Stem Cell Transplant Patients

Debate between Mark Tami and Colleen Fletcher

Monday 12th June 2023 Commons Chamber

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

I am very grateful to have been granted today’s debate on the impact of the cost of living crisis on stem cell transplant patients and their families. I thank all the Members who have stayed for this evening’s debate, and I should put on record that I am chair of the all-party group on stem cell transplantation and advanced cellular therapies.

Many Members will be aware that a stem cell transplant is an extremely intensive treatment for blood cancer and blood disorders. Receiving a stem cell transplant is a long and difficult journey, and not without considerable risk to the patient. Despite this, stem cell transplantation is an absolutely vital treatment option. For many patients, it may be the last chance to cure their disease.

Overall, an average of fewer than 5,000 people receive a stem cell transplant every year. As many in the House will know, in 2008 my son Max was one of the children to receive a transplant, and I am pleased to be able to tell the House that, following the completion of his MA at the University of Manchester, he will be starting the first day of his job tomorrow. Max responded well to treatment, after a very bumpy road, but I cannot overstate the sheer terror and mental anguish of that experience for me and my family.

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

I congratulate my right hon. Friend on securing this debate on a subject which, as he knows, is very close to my heart as my husband also had a stem cell transplant in 2014. It is often a last chance, and I know from personal experience with my late husband that it is essential for stem cell transplant patients to attend every single one of the many hospital appointments they have each week. Missing just one appointment can have serious, even life-threatening, consequences, which we experienced ourselves. So it is extremely concerning that due to the impact of the cost of living crisis, many patients are struggling to pay for travel to and from their hospital. Often these specialist centres are many miles away and they cannot use public transport because of the threat to their compromised immune system. So does my right hon. Friend agree that a dedicated travel fund is vital to ensure that stem cell transplant patients can attend every single appointment?

[Mark Tami]

My hon. Friend must have read my speech, because I will develop precisely that theme, as it is very important. When we went through that very difficult time, we were fortunate financially in that I had a well-paid job, being a Member of this House. I also had a very flexible and understanding employer; I was allowed the time off to be at the hospital. We had a car. We could afford to stay in a hotel if necessary and to eat out. Saying that, we still managed to build up debts, but we were in the hospital off and on for about two years and we saw many people who were not in that fortunate position—single mothers, people without a car who had to rely on public transport, people without a family network to support them, and people without that financial back-up to get through what is not only a traumatic process but a costly process for the family of the person being treated.

Stem Cell Transplants

Debate between Mark Tami and Colleen Fletcher

Tuesday 24th January 2017 Commons Chamber

[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.