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.”
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“Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”.”
“In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor. Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.”
“I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse. Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money. One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time.”
“Yes, I do. This is to do with how we assess the cost of treatment. I fully accept that the up-front cost of the transplant is a lot of money, but if that works the longer-term cost is not so great. However, we seem willing and able to fund drugs that might not cure people or extend their lives by very much, although the cost of them, when added up, might be more than the transplant. It is not right that we are saying to these people, “No, we’re not going to fund a second transplant”. Sasha’s case is not unique, and there will be many more like hers if we do not change our position. Will the Minister please respond directly regarding Sasha’s case and those of others in the same situation? In the months and years ahead, there will be other people in this situation, and their voices need to be heard.”
“I close by urging the Minister, and indeed the whole House, to remember the patients caught up in all this—not just those who are waiting for a second stem cell transplant today, but the countless individuals who will be left without the chance of a second stem cell transplant in future, and therefore will be left without their last hope of a cure. I hope that the Minister will not wash her hands of the problem—I am sure she will not—and will instead fully accept that her Department has to play a key role in this, to make sure that action is taken to ensure that every patient who needs a second stem cell transplant can access one. The lives of people like Sasha and Emma depend on it.”
“Emma said: “I always assumed that if there was one treatment that could save my life, I would be offered it without question, and the biggest barrier to having my second transplant would be to find another donor—not having to fight the NHS to get it funded...I thought, ‘I’m a 28 year old woman, and a panel of people will decide whether I get to live or die’”. Does the Minister agree that the individual funding request route will never be successful for all the patients who need a second stem cell transplant, and that even for those for whom it is successful, it is an incredibly tortuous route?”
“Emma was left waiting in the dark for four months, and her doctors had to fight her corner. During that time she was very unwell with infections, and her consultant decided to gamble and start her chemotherapy in preparation for a second stem cell transplant early, fearing that she would die if it did not start then. Although Emma eventually heard from her doctor the good news that the request had been successful, she did not receive her second stem cell transplant until January 2016, some six months after she had relapsed.”
“I suspect that the Minister may say that, despite NHS England’s decision not to routinely commission second stem cell transplants, patients will be able to access the potentially life-saving treatment that they need by taking the individual funding request route. However, patients and their doctors know that, in reality, the chances of success through that route are very slim indeed. In November 2016, the all-party parliamentary group on stem cell transplantation had the pleasure of meeting Emma Paine. Emma was diagnosed with a blood disorder called severe aplastic anaemia in 2005. After her first transplant she relapsed, and, as with Sasha, her doctors recommended a second stem cell transplant. They tried to organise that via the individual funding request route, which meant that Emma had to prove that she was an exceptional case.”
“It consists of a single bullet point retrospectively added to the bottom of a press release under the heading “Further information”. Does the Minister agree that that is unacceptable, and that far more needs to be done to ensure that decisions that could cost patients their lives are shared in a sensitive and caring manner, rather than merely being added as some sort of footnote? With all that in mind, let me now ask the Minster the most important question. Does she accept that her Department must do more to hold NHS England to account, and will she agree to take steps to ensure that every patient who needs a second stem cell transplant has access to one?”
“Secondly, NHS England has not been remotely transparent in its decision making. All it has said is that second stem cell transplants are “not currently affordable and will not be routinely commissioned at this time”. That tells us nothing about how NHS England reached its decision. Neither the minutes of the Clinical Priorities Advisory Group nor those of the Specialised Services Commissioning Committee are publicly available. The Government agreed with the Public Accounts Committee when it said that NHS England’s decision making in relation to specialised services should be far more transparent. Will the Minister please ensure that the minutes of those two groups are published on NHS England’s website in future? Thirdly, the way in which NHS England’s decision has been communicated to patients has been shocking.”
