Sir Mark Tami
MP for Alyn and Deeside · Labour · United Kingdom
“On the point made by the hon. Member for Harrow East (Bob Blackman), Bellway is certainly a company that has done this. Indeed, many people did not even realise that they had a leasehold house and only found out quite a while afterwards when all the costs started to come down the road.”
“The thing that really surprised me was that Wembley is not just your average stadium; it is a purpose-built stadium that we would expect to have the best security, yet that number of people were able to get through. As my hon. Friend said, that could potentially have caused the loss of life.”
“The hon. Gentleman mentioned the work of Harefield Hospital. My son has been at Harefield for four months after having a heart transplant just before Christmas; it has been a very traumatic time. I would like to place on record the incredible support and care the hospital provides.”
“I promise the hon. Member that I will not. As someone who is very pro-nuclear, I believe that one big issue is that we have loads of reviews, and identify all the problems and what we will do, and then never actually do it. If we do get around to building a station, we build one—not a number of them; just one.”
“I have been to Finland and seen its waste repository. It is not rocket science—it is not that difficult. We have put this off for years and years. The argument always used against the industry is, “There is no answer to the waste.” Well, there is an answer, and it is straight- forward. We just need to make that decision.”
“The right hon. Lady is making an important point. This should not be a bolt-on. It should be part and parcel of the treatment. We tend to address the physical side of the illness, open the door and away we go, and we do not ask people about some of the issues that they are struggling to cope with.”
The complete record
Every one of 600 lines we hold for Sir Mark Tami, in date order, each linked to its source. Free to read, in full, without an account. Page 1 of 12.
“My hon. Friend is making a very powerful case. If someone smuggling drugs or arms is caught, the penalties are severe. For smuggling kittens or puppies, the penalties are virtually non-existent, let alone the enforcement.”
“Smaller companies are often put off because the cost of tendering for such contracts is so high that failing to win the contract could have a really detrimental impact on the business as a whole.”
“On the point made by the hon. Member for Harrow East (Bob Blackman), Bellway is certainly a company that has done this. Indeed, many people did not even realise that they had a leasehold house and only found out quite a while afterwards when all the costs started to come down the road. I welcome what the Government have done, but we must try to find a good solution for everybody who now finds themselves in this position, because in the years to come those houses could become very difficult to sell.”
“I thank the Minister for giving way again. One problem is that many of these companies encouraged buyers to use their lawyers, who did not point out some of the pitfalls of leasehold properties.”
“The thing that really surprised me was that Wembley is not just your average stadium; it is a purpose-built stadium that we would expect to have the best security, yet that number of people were able to get through. As my hon. Friend said, that could potentially have caused the loss of life.”
“I promise the hon. Member that I will not. As someone who is very pro-nuclear, I believe that one big issue is that we have loads of reviews, and identify all the problems and what we will do, and then never actually do it. If we do get around to building a station, we build one—not a number of them; just one. Then, a number of years after that, we might build another one, but to a completely different design. That is how we keep going in this country. Does he agree?”
“I have been to Finland and seen its waste repository. It is not rocket science—it is not that difficult. We have put this off for years and years. The argument always used against the industry is, “There is no answer to the waste.” Well, there is an answer, and it is straight- forward. We just need to make that decision.”
“The hon. Gentleman mentioned the work of Harefield Hospital. My son has been at Harefield for four months after having a heart transplant just before Christmas; it has been a very traumatic time. I would like to place on record the incredible support and care the hospital provides. I also want to say that we think of heart attacks, heart failure and similar conditions as affecting people my age—maybe people a bit younger or a bit older—but heart failure and heart conditions can affect young people as well. We must not have lazy diagnoses where people think just because somebody is young, they cannot possibly have heart issues, cancer or other issues. As I said, I really want to put on record the great support that Harefield Hospital provides.”
“The right hon. Lady is making an important point. This should not be a bolt-on. It should be part and parcel of the treatment. We tend to address the physical side of the illness, open the door and away we go, and we do not ask people about some of the issues that they are struggling to cope with.”
“Does it also cover other Church property such as houses? There is quite a lot of concern about the upkeep of such properties. Anyone who has seen ex-vicarages up for sale knows that most of them look as if no one has touched them since 1950. Does the Measure cover them? What is being done on keeping properties? Even if they are to be sold, their value will be higher if they are looked after properly—let alone the wellbeing of the people who have to live in them.”
