Stem Cell Transplant Patients
(1 year, 6 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
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.
Mr Clive Betts (Sheffield South East) (Lab)
First, let me declare my interest: I am vice chair of the all-party group, and also a recipient of a transplant six years ago. My right hon. Friend is absolutely right on this point. When I was having my chemo, the hospital kindly arranged it so that for several weeks I could go in on a Monday morning, then come down here by train, and go back on a Thursday and have my second dose. Also, throughout the whole process I was able to do my job on email. The nurses used to laugh at me when I had my stem cells harvested—my right hon. Friend will know about that; it took me three goes, four hours at a time—because during that process I would carry on doing my emails. They used to laugh at me, but they understood the process. That is very different from the situation facing someone who has to go to work, perhaps in a manual job on a low income, who loses out right through the process. We must reflect on how we can better help people in those circumstances.
Jim Shannon
I congratulate the hon. Gentleman on bringing forward the debate. I spoke to him before, because I realised that he was bringing forward an issue close to my heart, not personally but for my constituents. The Anthony Nolan charity does spectacular work throughout all of the United Kingdom of Great Britain and Northern Ireland, including my constituency of Strangford.
The most recent statistics show that 70% of patients—some of them are from Strangford—have considered returning to work earlier than advised due to financial concerns, jeopardising their recovery. Does the hon. Member agree that there is an incredible delay in assessments and decisions for social security at the moment, and that if more effort were made by the Government and the Minister to ensure that they were done on a timely basis, some undue stress would be taken off people awaiting transplants? Ultimately, they would not feel that they had no choice but to go back to work when clearly they should not do so.
Mark Tami
I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from.
As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end. Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.
Liz Twist (Blaydon) (Lab)
I thank my hon. Friend for giving an excellent explanation of the position and for succeeding in getting an Adjournment debate on the issue. Does he agree that people are hit three times over? They are hit while having the treatment, often hit by reduced income when they have finished their treatment and hit by extra costs from needing heating and food as well as other things, especially now we face such a cost of living crisis.
Mark Tami
Absolutely. My hon. Friend makes an important point. Patients must continue to take those extra measures for fear of getting an infection that could be life-threatening. As she said, they are advised to keep warm at all times, to sterilise drinking water and to wash their clothes more often. With the surge in electricity and gas bills, those extra costs are really hitting patients hard.
Another part of the transplant process is having what is known as a clean diet, which basically means that the patient needs to know exactly where their food comes from and how it was cooked, so they tend to cook it themselves, which in the main makes for a more expensive process. Ready meals are not really an option. If someone very kindly prepares something, they cannot take the risk because they cannot be 100% sure where it has come from. Clearly, the record food prices we are now seeing make the situation far worse. We hear on the news that people are going for cheaper options.
Mark Tami
Many people feel that they have to go for cheaper options, but patients cannot do that. That is not an option for them. Patients are going to food banks, but they still have to be very, very careful.
My hon. Friends touched on travel costs, which are a major concern for stem cell transplant patients and their families. In the weeks after leaving hospital, most patients need to attend follow-up appointments. I remember from our own experience that that was twice a week to begin with, but it is sometimes more often. It went down to once a week and then so many times a month. Hopefully, the process begins to wind down over a number of years. So there are costs, but it is very important that the appointments are kept. Alongside that—again, this is from personal experience—there are issues such as graft versus host disease, where the donor’s stem cells attack the patient’s body cells after transplant. That is a condition that can carry on and flare up for many years. If it gets out of hand, it can get to a life-challenging position for the patient.
Patients therefore face especially high fuel and hospital parking costs. Those without access to a car must rely on family or friends, or pay for a taxi. Others have no option but to use public transport, with all the associated risks of picking up an infection. Adding to travel costs is the fact that specialist transplant centres are often located miles away from patients’ homes, as my hon. Friend the Member for Coventry North East (Colleen Fletcher) made clear. That creates a problem in itself. I think we all applaud the use of specialist centres, because the evidence shows that that is where the specialists are and where we get the best care, but we have to help and support people to get to those specialist centres. When we were in Alder Hey Hospital, there were patients from the Isle of Man. Clearly, we are not going to have a specialist centre on the Isle of Man, even if we had the money to do that. It just would not be practical. So we have to support people to get to the specialist centre and then support them with accommodation. The Ronald McDonald houses, which are available at a number of places, really do help families with a sick child.