“It has also ignored the potential to offset much of the cost of a second stem cell transplant, as was pointed out earlier, owing to the cost of alternative treatments. In its own impact assessment, NHS England acknowledged that the mortality rate among patients who were given alternative treatments “was extremely high”, and that, while the costs of such treatments were always “difficult to quantify” and varied according to patients’ circumstances, there was “considerable scope” to offset some of the costs of transplants if the costs incurred over a patient’s lifetime were taken into account. Moreover, a patient who had had a successful transplant was far more likely to return to, or join, the workforce, and pay back some of the costs. It is important to factor that in.”
“I therefore urge the Minister and her Department to intervene to ensure that every patient who needs a second transplant can access one. As I said, we are not talking about huge numbers, but for the small number of people who are affected, this is their only chance. I do not wish to pre-empt the Minister’s remarks, but I suspect that she may highlight that this was a decision taken by NHS England, not the Government. However, the Department of Health is ultimately responsible for the treatment that patients receive, and in the case of second stem cell transplants, access to that treatment has been denied. I want to make three important points. First, as I have explained, second stem cell transplants are supported by the evidence. The treatment is standard practice in many countries, yet NHS England seems to have ignored that completely.”
“When NHS England originally announced its decision not to fund second stem cell transplants in July 2016, it caused outrage among patients and their families. More than 6,500 people wrote to their MPs and 18,000 signed a letter to the Secretary of State for Health in a bid to get the decision changed. In addition, 30 leading clinicians wrote to the editor of The Times saying: “NHS England is ignoring the advice of the clinical community, thereby effectively handing most of these patients a death sentence”. They were all ignored. As we know, NHS England confirmed its decision in December 2016. On a positive note, the good news is that there is a chance to make things right. NHS England will look again at what it funds in the spring.”
“Over the past few weeks, we have been told about the enormous pressures that the NHS is under during this winter crisis, with hospitals on black alert across the country, A&E waiting times being missed and cancer patients having their operations cancelled. Treatments such as second stem cell transplants are being rationed. I accept that the NHS is underfunded—perhaps it always will be, as I accept that it is always possible to spend more money—but we are now reaching a crisis. We really need to start to be honest and address issues such as social care. Until we do that and we are honest with everyone, we will not sort out the funding situation for the NHS. I am not making political points; I just want to say that we need to stand up for patients such as Sasha whose lives—it really is their lives—are at risk.”
“I certainly agree with my hon. Friend. From personal experience, I know that that is always a fear. Every time someone goes for a check-up on their blood, there is obviously a feeling at the back of their mind, “Let’s hope that everything’s okay.” It is a very rocky road. I am sure that the whole House will wish Sasha well as she continues her journey. I pay tribute to my hon. Friend the Member for Erith and Thamesmead (Teresa Pearce), who has been working tirelessly to support Sasha and her family at this incredibly difficult time. The Department of Health must accept responsibility in this case and others.”
“I am sure that, like me, the hon. Gentleman finds it hard to think of any other recurring illness for which people who had relapsed would be told, “I’m sorry, you’ve had your one chance. That’s it.””
“Does the Minister accept that, for a whole host of illnesses, we fund, probably rightly so, drugs that may cost vast sums for people for whom the prognosis is that their lives might be extended by weeks, whereas we are now discussing not only extending people’s lives for years but potentially enabling them to live a full life over which they could pay back some of the cost of the treatment?”
“I thank the Minister for giving way; she is being very generous. She has touched on a key point there, and it is something that I have raised with her before. We are rightly prepared to spend a large sum of money on treatment to give people the transplant they need. As she says, it is a very difficult process for the patient. Afterwards, there is virtually no support for that patient and for their mental health. They may have a lot of questions and a host of issues—a child, for example, may want to know why it has happened to them and why they look different—yet they really have to search for support. The support should be part and parcel of the whole package, rather than something that is applied as some sort of add-on.”
“There will be those who will argue, “Well, the law has moved on so there’s no point in doing that,” but the symbolism of sweeping it away is so important.”
“My hon. Friend has painted a moving picture. Does she agree that we sometimes think these kinds of events stopped at the end of the war, but there were dreadful pogroms after the war as well, and that should not be forgotten?”
