Increasing Home Dialysis in the Context of Covid-19 in the UK

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

January 2021

2021

Webinar Participants & Report Contributors

2

Chris Albas-Martin

Donna Blizard

Andrea Brown

Brian Child

Jyoti Jadav

Dr. Nitin Kolhe

Dr. Graham Lipkin

Prof. Sandip Mitra

Kirit Modi

Christine Price

Pete Revell

John Roberts

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

Increasing Home Dialysis in the context of Covid-19 in the UK National Kidney Federation (NKF) is a small but highly effective national charity. Established over forty years ago, it is still unique in several ways, with two main roles – patient support and campaigning.

They are the only UK support organisation run by kidney patients for kidney patients.

They provide the only national Helpline dedicated solely to renal patients, their families and carers, by providing a free-to-call service on 0800 169 09 36. NKF is the UK’s largest producer and distributor of kidney related medical information leaflets.

The NKF set up the All-Party Parliamentary Kidney Group (APPKG) made up of MPs and Lords to persuade government to provide better treatment for patients. The charity also works with the Department of Health, NHS Blood and Transplant, and the NHS to provide better treatment for patients suffering end-stage renal failure, and the three million people with chronic kidney disease.

CONTENTS PAGE

4 6 7 8 8 9 12 14 16 17 19 20 21 22 23 24 25 26

Introduction Impact of Covid-19 on dialysis patients Lessons from Covid-19: protection of home dialysis What is home dialysis?

The manifesto The position now Why is home dialysis important?

Barriers to home dialysis Home therapies and ethnicity Recommendations Appendices Derby experience Manchester experience The patient’s perspective The carer’s perspective Acronyms References Acknowledgements 3

2021

Introduction

The Covid-19 pandemic has required the National Health Service (NHS) to re-examine optimal service delivery and had already led to some immediate changes in practice. This includes the rapid development of remote and virtual outpatient clinics and an increased focus on kidney self-care at home. As the UK embraces subsequent waves, learning the lessons of how we responded in the spring and summer of 2020 is crucial.

The National Kidney Federation (NKF) believes that a key lesson of the first wave of Covid-19 to be the benefits of dialysis patients being treated at home with renal unit support as part of shared decision making by patients. The Covid-19 crisis has demonstrated the benefits of home dialysis and given us an opportunity to look at whether the proportion of kidney patients who dialyse at home could be increased. There were substantially lower rates of both Covid-19 infections and deaths among those who dialysed at home. Home dialysis reduces footfall in in-centre haemodialysis dialysis units and reduces the risks of cross-infection.

Increasing the proportion of home dialysis (peritoneal and home haemodialysis) could offer significant benefits to patients by reducing risk of Covid-19 and other infectious diseases. This report is urging the kidney community to step up and increase the home dialysis provision so that we can better protect dialysis patients from Covid-19 and other infections.

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It is not the first time the NKF has called for more focus on home dialysis. In 2013, the All-Party Parliamentary Kidney Group (APPKG), assisted by NKF, produced a manifesto for home dialysis which laid down some of the barriers to greater uptake and made a number of recommendations – www.kidney.org.uk/home-dialysis-manifesto.

The Kidney Health Delivering Excellence document, in which the NKF was an active participant, identifies increasing home dialysis as a core ambition – www.kidney.org.uk/kidneyhealth-delivering-excellence. The National Institute for Health and Care Excellence (NICE) also identified a recommendation to increase home dialysis therapies – www.nice.org.uk/ sharedlearning/bringing-the-benefits-of-homehaemodialysis-home.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

In September 2020, the NKF held a webinar looking at how things have moved on – or have not – since then and the impact of Covid-19 on dialysis patients – www.kidney.org.uk/hd-webinar. As well as an opportunity to review progress, participants were able to hear about the draft recommendations from the Getting It Right First Time (GIRFT) report on kidney services which is likely to be an important lever for improvements moving forward.

