Dialysis Care Outcomes — [Sir George Howarth in the Chair]

– in Westminster Hall at 2:41 pm on 19th May 2022.

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[Sir George Howarth in the Chair]

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 3:00 pm, 19th May 2022

I beg to move,

That this House
has considered dialysis care outcomes.

I thank you for chairing this debate, Sir George, and thank those who are here to participate—they are colleagues, but also friends. I am pleased to see the shadow Minister, Feryal Clark, in her place and am especially pleased to see the Minister in her place, too. I am not being condescending when I say that; I am encouraged because the Minister understands the issues very well. I look forward to her response—no pressure, Minister. We are pleased to have this opportunity.

I thank our guests in the Gallery, particularly Fiona Loud, who has been instrumental, through me, in achieving this Westminster Hall debate. I thank the Backbench Business Committee for allowing the debate. I applied for it some time ago, but the Queen’s Speech meant that those applications to the Committee fell. It was originally supposed to take place on the Thursday before recess, but we are having it at the same time, 3 o’clock, as it would have happened on that day.

Dialysis is an important issue to raise, especially at this time of rising daily costs that directly impact people who choose to receive their treatment in their own home. In a question to the Prime Minister yesterday, Keir Starmer referred to Phoenix Halliwell and the cost for those receiving dialysis treatment at home. There might have been a bit of confusion around how the question was asked and how the answer came through—I know that others will speak to that—but it pinpoints a key issue for this debate, which is the impact of the cost of electric and energy on people receiving dialysis treatment at home. That is of particular concern to me and others at this time of rising costs. There are global pressures on the price of energy. This is not a debate on energy, but on what is happening to those who have dialysis treatment.

It is not just adults who are affected by this issue. Fiona and I spoke to the Minister beforehand; we appreciate that very much. It seems that not every postcode covers children. Local providers have discretion as to whether they reimburse the utility costs for children. I know that Fiona, who I spoke to beforehand, is concerned about that, and I certainly am. One person who contacted us said that her son has been on peritoneal dialysis since January. It used to cost £115 per month for combined usage, but it is now up to £350—a massive increase of 220%.

Although this debate covers a health issue, it also focuses on the predicaments of those people in the health system. We need to review that and think about it again, so that we can understand it better. It is important for those we are concerned about that we understand where the pressures are—financial pressures are coming from all sides.

Others will refer to this, but even on the warmest day of the year—we experienced the highest temperature of the year on Wednesday—a person receiving dialysis will feel cold. Cold weather puts even greater pressures on household energy costs, but people who receive dialysis at home are being very adversely affected by rising fuel and heating costs. I will refer to that later, but I wanted to put those two issues on the record. They have been brought to my attention and are of deep concern.

I know that this is not the Minister’s responsibility, but I will give some facts from Northern Ireland, where attempts are made for every patient to be given approval to receive dialysis at home at first. It does not always happen, because sometimes patients are sent to the renal department at the Ulster Hospital, which is my nearest hospital and which I have visited on a number of occasions over the years.

Analysis by the UK Renal Registry showed the rate of home dialysis in areas of deprivation at the end of 2020. Unfortunately, however, there was no data available for patients treated in Scotland. My colleagues and friends from Scotland may have some figures. Overall, the rate of home therapy was lower for patients from the more deprived areas of England, Northern Ireland and Wales. In England, 22.9% of patients in the least deprived areas were able to access home dialysis, compared with 15% in the most deprived areas. The rate of home dialysis for patients in Northern Ireland was 7.2% in the least deprived areas, whereas it was 9.8% in the most deprived areas. I am alarmed at these figures. If someone has a certain amount of income, it means that they have to pay for their energy. However, someone who is deprived is under pressure to ensure that the energy, electric and heating levels in their house are at a certain level, so the impact on those in deprived areas is much greater than it is anywhere else.

Those from lower socioeconomic backgrounds are affected by renal failure in the same way as anybody else, but they do not have equal access to home dialysis and the freedom that that choice offers. I look to the Minister, as I always do, for a positive response on how we can take things forward constructively in a way that can deliver for dialysis treatment patients across this great United Kingdom. We need to address this issue on a UK-wide basis, and greater equality must be achieved. I am my party’s health spokesperson, so it is always a pleasure to speak in these debates and to highlight issues that are brought to my attention by people such as my friend Fiona Loud from Kidney Care UK.

Kidney disease costs the NHS more than breast, lung, colon and skin cancer combined. It has a greater financial impact. It is estimated to cost £1.4 billion a year—equivalent to £1 in every £77 of NHS expenditure. That is a massive figure and a significant expense, with 21 people developing kidney failure every day and almost 30,000 people on dialysis in the UK. Unfortunately, it shows no signs of slowing.

Photo of Margaret Ferrier Margaret Ferrier Independent, Rutherglen and Hamilton West

Acute kidney injuries usually come about as a complication from another illness, and they are more deadly than a heart attack. As the hon. Gentleman said, research indicates that about 30% of acute kidney injury deaths could be prevented with better care or treatment. Does he agree that this is an area that requires urgent attention, looking at kidney disease outcomes in the round?

