Contaminated Blood

Mark Tami Excerpts

Tuesday 11th July 2017 Commons Chamber

[Diana Johnson]

Absolutely. The right hon. and learned Gentleman makes a good point and I will come on to that.

I do not need to remind the House of the damage that public disasters do to all those who are affected, as we know from the Hillsborough tragedy in 1989 and, more recently, the appalling fire at Grenfell Tower. Every public disaster of this kind is different: their causes differ; the victims suffer in different ways; and the measures necessary to support those affected, and their families, also differ. However, every victim has a fundamental right to one thing: answers. They deserve to be told what went wrong, why it went wrong, and who is responsible for what happened. The story of the injustice they have suffered needs to be set out and told to the wider public. Their voices need to be heard. Apologies, compensation and other forms of support are essential, but if their right to answers is not also satisfied, they will be denied true and meaningful justice.

[Mark Tami (Alyn and Deeside) (Lab)]

My hon. Friend is making a powerful case, and I thank her for all her work. As she said at the beginning, many, many victims have died. Their families are still here and are still grieving, and they need answers as much as the victims.

[Diana Johnson]

My hon. Friend is absolutely right. This tragedy has taken the life of more than 2,400 people with haemophilia, infected mainly through blood factor concentrates. Many others, without bleeding disorders, infected through blood transfusions and other means have also lost their lives. Thousands more have been left devastated. The survivors have been left to live with a combination of HIV, hepatitis C and a range of other viruses.

My constituent Glen Wilkinson is one such individual. He has haemophilia and was infected with hepatitis C when he was just 19 during a routine tooth operation. Glen is one of thousands of people who have fallen victim to the worst treatment disaster in the history of our NHS, and one of the worst peacetime disasters ever to take place in this country. Indeed, each of the 15 or so non-terrorist related public disasters I have looked at—ranging from the Bradford City stadium fire in 1985 to the Clapham Junction crash in 1988, the Marchioness disaster and, of course, Hillsborough—was a tragic event, and I do not wish to detract from the magnitude of those events, but the House should note that all those disasters led to a public inquiry.

Hon. Members and their affected constituents are entitled to ask why the same has not happened with contaminated blood. Had more than 2,400 people died over the course of one day or one year, it would be inconceivable for any Government to refuse calls for a public inquiry, yet the devastation caused by the contaminated blood scandal has been spread not over days or years but over several decades.

We must also bear in mind the profound effect this scandal has had on one community, those with bleeding disorders, many of whom were provided with contaminated blood factor concentrates sourced from profit-making American firms. Virtually everyone who had haemophilia at the time has been infected.

Hon. Members will appreciate that the impact can be devastating when friends and close-knit communities are hit by a collective tragedy. Consider, for example, the Treloar school for disabled children, a special school with a large number of pupils with haemophilia: 72 of its pupils have died because of this scandal. Many were forced to be silent to the suffering, either for fear of the stigma of having HIV, hepatitis C or other viruses, or because they were not even aware that they had those conditions. Important though that distinction is, it does not excuse the fact that successive Governments of all colours have sidestepped the issue for too long.

Internationally, an investigation saw the imprisonment of the former head of France’s blood transfusion service and his deputy, and a former French Health Minister was found guilty of manslaughter. In Japan, three company executives were imprisoned and an official was convicted on negligence charges. In the United States, the private companies involved in this tragedy paid out millions in out-of-court settlements across the world.

But nothing of that kind has happened in the UK. In 1991, in response to the threat of court cases, the Government set up an ex gratia payments scheme. There was no implication of liability, no use of the word “compensation” and waivers renouncing the individual’s right to the take further legal action had to be signed before they could obtain small sums of money.

Contaminated Blood

Mark Tami Excerpts

Tuesday 25th April 2017 Commons Chamber

[Sir Peter Bottomley (Worthing West) (Con)]

May I speak briefly in this debate? The right hon. Member for Leigh (Andy Burnham) has helped, and the Minister has rightly said that she will consider what he has said and the papers he might be able to provide. May I add that there are still victims who have unmet costs; I have one in my constituency whom I am concerned about? May I suggest that over the election period ministerial advisers pay attention to the comparisons with Hillsborough, and say that it is not just the Government-held papers that matter, but also the ones held in the health service? So, for example, if someone who has died had been told he drank too much when he did not drink seriously at all, that could be part of the evidence that comes into an inquiry.

[Mark Tami (Alyn and Deeside) (Lab)]

There people are dying, yet this goes on and on. People want closure; they know they are coming to the end of their lives, and that they will not get that closure.

Stem Cell Transplants

Mark Tami Excerpts

Tuesday 24th January 2017 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

It is a pleasure to rise at 6.33 pm. When I secured an Adjournment debate several years ago, I expected it to start at 7 o’clock, but I seem to recall that I got up to speak at 11.15 pm. Those were the days when we could debate European documents until any hour.

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

History could well repeat itself.

[Mark Tami]

I hope that it will not do so tonight, Mr Deputy Speaker.

I declare an interest as co-chair of the all-party group on stem cell transplantation. I am very pleased to see my co-chair, the hon. Member for Enfield, Southgate (Mr Burrowes), in the Chamber; I am sure he will make some comments later. May I also put it on record that my oldest son received a life-saving stem cell transplant a number of years ago?

A stem cell transplant offers a last chance of life to people with a blood cancer or blood disorder. It works because stem cells have an incredible ability to replace damaged blood cells. This remarkable treatment has great potential in our healthcare system. There are different types of stem cell transplant. Some involve people taking back their own cells, while others involve cells from a donor, who can be a relative. Tonight I will talk about stem cell transplants that come from a donor.

About 2,000 people in the UK need such a transplant each year. Two thirds of them will not find a matching donor in their family and will therefore require an unrelated donor. In that regard, I pay tribute to Anthony Nolan trust, which provides patients with matching donors from its stem cell donor register. As well as sourcing transplants, it supports patients and, importantly, their families through the transplant journey and advocates on their behalf. Last year, Anthony Nolan helped to find a match for more than 1,200 people with a blood cancer or blood disorder. I know that the House will join me in thanking the selfless stem cell donors who made that possible, and all those who have joined the stem cell donor register and might donate in the future, of whom there are more than 600,000.

Sadly, one in eight people does not receive the life-saving transplant they need because there is no donor available or a donor cannot be found quickly enough. The odds drop dramatically for patients from a black, Asian or ethnic minority background. Anthony Nolan is working hard not only to build but to diversify its stem cell donor register to ensure that it is able to provide people with the best match. After a lot of work, the situation is much better than it was a number of years ago, but it is still shocking that the chance of finding a donor is so much slimmer for people from a BAME background than for white people. I am sure that the Minister will show her support for efforts in that area.