While the overall proportion of dialysis patients receiving therapy at home has remained stable, the proportion receiving home haemodialysis (HHD) has increased at the expense of falling peritoneal dialysis (PD). However, there is significant unwarranted variation of provision among renal units, which needs to change. We also have renal units which have been successful in increasing the number of patients dialysing at home. This report includes case histories from two exemplars, the Royal Derby Hospital and Manchester Royal Infirmary. The lessons from these units may provide a route for others to offer patients greater choice, backed up by education and support.

The NKF will use this report to campaign for change by working with others and is seeking support from the kidney community in doing so. We will monitor progress regularly and, with the help of the UK Renal Registry, publish annual reports on progress made in renal centres in increasing home dialysis provision in the UK. They are the only UK support organisation run by kidney patients for kidney patients. They provide the only national Helpline dedicated solely to renal patients, their families and carers, by providing a free-to-call service on 0800 169 09 36. NKF is the UK’s largest producer and distributor of kidney related medical information leaflets.

The NKF set up the All-Party Parliamentary Kidney Group (APPKG) made up of MPs and Lords to persuade government to provide better treatment for patients. The charity also works with the Department of Health, NHS Blood and Transplant, and the NHS to provide better treatment for patients suffering end-stage renal failure, and the three million people with chronic kidney disease.

At the heart of the push for home dialysis is the desire to see improved patient experience and outcomes. This report is a call to urgent action to support a substantial increase in home dialysis in the UK and includes seven recommendations on how this may be achieved.

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2021

Impact of Covid-19 on dialysis patients Dialysis patients were naturally concerned when the Covid-19 pandemic started; their immune systems can be weakened, making it more difficult to fight off infections and making them potentially more vulnerable to Covid-19 infection. These patients were unable to shield as in-centre dialysis patients are required to travel thrice weekly for haemodialysis (HD) in hospital or satellite units.

Patients chose to avoid mixing with other people as much as possible as well as taking precautions around hand hygiene, wearing masks and social distancing.

Data published by the UK Renal Registry, based on information up to 25th November 2020 in England, shows that:

3,115 (15.0 per cent) of ICHD patients were infected

by Covid-19 from a total of 20,715 ICHD patients in the UK (end of 2018), and 637 (3.1 per cent) died within 28 days of date of infection. figures for in Engl infected from a total of 4,306 patients Similar who dialyse at home those who dialysed at homewho aredialysed 229 (5.3atper cent) died.

This shows that patients home were able to p who were infected from a total of 4,306 patients better from Covid-19 compared to those who dialysed in centre. who dialyse at home in England, and 56 (1.3 per cent) who died. This shows that patients who dialysed at home were able to protect from Covid-19: protection of home dialysis This has exposed them to the risk of infection from Lessons themselves significantly better from Covid-19 both healthcare workers and other patients, as well compared to those who dialysed in centre. as through travel to the unit treating them. While units have taken precautions such as screening at 20% the start of dialysis sessions, infection rates among In-Centre Haemodialysis Dialysis (ICHD) patients 18% has been high.

16% 14% 12% 10% 8% 6% 4% 2% 0%

Home Dialysis

In-Centre HD

Infections (%) Infections (%) Deaths (%) Deaths (%)

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This is a significantly higher death rate than seen in the general pub Journal detailed how in London, up to 20th May 2020, 18.8 per cent

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

Lessons from Covid-19: protection of home dialysis This is a significantly higher death rate than seen in the general public: a blog in the British Medical Journal detailed how in London, up to 20th May 2020, 18.8 per cent of in-centre haemodialysis patients had developed Covid-19 and nearly a quarter of these had died. Although end-stage kidney disease patients made up just 0.01 per cent of the capital’s population, they accounted for 4.1 per cent of the mortality.