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

I thank the hon. Lady for those wise words, and I absolutely agree with her. She is right. We should never be guided entirely by finance, but we cannot ignore the financial implications. If we—by which I mean the NHS—could better use the moneys for early intervention, early diagnosis and early medical action, and reduce the cost, that would be beneficial to the NHS.

The clinical and cost benefits of home dialysis are well established, but despite 17 years having passed since the National Institute for Health and Care Excellence first highlighted its ambition for just 15% of patients to take advantage of home haemodialysis, as many as eight out of 10 dialysis patients are still treated in centre. That is a big challenge, but it is something I believe in, and I am confident that the Minister can embrace that challenge and give us some idea of how we can move forward in a positive fashion to deliver even better.

Some of those people will have successful transplants, although a transplant is only a form of treatment, not a cure. I have a particular interest in this matter because I have a nephew called Peter Shannon, born with a kidney the size of a peanut, or the wee nail on my finger. I remember when my boys were running about—obviously, young boys or young girls are always full of life, but he never had the energy. He was always a terrible colour—yellow, the colour of a bowl of custard—and he never really moved forward physically until he had a transplant at the age of 16. When he had that transport, his life transformed; if only that were possible for everybody, but it is not. I have been a great supporter of organ transplants all my life, and I am very pleased that the Government accepted the legislative change to make everybody a donor unless they opt out. I was always in favour of that legislation. In Northern Ireland, my party —the Democratic Unionist party—had perhaps not truly embraced it in the past, but it has now. I cannot say I am a pioneer in the party, but I am pleased that that legislation has also been endorsed by the Northern Ireland Assembly.

Many other dialysis patients will have no choice but to dialyse to replace their kidney function and to stay alive. The majority will do so three times a week at a hospital or clinic, every week for the rest of their lives, because once a patient starts dialysis, they are on it forever unless they receive a transplant. Across this United Kingdom there are nearly 30,000 people, from young to old, on dialysis. They come from all walks of life and are united by a remarkable strength and resilience to continue with this long-term, gruelling, life-saving medical treatment.

When dialysis is needed, in an ideal world the patient and their care team will consider and decide together whether to dialyse at home or in-centre. There are two forms of home dialysis therapy, with haemodialysis being the most common. Tubes are attached to needles in the arm or via a line to the neck, with blood passing through an external machine that filters the toxins and water from the blood before returning it to the body—it is almost like a cleansing process, but medically. Suitable patients can safely undertake that procedure themselves at home, carrying out sessions that meet their clinical needs to a routine that fits their lifestyle, including overnight while they sleep. In peritoneal dialysis, which is the other form of therapy, a catheter is placed into part of the abdomen via a surgical procedure.

Since its introduction in the 1960s, most dialysis care is delivered in-centre, with patients required to travel to a hospital three times a week for four hours of treatment. Many patients who dialyse in-centre benefit from the care of the UK’s excellent nephrologists, nurses and support staff, and from a sense of community with others receiving dialysis. However, that treatment is more intense over a shorter period of time, which might not suit everybody. It can be extremely draining, and it often leaves patients feeling physically exhausted as the body is pushed so hard during those treatments, and their toxin and fluid levels build up again immediately while they face a long wait until their next dialysis session. As a result, those patients must adhere to strict fluid and diet restrictions, and they must also travel to and from their dialysis centre, which is a time-consuming and often exhausting experience.

I visited the dialysis renal unit at Ulster Hospital in Dundonald some time ago. It is a new centre, and I met many of the people there. I knew two of those people personally. One was Billy McIlroy, who passed a few years ago. He went there for his dialysis treatment three days a week, which I know kept him alive. Another guy called David Johnson also attended that dialysis unit. He got a kidney transplant eventually, so his life changed greatly. I had already been given the details of what happens in dialysis, but actually seeing it showed the reality—it gave a physical understanding—of what those people were going through three times a week. For them, travelling from home and going home again was six hours of their day.

Photo of Margaret Ferrier Margaret Ferrier Independent, Rutherglen and Hamilton West

On that point, the impact of kidney disease and treatment on patients’ mental health is huge. Good mental wellbeing can make a big difference to a patient’s recovery and ability to withstand difficult treatment. Does the hon. Gentleman agree that ensuring patients have access to mental health support is paramount to improving outcomes, and that the NHS must be better resourced to provide that?

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)

I thank the hon. Lady for reminding us all of that. We often focus on the physical aspects of this condition, as we should, but we must also remember the mental health and anxiety issues that come alongside it. Patients suffer with uncertainty about how they are going to feel the next day, uncertainty about their future health, and uncertainty about their personal and financial issues and their family. The hon. Lady is right to remind us of that point.

By comparison, home dialysis therapies offer flexibility and have been shown to have a positive effect on a patient’s health. When patients dialyse more regularly, they are more effectively replicating the natural function of the kidneys. Studies have shown that longer, more frequent dialysis sessions, undertaken at a schedule of the patient’s own choosing, achieve better results than a thrice-weekly in-centre schedule. People doing alternate-day dialysis have been shown to experience fewer symptoms, such as shortness of breath, high blood pressure and left ventricular heart damage. People on home haemo- dialysis have an up to 13% lower risk of death than those on in-centre haemodialysis. That shows that if people can do more home treatment, we can improve their longevity. NHS England has acknowledged the limitations of standard in-centre haemodialysis, and in particular the increased risk of hospitalisation or death after the weekly two-day break between in-centre sessions.