Despite the fact that stem cell transplants are a well-established treatment, the huge financial pressures on the NHS are causing problems for patients. The situation is most serious for those who need a second stem cell transplant. Sometimes, after having a first transplant, a patient’s blood cancer or blood disorder will come back or relapse. That is devastating news in itself. For about 20 patients a year, the clinician will recommend a second stem cell transplant as their best, and often only, chance of life.

It is worth emphasising that this is not some unknown, experimental treatment that people are simply taking a punt on. We know that one in three patients who receives a second stem cell transplant will reach the milestone of five-year survival, and the results for children are even better, as seven in 10 will reach that milestone. We know that the medical profession recommends the treatment, which is routinely available in other parts of the UK, as well as in countries across Europe and the United States. We also know that the treatment used to be available in England before 2013 and that many people are alive today, leading active lives with their families, because they received a second stem cell transplant.

[Maria Caulfield (Lewes) (Con)]

I thank the hon. Gentleman for raising this important issue. In my time as a nurse, I have looked after patients who have had a stem cell transplant. My haematology colleagues would agree with his statement that between 20% and 40% of patients who have a second stem cell transplant can be cured. The treatment is indeed offered in many parts of Europe and in the US, so it is shameful that it is not offered here.

[Mark Tami]

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. 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.

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”. She says:

“In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being here on the dot for the start of the debate. The hon. Gentleman is outlining the case for second transplants. Does he agree with the analysis from Anthony Nolan that shows that the cost of caring for someone who is refused a transplant is upwards of £130,000, while a transplant would cost only £120,000 and might save a life and prevent devastation being caused to a family? Does he agree that there is a financial as well as a moral incentive?

[Mark Tami]

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.

[Colleen Fletcher (Coventry North East) (Lab)]

I declare an interest in that my husband had a successful stem cell transplant in 2014. Does my hon. Friend agree that for patients with blood cancer, the fear of relapse causes great anxiety? Patients speak of a common feeling of dread when they go to collect routine blood results—that certainly resonates with me. Following NHS England’s decision, the thousands of patients who have received a first stem cell transplant now have the added fear that if the worst happens and they relapse, the NHS will not provide them with the treatment that would save their lives. I hope my hon. Friend and the Minister will acknowledge that this decision affects not only the 20 desperately ill patients a year who need a second transplant to survive, but the many thousands who live in fear of relapse every day.

[Mark Tami]

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. 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.

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. 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. 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.

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 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?

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.

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.

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?

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.

--- Later in debate ---

[Mr Burrowes]

We are talking about the 16 to 20 people a year for whom the clinical recommendation is that they have a second transplant. NHS England made a decision on this in December 2016. We have talked about percentages for black and minority ethnic groups, and the case has rightly been made that it is a scandal that people from other backgrounds are more able to get a match. It is also a scandal that, for the people who have been told of the awful decision that they will not get a second transplant, it is not a question of their having a 60% or 40% chance, because they will have no chance at all.

[Mark Tami]

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.”

[Mr Burrowes]

The point I am trying to make is that everyone has been on a journey of discovery and understanding in relation to the development of the life-saving potential of stem cell transplants. This is all part of a partnership involving collection, more effective transportation, research and clinical networks. We all recognise that, in this complex world, there is a risk of relapse, so the journey of treatment is a continuing one. Once someone is having treatment, they are part of that journey, and the hon. Gentleman is right to say that they should not simply be cut off and told that they have had their go.

We know of many other patients with a chronic illness who go back to their doctor or to hospital because they have had a relapse. We have to recognise that that happens in this field, where we are getting better quality outcomes. There is still an issue of resistance, however, which needs extra research and clinical expertise. When a clinician says that a transplant is the only option available to that small number of patients, and when we are investing so much in ensuring that there is greater access nationally to treatments for blood disorders and blood cancers, it makes no sense to cut those people off and give them no further opportunity for treatment.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)]

I congratulate the hon. Member for Alyn and Deeside (Mark Tami) on securing this important debate and on his moving contribution. I also thank his co-chair, my hon. Friend the Member for Enfield, Southgate (Mr Burrowes), for his contribution, which was characteristically informed. I join them in thanking the all-party parliamentary group on stem cell transplantation and the Anthony Nolan trust for all their hard work and advocacy in this field on behalf of patients and their families. I particularly want to thank all those who have allowed their personal stories to be shared in the Chamber tonight. They are a powerful reminder of why we are all here. Their importance cannot be overstated.

As the hon. Gentleman said, stem cell transplants promise a life-saving cure for many patients, but the key is finding a suitable matching donor. While many patients are able to find suitably matched family members, for more than 1,000 patients a year, that is not possible and they have to rely on the generosity of others. I am sure that the whole House will want to join the hon. Gentleman in paying tribute to the more than 800 people in the UK this year who donated their stem cells.

I will go on to speak about improving patient care and the importance of research, as my hon. Friend mentioned, but both my colleagues raised commissioning as a particular concern, so I shall start there.

Over the past few months, there have been particular concerns raised regarding the commissioning by the NHS of second stem cell transplants for patients with relapsed disease. I recently had the chance to visit Anthony Nolan’s research labs at the Royal Free, where I was introduced to Emma Paine. Emma is alive today, as the hon. Gentleman said, thanks to a second stem cell transplant. She looks extraordinarily well and she is a powerful advocate for the cause. She spoke to me with extraordinary eloquence about the difficulties of the commissioning process, so I am in no doubt about the importance of the issue.

Decisions regarding prioritising specialised commissioning are always going to be difficult, which is why I believe that they are rightly a clinically led operational matter for NHS England, as the hon. Gentleman anticipated I would say. Knowing that I was coming here tonight, I asked for an update from NHS England. Contrary to some reporting on the issue, NHS England has not withdrawn the provision of second transplants. Second transplants have been, and remain, routinely commissioned for patients where the grafting process has failed, but NHS England has recently reviewed a proposal, alongside all the other priorities that were put forward, to begin routinely commissioning second transplants for patients with relapsed disease, for the first time since it was established in 2013. That would have replaced the current case-by-case provision of those transplants.

To prioritise funding for specialised services, as colleagues will know, NHS England has an established mechanism to evaluate proposals for new areas of investment. This reviews proposals on the basis of their clinical benefit and cost, as colleagues have discussed. The clinical benefit is based on the latest published clinical evidence.

As the hon. Gentleman said, that proposal was not approved. NHS England explained to me that its decision not to recommend routine commissioning of second transplants was based on the associated cost of the treatment, which the hon. Member for Strangford (Jim Shannon) mentioned, and the clinical evidence that suggests that less than one third of patients with relapsed disease survive more than five years after the second transplant. However, as I think colleagues mentioned, there is also evidence to suggest that, in that area, clinical practice is ahead of published evidence. For that reason, work is ongoing to ensure that the evidence base is updated before the decision is next reviewed.

