visibility of the cell and gene therapy field and investing in training and development programmes. A first port of call, for example, could be working with stakeholders to create a central platform for job, training and education opportunities in the sector, so that those interested in the industry need only go to one place to find the information they need. Most critically, the Government need to play an active role in equipping candidates with the skills they need, working with academia and industry to create a national strategy for placements and internships.”
“That could include bringing scientists and industry experts into classrooms, or a focus on understanding rare conditions, cancer and the transformative effects that treatments can have on patients’ lives. Heightened public awareness of the lived experiences of rare disease patients, and of the transformative potential of cell and gene therapies, should also feed through to higher education, but as it is very much a specialist field, science, technology, engineering and maths students need guidance on how to specialise. They also need to be equipped with the basic lab skills and experience needed to get started in the workforce, which is a particularly current issue for the industry. However, the industry will not be able to rely solely on new graduates.”
“However, there are significant barriers to achieving that: the highly specialised and complex nature of advanced therapies makes the sector particularly vulnerable to skills gaps. What we need is a UK-wide strategy and plan to develop a workforce that possesses the relevant skills that are desperately needed by the industry. One hurdle is the limited public awareness, outside the academic world, of cell and gene therapies. Improving the exposure of career pathways will be vital, especially for potential technicians and other staff who will have less familiarity in the field. Proactive engagement with students as early as primary school could empower them to pursue careers in cell and gene therapy.”
“Specific infrastructure is needed to deliver them, from specialised manufacturing sites to specialised equipment in hospitals, as well as a specialised workforce, which is the focus of this debate. The number of cell and gene therapies coming to market is expected to rise significantly in the coming years, but the current picture suggests that staff shortages could hinder progress. There is therefore an urgent need to prioritise skills provision. We need a significant expansion of the cell and gene therapy workforce. Studies by the cell and gene therapy catapult show that the cell and gene therapy and bioprocessing industries in the UK currently employ nearly 7,000 people, and that the number of highly skilled roles required is expected to more than double by 2026.”
“For more patients to benefit, we need not only a more expansive newborn screening programme, but a cell and gene therapy sector equipped for timely development and delivery of new treatments, many of which are becoming possible and available. At this stage, I acknowledge the work of LifeArc, which has published a report on the future possibilities for cell and gene therapies in the UK. The report highlights what we need to do to make the most of the opportunities that we have. So far, the timely development and delivery of new treatments is not guaranteed. The very nature of cell and gene therapies means that they are unlike standard off-the-shelf medicines.”
“As a result, Louis became the youngest pre-symptomatic baby in the UK with SMA type 2 to receive Zolgensma, a groundbreaking new gene therapy, at just 18 days old. More than a year on from getting that treatment, Louis has no signs or symptoms of SMA and is expected to continue to grow and live his life free from the disease. As SMA is currently not screened for in the UK’s newborn screening programme, Louis would not have received such early intervention had it not been for Freddie’s diagnosis. As cell and gene therapies tend to slow down or prevent disease progression, early intervention can be absolutely vital.”
“Following a long struggle by the boys’ parents, older brother Freddie was diagnosed at 12 months with spinal muscular atrophy, a rare, genetic neuromuscular condition that causes progressive muscle wasting, as the Minister will know. Freddie is a happy, social and determined boy, and he has hugely benefited from access to the lifelong treatment nusinersen, which his family say has saved his life and independence. However, they have faced challenges and costs in securing the equipment needed to allow Freddie to have the freedom he deserves, including fundraising for an all-terrain wheelchair that allows him to take part in as many activities as possible with his peers. As Freddie was diagnosed with SMA, his younger brother Louis was screened for SMA and diagnosed before birth.”
“That requires us to recognise that research and healthcare have not always been equitable and that patient decisions to participate in clinical trials or receive treatments may be more complex than for conventional medicines, because of the very irreversible, one-off nature that makes them so transformative. That is why ongoing patient and public involvement is so important, to build better relationships between researchers and patients and empower patients to make informed choices. I want to talk now about two of my constituents, Freddie and Louis. There are many stories about the transformative effects of new gene therapies, but I will speak about the story of these two young brothers.”
“Not only do these therapies provide relief for patients from the need for lifelong treatments; they could provide long-term cost offsets by freeing up NHS resources and enabling patients and their carers to be economically active. However, it is not only rare disease patients who stand to benefit from cell and gene therapies. As research continues, we could see a world where cancer patients can be effectively cured of their disease and where type 1 diabetes is addressed by enabling the body to once again produce and regulate insulin. These developments are huge for patients. That is a point that I want to stress, because in all these debates we need to remember who is at the centre of this new technology: it is people, living their lives in the best way that they can, and wanting the best life and the best treatment possible.”
“What a coincidence to have one debate about rare conditions followed by another. I am pleased to have secured this debate on skills provision for new cell and gene therapies. The emergence of new cell and gene therapies, sometimes known as advanced therapies, offers real hope for patients with rare and genetic conditions. Many of these patients have so far faced limited treatment options and endured great challenges associated with managing their conditions long term. However, using the power of human biology, cell and gene therapies can address the root causes of diseases rather than just their symptoms, preventing disease progression and even saving lives. In many cases, a single one-time treatment can be all that is needed to alleviate a disease.”
“T2. Thousands of women who have been underpaid their state pensions due to departmental mistakes will be forced to wait until the end of 2024 to see this error addressed. Does the Minister really think this is acceptable?”