Margaret Ferrier is right about the importance of mental health. Depression is the most prevalent psychiatric illness in patients with end-stage kidney disease, and she made that point powerfully. One study shows that rates within the dialysis population vary from 22.8% to 39.3%. Wow—those are big figures, and they show what the condition does. Studies have also shown that depression is a significant predictor of mortality in dialysis patients. That is particularly important for younger people on dialysis, who report a lower quality of life than young adults in general.

People who have the choice of dialysing for as long as they need and at a time of their choice have freedom and control. They can also better respond to their body’s reaction at that time, in the comfort of their home and with the reassurance of their family around them. Home treatment probably addresses some of the issues of depression and mental health issues as well. It enables patients to have a life outside their dialysis schedule and hold down a job. It allows them to have a normal life and pursue the dreams and ambitions that should be the right of any person, young or old. I can attest to that through my nephew, Peter Shannon, who has had an organ transplant. I have seen his life change. He bought his first house just last week, incidentally, at probably the highest time for house prices in the whole United Kingdom.

In the last 18 months, covid-19 has exaggerated the negative impact of differences in dialysis care, and heightened the need radically to increase home therapy provision. Analysis from the UK Renal Registry has demonstrated that the relative risk of death associated with covid-19 among in-centre dialysis patients was much higher than that of the general population in England, especially among those of a younger age.

The UK kidney community has been calling for patients to be provided with greater choice in their dialysis care, recognising the need for increased awareness and education around home therapies and greater equity of access across the country. In the UK, however, the overall percentage of dialysis patients receiving home therapies has increased only from 3.4% in 2011 to 7% in 2022. Although that has doubled, it is a long way off the figure of 15%. It needs to double again, and I think, respectfully, that the Government should set a higher target.

In 2021, the NHS’s Getting It Right First Time programme recommended that a minimum of 20% of patients in every dialysis centre should be on home dialysis. It set that target, and NHS England’s Renal Services Transformation Programme is working to increase the provision of and access to home therapies, in line with recommendations made by Getting It Right First Time.

Although there are dialysis centres exceeding the target, which we welcome—it is not all negative; many are trying to achieve those targets and goals—GIRFT’s own report highlighted that 33 out of 52 centres in England have not yet met the target. Again, I respectfully ask the Minister—she knows I do this constructively; I just want to get the stats so that we can understand the problems and how to do things better—to tell us what has been done to increase the number of those 33 out of 52 centres that have not yet reached the target. The Getting It Right First Time target of a 20% prevalence rate for home dialysis compared to in-centre care could be transformative for patients, and could deliver considerable cost savings for the NHS at a time when they are desperately needed. We can do the treatment better, deliver the medication and dialysis better, and we can do it for a better price. That seems to me to be good value.

To address adequately the low uptake of home care, a review of dialysis reimbursement should take place to ensure that training and educational needs can be met, and to incentivise higher frequency dialysis at home, such as alternate day treatments to support all dialysis centres to meet the 20% target. What steps are the Government taking to reach that 20% target? It is essential that clinicians are offered the tools needed for them to meet the GIRFT targets in an effective manner, such as providing staff and patients with detailed, unbiased education to empower them to make informed decisions about their dialysis. I see it—as I often do—as a partnership, with clinicians working alongside Government policy and patients to do better.

One of the most pressing issues facing people who receive treatment at home rather than in hospital is the rising cost of fuel and energy. I referred to that at the beginning, and there are three points that I wanted to make. People receiving dialysis at home are at particular risk from rising energy costs. The figures that I cited, and the question asked by the Leader of the Opposition at yesterday’s PMQs, gives an indication of the issue. There seems to be an uncertainty, and perhaps a postcode lottery, as to where there is help for energy costs, but the figure that I gave of £118 per month for a child, or whatever it is, but that now costs £350, indicates that there is a way to go yet. Dialysis machines, with their high energy consumption, keep people alive. Dialysis treatment at home adds between £593 and £1,454 to utility costs per year, and that is before this year’s 54% energy bill rise.

One effect of dialysis treatment is that many patients frequently feel cold due to the associated anaemia and the process of dialysis, so they need to heat their homes more often and for longer during the year. When we feel warm, they feel cold. When we feel exceedingly warm, they might feel normal. There are not many times in the year in this great United Kingdom of Great Britain and Northern Ireland when we have Mediterranean heatwaves, so for the dialysis patient, feeling cold is almost an everyday occurrence. We do not want people to have to decide between giving up the freedom and independence that home dialysis gives them, and going into a hospital setting just to save costs. Again, I ask the Minister urgently to address that matter, because the barriers to employment for people on dialysis, posed by frequency and length of treatment, and the physical toll and intense fatigue, already compound financial insecurity for home dialysis patients.

The NHS service specification advises that NHS trusts reimburse the additional costs of home dialysis, but reimbursement is inconsistent across the country, and many patients receive no or very little financial support to pay for the additional costs of treatment. For most home dialysis patients, the £200 repayable relief on energy bills and council tax deduction will simply not be enough, and a special, specific provision is needed. It is regrettable that the spring statement was a missed opportunity for the UK dialysis community. Consistent reimbursement, longer-term capped tariffs for vulnerable groups and immediate financial support are urgently needed. Again, I look to the Health Minister and the discussions that she has with her Secretary of State for Health, and ultimately with the Chancellor, to ensure that we can deliver extra, specific financial help for those on dialysis treatment.