“Before my hon. Friend moves off this point—Airbus is probably the best example. If a wing is not finished, the workers will follow the wing, whether to Bremen or France, to make sure that that is done. Are we really saying that they will have to fill out forms, do all sorts of things and wait God knows how many weeks for that to happen? The problem is that we live in a very uncertain climate at the moment.”
“The focus is often on the big primes—my constituency has Airbus and Toyota—but I am particularly worried about the supply chain, especially if it supplies other parts of a business in Europe. In that case, companies might think that they are better placed there and relocate there, which would cause massive harm to all our areas.”
“My hon. Friend makes an important point. For Airbus, for example, if a wing is not fully finished in Broughton but needs to be fitted in Toulouse or Bremen, they will send workers, chase the wing and carry on the work that needs to be done. We clearly must not be in a position where they will have to apply for some sort of work permit to do that—that would be ludicrous—but we just do not know what is going to happen.”
“Does my right hon. Friend agree that we have to educate people and make them aware of what can happen, particularly given the rising obesity levels?”
“As a parent who went through this when my son was nine, I know that the news is devastating for parents. What happens to the family around the child and the level of support that is provided are also important. I was an MP at the time, with a good salary, but a lot of people do not have that level of income, or perhaps they do not have other family members to come round. We really need to put in extra support, and not months afterwards but straight away, when parents actually get that news.”
“Does the hon. Gentleman agree that it is not only the physical side of the illness that we must address, but what happens to children if they get through their illness—hopefully they do—including all the questions they will have, such as “Why has this happened to me?” and “Why do I look different?”, their reintegration into school and their anger? We might put a lot of money into addressing the illness itself, but we put very little into looking after the child afterwards. It is no accident that children who have had cancer have a higher suicide rate than those who have not.”
“Sorry for talking about my experience again, but my son was very fortunate to find a donor. He had a stem cell transplant in the end. As a parent, that was great for us, but we were with other parents who were not so fortunate and who saw their children pass away because they could not find a donor. The awful thing is that there are people out there who would be a match, but they do not know it. I want to put on the record my support for Anthony Nolan and other charities that have saved so many lives. We really do need to do more. Stem cell transplants offer a great opportunity for not only treating cancer, but other things as well in the longer term. I simply want to put on the record how important it is that that very important work carries on and that we do not have the situation in which some are fortunate and some are not.”
“As my hon. Friend is making clear, we have to have specialist centres, but we must not think that we can have them on our doorstep everywhere. That will just not happen, and it would not make sense for it to happen. If we have specialist centres, however, people will have to travel, and families need support and somewhere to stay. I put on record my support for the Ronald McDonald House Charities, which do incredible work providing parents with somewhere to stay. The actual cost burden on parents alone for what can be long treatment periods is astronomical, and a lot of people simply do not have the money.”
“Does the Secretary of State accept, though, that, regardless of whether an item is legal or not, if a country falls into a war situation, suspicion will fall on every item of property that would previously have been dealt with perfectly legally?”
“Does my hon. Friend agree that, in some cases, children have to become badly ill before the problem is addressed? The problem should be addressed in the first place so that they do not get into that state.”
“The petitioners therefore request that the House of Commons urges the Government to make fair transitional arrangements for all women born in the 1950s (on or after 6 April 1951) who have unfairly borne the burden of the increase to the State Pension Age. And the Petitioners remain, etc. [P001966]”
“The petition states: The petition of residents of Alyn and Deeside, Declares that as a result of the way in which the 1995 Pension Act and the 2011 Pension Act were implemented, women born in the 1950s (on or after 6 April 1951) have unfairly borne the burden of the increase to the State Pension Age; further that hundreds of thousands of women have had significant changes imposed on them with little or no personal notice; further that implementation took place faster than promised; further that this gave no time to make alternative pension plans; and further that retirement plans have been shattered with devastating consequences.”