Prioritisation decisions are kept under review in the light of new evidence and NHS England tells me that proposals for second transplants will be reviewed again later this year. Until the completion of any review, as the hon. Member for Alyn and Deeside said, clinicians can continue to apply for funding for second transplants for relapsed disease where NHS England assesses that the patient is clinically exceptional or has a clinically critical need, although I accept what colleagues have said about how difficult that process can be.

I shall certainly put to my colleague, the Minister of State, Department of Health, the point raised by the hon. Member for Alyn and Deeside about the transparency of decision making and the sensitivity in communicating that decision. I shall ask that my hon. Friend take it up with NHS England.

[Mark Tami]

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?

[Nicola Blackwood]

As a politician, I do not feel I am qualified to make the judgment about the different clinical priorities, which is exactly why that decision is supposed to be made by clinicians. We are, though, hearing that there is a difference between the published evidence that is going forward to the board for decision making and that at the coalface. That is what needs to be rectified before the decision is made. We are working hard to try to ensure that that happens so that patients such as Sasha, Emily and others have the best possible chance.

It is precisely because of the extreme stress and the fear of relapse that the hon. Member for Coventry North East (Colleen Fletcher) identified—the hon. Gentleman agreed with her—that in the meantime we are trying to focus our efforts on improving patient care and driving forward research, so that we can improve the outcomes of first stem cell transplants and explore all possible treatments and therapies for these very hard-to-treat conditions. That is why the Department of Health has not washed its hands of stem cell treatments. We have provided more than £19 million to our delivery partners, NHS Blood and Transplant and Anthony Nolan, since 2010, and a further £2.5 million this year.

Support from the Department is shaped by expert advice from the clinical community and has led to a number of tangible improvements that mean that patients are now significantly more likely to find a matched donor. Better matching of donor and recipient means that the stem cell transplants are much more likely to work the first time, which is a better outcome for the patient anyway. We have also supported the creation of a unified donor registry, which, combined with advances in tissue-typing, means that the time taken to identify a suitable donor has been significantly reduced. As many colleagues have said, patients in need of a stem cell transplant are often very ill and do not have time to waste, so that progress is very important.

Despite significant improvements in the chances of finding a suitable donor, there remains a global shortage of donors for patients from minority groups, which is unacceptable. That is why we are continuing to support the expansion of the cord stem cell bank. Stem cells from umbilical cords tolerate minor mismatches in tissue type, so are disproportionately used to treat patients from minority groups, for whom finding an exactly matched donor may be impossible. We are trying to combine that with the targeted recruitment of adult donors from under-represented communities. The chances of patients from minority groups continue to improve, but we recognise that there is still more to be done and are working closely with charities and hospitals to try to ensure that that happens.

Recent high-profile donor search campaigns, such as Match4Lara, have done a lot to help to raise awareness of the particular challenges that some patients face in finding a donor. Through that and other campaigns, Anthony Nolan has demonstrated the value of using social media to reach young people in all sections of the community. Overall, it is estimated that investment by the Department and the work of delivery partners such as Anthony Nolan means that, compared with 2010, more than 130 additional lives are being saved each year. We are making progress, but there is no complacency, and we recognise that more needs to be done.

[Nicola Blackwood]

My hon. Friend will have heard my answer on that. We are trying to address that as we go through the commissioning process by ensuring that the best possible evidence is there and that it is the most up-to-date clinical evidence, so that, through what has to be a robust prioritisation process, the second stem cell transplantation for relapse has the best possible chance. I also think that it is important that we address the other areas of stem cell transplantation to ensure that patients have the most improved outcomes at, for example, first transplant level, so that the research is available to feed through into that prioritisation process, and also so that patients have the best possible experience going through the process.

Finding a suitable donor is only the start of a long recovery process for patients, as Emma said very clearly to me. The report from the independent Cancer Taskforce, with which hon. Members are familiar, identified a number of ways in which people living with and beyond cancer could and should be better supported. In the case of patients receiving stem cell transplants, NHS England has set out the pathway in its service specifications. It is widely recognised that patients receiving a stem cell transplant often experience severe psychological and emotional stress. The aggressive nature of the treatment and the need for prolonged hospital stays mean that the psychological impact on patients can be particularly severe.

Transplant centres recognise that the long-term management of these effects is an important aspect of the transplantation process. It is important that we stay by those patients for the long term, as has been mentioned. There is also an urgent need to improve the clinical outcomes of stem cell transplants and to track those outcomes so that we have the evidence to present. The planned impact project is an important aspect in addressing the development of the best possible clinical practice. This network, supported by the charities, Anthony Nolan and Leuka, will complement the existing National Institute for Health Research clinical trials network. It aims to recruit 20% of stem transplantation patients into clinical trials. We believe that it is only through further research supported by clinical trials that the survival rates for these transplants can be improved.

During my recent visit to the Anthony Nolan laboratories, I was particularly impressed to see that they are involved in applying the latest genomics technology to improve the matching of donors and recipients. It is a clear example of how we are directly improving care and access through our research and through the 100,000 Genomes Project.

[Mark Tami]

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.

[Nicola Blackwood]

The hon. Gentleman is absolutely right. It is very important that we look at the whole child as well as the psychological impacts of long-term illness—whether it is a cancer or any other kind of long-term illness. He will know that we are developing a Green Paper for children’s mental health, and I do intend, and hope, to be addressing the ways in which we can look at not only the broad spectrum of children’s mental health, but those who have particular challenges that they need to overcome. He has raised the matter with me before. I gave him a commitment that I would follow through on it, and I reassert that commitment tonight.

The way in which we are working on this, which is to build up the research to improve patient care and to ensure that we are allowing the NHS to deliver world-leading therapies based on genetic information, is essential to ensuring that every patient receives the appropriate treatment. That is what colleagues say they want to happen. It also highlights the importance of having the right infrastructure in place throughout the NHS, because if we do not have that, we will not be able to provide the best support.

That is why we announced in September an £816 million investment for biomedical research centres over the next five years. We also specifically support translational research into stem cell transplantation through the stem cell and immunotherapy research unit—one of four NIHR blood and transplant research units, each of which is a partnership between a university and NHSBT. The stem cell unit at University College London is involved in the development of new and potentially transformative forms of treatment involving immuno- therapies. Such therapies are perhaps the most exciting and promising area of cancer therapy and may eventually entirely replace the need for stem cell transplantation. I appreciate, however, that those advances cannot come soon enough for the patients mentioned tonight.