Many in the kidney community feel that their voices have been unheard in Westminster for too long, and when a friend from the kidney charity asked me to secure this debate, I was very pleased to do so. I think that today’s debate does two things. It raises awareness—that is No. 1—but it also directly asks the Minister to become involved and address some of the anomalies. I welcome the re-establishment of the all-party kidney group. Its work, led by Brendan Clarke-Smith, aims to promote improvements in the health and care services that are available to improve the health of people with renal failure.

I call on the Minister to respond to calls from voices in the renal community to support them, and ensure that a straightforward, accessible system is in place to enable people on home dialysis to be reimbursed for the additional cost of utilities, as set out in the UK Kidney Association guidance. Would the Minister perhaps be agreeable to that request? If I may, I would ask for a meeting on behalf of the APPG—perhaps the chair of the APPG, our friend and colleague, would do that—because then we could look at some of those issues. Those who are involved in this debate might wish to attend that meeting as well. NHS tariff payments for home dialysis must be sufficient to cover all associated costs, including reimbursement for additional utilities usage that should and must reflect current price increases. Again, I look to the Minister to pledge to work with energy companies, and the Chancellor to develop capped tariffs for people on medical treatments at home, such as dialysis.

Renal units should proactively offer support to all patients undergoing dialysis, to build their confidence and ensure that they are dialysing in the right way for them at the time. Again, Minister, we need to address the low uptake of home dialysis by implementing a review of the dialysis reimbursement tariff—I think we referred to that in the discussion that we had outside the Chamber, and I look forward very much to the Minister’s response. We must also ensure that training and educational needs can be met, and incentivise higher-frequency dialysis at home, such as alternate-day treatments, to support all dialysis centres to meet the 20% target. Let us meet that target. Let us do it here and back home as well, and achieve the significant cost savings that home dialysis can bring.

I will close with this comment: it is vital that all renal unit staff receive updated training to build their home dialysis knowledge, in order to help find solutions to the issues facing patients, and so that information for patients about transitioning to home therapies is standardised and includes details on the practical and financial support available. I place on the record my thanks to all renal staff. They do magnificent work; they are saving lives and they are keeping people alive. It is wonderful, and we thank them for it. The support available should also include a consistent approach to utility bill contributions from the NHS, in order to ensure equality for every renal dialysis patient across this great United Kingdom of Great Britain and Northern Ireland. The Government must ensure that educational resources are also provided to local authorities and trusts, enabling them to respond appropriately to the needs of people in their area who want to choose home therapies.

Thank you very much, Sir George, for the chance to raise the issue of dialysis treatment and bring it to Westminster Hall in a way that, I hope, both raises awareness and lets people out there on dialysis treatment know that we in this House care for them—I believe we do—and that we are seeking change. I look forward very much to other contributions in the Chamber today, but I look forward particularly to the response from the Minister.

Photo of Kenny MacAskill Kenny MacAskill Alba, East Lothian 3:28 pm, 19th May 2022

It is a pleasure to serve under your chairmanship, Sir George. First, I pay tribute to Jim Shannon for securing this debate and for putting forward such an eloquent statement, including the passionate and compassionate testimony. There is something about oral testimony. Whether it is as an elected Member or, indeed, a Minister, if we can actually see something, or hear or feel it, that is much more powerful, no matter how good a briefing may come from an individual, a member of our staff, or indeed an able civil servant. The comments regarding Peter Shannon and his family hit home.

I think that we were all aware, even before we were briefed on this issue or became elected Members, that people with kidney and renal disease suffer greatly. It is life threatening. Clearly, once someone is on dialysis, that is a significant issue. Not only is it life threatening if they do not obtain the treatment, but the treatment itself is life changing, not only for the individual—their life circumstances change in deeply restrictive ways, including through a loss of employment, as the hon. Gentleman said—but through its impact on other members of the family. Treatment can require family members to change their employment situations, and it can affect youngsters who perhaps do not get the same parental attention that would be available to others.

The hon. Gentleman eloquently put forward many points that I support and sustain. We are all largely on the same side in the debate. Nobody enters party politics or, indeed, comes to Westminster, to make their constituency worse off or endanger the livelihoods of their constituents. I will make some points on which I have differences with the Government, however. There are Governments in other countries who do not share my political hue or perspective—they are probably closer to right-of-centre than the UK Government—but who have policies that I will suggest later. I want to touch on two aspects of the debate: first, the difficulty people have in obtaining treatment for themselves or their children, and secondly, the difficulties faced by those undergoing home dialysis treatment, who the hon. Gentleman correctly mentioned.

The travel problem is a constituency issue, as the hon. Gentleman said in his speech. A constituent of mine—a Polish woman trying to sustain her life and her family—came to see me because her child requires dialysis treatment. In Scotland, it is difficult enough to get dialysis treatment for adults, but for children it can take place only in Glasgow or Aberdeen. She lives in East Lothian, and taking her child to Glasgow would mean travelling a considerable distance. He cannot go on his own; he has to be taken by his mother or father, who would have to take time off work. That affects the wider family and creates costs.