Kidney transplant patients – who are, on average, younger than dialysis patients – were better able to shield themselves and most of them had clinical appointments by phone or video during the first phase of the pandemic. However, kidney transplantation was severely reduced because of the overwhelming pressure of caring for Covid-19 patients in hospitals. Most renal units across the UK suspended their renal transplant programmes for the first time ever over the first wave. Dialysis patients, who would normally have received a kidney transplant, have remained on dialysis. Having a kidney transplant on average increases length of life, compared with remaining on dialysis and substantially improves quality of life (QoL) and health value. Despite this it is clear that the mortality of patients treated by dialysis is greater than those with a kidney transplant in spite of the immune suppressing therapies.

The NKF identifies that home dialysis offers the potential to save lives as compared to ICHD. Dialysis patients frequently suffer multiple co-morbidities and as such are extremely vulnerable. Treatment at home affords them a lower risk of catching Covid-19 – and potentially other infectious diseases. While home dialysis patients might still need to have a consultation with healthcare professionals at a renal unit, some of these could be replaced by phone or video, further reducing the risk of exposure.

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2021

What is home dialysis?

Haemodialysis involves inserting needles into a blood vessel, which are connected by tubes to a dialysis machine. Blood is transferred from the patient’s body into the machine, which filters out waste products and excess fluids.

The filtered blood is then returned into the body. Home haemodialysis involves the patient doing this at home, using a small machine set up in their home. This allows for more frequent dialysis than ICHD and can even be carried out at night with health benefits for kidney patients.

For peritoneal dialysis a permanent catheter is inserted into the abdomen and a dialysis fluid flows into the space, the peritoneal cavity. As blood moves through the peritoneum, waste products and excess fluid cross into the dialysis fluid. The dialysis fluid is then drained from the cavity. Patients often manage their own peritoneal dialysis, spending time each day draining the fluid in and out of their body: the rest of the time they can get on with life as normal. This is known as continuous ambulatory peritoneal dialysis.

Some patients use a machine to change the fluid, usually at night: this is known as automated peritoneal dialysis.

Assisted peritoneal dialysis is where healthcare staff comes into people’s homes to connect and disconnect lines for dialysis each night. This has proved to be very helpful with frail patients who might struggle to do these themselves.

The manifesto A 2013 home dialysis manifesto, produced by the All-Party Parliamentary Kidney Group (APPKG), working with NKF, called for a number of measures to improve uptake of home dialysis.

These included: • A national target for home dialysis uptake, supported by tariff changes which incentivises home haemodialysis and peritoneal dialysis. It recommends revision of the national service specifications from the NHS England (NHSE) Dialysis and Transplant Clinical Reference Group (CRG).

• Providers to offer patients robust information and a choice around home dialysis with regular assessment and consultation with them on preferred mode of treatment. Patient reported outcomes and patient experiences should be measured and become the main measure of success.

• Renal units should be audited on their home dialysis rates and this information should be published. Research into home dialysis should be prioritised looking at both clinical and patient perspectives – www.kidney.org.uk/homedialysis-manifesto.

A HOME DIALYSIS MANIFESTO INCREASING UPTAKE OF HOME DIALYSIS TO BENEFIT PATIENTS AND THE NHS

A report of the findings of the 2013 Home Dialysis Summit

Hosted by the All-Party Parliamentary Kidney Group

JMC Partners supported the NKF in organising this summit with unrestricted funding from Baxter Healthcare. Editorial control belongs to the All Party Parliamentary Kidney Group

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INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

*Providers to offer patients robust information and a choice around home dialysis with regular assessment and consultation with them on preferred mode of treatment. Patient reported outcomes and patient experiences should be measured and become the main measure of success.

The position now

*Renal units should be audited on their home dialysis rates and this information should be published. Research into home dialysis should be prioritised looking at both clinical and patient perspectives - www.kidney.org.uk/home-dialysis-manifesto.

