Dialysis Care Outcomes

Jim Shannon Excerpts

Thursday 19th May 2022 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

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, the hon. Member for Enfield North (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, the right hon. and learned Member for Holborn and St Pancras (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.

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

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?

[Jim Shannon]

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.

[Margaret Ferrier]

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?

[Jim Shannon]

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.

The hon. Member for Rutherglen and Hamilton West (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 the hon. Member for Bassetlaw (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.

--- Later in debate ---

[Jim Shannon]

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.

The hon. Member for Rutherglen and Hamilton West (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.

The hon. Member for East Lothian (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.

[Sir George Howarth (in the Chair)]

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.