“It is a pleasure to serve under your chairmanship, Mr Gray. May I first thank my colleagues for their support this morning? The Second Church Estates Commissioner may be surprised to know that we will not be oppose the measure, but I want to raise a couple of general points. On the pension issue, which he has raised, my right hon. Friend the Member for East Ham (Sir Stephen Timms) raised some concerns in oral evidence about using capital sales to fund pensions. I know that that applies only up to 1997, but I understand that the sums already expended run to £130 million a year. That amounts to £900 million, which seems quite a lot. Does the Second Church Estates Commissioner have any views on the matter? On the sale and care of property, the Church of England (Miscellaneous Provisions) Measure refers to churches and land.”
“I thank my hon. Friend for giving way. He will be aware that I have the privilege of representing Shotton steelworks, and he has been there with me to see the high-quality products made in that profitable plant, but in order to carry on it needs to recruit and retain quality employees. What we have seen, however, is a Government who do not care, and if that message gets through to the workforce we are not going to retain those skills.”
“Shotton can use imported steel from India, but that is not a long-term alternative. Importing steel from halfway around the world, rolling it, taking it up to north Wales and then exporting it to Europe does not have a green footprint. Does the Minister accept that? How long will it be before the arc furnace is actually built?”
“I represent an area with a lot of leasehold houses. It is just a cynical money-making scam. Some people own a house but are required to pay an admin charge to change the flooring or have a pet, so it does not feel as if they own it. I can understand the flooring thing if they are in flats, but not if they are in houses. It is just a con.”
“This campaign sprang out of the injuries and injustices faced by Jade’s family, and it is only right that Jade’s law puts it right for them and for other families. I conclude by reading a statement issued by Jade’s parents after their daughter’s killer was sentenced: “Jade was the sunshine in our lives, she was the glue that held us all together. She was also a devoted mum who would do anything for her children, a much-loved friend, daughter, sister, aunty, niece and granddaughter. Jade’s whole life was ahead of her, and her death has left a void in all our lives.” Sadly, it is too late for Jade. But her children, and others in the same situation, still have their whole lives ahead of them. We owe it to them to ensure that the system is on the side of victims.”
“We secured a Westminster Hall debate when the petition surpassed 100,000 signatures, and I thank the Minister, the right hon. Member for Charnwood (Edward Argar), for engaging with us. I thank Labour colleagues who helped with the campaign, including my hon. Friends the Members for Lewisham West and Penge (Ellie Reeves) and for Birmingham, Yardley (Jess Phillips). Unfortunately, as I understand it, the Government amendment does not include provision to apply Jade’s law retrospectively, as there will be a duty on the Crown court to make a prohibited steps order only when sentencing an offender. Will the Government look at further steps to ensure that people, like Marsh, who have already been convicted of murder within the specifications of Jade’s law are made subject to it?”
“That is why Jade’s family and friends have been campaigning to automatically suspend the parental responsibility of a parent found guilty of murdering their child’s other parent. The onus is currently on the family to prove why Marsh’s parental responsibility should be revoked or restricted, whereas Jade’s law will mean that parental responsibility will be automatically suspended in such circumstances, thereby shifting the onus, with the substantial review process that the Government outline in their amendment, to ensure that the suspension of parental responsibility is in the child’s best interests. Last year, Edwin Duggan started a petition to put Jade’s law on the agenda, collecting more than 130,000 signatures. Since then, parliamentary colleagues and I have pushed the Government to make Jade’s law a reality.”
“In cases where the convicted parent showed long-running obsessive and controlling behaviour prior to their imprisonment, the current process effectively grants them the means to continue the control and coercion of the victim’s family in the same way that they did with the victim. It can be extremely traumatic for children to know that the person who killed their mother knows so much about their lives, particularly in cases where the children witnessed the murder. With the introduction of Jade’s law, no longer will perpetrators with a history of abusive behaviour be able to force controlling and psychological abuse upon the victim’s family from inside their prison cell.”
“Despite his appalling actions, Russell Marsh, who shared four children with Jade, still retains parental responsibility under law. The law as it stands allows a parent convicted of the murder of the other parent the power on issues such as where the children go to school and whether they have passports, holidays abroad and medical treatment. These matters often end up in the family court. We can only imagine how traumatic this must be for the families going through this. After having already suffered the unimaginable pain of losing their daughter in the way Jade’s family have, the current process compels them to face their daughter’s killer and acts as a constant reminder of their darkest moments.”