As ground-breaking as our research efforts undoubtedly are and as necessary as they are for the long term, we must always remember that research is not an end in itself. Ultimately, we are all working to deliver better, more targeted patient outcomes that offer hope to the thousands of people living with an incurable condition. In doing so, we must ensure that we are helping to improve the lives of those patients and their families while we work to transform NHS care for generations to come. That is what we are working to deliver. I hope that the hon. Member for Alyn and Deeside and my hon. Friend the Member for Enfield, Southgate will work with me as we try to do that.

Question put and agreed to.

Health Service Medical Supplies (Costs) Bill

Mark Tami Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Tuesday 6th December 2016 Commons Chamber

Had I been told by my doctor, “I’m not putting you on tablets. You’re not going on metformin. I’m going to send you off to the gym. I’m going to prescribe gym for an hour, and you’re going to walk for an hour, and you’re going to make these kinds of lifestyle changes,” I might not have stopped the type 2 diabetes affecting me, but perhaps I could have delayed its onset, and in the long run I would have saved the taxpayer a huge amount of money. That is why innovation is so vital to what is being proposed. Innovation permits so much to be done to reduce the cost to the taxpayer. I know that that is not all the Government aim to do in the Bill, but it is a big chunk of it. If we can reduce the huge amount of taxpayers’ money spent on drugs and given to pharmaceutical companies, in the long term it will help the taxpayer.

[Mark Tami (Alyn and Deeside) (Lab)]

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?

[Keith Vaz]

My hon. Friend is absolutely right. We both serve on the Administration Committee, and whenever banqueting is raised, we all highlight the need to make sure that the food MPs get, especially in the Tea Room, is compatible with decreasing obesity and calorie levels. You will know, Madam Deputy Speaker, when you have your cup of tea, that on offer are Club biscuits and Victoria sponges and all these other things. I am not saying that all this comes within subsection (1)(c) or that it could be regarded as a question of innovation; I am simply saying that innovation is not just about new technology.

None the less, there is incredible new technology around as far as diabetes is concerned, as I saw for myself last week. People no longer need to do the finger prick test. The HbA1C test can be bought at the local chemist. It costs slightly more than a finger prick test, which is obviously free for diabetics, but it allows us to test our diabetes without having to fast, and it gives a three-month reading. Moreover, there are now machines that clamp to the side of one’s arm and which, when a mobile phone is put to them, will give a glucose reading. These incredible innovations show why the new clause is worth accepting. It has been carefully thought out by my hon. Friend the Member for Ellesmere Port and Neston, who is doing an amazingly important job on the Front Bench on these matters.

The new clause would benefit the taxpayer. Innovation is very important as far as an illness such as diabetes is concerned, but, as I said, the solution is not just about the technological revolution; it is also about lifestyle changes. I notice that the SNP spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), is here. Scotland is highly advanced in terms of diabetes monitoring. One can get diabetes statistics centrally in Scotland, whereas here we cannot get them even if we write to our local clinical commissioning groups. That is why new legislation of this kind, designed to bring down the cost of drugs to the taxpayer, is very important, and why I support subsection (1)(c) and the review.

Finally, in respect of research and development, as mentioned in subsection (1)(b) of the new clause, pharmaceutical companies make an enormous amount of money—they are some of the biggest companies in the world—and we need to encourage them to plough back a good proportion of their profits into research and development. The Steno centre in Denmark only exists because of money from Novo Nordisk, one of the biggest diabetes drugs companies in the world. A person can go to the Steno centre, and in the first room they can have their blood taken by a diabetes nurse; in the next room, they can have their feet looked at by a podiatrist who is an expert in diabetes; in the next room, they can have their eyes tested—those of us with diabetes have eye problems; in the next, they can have their consultation with a GP; and if necessary, they can see a consultant. That is what I meant when I talked about the diabetes village. It comes from the concept of the Steno centre. At the moment, as a diabetic I have to go to different centres and hospitals to see my GP and others. In one case, I had to carry my own blood—

Child Cancer

Mark Tami Excerpts

Monday 28th November 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 162934 relating to child cancer.

It is a pleasure to serve under your chairmanship today, Mr Davies. I thank all right hon. and hon. Members present for attending.

The debate arises from an online petition on child cancer started by a couple whose child, Poppy-Mai, sadly passed away after a battle with a very rare cancer. She contracted a progressive and aggressive malignant rhabdoid tumour, which progressed into a metastatic brain tumour. The petition is entitled:

“Force child cancer to the forefront of the NHS and government funding schemes”,

and it calls for “more funding” to be made

“available in the fight against child cancer.”

It also calls for more to be done

“to spread awareness…more genetic testing and research. Child cancer needs to be at the forefront of our minds.”

At this point, it is important that I clarify to the petitioners that, as a member of the Petitions Committee, my job today is to lead the debate and not to take a position on behalf of the Committee. I promise to take as many interventions from as many Members as possible, to involve them in the debate.

One of the charities that got in touch with me before this debate was Christopher’s Smile, whose motto—“coz kids get cancer too”—shows the sad reality of childhood cancer. There is something even sadder when cancer—in fact, any disease—attacks children: they have the rest of their life ahead of them and cannot be said to have caused or encouraged cancer themselves by their lifestyle choices. However, there is a smaller national profile for childhood cancer, with less attention focused on the important signs to look out for and the ways to avoid it, than for cancers that usually affect adults, even though childhood cancer is the biggest killer by disease of children in the western world.

Child cancer recently hit the headlines when the singer Michael Bublé announced that he was taking a break from performing while his three-year-old son undergoes treatment for liver cancer. I am sure that all Members here today will join me in sending our best wishes to Michael, Noah and their family at this very upsetting time. What they are going through at the moment is unthinkable and there are many families across the UK in exactly the same position, with parents feeling helpless while wanting to do everything possible to protect their children from this dreadful and cruel disease.

Unfortunately, that sad story shows that cancer can strike anyone at any time. More needs to be done to educate all of us on what signs to look out for, so that cancer can be caught early and there is a higher chance of survival. I thank the Government for their response to the petition. I am sure that Members from all parties in the House support the Government’s ambition to lead the world in fighting cancer. More attention needs to be given to the ways that we can become the world leader, so that we can see the number of cancer diagnoses fall and the number of cancer survivors increase.

The cancer taskforce’s five-year plan to achieve world-class cancer outcomes includes many recommendations on cancer in children, including

“a possible review of CTYA services”—

that is, services for children, teenagers and young adults—

“to provide improved integrated care”,

and to seek

“consent from children and young people for their data and tissue collection for use in future research studies and development of services and…ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.”

All these things are crucial to beating childhood cancer and improving the care received by those who contract the disease.

