Dialysis Care Outcomes

Debate between Feryal Clark and Gillian Keegan

Thursday 19th May 2022 Westminster Hall

[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.