The position now The number of patients needing some sort of renal replacement therapy – either through transplant or dialysis – has been increasing by three to five per cent a year over the last few years. Much of this growth has been in transplants – although 2020 may be exceptional, as many were delayed due to The number of patients needing sort risk to patients haemodialysis asfrom a more cost-effective way of the impact of Covid-19 on hospitals and thesome increased of infection a hospital of renal replacement therapy – either through providing dialysis and recommended expansion, stay.

transplant or dialysis – has been increasing suggesting that 15 per cent of patients could dialyse by three to five per cent a year over the last at home. from NICE in October 2018 The remainder of the patients will be undergoing either peritoneal dialysisGuidance or haemodialysis, either fewin years.

Much said that patients should be offered a choice over at home, a kidney unitoforthis in agrowth satellitehas unit.been in transplants – although 2020 may be where and what treatment they have. The NHS’s Sinceexceptional, 2002, the National Institute fordelayed Health and (NICE) has Plan advocated home in 2019 – stressed giving as many were dueCare to ExcellenceLong Term – published the impact of Covid-19 on hospitals and the control back to patients and people taking more haemodialysis as a more cost-effective way of providing dialysis and recommended expansion, increased risk patients of infection fromat home. Guidance responsibility for their own health. suggesting that 15 perto cent of patients could dialyse from NICE in October 2018 Dialysis at home a hospital stay. would fit into this. said that patients should be offered a choice over where and what treatment they have. The NHS’s Long The Termremainder Plan – published 2019 – will stressed giving control back toprogress patients and people taking of the in patients be undergoing But on increasing the numbers of those peritoneal dialysis orhealth. haemodialysis, at home has been slow – and now appears moreeither responsibility for their own Dialysis ateither home wouldtreated fit into this.

at home, in a kidney unit or in a satellite unit.

to have stalled. Data from 2019 shows that overall

But progress on increasing the numbers of those treated at home has been slow – and now appears around 7 per cent of all dialysis patients dialyse at Since 2002, the National Institute for Health and per cent are on home haemodialysis and to have stalled. Data from 2019 shows that overall around 7 perhome; cent of2all dialysis patients dialyse at Care Excellence (NICE) has advocated home per cent on peritoneal dialysis. home; 2 per cent are on home haemodialysis and 5 per cent on 5 PD. 25

% RRT patients

20

15 Satellite HD Hospital HD CAPD

10

APD HHD

5

0 2008

2009

2010

2011

2012

2013

2014

2015

2016

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2018

2019

Year

The graph above shows that the proportion of those who dialyse at home has plateaued. There remains very significant variation between renal centres. While no patients receive their dialysis at home under the care of some centres, 16 per cent of the patients the Royal Derby Hospital do so, for example.

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2021

The position now This variation between the rates of home dialysis in renal centres is too large to be accounted for by variations in the patients they treat. The national renal draft GIRFT report, of which Dr. Graham Lipkin is co-lead, includes visits to all 52 adult English renal centres and analysis of data from the Renal Registry linked to Hospital Episode statistics and surveys of practice to produce individual unit reports. The references to the GIRFT report are based on the draft report and the final report may include some changes.

This report identified a number of areas of unwarranted variation: • Patient involvement in shared decision making.

There were differences in the extent to which patients were involved in making decisions about their own care which could not be explained by patient factors alone e.g. differences in patient demographics.

• Access to home therapies. There was substantial significant variation between centres in the proportion of patients who started on and then continued therapy at home. It is likely that some patients, given advice and support in a shared decision making approach, would have chosen home dialysis treatment but did not get the chance.

• Vascular access for haemodialysis. There is substantial variation between centres in how this is provided.

• Quality improvement support and leadership.

NHS organisations vary in what access staff have to quality improvement tools and support to innovate within their own practice.

The draft GIFRT report found that about 21 per cent of patients started renal replacement on home dialysis – either peritoneal or home haemodialysis.

But, out of the 52 units, there were significant outliers at both the top and the bottom of the range. Some of these outliers were at 40 per cent of patients starting to dialyse at home while one was at zero. “It is extremely unlikely that this degree of variation is explained purely by patient factors,” says Dr. Lipkin.