On multiple occasions, charities have raised with me and the Petitions Committee the importance of getting real data to help with future developments in a range of different diseases. I chair the all-party group on rare, genetic and undiagnosed conditions, so I know that this problem does not only affect childhood cancers; it also affects other areas of the health debate. It is potentially even more important when it comes to child cancer, because thankfully child cancer is rare, relative to the population. I urge the Government to look carefully at ways in which researchers can gain access to those important, albeit anonymised data as a priority.

I was pleased to read in the Government’s response to the petition their understanding that

“a cancer diagnosis can have devastating consequences for the lives of young people and their families”,

and that the Department of Health recognises that the most important thing is that

“Care should be built around what matters to the young person and their family”.

The Department is

“working closely with cancer charities to ensure patients get the support they need during and after their treatment.”

However, more can still be done to ensure that when a cancer diagnosis is received—especially if, sadly, it is a terminal diagnosis—the child is made as comfortable as possible and is able to spend time with people who love them.

[Mark Tami (Alyn and Deeside) (Lab)]

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.

[Ben Howlett]

I agree with the hon. Gentleman. There is a multitude of different organisations out there to help at the point when a diagnosis is received, but of course that should not distract from the fact that the Government also need to look at early intervention to support the family of a child when the child receives a diagnosis. I hope that the Minister will mention that when responding to the debate.

I am the MP for Bath, which is in the south-west, and I pay personal tribute to the great work done by the Children’s Hospice South West, which serves my constituency and others across the entire region. The hospice’s dedication and the service it provides in the final days of a child’s life is tremendous. I thank the hospice on behalf of my constituents for all the work that it does.

Research and funding are obviously critical. Evidence has been submitted throughout the course of the discussions around this issue. I am sure that all colleagues in this House will welcome the fact that the number of children dying from cancer each year in the UK has fallen in the last 20 years, but one child dying is obviously far too many. Research has been at the heart of the progress made, helping more children to survive cancer than ever before, but as I said, childhood cancer remains the biggest killer by disease of children in the western world.

[Ben Howlett]

I thank my hon. Friend for her intervention, and I pay tribute to her and to other colleagues for championing cases such as that one in their work as constituency MPs. She makes an incredibly important point. Months ago, I took part in another Petitions Committee debate in relation to brain tumours and it is quite clear to me that the rarer a cancer is, the less attention is paid to the funding of research to find the underlying causes. There has been a change during the last few months and years, with more attention focused on some of the rarer cancers, but there is still a long way to go. I hope that some of the major progress made on the more common cancers, such as prostate cancer and breast cancer, and the evidence gathered can be applied to some of the rarer cancers as medical technology improves.

Approximately 3,800 children and young people in the UK are diagnosed with cancer each year, and approximately 260 children in the UK die each year from cancer before their 15th birthday. For those who survive, there are often lifelong treatment-related health problems to be dealt with. In addition, as the hon. Member for Alyn and Deeside (Mark Tami) made clear, there are also the ongoing costs in relation to the treatment and support for the families as well throughout the entire process. To be frank, we must do an awful lot more.

[Mark Tami]

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.

[Ben Howlett]

I pay tribute to the work the hon. Gentleman has been doing in this area and I completely agree with him. The health benefit analysis that is at the heart of the Department of Health in a number of areas is under review—it is constantly under review—but it needs a much more holistic understanding of the costs, not just in economic terms but in terms of societal issues, including mental health and ongoing support for a child’s family for, hopefully, the rest of their life.

I welcome the Government’s focus on improving earlier diagnosis, as it makes it more likely that patients, including children with cancer, will receive effective treatment. Additionally, it is good news that the Government have committed to implementing all the recommendations of the cancer taskforce, including that by 2020 everyone referred with suspected cancer will receive either a definitive diagnosis or the all-clear within four weeks.

--- Later in debate ---

[Sir Roger Gale (North Thanet) (Con)]

I had not intended to take part in this debate, but having heard what I have heard, I am moved to make a brief contribution. One of the most harrowing of the many harrowing things that a Member of Parliament has to deal with, particularly any MP who is a parent, is to be confronted by desperate parents with a desperately sick infant or young adult who are begging for help and are coming to their Member of Parliament as the last resort. In the course of a parliamentary career, I suspect that most colleagues will face that circumstance. If they have not already, they will in time.

Most of us will have been faced with the need or desire to fundraise to send that child to another country, often but not exclusively to the United States, for treatment that is not available here and that may or may not be efficacious. In my case, I experienced that at second hand rather than at first hand, unlike some colleagues present, but those of us who have experienced it know only too well that people will clutch at any straw. I would do the same, and I am sure you would too, Mr Davies. If the chance of success is 10%, they will take it, because 10% is better than 0%.

What grieves me is that so much effort goes into trying to react and therefore relatively little effort goes into trying to pre-empt. There are wonderful children’s hospices around the country, and I pay tribute to them. Demelza House in Kent is fantastic—there are many others—but the object of the exercise is to try to ensure that treatment is available so that children do not need to go into hospices at all.

One case that hit the headlines not so long ago was a child who was effectively abducted from hospital care and taken first to Spain and then elsewhere for treatment, because something was not available here and was available somewhere else. That straw was clutched at, and I would have done the same. Looking at what happens overseas and thinking of those hard cases, a couple of things come out from what has been said already today. Thankfully, the scale is relatively small. Equally thankfully, the scale of individual cancers is smaller still, but that in itself creates a problem. The point has been made that drug companies are reluctant to invest in the research and generation of drugs that might not be viable because there is no real market for them.

My hon. Friend the Minister has a background in science, and she will understand the possibilities that flow from co-operation probably better than anyone in the room. Having looked at the matter over a number of years and having seen the work that the Teenage Cancer Trust has done, it seems to me that we need to pull together all the expertise and concentrate on one or two centres of excellence, so that the scale and the ability for young medics to learn are viable. It is very difficult for someone to become expert in something if they do not have a patient to study. I urge the Minister to give an indication that the Government will make a Herculean effort, in a way that there has not been before, to pull together all the strands. We also need to maximise the possibilities of international co-operation, because work is being done in other countries.

[Mark Tami]

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.

[Sir Roger Gale]

The hon. Gentleman is absolutely right. He was also right to pay tribute, as I and others should have done, to the Anthony Nolan trust.

I do not often argue for centralisation, but, in this case, given the scale and the limited resources that are available, it seems that a concentration of effort might deliver more results than a dissipation of that effort.

Finally, I want to endorse what the hon. Member for Alyn and Deeside (Mark Tami) said earlier. There is a crying need for support for families from day one from the moment the diagnosis is made and the family is informed. There is a huge need for support. Some are fortunate in having large and supportive families. Others much less fortunate face terrifying circumstances and isolation.