That is not a matter for the Minister but for the Scottish Health Secretary, and I have written to him and await a reply. At the present moment, treatment is a postcode lottery. Some health boards are particularly generous; others are entirely lacking. For my constituent in Musselburgh, trying to get treatment is financially draining, extremely difficult, and traumatic—not just for her son, but for her whole family. These matters have to be addressed along the road. I have no doubt that similar issues in England must be considered, and the Minister will no doubt consider them.

Home treatment has been worsened by covid—in mental health terms—and by the fuel crisis, which is causing real difficulties. At the moment, there is an entirely spurious euphemism about people “self-disconnecting.” There is no such thing as self-disconnection. People are not saying, “I’m going to save for a holiday in Marbella, so I won’t put my power on”. As is often said, they have to choose between heating or eating.

For people on dialysis, the issue is far worse. It is not simply about access to heating, which is necessary—as the hon. Gentleman said, people feel the cold more when they are ill—but about access to power. Power means that people can charge their mobile phones so that they can call 999 if there is a significant problem; it means that they can wash their clothes in the washing machine if they have to go to the doctor’s or to hospital and want to uphold their decency and values by looking smart and presentable; and it means that they can afford to keep their dialysis machine on when it is ratcheting up the costs. The euphemism of “self-disconnection” is an entire fraud. There are significant issues for those who are on dialysis.

As the hon. Gentleman pointed out, people in deprived areas tend to have treatment elsewhere rather than at home. There is a reason why: most people on prepayment meters are unable to access a dialysis machine. I can understand why restrictions are imposed and why it is difficult, but that is fundamentally wrong. They should be able to access machines. The way to solve the problem is to level the charges for those on prepayment meters—not just the most deprived, but those who live in private tenancies and who have those meters forced on them. At the moment, those on prepayment meters pay a higher standing charge and a higher tariff even though they have lower incomes—that is perverse. There is no technical impediment to power companies levelling the charges, and it could be dealt with. It requires Ofgem to take action and the Government to impose it, so that is my point on prepayment meters.

I subscribe to aspects of work done by other countries, even by those that do not have a left-of-centre position. Other countries bring in social and disability tariffs, so that those who have least or who are sick can be charged at a lower rate. Belgium, for example, operates a system where the third of people with least are charged at a lower rate, and other countries have circumstances where people who receive dialysis can get financial support.

At present, the financial support provided in this country is haphazard and goes nowhere near meeting the costs required to run and operate a dialysis machine. On that basis, there has to be political change and the Minister has the power to provide that. It is not a matter of blaming Ofgem, because Ofgem takes its directions from the Department for Business, Energy and Industrial Strategy. It is those decisions that have to change.

We all agree that we have to provide greater sympathy and mental health support, as well as better access for people to get to treatment centres, but, fundamentally, those being treated at home have to be able to pay for the treatment they require.

Photo of Feryal Clark Feryal Clark Shadow Minister (Health and Social Care) 3:36 pm, 19th May 2022

It is a pleasure to serve under your chairmanship, Sir George. I congratulate Jim Shannon on securing this important debate and on his continued advocacy on the issue. He is a voice for issues that often do not get enough time in this place.

I thank the hon. Gentleman for sharing the experience of his nephew, Peter, because experiences help to paint a picture of how these conditions impact on real people’s lives. Yesterday, I was delighted to meet two kidney patients, Dale and Tejal, through Kidney Research UK, who told me about their experience of suffering with kidney disease and of dialysis, and about the impact that is having on their life.

I praise the important contributions made by the hon. Members for Rutherglen and Hamilton West (Margaret Ferrier) and for East Lothian (Kenny MacAskill). It is a pleasure to have the Minister in her place. It is the first time we have had an exchange in a debate in Westminster Hall, so I welcome her today.

I pay a huge tribute to the fantastic advocacy undertaken by charities such as Kidney Care UK and Kidney Research UK. They are great champions for patients and will no doubt have been a support to colleagues in their preparation for the debate.

As we have heard, today’s debate is particularly timely, given that tomorrow marks the second anniversary of the law that changed organ donation to an opt-out system. That change has made, and will continue to make, a massive difference for patients with kidney disease and other conditions, and it is right that we recognise that.

In the UK, some 3.5 million people, and rising, are living with kidney disease, so we cannot afford to ignore the issue. We know the debilitating effect that living with kidney disease and undergoing dialysis can have on patients. As the hon. Member for Rutherglen and Hamilton West said, it is not just the disruption that it causes to their everyday lives that we must consider, but the physical and mental consequences of living with a long-term condition.

Unlike treatments for conditions such as cancer and heart disease, treatments for kidney disease, such as dialysis, have barely changed in the last few decades. For patients living day in, day out with the effects of dialysis, that lack of progress is simply not good enough. Research led by Kidney Research UK has shown that new developments in treatment, such as high doses of intravenous iron, can make a real difference to patients.

Sadly, such new developments are not being delivered uniformly across the UK, leading to the kind of postcode lottery that affects so many long-term conditions. It is no surprise that those who are already the most vulnerable are the worst-off when it comes to being able to access treatment at home. The hon. Member for Strangford highlighted that point, and we place further emphasis on it because of the stark health injustice facing people in this country. The rate of patients receiving at-home treatment was almost 23% in the most affluent areas of England, compared with 15% in the most deprived areas.