Given the intensity of the treatment and the long recovery period, it is not surprising that countless patients find that they either have to give up work for many months and sometimes longer, or that their carers have to take reduced working hours or even unpaid leave to shield at home and help the patient through their recovery period. Going back to work after a transplant is not always possible or safe for everyone. A lot of patients will experience long-term ill health, and the cost of being out of work is significant for everyone. Older patients may well end up taking earlier retirement, with knock-on implications even if they have a good pension. Some patients may be lucky and have a company sick pay scheme. Others may have to rely on statutory sick pay, but that can only be claimed for up to 26 weeks, and recovery often takes longer. Not all companies have the greatest sick pay scheme, and even then it is only a safety net for a period of time. Some patients feel that they will be forced back to work much sooner than they should be. Even when an employer is understanding to begin with, the pressure starts to build after six or 12 months. It is not only the employer who is affected. Perhaps that employer has to get somebody else in, or the issue starts to cause problems with the rest of the workforce. Even if the employer is very understanding, there is only a period of time that they can bear the cost. We need to support people in that position.
Clearly, undergoing a stem cell transplant can cause a dramatic reduction in household income, and, compounding that, the cost of living crisis is having a disproportionate effect on patients and their families. The massive rise in inflation has driven up the cost of heating homes, buying food, travelling to and from hospital and paying for hospital parking—that is if people can even find a parking space in the first place.
A recent survey by the charity, Anthony Nolan, gives us an indication of the extent of the financial impact of stem cell transplantation on patients and families. Seventy per cent of transplant patients or carers feel that they must either reduce their working hours or, in some cases, give up work altogether. Almost 40% of households earn less than £20,000 a year after a transplant. That is significantly lower than the national average of more than £32,000.
To try to manage the astronomical rise in costs, more than 40% of patients have borrowed money, taken on debts, had to move, or refinance their homes. We know what the mortgage market is doing at the moment, and that is an extra worry—an extra burden—for people who are effectively being forced into this situation. We even hear reports of people turning to loan sharks to try to fill the gap in their income. Anthony Nolan found that 70% of patients had considered returning to work earlier than advised due to financial concerns.
A carer whose child is undergoing a transplant said:
“We now rely on food banks and friends. We cannot use the car other than for hospital visits. Our costs have massively increased, while our income has drastically fallen.”
This is not a one-off case. This is a common theme that comes up time and again.
Anthony Nolan is regularly hearing from patients who are struggling to afford even the basics, and the situation is getting extremely desperate. Sixty per cent of respondents told the charity that they have struggled in the past year to afford to heat their homes to stay warm, with some patients experiencing such severe damp in their homes that they have had to resort to sleeping in their cars. Almost half have struggled to purchase good food and, consequently, patients are increasingly turning to food banks, and clinicians are seeing higher rates of infection and even malnourishment.
One carer whose daughter had two stem cell transplants described how she had cut back on costs, so much so that she now walks 12 miles a day to take her children to school. In her own words:
“The rising cost of living has crucified me”.
Almost half of patients struggle to afford travel to and from hospital appointments. As my hon. Friend the Member for Coventry North East (Colleen Fletcher) said, shockingly, some patients have reported going without food and avoiding putting the heating on to pay for that journey. One patient paid for 280 miles of fuel for a round trip, and another reported a £140 cost of a taxi ride. It is particularly striking that half did not struggle to afford such things before the current cost of living crisis.
Social workers up and down the country are supporting transplant patients in increasingly acute situations. The charity, Anthony Nolan, states that the crisis is the worst it has seen in 30 years. At last month’s meeting of the APPG we heard from Cheryl Bell, who is an incredible social worker based in Newcastle who specialises in supporting stem cell transplant patients. Cheryl told us that suicides among stem cell transplant patients are “going through the roof”.
The consequences of the cost of living crisis for stem cell transplant patients are marked and severe. Some 94% of patients report that their physical health is negatively impacted by the crisis. As has been said, some patients even consider postponing a lifesaving stem cell transplant because they are worried that they cannot afford to be out of work. To reiterate, patients who might otherwise die without a stem cell transplant are seriously considering whether they can simply afford to receive that treatment. No one should have to choose between heating, eating and treatment. It is not just about the cost of living; it is as serious as the cost of survival.
Anthony Nolan has been overwhelmed by the rise in demand for financial assistance. Calls from patients to its helpline about money worries have surged more than 350% in just one year. It launched an emergency appeal to provide a dedicated cost of living fund to help ease worry about household bills going through the roof but, unfortunately, it could help fewer than 200 patients. Ultimately, it should not be for charities—or, often, the generosity of the British public—to plug the gap.