Dr. Graham Lipkin

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Figures for those continuing on home haemodialysis averaged 17 per cent with 14 units being low outliers and 11 being high ones. Nearly two thirds of units (33 ) were below 20 per cent. Overall, 13 per cent of patients were on peritoneal dialysis.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

Variation in Prevalent Home Dialysis 45.0 40.0

Dotted lines show 99.9% limits Solid lines show 95% limits

35.0

• Same pattern • Mean 17% (10–40%) • 14 units low outliers • 11 units significantly high • 33 centres below 20%

% Patients

30.0 25.0 20.0 15.0 10.0 5.0 0.0

0

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1600

Number of prevalent home dialysis patients 2018

However, Dr. Lipkin told the NKF webinar there was now a great opportunity to bring about change.

Commissioners were aware of the cost of renal care and that there was great variation in the care patients received. In units around the country, there was a strong desire amongst clinicians and patients to further improve care.

NHS England has a renal service transformation programme. The need for transformation of care in NHS is well recognised to further improve outcomes and patient experience of care. This has to be matched by a sustainable healthcare strategy of commissioning. These goals have been combined to create a Renal Service Transformation Programme in kidney care (RSTP) over 3-4 years, due to be launched in early 2021. The work will bring together all stakeholders including patient organisations to shape and transform the future of kidney care in the NHS.

The vision of the RSTP will be operationalised through the newly setup Regional Renal Networks through localised Quality Improvement initiatives.

This is a unique opportunity to shape the future landscape of one of the best kidney health care systems in the world. The GIRFT process would also lead to a library of best practice which units could draw on to improve.

The combination of the recommendations of the GIRFT review and implementation through RSTP with patient and professional society review represents the best opportunity to make wholesale changes to improve things for patients for a decade, he suggested – and there might not be another chance for years to come.

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2021

Why is home dialysis important?

There are many benefits of home dialysis, both for patients and for the NHS. • Reduced patient transport. In-centre haemodialysis usually requires three hospital visits a week, of around four hours each, meaning dialysis patients make up a significant proportion of those needing patient transport services. In 2012, the National Kidney Federation showed that for hospitals which offer dialysis services, up to half of their patient transport costs were attributed to dialysis patients (around £50m costs in 2009-10). Because fewer than half of acute hospitals offer dialysis services, patients often have to travel significant distances to access them – making longer days for them and adding to the cost for the NHS. There is also an impact on the NHS’s carbon footprint from this travel.

A Dialysis Transport Working Group – which the NKF has been involved in – put the cost of patient transport at up to £250m a year in 2019. Yet only 60 percent of patient transport contracts had key performance indicators – such as timeliness for arrival and return journeys – in place. In some cases, eligibility criteria are used to determine whether patients are entitled to free transport: this can leave those who do not qualify with substantial costs – www.kidney.org.uk/news/dialysistransport-working-group-report-launches

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• Better patient experience and clinical outcomes.

Dialysis overnight can also allow people to live close to normal lives – for example, they may be able to work, pursue hobbies or enjoy more of a social life if they don’t have to visit a hospital three times a week. For some patients, the ability to go on holiday more easily or stay with family will be important, smaller “portable” dialysis machines make this easier. More than three out of five patients on home haemodialysis say they have more time to spend with friends and family, compared with having treatment in a centre.

Nearly three out of 10 have been able to return to work or carry on working on it, and more than seven out of 10 said they had more leisure time.

But there is also evidence from a number of international studies that home dialysis can offer better experience than treatment in hospital. On clinical outcomes, research using the Australia and New Zealand (ANZ) registry has shown improved patient survival over 10 years and another study has showed a 13 per cent lower risk of death for patients.