We know that people from lower socioeconomic groups are more likely to develop and die earlier from chronic kidney disease. We also know that when people from those groups experience kidney failure, they have poorer survival rates on dialysis and fewer are treated with peritoneal dialysis. That inequality extends to lower rates of kidney transplants and increased rates of transplants being affected by episodes of rejection.

Those inequalities are stark and cannot and should not be tolerated. We can and must do more to ensure that everyone, regardless of their background, can access the treatment that works best for them, including being able to dialyse at home. For too many people, at-home dialysis is just not an option.

People with chronic kidney disease, for which there is no cure, already experience financial difficulties because of barriers to employment and additional costs of disability. With utility bills soaring, people have to shut off their heating or skip meals just to be able to afford to continue their vital treatment, as colleagues have mentioned. Figures from Kidney Care UK show us that the additional cost for a dialysis patient doing five overnight sessions a week is £1,454. That was before the energy price cap increased in April. As hon. Members have already set out, that is a stark increase in bills. Energy prices are already soaring and are set to rise even further when the cap rises again in October. What assurances can the Minister give to dialysis patients who face those added pressures that they will be protected from the cost of living crisis, here and now? Some 30,000 people in the UK rely on dialysis to stay alive. They cannot afford to wait.

Just yesterday at Prime Minister’s questions, we heard the Prime Minister reassure patients that the NHS is responsible for covering the costs for at-home dialysis patients. Sadly, that simply does not chime with the experiences of dialysis patients up and down the country. Although the NHS service specification advises that NHS trusts reimburse the additional costs of home dialysis, reimbursement is inconsistent across the country. Many patients receive no or very little financial support to pay for the additional costs of carrying out treatment at home. Some do not even have the luxury of having the option of a reimbursement scheme discussed with them; they are simply left to fend for themselves.

There are some wonderful charities supporting patients living with kidney disease and on dialysis. The work they do to support patients is incredible and invaluable. Kidney Care UK handed out more than half a million pounds-worth of grants to patients and their families in 2021. In that time, they saw a rise in demand of 47% for their immediate hardship grants of £300. Patients are having to rely on charities to be able to fund their bills to pay for treatment, because the Government are not implementing their own policy properly. This is simply not acceptable and it must be changed.

Millions of our disabled, elderly and vulnerable neighbours are at the sharp end of this crisis. They simply cannot afford to live with dignity. Many are living through this nightmare, feeling like they have been totally abandoned by the Government. Labour’s plan for a windfall tax on oil and gas companies would take up to £600 off household energy bills and put it back in people’s pockets. I am sure the Minister will have heard yesterday, and many times before, that that will make a real difference to people on dialysis. It will make a difference now.

Many Ministers have been asked this, but I am asking the Minister today: will she back Labour’s plan for a windfall tax? Patients on dialysis deserve better security and the respect of the support they are entitled to. It is time for the Government to deliver. I look forward to hearing the Minister’s response.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care) 3:46 pm, 19th May 2022

It is a great pleasure to serve under your chairmanship, Sir George. I would like to begin by thanking Jim Shannon for securing a debate on this important issue and for his kind words.

I heard his impassioned case for improving outcomes for patients receiving kidney dialysis treatment. I also appreciate how kidney health is an issue of personal importance to the hon. Gentleman. It was very moving to hear the story of his nephew, Peter, who required a kidney transplant and happily got one when he was 16, after being born with posterior urethral valves. Kenny MacAskill mentioned how important it is in this place to share those stories. It really brings the debate to life. It shows why we are here, and why this matters.

We heard other moving stories from across the House. We heard about the stresses and strains that chronic kidney disease and dialysis treatment put on lives. We heard about Billy McIlroy and David Johnson from the hon. Member for Strangford, and about Dale and Tejal from Feryal Clark. They spoke about the impact the treatment has on the lives of those around the patients. I would like to thank all Members for giving those patients a voice and making their stories real to us all.

I also recognise the fantastic work being done by charities, including Kidney Care UK, Kidney Research, the National Kidney Federation and the Polycystic Kidney Disease Charity, on behalf of people living with chronic kidney disease and their families. They are ensuring that issues such as those covered today are kept at the forefront of our thinking. That is why such debates are so important. I would particularly like to commend those charities for their recent work supporting World Kidney Day, which raised awareness of the issues faced by those with chronic kidney disease. I also commend Kidney Care UK’s campaign on the impact of the rise in energy costs on those who undergo dialysis at home. It is a very important matter.

I would like to reassure the hon. Member for Strangford that the Government remain absolutely committed to improving both access to and the quality of dialysis treatment that many kidney patients across the UK depend on, in particular to ensure that treatment at home is available to those for whom it is suitable, which we heard about today. The Government are working closely with NHS England to implement the renal services transformation programme, which was commissioned in September 2021, following specific recommendations published in Getting It Right First Time’s national report on renal medicine mentioned by the hon. Member for Strangford.

The aims are to reduce unwarranted variation in both the quality and accessibility of renal care, which the hon. Gentleman mentioned. One of the key priorities of the transformation programme is to increase the provision of home dialysis, with the aim of increasing the percentage of patients per renal centre receiving home therapies to 20% in each renal centre. That target of 20%, which was mentioned, is still in place, but several centres have actually exceeded that target and gone beyond 30%.