“The petition relates to implementation of the 1995 and 2011 Pensions Acts and the WASPI—Women Against State Pension Inequality—Campaign. I want to place on record my thanks to Caron Fahy, Lynne Dorm, Rosemarie Phoenix, Janet Shefras, Julia Clay and Anne Tapp for collecting nearly 400 signatures in Alyn and Deeside.”
“While we support the Bill, does my right hon. Friend agree that the danger is that we might drive even more business to the overseas territories and encourage even more of the problems that have already been identified?”
“My hon. Friend will know—I am sure that we all know this—that there is a difference between the list price that is advertised and the price that the NHS actually pays. That is a very important point, and we have to be very careful that, in gaining all this information, we do actually bring down the cost for the NHS. Those companies may well charge other people higher amounts, and we need to put that in context.”
“Does my hon. Friend agree that we have to be careful not to discourage drug companies from doing research, particularly into those rarer illnesses, because they would not see a financial return?”
“Does the hon. Gentleman agree that Governments have tended to intervene when a sector is failing, but they have failed to support a successful sector because we in this country step back and say, “Why should we support it? It’s doing fine on its own.”? Is that not one of the big problems that we have faced for many years?”
“Is the hon. Gentleman as worried as I am about the number of people who respond to communications? He mentioned the lottery. Once people have responded to one communication, they will receive many more. I heard of one person who received up to 10 or 20 a day. Moreover, the communications are coming from abroad, which means that they cannot be intercepted and stopped. It is causing a great deal of heartache to very vulnerable people.”
“I apologise for not being here at the start of the debate. A number of people have spoken to me, saying that they just do not feel welcome any more. It is difficult to get that across and to change attitudes. I have spoken to a vast range of people, many of whom are investing and creating jobs in the country, and if they do not feel that they have a future in the country, they will leave and go somewhere else, and we will lose those jobs.”
“My hon. Friend mentioned the 53 licences. Many people worked those beds for years, as did their fathers and grandfathers before them, and were not given licences, unlike many others who had not worked the beds before.”
“I apologise for not being here at the start of the debate. My hon. Friend talked about pensioners. Shotton steelworks is in my constituency, and there are a lot of pensioners because the steelworks used to be far bigger. Many still live in the area, so the change in spending power over time will affect not only them but the whole area. We have to think about that as well.”
“For many of the companies involved, the investment lead-in times are quite long, resulting in a very uncertain environment in which to work. That is leading to some of them pulling out of the UK altogether.”
“Has the right hon. Gentleman seen the warnings from Airbus about the threats to future investment in this country? I am talking about more than 6,000 jobs in Alyn and Deeside and 5,000 jobs in Bristol. Does he agree that the Brexit camp think that those are jobs that we can afford to lose?”
“The Minister is talking about extra powers and what is transferring across. What is he doing to help to get that information across to the people of Wales? Even under the current settlement, there is still a lot of misunderstanding as to who is responsible for what.”
“The hon. Gentleman makes important points, but we should not forget that an estimated 7 million people are not even on the register in the first place. We should not lose sight of that, or of what we need to do to get those people to register.”
“Does the hon. Lady agree that many such carers are hidden and scared of coming forward to seek help? They are worried that they might end up in care themselves because their parents, or their parent, are unable to look after them.”
“While those boons are obviously welcome, I am worried that we see it in the press that somehow everything is okay now. It is not. There is still a great deal of worry out there. I am particularly concerned about people who are leaving the industry to get jobs elsewhere because they do not see security for them and their families.”
“While a lot of us have worries about what is going on in betting shops, does the hon. Gentleman agree that we do not know enough about the people who gamble at home on their phones and on the internet? There is no control over that at all, and they are being equally affected.”
“Yesterday, the Business Secretary said we need to work together, cross-party, on this, and the Secretary of State for Wales has just said the same. I understand that he is to visit Shotton on Monday—when was he intending to tell me?”
“Will the hon. Gentleman clarify something? He seemed to be saying that less intelligent people should not be allowed to have mortgages. Is that what he was saying?”