“I wish to speak in respect of Government new clause 37. I welcome the fact that the Government have finally changed their mind, despite telling us for so long that Jade’s law could not be done. I would like to pay tribute to Jade’s parents, Karen Robinson and Paul Ward, to their friend Edwin Duggan and to Jade’s siblings for their tireless campaigning and the bravery and tenacity they have shown in what is an incredibly tough situation. On 26 August 2021, Jade, aged just 27, was brutally killed by her estranged husband Russell Marsh. On 12 April last year, Marsh was given a life sentence with a minimum of 25 years in prison. Despite these distressing circumstances, Jade’s family was horrified to learn that they face the prospect of continued contact with the man who murdered their daughter.”
“The Minister will know that Shotton steelworks rely on steel from Port Talbot. What assurances can she give on the supply of steel between the closure of the blast furnaces and the installation of new electric arc furnaces?”
“I am a parent who was told the devastating news that my son had leukaemia, and he subsequently had to have a stem cell transplant. It is devastating news. Fortunately, we were lucky, but something I have campaigned strongly on is the fact that we address the physical side of the illness, but not the psychological support that those children need, and that they might need in later life as well. We need a more rounded approach. People should not have to go out there and seek that support as something extra; it should be part of the overall treatment path.”
“I certainly welcome the Secretary of State’s change of heart on the statutory inquiry: that is vital to get the answers that all the parents deserve. It is also vital that any other parents who have concerns about the treatment of their child when Letby was working at Chester and Liverpool have those concerns fully investigated or reinvestigated by the police, so will the Secretary of State ensure that the Home Secretary provides whatever resources the police need to make that happen?”
“My hon. Friend will be aware of the world-class Toyota engine plant in my constituency that produces the highest-quality hybrid engines—one of the first plants outside Japan to do so. Does he agree that hybrid is part of the solution, not, as the Government think, part of the problem?”
“My hon. Friend has rightly talked about producing batteries, but the position with hydrogen is very similar: if we look at what Germany is doing, particularly with buses and bigger vehicles, we are years behind. We really need to invest in that area.”
“The Minister talked about the importance of the Toyota factory. In my constituency, I have the engine plant, which produces quality hybrid engines. Why are this Government opposed to hybrid engines?”
“It is a pleasure to serve under your chairmanship, Dr Huq. I enjoyed the history lesson. It was very helpful to us all. Clearly this is a highly technical Measure to which we have no objection. This is probably the first example of levelling up actually working under this Government, so we will not vote against the Measure and we wish it well.”
“As many in the House will know, in 2008 my son Max was one of the children to receive a transplant, and I am pleased to be able to tell the House that, following the completion of his MA at the University of Manchester, he will be starting the first day of his job tomorrow. Max responded well to treatment, after a very bumpy road, but I cannot overstate the sheer terror and mental anguish of that experience for me and my family.”
“I am very grateful to have been granted today’s debate on the impact of the cost of living crisis on stem cell transplant patients and their families. I thank all the Members who have stayed for this evening’s debate, and I should put on record that I am chair of the all-party group on stem cell transplantation and advanced cellular therapies. Many Members will be aware that a stem cell transplant is an extremely intensive treatment for blood cancer and blood disorders. Receiving a stem cell transplant is a long and difficult journey, and not without considerable risk to the patient. Despite this, stem cell transplantation is an absolutely vital treatment option. For many patients, it may be the last chance to cure their disease. Overall, an average of fewer than 5,000 people receive a stem cell transplant every year.”
“Saying that, we still managed to build up debts, but we were in the hospital off and on for about two years and we saw many people who were not in that fortunate position—single mothers, people without a car who had to rely on public transport, people without a family network to support them, and people without that financial back-up to get through what is not only a traumatic process but a costly process for the family of the person being treated.”
“My hon. Friend must have read my speech, because I will develop precisely that theme, as it is very important. When we went through that very difficult time, we were fortunate financially in that I had a well-paid job, being a Member of this House. I also had a very flexible and understanding employer; I was allowed the time off to be at the hospital. We had a car. We could afford to stay in a hotel if necessary and to eat out.”
“I thank my hon. Friend for making that very important point. I was talking about how much the costs were back then, but clearly people going through the process now are experiencing what we term the cost of living crisis, which is affecting everyone.”
“Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.”
“I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from. As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end.”
“Clearly, the record food prices we are now seeing make the situation far worse. We hear on the news that people are going for cheaper options.”
“Absolutely. My hon. Friend makes an important point. Patients must continue to take those extra measures for fear of getting an infection that could be life-threatening. As she said, they are advised to keep warm at all times, to sterilise drinking water and to wash their clothes more often. With the surge in electricity and gas bills, those extra costs are really hitting patients hard. Another part of the transplant process is having what is known as a clean diet, which basically means that the patient needs to know exactly where their food comes from and how it was cooked, so they tend to cook it themselves, which in the main makes for a more expensive process. Ready meals are not really an option. If someone very kindly prepares something, they cannot take the risk because they cannot be 100% sure where it has come from.”
“Urgent action needs to be taken. Ultimately, stem cell transplant and CAR-T therapy patients have only one chance of recovery. They need extra support from the Government now, to see them through the cost of living crisis and enable them to realise that chance that they deserve.”
“It has never been more important to ensure that everyone has access to the financial support they are entitled to, and not leave vulnerable people stranded. That must be addressed as a matter of urgency. The Government need to ensure that the people who need the benefits the most get them the soonest. To conclude, it is clear that the current benefits system is not sufficient to tackle the unprecedented cost of living crisis and the rapidly rising need for financial support among the most vulnerable in society. Many years ago, when I was going through the process with my son, the system for supporting patients was not right, and it is not right now—it has to change. While charities such as Anthony Nolan do an incredible job supporting patients, they should not be left to fill the gaps that Government policy leaves.”
“There was no financial help for me to pay for transport costs when I most needed it.” I hope the Minister can see that patients are raising consistent concerns. Finally, I call on the Government to guarantee that all stem cell transplant and CAR-T therapy recipients receive the benefits that they are due and for which they are eligible in a timely manner. I know this is an issue for all benefit recipients, but people in this condition need to receive those benefits when they need them: straightaway. Macmillan has done an incredible job shining a light on the waiting time for personal independence payments, with the average still standing at a shocking 14 weeks. I echo its calls for the Government to cut that distressingly long waiting time without delay.”
“As I have said, fewer than 5,000 people receive a transplant in the UK each year, so such a fund would not represent a significant cost to the Treasury, but it would make a massive difference to patients’ lives. Take it from Claire, who underwent a stem cell transplant and CAR-T therapy in London after relapsing in 2019. Speaking of her experience with travel costs, she said: “During my CAR-T treatment I had to travel hundreds of miles for vital hospital appointments at the huge cost of £160 per trip. Living so far away meant I had to pay for overnight stays in hotels, which was really hard to budget for. On top of that, hospital parking costs for family and friends visiting when I was an inpatient were sky high.”
“Secondly, I back Anthony Nolan’s proposal for a patient travel fund for stem cell transplant and CAR-T therapy recipients in the UK. Such a fund would—and should—cover all costs associated with safe travel to and from hospital for treatment. A Government healthcare travel costs scheme exists in England, but it has a high eligibility threshold, greatly limiting the number of patients who can receive it. Typically, payments are not made in advance, meaning patients can be significantly out of pocket while they wait for a refund. For a lot of people, that is not feasible. What is more, the scheme can be burdensome to access. I know that when someone receives the shock news about a loved one and is dealing with that, the last thing they want is to be burdened with forms and the complexity of going through a time-consuming process.”
“That means that too many patients are falling through the gaps, without the support they need for their recovery. I appeal to the Government to offer targeted support to this group as a matter of urgency. First, I ask that the warm home discount scheme be extended to all stem cell transplant and CAR-T therapy recipients. Given that 60% of patients struggle to afford to heat their homes to stay warm, £150 off energy bills across the winter would undoubtedly be a potential lifeline for many households. In the long term, it is important that the Government look at how to secure our energy security. That needs to stay a priority and not drop down the list in years to come, so we do not face such a situation again.”
“What should Government do to help patients and their families who are especially impacted by the cost of living crisis? The Chancellor introduced some measures in response to the cost of living crisis, but more than half of patients said that the financial support they received has not covered the extra costs they faced “at all”. I am sure that the Minister will refer to the energy price guarantee as a key source of support. I certainly welcome that intervention from the Government but, unfortunately, it has not gone far enough to meet the rapidly increasing need among stem cell transplant patients for financial support with their energy bills. Likewise, many stem cell transplant patients are not eligible for the time-limited disability cost of living payments.”