Over a quarter of home haemodialysis patients rely less on additional medicines than those dialysed in-centre and, as they generally maintain better health levels, have an increased chance of receiving a kidney transplant.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

• Reduced overall costs to the NHS. There has been little research on this in the UK, carrying out more is expected to be one of the recommendations in the GIRFT report, but international studies have shown reduced overall costs through home dialysis. The sums involved are potentially massive – two per cent of the NHS’s overall budget is spent on transplantation and dialysis services so even a small saving in percentage terms on this could amount to hundreds of millions of pounds.

However, one of the challenges is that some of the savings from home dialysis may be delivered over time and may not be realised in the same organisation as the one bearing any costs. Dr Lipkin suggested this is where commissioning is important as commissioners – and systems – can put pressure on trusts to do the right thing. Integrated care systems – where different NHS organisations work more closely together – may also have an impact.

• Reducing demands on acute trusts. Increasing the numbers of patients dialysed at home may also offer significant benefits to hospital trusts. As the number of people needing dialysis of some kind rises, trusts are struggling for space to treat them in hospital. Some units have established satellite centres but this can be expensive at a time when capital for the NHS to invest in new buildings is limited. It will also have staffing implications.

In the coming years, the NHS is likely to see an increase in demand for dialysis treatment due to demographic and lifestyle factors.

To accommodate this, it will need to either increase the size and number of dialysis centres – many of which already run extended sessions into the evening – or enable more patients to be treated at home.

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2021

Barriers to home dialysis The 2013 APPKG manifesto set out a number of the barriers to carrying out more home dialysis. Sadly, seven years on, many of the same issues arise.

They include: • Policy levers have failed to bring about much change in clinical and commissioning practice. NICE guidance indicating home haemodialysis could be more widely used and the Commissioning for Quality and Innovation (CQUIN) has failed to bring about a substantial increase in rates. In part, this has been because there are few mandatory levers – CQUINs were optional, for example, and trusts are rarely held to account for not following NICE guidance. If commissioners set an ambitious target for the percentage of patients who dialysed at home, this could shift the dial. Few do. There are few incentives within the NHS payment system to encourage the use of home dialysis over in-centre dialysis.

• A lack of awareness among both patients and clinicians of the benefits of home dialysis.

Home dialysis rates can be impacted by clinicians’ personal preferences and past experiences.

They may then be less keen to promote home dialysis to patients or to discuss their concerns about it. Patients may be unaware of the availability of home dialysis and may have perceptions that home dialysis is difficult to do or that it requires a lot of space in their home (home dialysis equipment has shrunk considerably in recent years).

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• Patient education. Detailed, unbiased patient education is important in building confidence in patients and their carers and allowing them to make an informed decision about what is right for them. “It is clear that if people are given balanced advice there is greater patient desire for home therapy,” says Dr. Lipkin.

• In-centre treatment is often the default option for patients, especially if starting dialysis has not been planned. It can mean patients never get the opportunity or the confidence to switch to home dialysis well in advance. However, it need not be a permanent choice if patients are then given information about the alternatives. Some patients may choose to change their mode of treatment for a multitude of reasons but may not be given the chance to do so. In an ideal situation, patients would have a care plan with the opportunity to regularly reassess their choices in consultation with a clinician.

• Patient benefits are not sufficiently prioritised in a system which values and measures clinical outcomes. The 2013 manifesto called for more use of patient reported outcomes measures and patient reported experience measures which would reflect the benefits home dialysis can offer to patients. Clinical outcomes such as creatinine levels are easy to measure and can drive decisions. However, patients may value other outcomes more – such as the ability to live a more normal life.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

• Resources. Setting up home treatment can be seen as more resource intensive at the start than establishing someone on hospital treatment, often because of the need to train a patient or carer to use the dialysis machine. But a stable patient on home dialysis will care for themselves rather than requiring hospital input three times a week, with longer term gains for the NHS. • The time to prepare for home dialysis. Patients whose condition suddenly declines or who get seen in clinic late in the course of their disease may be less likely to adopt home treatment as they have less time to consider a decision, get advice and set up at home. Patients who are seen earlier in the progression of their disease in an advanced kidney care clinic may be more likely to opt for home treatment (some units will see them up to two years before they are likely to need renal replacement therapy).