--- Later in debate ---

[Thangam Debbonaire (Bristol West) (Lab)]

I thank the hon. Member for Bath (Ben Howlett) for his introduction and other hon. Members for their personal and heartfelt speeches and interventions. In particular, I thank the parents of Poppy-Mai, who started the petition and so brought this matter to the attention of the House.

My five asks are clear. First, more units such as the specialist one in Bristol for teenagers and young adults with cancer are needed. The units need to be carefully commissioned so that the maximum amount of specialist clinical knowledge is available to the maximum number of young people.

Secondly, a clear commissioning structure for services for children, teenagers and young adults with cancer is needed, so that everyone knows where the buck stops and who is responsible. Thirdly, the benefit system needs to be adjusted, as other hon. Members have said, so that the families of children and young people are not put into awful financial difficulties such as we have heard about just at the time when they most need to concentrate on their child and nothing else.

Fourthly, Government leadership is needed—I urge the Minister to respond to matters raised by me and other Members—with commissioning guidance, clear priorities and funding for specialist services. Fifthly, the Government need to take responsibility and say how we will go about researching childhood cancers in collaboration with European Union partners after we leave it.

Earlier this year, I visited the specialist teenage and young adults unit in Bristol, accompanied by Christine from the Teenage Cancer Trust, which contributed to the cost of the unit. The unit creates and maintains an environment that provides care for the whole person, helping that young person to cope with the emotional side of their illness, as well as giving them time and space to do school work, to be with friends and family, and to just be a young person not defined by their cancer.

The decor definitely does not make the unit feel like a cancer ward. Yes, per patient, that is more expensive than adult cancer wards. Thankfully, cancer is rare in childhood and youth, but young people have very different specific needs to be met.

[Mark Tami]

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.

[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.

Young People’s Mental Health

Mark Tami Excerpts

Thursday 27th October 2016 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

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.

[Mr Jones]

That is the case, yes. I can say from personal experience that the longer a person leaves the problem undiagnosed or untreated, the worse it gets.

I wish to touch on this idea that parents are, somehow, geniuses and know how to deal with children with mental illness. They do not. I work with Kinship Carers in Durham, which is run by Lyn Boyd, a friend of mine. It deals with grandparents, uncles, aunts and others who often find themselves, later on in life, looking after young people and children. Many of them have quite horrifying stories to tell. They often end up with the children, because of abuse, because the parents cannot cope, or because they want to save them from the care system.

I had a case earlier this year in which a six-year-old was self-harming. When I looked at his background and talked to his grandparents who were looking after him, I could understand why, but the issue is how does he access CAMHS. They were told that he had to wait six months. There we have a couple, who are not the biological parents, looking after a six-year-old. All they can say is, “What do we do?” The child is also disruptive at school. That leads to pressure on the school, which then seeks to exclude him. What happens to the child then? We are talking about not just the trauma, torment and heartache of a six-year-old self-harming, but the knock-on effect on the family and the school.

We do need a new system. It may be a community-based provision. I would certainly like to see open access services—they could be run by well-funded voluntary sector organisations or by the local authorities and councils—where people can go for help or even on occasion just information. Those grandparents, for example, did not have a clue what to do. What does a person do in that situation? The system is certainly failing those individuals. It should not be up to me as a Member of Parliament to contact a mental health trust to enable those people to gain access to services. That is where we are failing.

The problem is not just about ensuring that we have joined-up local services—I have already said that local authority budget cuts are having a direct impact on the working of such services—but the changes in the national health service and GP commissioning, which has made things worse for many voluntary organisations. Contracts are being let for a whole host of services, many of which are too large and too complex. The idea that local community groups can bid for such services does not work because those services are just too big, which means that those groups are being excluded from the money that is available. I am not for one minute saying that anyone who works in the voluntary community sector providing mental health services wants a free ride. Those groups are quite happy to be evaluated. My hon. Friend the Member for West Ham mentioned a project in her constituency that secured lottery funding. That project will certainly have had to ensure that the outcomes were there and that it was accountable. There is no way that many of those small organisations, which in many cases would provide a cheaper and better option for delivering the service, can manage those contracts that are currently being let by the NHS.

The way in which the Government should look at this matter—it is perhaps very difficult in this age of austerity—is that if they deal with it properly, they could save taxpayers’ money. It would save not just the heartache of the individuals who are going through the system, but, if done properly, money as well. On page 9 of the report, the chief medical officer said:

“Early intervention services that provide intensive support for young people experiencing a first psychotic episode can help avoid substantial health and social care costs over 10 years perhaps £15 in costs can be avoided for every £1 invested.”

If the Government really want value for money, this is a way to do it. However, there is a problem, which is that, in this country it is said that we know the cost of everything, but the value of nothing. The investment now in young people will possibly not pay for itself for another 10 or 20 years, but when it does, the payback to society will be quite large, and not just in terms of our having a healthier and happier society.

Another area I would like to touch on, which is covered in the report, is prevention—through the work done in schools and by making sure that we mainstream wellbeing. The hon. Member for East Worthing and Shoreham mentioned the difficulties of Whitehall Government and the silos people are in. We have enough reports on some of these areas now, and we do not need any more; what we need to do now is to hardwire mental wellbeing into all public policy across Whitehall. Can it be done? Yes, it can. I was involved when the last Labour Government mainstreamed veterans policy. Bob Ainsworth, who was the Minister at the time, commissioned a report on veterans. He made sure that the issue was taken forward and that each Department, when it was coming up with public policy, took veterans into account. We need a similar approach to mental health and mental wellbeing. The only way to do that is to have a Cabinet Sub-Committee so that this is dealt with at Cabinet level and the main Departments make sure, when they are coming up with a policy, that they take into account mental health and mental wellbeing.

As I said, early investment saves money, but it also makes for a better society. Another issue where I totally agree with the report is supporting school counsellors. Counsellors could be something of a pressure valve in the system. If they are properly trained, and there is a proper network of them across schools, they could intervene early on and prevent some of these issues. The hon. Gentleman said he was reluctant to make it mandatory for schools to carry out this work, but, as the report says, we have national standards and curricula for physical education, so we should have them for mental health as well.

Again, it is a patchy picture. There is some good work going on in schools across the country, with teachers taking the initiative. In my constituency, Simon Westrip, a lecturer at Northumbria University, has done some work around mindfulness with local community groups, and he is now taking that into secondary schools. If we look at some of the feedback on and evaluation of mindfulness in schools, it is clear that this is not just about the effect on individuals; it actually raises standards in many cases. However, the approach to these issues is patchy, and unless they have dedicated time in the curriculum, or they are something governing bodies need to take into account, people will not do that. Done properly, such work will not only address the pressures that a lot of our young people face now, so that they are happier going through school, but it will save lives and, in some cases, save money in the long term. Is this rocket science? I am not sure it is. We in this country have to change our attitude to mental wellbeing. If we get it right in children, as the report highlights, the payback for this country and its economy in the long term will be tremendous.