“To reiterate, patients who might otherwise die without a stem cell transplant are seriously considering whether they can simply afford to receive that treatment. No one should have to choose between heating, eating and treatment. It is not just about the cost of living; it is as serious as the cost of survival. Anthony Nolan has been overwhelmed by the rise in demand for financial assistance. Calls from patients to its helpline about money worries have surged more than 350% in just one year. It launched an emergency appeal to provide a dedicated cost of living fund to help ease worry about household bills going through the roof but, unfortunately, it could help fewer than 200 patients. Ultimately, it should not be for charities—or, often, the generosity of the British public—to plug the gap.”
“Social workers up and down the country are supporting transplant patients in increasingly acute situations. The charity, Anthony Nolan, states that the crisis is the worst it has seen in 30 years. At last month’s meeting of the APPG we heard from Cheryl Bell, who is an incredible social worker based in Newcastle who specialises in supporting stem cell transplant patients. Cheryl told us that suicides among stem cell transplant patients are “going through the roof”. The consequences of the cost of living crisis for stem cell transplant patients are marked and severe. Some 94% of patients report that their physical health is negatively impacted by the crisis. As has been said, some patients even consider postponing a lifesaving stem cell transplant because they are worried that they cannot afford to be out of work.”
“One carer whose daughter had two stem cell transplants described how she had cut back on costs, so much so that she now walks 12 miles a day to take her children to school. In her own words: “The rising cost of living has crucified me”. Almost half of patients struggle to afford travel to and from hospital appointments. As my hon. Friend the Member for Coventry North East (Colleen Fletcher) said, shockingly, some patients have reported going without food and avoiding putting the heating on to pay for that journey. One patient paid for 280 miles of fuel for a round trip, and another reported a £140 cost of a taxi ride. It is particularly striking that half did not struggle to afford such things before the current cost of living crisis.”
“Our costs have massively increased, while our income has drastically fallen.” This is not a one-off case. This is a common theme that comes up time and again. Anthony Nolan is regularly hearing from patients who are struggling to afford even the basics, and the situation is getting extremely desperate. Sixty per cent of respondents told the charity that they have struggled in the past year to afford to heat their homes to stay warm, with some patients experiencing such severe damp in their homes that they have had to resort to sleeping in their cars. Almost half have struggled to purchase good food and, consequently, patients are increasingly turning to food banks, and clinicians are seeing higher rates of infection and even malnourishment.”
“That is significantly lower than the national average of more than £32,000. To try to manage the astronomical rise in costs, more than 40% of patients have borrowed money, taken on debts, had to move, or refinance their homes. We know what the mortgage market is doing at the moment, and that is an extra worry—an extra burden—for people who are effectively being forced into this situation. We even hear reports of people turning to loan sharks to try to fill the gap in their income. Anthony Nolan found that 70% of patients had considered returning to work earlier than advised due to financial concerns. A carer whose child is undergoing a transplant said: “We now rely on food banks and friends. We cannot use the car other than for hospital visits.”
“Clearly, undergoing a stem cell transplant can cause a dramatic reduction in household income, and, compounding that, the cost of living crisis is having a disproportionate effect on patients and their families. The massive rise in inflation has driven up the cost of heating homes, buying food, travelling to and from hospital and paying for hospital parking—that is if people can even find a parking space in the first place. A recent survey by the charity, Anthony Nolan, gives us an indication of the extent of the financial impact of stem cell transplantation on patients and families. Seventy per cent of transplant patients or carers feel that they must either reduce their working hours or, in some cases, give up work altogether. Almost 40% of households earn less than £20,000 a year after a transplant.”
“Others may have to rely on statutory sick pay, but that can only be claimed for up to 26 weeks, and recovery often takes longer. Not all companies have the greatest sick pay scheme, and even then it is only a safety net for a period of time. Some patients feel that they will be forced back to work much sooner than they should be. Even when an employer is understanding to begin with, the pressure starts to build after six or 12 months. It is not only the employer who is affected. Perhaps that employer has to get somebody else in, or the issue starts to cause problems with the rest of the workforce. Even if the employer is very understanding, there is only a period of time that they can bear the cost. We need to support people in that position.”