“Almost one in two properties in my constituency, and less than one in five in rural areas, do not have access to gigabit broadband. They do not even have superfast connections. The Department must help properties get connected where profit incentives are low. Will the Minister provide an update on the gigabit voucher scheme and the total value of vouchers claimed this year?”
“Gateshead food bank and Feeding Families, both of which operate in my constituency, have seen huge increases in the demand for food parcels over recent years. With food inflation running at 18.3%, the situation will only get worse. What will the Minister do to tackle food inflation, so that people do not have to rely on those organisations?”
“1. What recent assessment she has made of the effectiveness of the Crown Prosecution Service in ensuring access to justice for victims of crime.”
“In October 2021, the Government made the not hugely ambitious pledge to reduce the size of the Crown court backlog within four years. The latest figures published last week show that the backlog is now almost 2,900 cases higher than when they started. Will the Solicitor General explain what new steps the Government will take to meet their target, as what they have been doing so far clearly is not working?”
“It is two years since the Government’s rape review, which the Secretary of State referred to earlier, but too many rape victims are still being failed by the criminal justice system, at every stage of the process. Although it is good to hear those positive reviews, too many women are not experiencing this. So what more are the Government going to do to step up the work to ensure that dealing with rape is a priority?”
“We know from answers to previous questions that the taxpayer is still being billed £700,000 a day, which is £5 million a week or £21.4 million a month, to store personal protective equipment, much of which is of too poor quality to be used. What will the Secretary of State do to make sure such reckless procurement never happens again?”
“This Sunday in Glasgow, we will see the start of the Baton of Hope tour of Great Britain. It is visiting 12 cities across Great Britain and will reach Newcastle on Tuesday 27 June. I hope to be there to meet the organisers. They are meeting with a simple message: “Where there is HOPE, there is a real opportunity to save lives”. The organisation was founded by Mike McCarthy and Steve Phillip, who lost their sons, Ross and Jordan, to suicide. It will reach Downing Street on 6 July. Can we have a debate in Government time, please, on suicide prevention, because suicide is preventable and not inevitable?”
“While some parents and children will be entitled to an interim payment, it has become apparent that that will only apply to those who lost their loved ones in an arbitrary three-month period between July and October 2022. Do the Government believe that the suffering of families of people such as Graham, who lost their lives so early, is not worthy of recognition? Graham’s sister Diane went into care work to give back to hospice staff who looked after Graham in the final days of his life. From great tragedy, she has worked to make something good. Today she mentions Graham’s name as often as she can, but she has endured years of suffering, with little support for her and her children other than from an AIDS charity. The Government must let people know how they can get compensation.”
“We need recognition for what has happened.” There has been widespread acceptance across Government of the wrongs done and the need for compensation, but, as the second interim report outlines, the families who deserve this compensation “do not yet know the nature of the body who will determine it, how that body will assess and deal with their claims, nor the boundaries of eligibility”. That delay, on top of years of denial and no accountability, places a further toll on victims, more than 500 of whom are estimated to have died since the inquiry began. Sir Brian Langstaff has recommended that the compensation scheme must start now. If the Government do not meet that recommendation, they are accepting that more victims will not live to see justice—not only those infected, but their bereaved relatives and carers.”
“Those who have cared for and loved those people, and in many cases have lost them, have also suffered trauma beyond imagining. Graham lived with his sister and her young children in the last years of his life. The deep emotional and physical impact of his loss have been felt through three generations of their family. His sister says: “Our lives shouldn’t have been like this. They were dictated to by people who didn’t know us. Sorry doesn’t cut it—compensation is the only way that the Government will think twice about doing this again. I am frightened that the inquiry will end and it will all disappear.”
“Graham died peacefully in a hospice aged just 26 on 23 April 1996. By that time, he and the family were well aware that he had been given contaminated blood products. Diane tells me that before he died he said, “Don’t forget.” Talking to Diane, the immense betrayal that the family have felt as a result of the scandal was clear. She told me: “There is a base level of trust that we have in our lives, in our society. And that was breached.” Like Graham and his sister, many people affected by haemophilia grew up around hospitals and got to know healthcare professionals as though they were family. The betrayal they feel is deeply personal and the inquiry, while also necessary, tortures old scars for many of them. The victims of the scandal are not only the people who have died or suffered immeasurably as a result of being infected.”
“Of course, that strength should never have been required of them, but I am truly humbled by it. I was humbled again recently when I spoke to my constituent Diane, who shared with me her experiences of living with and losing her brother, Graham Fox, and asked me to take part in this debate today. Graham had severe haemophilia. He was treated with factor VIII as a child and became infected with HIV and hepatitis C. Diane told me that as a child and as a young man, Graham never let his condition get in his way. He was a keen cyclist and kept himself very fit. However, to be told as a late teenager that he had been infected with those diseases was devastating for Graham. The whole family was affected, not only by the knowledge that they could lose Graham, but by the fear, ignorance and lack of information about his condition at the time.”
“I start, as others have done, by thanking my right hon. Friend the Member for Kingston upon Hull North (Dame Diana Johnson) and the hon. Member for Worthing West (Sir Peter Bottomley) for obtaining this debate. The families affected by the scandal have endured unimaginable suffering. They were failed when their loved ones were infected, they were failed by the Government’s subsequent denial and neglect, and now they have been failed by delays in getting the justice they deserve. While the inquiry has been a source of healing and community for some of the families, it has often required them to relive their most traumatic memories, for which they are yet to receive proper closure or justice. I pay tribute to them and thank them for their strength in sharing their stories.”
“I urge the Minister to work with us to get the BBC to pause this plan, and engage with the public on the restructure through the consultation, which has been sadly lacking.”