What should Government do to help patients and their families who are especially impacted by the cost of living crisis? The Chancellor introduced some measures in response to the cost of living crisis, but more than half of patients said that the financial support they received has not covered the extra costs they faced “at all”. I am sure that the Minister will refer to the energy price guarantee as a key source of support. I certainly welcome that intervention from the Government but, unfortunately, it has not gone far enough to meet the rapidly increasing need among stem cell transplant patients for financial support with their energy bills. Likewise, many stem cell transplant patients are not eligible for the time-limited disability cost of living payments. That means that too many patients are falling through the gaps, without the support they need for their recovery.
I appeal to the Government to offer targeted support to this group as a matter of urgency. First, I ask that the warm home discount scheme be extended to all stem cell transplant and CAR-T therapy recipients. Given that 60% of patients struggle to afford to heat their homes to stay warm, £150 off energy bills across the winter would undoubtedly be a potential lifeline for many households. In the long term, it is important that the Government look at how to secure our energy security. That needs to stay a priority and not drop down the list in years to come, so we do not face such a situation again.
Secondly, I back Anthony Nolan’s proposal for a patient travel fund for stem cell transplant and CAR-T therapy recipients in the UK. Such a fund would—and should—cover all costs associated with safe travel to and from hospital for treatment. A Government healthcare travel costs scheme exists in England, but it has a high eligibility threshold, greatly limiting the number of patients who can receive it. Typically, payments are not made in advance, meaning patients can be significantly out of pocket while they wait for a refund. For a lot of people, that is not feasible.
What is more, the scheme can be burdensome to access. I know that when someone receives the shock news about a loved one and is dealing with that, the last thing they want is to be burdened with forms and the complexity of going through a time-consuming process. As I have said, fewer than 5,000 people receive a transplant in the UK each year, so such a fund would not represent a significant cost to the Treasury, but it would make a massive difference to patients’ lives.
Take it from Claire, who underwent a stem cell transplant and CAR-T therapy in London after relapsing in 2019. Speaking of her experience with travel costs, she said:
“During my CAR-T treatment I had to travel hundreds of miles for vital hospital appointments at the huge cost of £160 per trip. Living so far away meant I had to pay for overnight stays in hotels, which was really hard to budget for. On top of that, hospital parking costs for family and friends visiting when I was an inpatient were sky high. There was no financial help for me to pay for transport costs when I most needed it.”
I hope the Minister can see that patients are raising consistent concerns.
Finally, I call on the Government to guarantee that all stem cell transplant and CAR-T therapy recipients receive the benefits that they are due and for which they are eligible in a timely manner. I know this is an issue for all benefit recipients, but people in this condition need to receive those benefits when they need them: straightaway. Macmillan has done an incredible job shining a light on the waiting time for personal independence payments, with the average still standing at a shocking 14 weeks. I echo its calls for the Government to cut that distressingly long waiting time without delay. It has never been more important to ensure that everyone has access to the financial support they are entitled to, and not leave vulnerable people stranded. That must be addressed as a matter of urgency. The Government need to ensure that the people who need the benefits the most get them the soonest.
To conclude, it is clear that the current benefits system is not sufficient to tackle the unprecedented cost of living crisis and the rapidly rising need for financial support among the most vulnerable in society. Many years ago, when I was going through the process with my son, the system for supporting patients was not right, and it is not right now—it has to change. While charities such as Anthony Nolan do an incredible job supporting patients, they should not be left to fill the gaps that Government policy leaves. Urgent action needs to be taken. Ultimately, stem cell transplant and CAR-T therapy patients have only one chance of recovery. They need extra support from the Government now, to see them through the cost of living crisis and enable them to realise that chance that they deserve.
The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)
I congratulate the right hon. Member for Alyn and Deeside (Mark Tami) on securing this important debate, and I congratulate the other hon. Members on speaking interestingly about their personal experiences in this field. As chair of the all-party parliamentary group on stem cell transplantation and advanced cellular therapies, the right hon. Member for Alyn and Deeside speaks from particular personal experience and I think everyone will have been delighted to hear the wonderful update about Max.