However, the Government acknowledge that there is a concentrated drive within the renal community for increasing access to at-home dialysis treatment, and for good reason. We heard some of those reasons. Home dialysis has the potential to deliver significant benefits for patient experience and outcomes, giving patients both flexibility and autonomy in their treatment. By investing in home dialysis so that patients do not need to make long and disruptive trips to hospital for regular treatment, local systems will be able to deliver better experiences and outcomes for patients and reduce spending on the transportation of patients to hospital dialysis centres. That makes sense, and we will of course ensure that those services are available to all people from all backgrounds. It is very important that they are equally available across the country.

A range of guidance, produced by the National Institute for Health and Care Excellence, is available for commissioners and clinicians to support patients’ access to home dialysis treatments when appropriate for the individual. Patients and their family members or carers should be involved in the decision-making process, alongside healthcare teams, when considering treatment options, and should be offered regular opportunities to review their treatment and discuss any concerns or changes in preferences. That includes a choice of at-home or in-centre dialysis modalities to ensure that the decision is informed by both clinical considerations and patient preferences.

In support of that, NHS England has set up 11 renal clinical networks, which are working closely with integrated care systems to determine local priorities. Providers of renal services, ICSs and regional commissioners will continue to monitor uptake of home dialysis via the UK renal registry and NHS England renal datasets. The transformation programme has also appointed a national clinical adviser specifically for dialysis, to develop and share best practice. The programme will provide recommendations to all renal services to support achieving the 20% prevalence rate.

The Government know that the impact of rising energy costs is a concern for many. I share the concern, raised in today’s debate and by patient charities, that those undergoing dialysis treatment at home may be particularly vulnerable to the impact of rising costs due to the high energy consumption of the dialysis machines that they rely on for their treatment.

I am pleased to be able to provide reassurance, as the Prime Minister did in PMQs yesterday, that provisions are already in place for patients receiving haemodialysis treatment at home to be reimbursed for additional direct energy costs as a result of their treatment. The arrangements are outlined in the “Haemodialysis to treat established renal failure performed in a patient’s home” service specification, and the NHS meets those additional direct utility costs through the payment of the national tariff to the patient’s usual dialysis provider.

There is no national policy on determining the amount to be reimbursed to patients, with costs to be agreed between the provider and the individual based on the amount of energy used and charged. However, the amount reimbursed is expected to match increases in the patient’s utility tariff. We fully expect providers of at-home dialysis services to inform patients about that financial support available to them, and I have asked my officials to keep me informed about rates of reimbursement over the coming months, to ensure that the policy is working well. I would also be delighted to meet with the APPG, where we can discuss this further and ensure that that progress is being made.

NHS England is working closely with renal networks to support consistency of approach regarding the reimbursement arrangements. That work has already commenced, with NHS England providing clinical networks with examples of formulas to calculate electrical outputs from dialysis machines to support that reimbursement for patients. Examples of good practice in supporting utility costs from dialysis centres have also been shared across renal networks during April 2022, so very recently.

NHS England has also agreed to communicate directly to all commissioned providers of home dialysis, and renal clinical networks, to remind them of the reimbursement arrangements within the adult service specification and that they should proactively alert eligible patients to the arrangements.

The hon. Member for Strangford also mentioned support for children on home haemodialysis.

Photo of Feryal Clark Feryal Clark Shadow Minister (Health and Social Care)

I thank the Minister for giving way. The issue with a lot of the reimbursements is that renal patients are having to wait months—three or four months, in some cases—for that reimbursement. They are being treated as if they are a company that has put in a claim to the trust. Will the Minister ask NHS England to look into that and see if it can reduce that wait, or have a set time, so that people are not having to wait three or four months to be reimbursed? In this cost of living crisis, they need the cash back in their pockets quickly.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care)

The hon. Lady makes an important point. Hopefully the best shared practice includes that reimbursement should be paid very quickly. Clearly, the billing systems that are in place across the various providers will differ. It is important to state that best practice when it comes to reimbursement is to do it as quickly as possible.

We were talking about home hemodialysis support for children. That applies to about 20 children, as of February 2022, and it is currently at the discretion of individual providers. However, the renal service clinical reference group has begun an urgent review of the reimbursement process for children. Hopefully that will give some comfort to the hon. Member for Strangford.

If people with chronic kidney disease and their families need further information, there are a range of resources available on the excellent Kidney Care UK and National Kidney Federation websites, including information on treatment options, financial support and other support services to help people live well. NHS England will continue its work with those charities and others to engage their support in promoting awareness of reimbursement options available for those on home hemodialysis. In terms of wider ambitions, the renal services transformation programme is developing optimal pathways, tools and resources that will transform the delivery of renal services across England. That will support better healthcare outcomes for patients undergoing dialysis treatment, and provide integrated care systems with a whole-patient pathway approach to commissioning renal services.