Let me finish where I started, by thanking the British Youth Council for its work. I also thank it for giving us another opportunity today to talk about mental health on the Floor of the House.

Health Service Medical Supplies (Costs) Bill

Mark Tami Excerpts

2nd reading: House of Commons & Programme motion: House of Commons
Monday 24th October 2016 Commons Chamber

[Justin Madders]

I thank my right hon. Friend for his intervention and pay tribute to him for his great work on diabetes. It is a matter that he consistently raises in the House, and he is right to do so. Of course he is right that there are many ways in which the diabetes bill can be tackled, and some of the shocking statistics that I have seen on the level of take-up of education courses is something on which we can do much better.

We support the broad aims of the Bill and of what the Government are trying to achieve, but we have a number of concerns, which I hope the Minister will address when this debate is drawn to a close, both about what is in the Bill and about the Government’s policies more widely on access to treatments.

Historically, the technical mechanisms used by the NHS to control expenditure on medicine have not set the public’s imagination alight, but in June we were all appalled to read reports that a small number of companies were exploiting loopholes to hike up the cost of medicines. In the past few years, we have also seen headline after headline about one effective treatment or another being denied to patients in desperate need on the basis of cost. I will address each of those issues after briefly touching on the Government’s proposal to harmonise the statutory and voluntary schemes for price control and on the new reporting requirements.

As we have heard, there are currently two schemes for controlling pricing: the voluntary scheme, the pharmaceutical price regulation scheme, which applies to the vast majority of suppliers; and the statutory scheme, which, in 2014 covered around 6% of branded medicine sales in the UK.

The voluntary PPRS scheme is based on companies making payments back to the Department of Health based on their sales of branded medicines to the NHS. By contrast, the statutory scheme operates on the basis of a cut to the published prices of branded medicines. These different approaches appear to have produced different results. Since 2014, the statutory scheme has delivered significantly lower savings than those of the PPRS, partly as a result of companies either switching individual products or switching wholesale into the statutory scheme, which is one reason why we have seen a significant reduction in the level of the rebate. Therefore, we support the rationale behind aligning the two schemes, which will create a more level playing field between companies and also give us a better chance of delivering greater savings to the taxpayer.

However, as we have heard, this Bill extends beyond closely aligning the two schemes and adds a new provision, giving the Secretary of State the power to require all medicines manufacturers and suppliers to provide information relating to prices.

[Mark Tami (Alyn and Deeside) (Lab)]

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.

[Justin Madders]

My hon. Friend is absolutely right. That is one reason why we must tread carefully, and hear what regulations the Government produce for consultation.

Some of the measures did not form part of the initial consultation, and there is a feeling that they have been added to the Bill at the last minute. Given the damaging cuts to the community pharmacy sector that were announced only last week, there is an anxiety about what costs could be created by any additional administrative burden.

--- Later in debate ---

[Justin Madders]

We will not get very far with this Government on corporation tax. They have been going in a direction that we would not have chosen. They have decided on the measures in the Bill as the best way to control prices and we will see how they get on. Will the Minister confirm that if it becomes clear in a few years that we have opened up another set of loopholes, we can expect the Department to take the lead and to be proactive in its investigations, rather than relying on a team of journalists to expose the problem?

We know that in Scotland the rebate that has been generated has been used to create a dedicated fund to give patients access to new medicines. Will the Minister consider investigating similar models and ensuring that the benefits of the scheme are used for the purpose of improving our frankly poor record in allowing patients to benefit from new medicines? We accept that there will always be challenges in matching funding to new drugs, but there is at least a degree of logic in allowing savings made in the drugs bill to be reinvested to enable new products to reach patients more quickly.

We welcome today’s report by the Accelerated Access Review, which sets out an ambitious plan that could see patients accessing new lifesaving treatments up to four years sooner. We hope the Minister will take this opportunity to give financial backing to the aims of the review by committing to using future rebates from the pharmaceutical sector to improve access to treatments. I ask the Government to seriously consider this, as there are growing concerns about access to new drugs and treatments in this country, and particularly about the widening gulf between the UK’s record on developing new drugs and the ability of the NHS to ensure that all patients benefit sufficiently.

The “International Comparisons of Health Technology Assessment” report published in August by Breast Cancer Now and Prostate Cancer UK shows that NHS cancer patients in the UK are missing out on innovative treatments that are being made available in some comparable countries of similar wealth. This is at the same time as a number of medicines have been delisted by the Cancer Drugs Fund after it overspent its budget, and the failure to extend this scheme to innovative treatments as well as medication. There was a report in The BMJ in July entitled “A pill too hard to swallow: how the NHS is limiting access to high priced drugs”. It came to similar conclusions when looking at new antiviral drugs that held out a real prospect of eliminating hepatitis C but which were very expensive.

[Mark Tami]

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?

[Justin Madders]

My hon. Friend is absolutely right. We must be careful of the law of unintended consequences with this piece of legislation. Commercial decisions will be taken on investment if the return is not sufficiently high, so we have to get the balance right between encouraging investment and getting value for money for the taxpayer.

The BMJ report showed how NHS England, having been unable to budget for broad access to the drugs I mentioned, sought to alter the outcome of the National Institute for Health and Care Excellence process and, when it failed, defied NICE’s authority by rationing access to those drugs. There was also widespread controversy over attempts by NHS England to avoid funding anti-HIV pre-exposure prophylaxis by passing on responsibility to local authorities at the same time as cutting the public health budget allocated to councils. If we are to strive to create a level playing field for drugs companies, we should look to do the same for patients and their ability to access treatments.

Labour established NICE to speed up the introduction of clinically proven and cost-effective new medicines and procedures. An order was made by Parliament in 2001 to mandate the funding of healthcare interventions approved by NICE through its technical appraisal process. They were intended to be available to patients three months after publication of the appraisal. However, subsequent orders have chipped away at that, culminating in the current consultation by NICE and NHS England, which will again potentially delay or deny access to important treatments. Therefore, as well as looking at ring-fencing the payments received under this scheme, will the Minister look more widely at access to medicines? Successive studies have demonstrated that there is relatively low take-up of new medicines by the UK compared with other high-income countries. Not only does that let patients down, but it could impact on the future of the pharmaceutical industry in the UK, particularly given the sector’s concerns about the relatively small value of sales in the UK, compared with other countries, and given the uncertainty surrounding the future of the European Medicines Agency following our decision to leave the European Union.