For people living with blood cancers and blood disorders, stem cell transplants are a potentially life-saving treatment. That is why we continue to invest in improving clinical outcomes and access to transplants. Since 2011, Government funding of more than £28 million has made possible the establishment of a unified stem cell registry, a cord stem cell bank, and a strategy to recruit donors to meet the needs of our increasingly diverse population. Over the next three years, we are investing £2.4 million more to increase the resilience of the UK stem cell supply and to address health inequalities with targeted campaigns to recruit donors from ethnic minorities. The right hon. Gentleman mentioned Anthony Nolan, which gives me the opportunity to thank that charity for its tremendous work with the NHS to build up the stem cell register.
As we know, the very nature of these transplants means that patients are among the most vulnerable in society. They are left with seriously weakened immune systems, for all the reasons the right hon. Gentleman has given. To help households and individuals to cope with the rising costs of living, we are providing some of the most generous cost of living support in Europe, worth an average of £3,300 per household this year and last. As well as the action on energy prices, that includes payments to more than 8 million UK households receiving eligible means-tested benefits, and to 6 million people across the UK in receipt of eligible “extra-costs” disability benefits.
For those needing extra support, the Government are providing an additional £1 billion to allow the extension of the household support fund in England this financial year. Our energy price guarantee is helping millions of people to deal with rising energy costs, and, as the Chancellor announced in the spring Budget, it will be extended, at £2,500, for an additional three months from April until the end of June. That means that by the end of June we will have covered nearly half a typical household’s energy bill, with a typical household saving about £1,500.
The right hon. Gentleman rightly raised the importance to patients of keeping warm, and the warm home discount is a key policy in our programme to tackle fuel poverty and help low-income households with the cost of energy, whatever the reason for their low incomes. It gives low-income and vulnerable households throughout Great Britain an annual £150 energy bill rebate every winter, and since it began in 2011 we have provided more than £3.5 billion in direct assistance for households. The scheme obliges participating suppliers to provide rebates for eligible low-income and vulnerable households.
In order to target fuel poverty better and provide the vast majority of rebates automatically, we have expanded and reformed that scheme for England and Wales from 2022-23 onwards. That includes those receiving universal credit, for which stem cell transplant patients may well be eligible. Depending on their specific needs, stem cell transplant patients may be entitled to financial support to contribute towards their extra costs, which may include the personal independence payment. PIP can be paid in addition to the other financial and practical support that may be available through universal credit.
The Government are committed to ensuring that people can access this financial support in a timely manner. While waits are still too long, they are coming down dramatically and we are constantly improving the service. Claimants are kept informed and are updated at each stage of the process—for instance, through a text message service—and in most instances any awards can be backdated to the date of the claim.
I know—not least because of the right hon. Gentleman’s comments this evening—that rising travel costs represent a significant burden for stem cell transplant patients and their families. Recipients of certain benefits, including the personal independence payment, can apply for extra help with travel costs, such as a disabled person’s railcard, a blue badge or a vehicle tax reduction. NHS trusts can also exercise discretion to provide accommodation and other support, including transport, depending on local and individual patient circumstances. Depending on their financial circumstances, patients may be able to access extra help with travel costs, such as the NHS low-income scheme and healthcare travel costs scheme.
Mark Tami
Does the Minister accept that if we require patients to attend specialist centres—which I fully support; indeed, perhaps we need to go further in that regard within the NHS—we should think about how we can help those who have to travel long distances to cover their costs, given that they cannot receive that treatment at the hospital down the road?
Neil O’Brien
I would agree with the hon. Gentleman. I was talking about one scheme, the healthcare travel costs scheme, but patients might also be eligible for non-emergency patient transport, on which we spend about £500 million a year across England. We will continue to look closely at the future of that, not least because of the hon. Gentleman’s comments this evening.
Jim Shannon
Patients in my constituency who come to me feel almost compelled to go back to work because they do not have the finances, but they cannot do so because they are not fit enough. Could the Minister’s Department ensure that those people who find themselves in difficult financial circumstances have someone to speak to who could perhaps direct them through the process so that they can get help?
Neil O’Brien
The hon. Member makes a good point, and I am happy to continue this conversation with him after the debate. He always provides thoughtful ideas and I am keen to continue talking about that one with him.
For those people who are going through all this at the moment, I have mentioned some of the schemes that are available for transport, such as the healthcare travel costs scheme and non-emergency patient transport, but we will continue to look at those to make sure that they are adequate to get patients to the specialist treatment they need.
In closing, let me again thank the right hon. Member for Alyn and Deeside for securing today’s really important debate and for his thoughtful contribution. Stem cell patients and their families and carers show tremendous courage in the face of incredible challenge, and we will continue to do whatever we can to support this vulnerable community.
Question put and agreed to.