The hon. Members for Rutherglen and Hamilton West and for Enfield North both mentioned the importance of providing suitable mental health support for dialysis patients. The Government acknowledge that this is very important. There can be a detrimental impact on an individual’s mental health when undergoing complex dialysis treatment. To address that, the national adult renal services transformation programme has identified psychosocial support in renal services as a key theme for improvement. Work is being taken forward with clinicians, patient representatives and other subject matter experts to identify best practices that can support patients’ psychosocial needs, as well as the steps that are needed to spread those best practices. Those suffering with renal issues can also access mental health support via self-referral to Improving Access to Psychological Therapies, which the Government have invested £110 million in to expand access.

As the hon. Member for Strangford is aware, health policy is a devolved matter, and I understand that there are different arrangements for Northern Ireland, although commissioners and trusts remain equally committed to excellent care and better outcomes. The transformation programme has established a multi-agency programme board with representation from key stakeholders, including regional commissioners, patient charities and relevant national bodies, to ensure that a full range of views are considered. It has also established five expert-led multi-disciplinary clinical workstreams, including work- streams on improving access, identifying best practice and developing solutions in chronic kidney disease. All transformation programme workstreams intend to make key deliverables available by April 2023. That will include documentation outlining best practice, a data dashboard outlining key metrics to support better decision making, and support for the review of the renal service specification led by NHS England’s renal clinical reference group.

I was asked earlier what the Government are doing to fund research into kidney conditions and their treatment. We are committed to supporting research and funding it through the National Institute for Health and Care Research. For the financial years 2016-17 to 2020-21, the NIHR spent £113.2 million on kidney research. That research includes kidney disease, but also explored why people with kidney disease are at an increased risk of death and disability following a heart attack, the relationship between covid-19 and kidney disease and whether aspirin reduces the risk of major vascular events in patients. There is a full research programme ongoing.

Once again, I extend my continued gratitude to all charities working to support improved outcomes for people with chronic kidney disease. We are very happy to continue to work with them; we all have the same objective.

Finally, I thank the hon. Member for Strangford for securing the debate and giving me the opportunity to promote the vital schemes that are available to support patients with chronic kidney disease, to make sure people know what is coming next and are aware of the financial support available to them, and to outline the strong programme of work we are undertaking across the country to transform these services. I urge all patients receiving dialysis at home to speak to their provider so that they receive the full NHS support they are entitled to through their care.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health) 4:00 pm, 19th May 2022

I thank all hon. Members who have spoken, and I thank the kidney charities that the Minister and everybody else referred to very much for what they have done.

Margaret Ferrier made some very pertinent points about depression, mental health and the psychological impact that dialysis treatment has on people. The Minister very kindly referred to that in her response, and she outlined the case.

Kenny MacAskill referred to the travel costs of taking children to the few centres, and he talked about the impact that has on families. He said that dialysis patients have higher levels of treatment. He also referred to prepayment meters, which can prevent people from accessing home dialysis treatment to start with. I know that is not the Minister’s responsibility, but the hon. Gentleman highlights an issue. We all know the Minister is very thorough, and that she will pass on the issues that have been brought up but are not her responsibility to the relevant Departments.

The shadow Minister referred to the two kidney patients she met yesterday. She also thanked the charities and referred to the 3.1 million people living with kidney disease in the United Kingdom. As we all did, she underlined the need for equal treatment, access and cost reimbursement across the whole of the United Kingdom.

I thank the Minister very much for her comprehensive, detailed response to the issues. She referred to the 11 renal networks and the regional care systems that feed into the transformation programme recommendations.

All hon. Members referred to rising costs. Energy tariffs are not the Minister’s responsivity, but perhaps she will be able to refer that to the right person, whoever it may be. Hon. Members also referred to proactivity and the need to reimburse people. As we were sitting here, Fiona Loud, who is in the Public Gallery, sent me a wee note that said that at least some of the people are getting their money. Perhaps people are taking note of the fact that this Westminster Hall debate is happening, because people are getting their money out—there is a commitment.

All NHS trusts must act and respond better. We need to address the reimbursement of moneys as soon as possible. The shadow Minister referred to that. It is great that the Minister and the Government are setting a target of 20% for home dialysis. We want to see that target achieved.

I welcome the chance to communicate with the Minister outside with the kidney charities, to understand better what the real problems are. We have to thank the charities for their campaigns. The reason I have knowledge is half the time because of them. Without them, none of us would be able to deliver the details, as the hon. Member for Rutherglen and Hamilton West has done.

I always look forward to the future. We bring forward issues to the Minister, and then we look forward to the response. The response we have listened to today sets out a programme of events, strategies and visions for the future. We want to see things improve. We will probably regularly come back to the Minister—I hope we do not have to, but we may have to. If we do, we will do that collectively in a positive fashion. In my life, I always try to do things positively. We bring things to the Minister and say, “Here’s where the shortfalls are. Here’s where we can do better.” What we heard today from the Minister has given us some heart, hope and confidence for the future. On behalf of all kidney charities, on behalf of the patients out there and on behalf of us all, we thank the Minister. I thank you, Sir George, as always, for the excellent way you chair these debates. I appreciate it very much.

Photo of George Howarth George Howarth Labour, Knowsley

I thank the Front Benchers and the Back Benchers for the constructive and consensual way in which this debate has been conducted. It is a model of how we should conduct all our debates.

Question put and agreed to.

Resolved,

That this House
has considered dialysis care outcomes.

Sitting adjourned.