• Fear of infection. All kidney patients receiving dialysis are concerned about getting an infection.

But the focus on different types of infections can impact on how they are viewed and what prominence they are given. Cases of infection with home dialysis are subject to a root cause analysis (RCA); where patients get peritonitis with peritoneal dialysis, an RCA is not required.

• Fear of needles. Some patients find their fear of needles is such that they are unable to contemplate home dialysis and “attaching” themselves to a machine. With in-centre haemodialysis dialysis this will be done for them.

• Patients’ reluctance to take on responsibility.

Carrying out dialysis at home can be a daunting prospect and some patients may not feel they are equipped to do so. They may fear they will do something wrong – even with modern machines where the risk of this is reduced – or will be put off by the need for strict infection control procedures.

• No one to support patients at home. Patients who live alone may be concerned that something will go wrong and they will not be able to deal with it without help. While they are dialysing they will be stuck in one place and won’t be able to attend to anything in the rest of their home or even get themselves a drink. While dialysis is undoubtedly easier and more pleasant with someone else around, many people living alone do manage to dialyse by themselves without incident.

• Storing the equipment and consumables needed for dialysis. Decades ago the equipment needed for home dialysis was massive and required significant space. That has changed with the advent of much smaller and often quieter machines, many of which can be accommodated in a normal bedroom. The consumables needed do take up space but how much will obviously depend on how often they are delivered.

Nonetheless, for people living in cramped accommodation or those who are in hostels or sofa surfing, space will be an issue.

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2021

Home therapies and ethnicity The take-up of home therapies in the UK is not the same across all ethnic groups. Data provided by the UK Renal Registry shows that, at the end of 2019, only 13 per cent of black dialysis patients and 14 per cent of Asian patients had received treatment at home at some stage, compared to 18.5 per cent of white dialysis patients. Black patients are the least likely ethnic group to be on peritoneal dialysis, while Asians have the lowest rate of home haemodialysis.

Home therapies by ethnic group for patients on dialysis at the end of 2019 TREATMENT

BLACK

ASIAN

OTHER

WHITE

Number on dialysis

2,891

3,825

933

19,610

% Home haemodialysis

3.3

2.0

3.4

5.7

% Peritoneal dialysis

9.5

11.8

12.0

12.8

% Home therapies

12.8

13.8

15.4

18.5

There is inconsistent take-up of home therapies across UK renal centres, with the percentage of dialysis patients on home therapies varying from 6.9 per cent to 40.1 per cent, looking across all ethnicities.

In most centres there are too few patients from minority ethnicities to look at whether we still see centre variation across specific ethnic groups.

However, if we look at the ten centres with the largest number of black patients, the percentage of black dialysis patients on home therapies at each centre ranges from 6.3 per cent to 20 per cent (a three-fold difference). In these ten centres, although black patients make up around a quarter of the dialysis population, the difference in home therapies persists: 13 per cent of black patients are on home therapies compared to 19 per cent of white patients. Only 3 per cent of black dialysis patients in these 10 centres were on home haemodialysis, compared to 5 per cent of white dialysis patients.

A similar pattern is seen for the ten centres with the largest number of Asian patients. There is a threefold variation in the home therapies rate for Asian 16

1 in 5 White patients 1 in 7 Asian patients 1 in 8 Black patients

dialysis patients (rate by centre ranging from 7.9 per cent to 22 per cent); a lower home therapies rate compared to white patients (14 per cent of Asian dialysis patients are on home therapies compared to 18 per cent of white dialysis patients); and a lower home haemodialysis rate compared to white patients (1.5 per cent of Asian dialysis patients are on home haemodialysis compared to 5 per cent of white dialysis patients). Asians comprise a quarter of the dialysis population for these ten centres.

