Dialysis Care Outcomes

Feryal Clark Excerpts

Thursday 19th May 2022 Westminster Hall

[Feryal Clark (Enfield North) (Lab)]

It is a pleasure to serve under your chairmanship, Sir George. I congratulate the hon. Member for Strangford (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.

[The Minister for Care and Mental Health (Gillian Keegan)]

It is a great pleasure to serve under your chairmanship, Sir George. I would like to begin by thanking the hon. Member for Strangford (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. The hon. Member for East Lothian (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 the hon. Member for Enfield North (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.

[Feryal Clark]

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.

[Gillian Keegan]

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.