I am sure Ministers are aware of the concerns that have been raised about that and of the need to ensure that the country is still seen as a leader in the research sector. The Prime Minster has said:

“It is hard to think of an industry of greater strategic importance to Britain than its pharmaceutical industry”,

and the Opposition agree, but we cannot be complacent about the state of UK pharma, particularly as investment decisions are often made by parent companies based in other parts of the world. I hope the Minister will take seriously the interrelationship between decisions about access to treatments and the future of pharmaceutical research and development in the UK, particularly when we know that other countries across Europe are using the current uncertainty as a result of Brexit to eye up opportunities to steal a march on our own industry.

To conclude, the Opposition support the broad aims of the Bill and what the Government seek to achieve in terms of better controlling the cost of medicines. In Committee, we will seek to explore in more detail the new information powers and the details of the impact of those new powers on the supply chain. We will also continue to hold the Government to account and ensure that patients are able to access the best available treatments without any unnecessary delay.

Carers

Mark Tami Excerpts

Thursday 9th June 2016 Commons Chamber

[Mims Davies]

I absolutely agree with my hon. Friend. My caseworkers have been into the community, meeting constituents who are unable to come to surgeries or drop-ins. They have been to refuges to see women with difficult disability issues. They are prepared for anything and we would be nowhere without them.

Today’s debate will allow us to realise that caring will only increase in importance. With an ageing population and advances in medical science, we are seeing a steady increase in those who need care and those who are willing and able to provide it. Since 2001, the carer population has grown by a staggering 16.5%. There is a strong economic case for doing more for our carers. The economic value of the contribution made by 6 million carers is £132 billion a year, which is nearly equal to the UK’s total health spend.

As the number of young carers grows to over 700,000, perhaps we need a national day to recognise them and to highlight and support what they do. They look after family members who are physically ill, mentally ill, disabled or perhaps even misusing substances. These young children miss out on many normal childhood experiences that they should be taking part in. Young carers can sometimes be isolated and bullied owing to the pressures they face at home.

[Mark Tami (Alyn and Deeside) (Lab)]

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.

[Mims Davies]

I thank the hon. Gentleman for that point. I absolutely agree. Pointing out that there are difficulties at home can be a frightening experience, and young carers may wonder what it will mean for them. It may feel better to say nothing, but that is a frightening place in which to be.

Young carers often miss school days. When they become young adults, they are more likely to drop out of college or be unable to head to university. That is not good enough after all they have put into their families and given the impact on their lives. They need support when helping their loved ones. They display real human decency at such a young age and suffer as a result. We should be nurturing, supporting and applauding our young carers.

The vast majority of carers are of working age. Many of them want to work, and 3 million people juggle full or part-time work with their caring duties. At the House of Commons carers event this week, I spoke to carers who are juggling their desire to do it all and who are not dropping the ball even though their health is often suffering. They are sometimes aware that they are able to care for their loved ones only for a limited time: they need to stay in the workplace for financial reasons. It is often not a choice; it is forced.

It is bad for companies if they lose our carers because the carers feel they have no choice but to walk out the door, which is what I did. If I was not in this place, I would now be without any caring responsibilities—apart from the two small children who do not seem to have been adopted yet, so I have to remember to look after them! I would be looking for a job and would have been out of the workplace for some time.

Contaminated Blood

Mark Tami Excerpts

Tuesday 12th April 2016 Commons Chamber

[Mark Tami (Alyn and Deeside) (Lab)]

My hon. Friend mentioned the various schemes that have been put in place, but does she agree that the process of applying and getting through those is very difficult, particularly for people who are so ill?

[Diana Johnson]

Absolutely. My hon. Friend makes a very important point and I shall come to it shortly.

End of Life Care

Mark Tami Excerpts

Wednesday 2nd March 2016 Commons Chamber

[Dr Sarah Wollaston (Totnes) (Con)]

The care that people receive at the end of their lives has a profound impact, not only on them but on their families and carers. All Members of the House want people to be able to access the highest quality care, irrespective of their age, diagnosis, where they live or the setting in which they are treated. We know how to deliver world-class care—indeed, we know how to deliver globally inspiring care. To start on a positive note, I should say that The Economist ranks Britain as the best in the world, from among 80 nations, for delivering end-of-life care, and we should be proud of that. The disadvantage is that that care is not available everywhere to everyone, and that is the challenge we face today.

In the 2015 report “Dying without dignity”, the Parliamentary and Health Service Ombudsman set out some starkly worrying cases of poor care that highlighted a theme, and she was clear that it is a recurring and consistent theme in her casework. For that reason, the Minister must look carefully at the themes in that report, and also at other reports that have been produced.

At the end of the previous Parliament, the Health Committee produced a report on end-of-life care, and I thank all members of that Committee, the Committee staff and our Committee specialist advisors for their valuable input, as well as the very many people and organisations from around the country who contributed.

[Mark Tami (Alyn and Deeside) (Lab)]

Does the hon. Lady agree that we must also consider the families of those children who unfortunately have very short lives? We need support for them as well, and it should be available across the country.

[Dr Wollaston]

I agree entirely with the hon. Gentleman that this care should apply irrespective of someone’s age or the setting in which they are treated. Social care will be integral to that, and I will expand further on that issue later on.

Another report the Minister will be aware of—it was commissioned by the previous Government from the Choice in End of Life Care Programme board—is “What’s Important to Me. A Review of Choice in End of Life Care”. It is now exactly a year since that report was launched. When can we see a timetable and a response to that long-awaited report?

I know other Members want to speak, so I will just touch on four key themes today: variation, communication, choice and control, and funding—including funding for social care. On variation, dying does not make equals of us. People with cancer are currently accessing about 75% of specialist palliative care. We are making great progress in that regard, but we need to make such palliative care available to people with other diagnoses. Our report touched on poor access for elderly people, particularly those with a diagnosis of dementia. The Minister will be aware of the “National Care of the Dying Audit for Hospitals,” which showed that 21% of hospital trusts are meeting National Institute for Health and Care Excellence guidance for providing seven-day-a-week, face-to-face specialist palliative care between the hours of nine and five. In fact, only 2% of trusts are making that care available around the clock, seven days a week. We have a long way to go.

Tackling variation means understanding where the gaps exist. The VOICES survey, which collects the views of informal carers and evaluates the services available to them, has been invaluable in setting out the issues important to those who have been bereaved and the experience of their loved ones after a bereavement. A point that has been made to me very forcefully is that we could do so much better in addressing the gaps in provision if the VOICES survey was expanded. Currently, it does not have enough power to be able to identify where there is variation around the country. Will the Minister address that point when he sums up?