This analysis shows that there is inequality in the provision of home therapies in the UK. This issue has received little attention within the kidney community to date. It is important that, particularly in the context of Covid-19 having disproportionate impact on the black, Asian and minority ethnic (BAME) communities, priority is given to understanding the reasons for this inequality and how we can address it. Similarly, it is most likely that kidney patients from lower socio-economic classes also have reduced access to home therapies and the kidney community needs to begin exploring this further.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

Recommendations

1 All adult renal units in the UK should reach a minimum prevalence rate of 20 per cent of their dialysis population on home dialysis (peritoneal and home haemodialysis) by the end of 2024. a This minimum rate should be included in the national service specification set by NHS England and the Departments of Health in Scotland, Wales and NI by the end of 2021 b Clinical directors of renal services in the UK should publish a plan of action related to home haemodialysis and peritoneal dialysis on how they will reach this rate by the end of 2021. c NKF with the support of local Kidney Patient Associations and the UK Renal Registry will monitor and publish details of progress on this rate by renal centres on an annual basis, starting in 2021.

2 Clinical directors of renal services in the UK should review their arrangements for shared decision making about dialysis options with patients by the end of 2021. a The principle of ‘no decision about me without me’ should guide this review. b The review should include sharing of information about the greater risk of in-centre dialysis compared to home dialysis because of Covid-19 and other infectious diseases. c The review should include the extent to which shared decision making meets the needs of all patients, irrespective of ethnicity or deprivation. d The outcome of the review should be included in the plan of action and published by the end of 2021, see 1b above.

3 The Renal Dialysis and Transplant Clinical Reference Group for renal services should review the current national service specifications for home dialysis and establish ‘integrated commissioning’ by the end of 2021. Both home haemodialysis and peritoneal dialysis pathways should be examined through the Renal Services Transformation Programme to identify levers that can lead to a system change within the NHS by 2021.

4 Clinical directors of renal services in the UK should review the staffing allocated to home dialysis and their training by the end of 2021. a This review should consider the staffing allocated to both haemodialysis and peritoneal dialysis in the renal unit. b This review should consider the training needs of the staff in the context of the impact of Covid-19. c This review should also consider the quality of the support and training provided to potential home dialysis patients and carers by hospitals or industry partners. d This review should include ways in which regular education days for existing home dialysis patients and carers can be used to promote home dialysis locally.

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Recommendations

5 Clinical directors of renal units in the UK should develop a plan to address barriers to home dialysis faced by patients from BAME backgrounds and patients who suffer high levels of deprivation by the end of 2021. a This plan should include how progress in addressing these barriers will be measured, particularly in the context of the impact of Covid-19. b This plan should include a review into the extent to which the training available for dialysing at home meets the needs of patients from BAME backgrounds and patients who suffer high levels of deprivation. c This plan should be included in the overall plan of action, see 1b above.

6 The NKF will lead on reviewing the current information available for patients and carers considering home dialysis and develop a plan to improve it so that it meets the needs of all patients and carers by the end of 2021. a The review will include leaflets, videos and information available online for both home haemodialysis and peritoneal dialysis. b The plan will include ways in which information related to Covid-19 is included and ensure that the information is easily accessible to all patients and carers. c The NKF will establish a national peer support service for home dialysis patients and carers by the end of 2021.

7 The Renal Association and the British Renal Society should arrange quality improvement events to promote home dialysis in all regions of the UK by the end of 2021. a The events should be developed in partnership with the NKF and other kidney charities and follow the Kidney Quality Improvement Partnership (KQuIP) approach. b The events should include sharing of good practice on how to address inequality of provision, how to address the impact of Covid-19 and address unwarranted variation in home therapies provision among renal centres.

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INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

•

Dr Graham Lipkin, president of the Renal Association and co-author of the Getting It Right Time (GIRFT) report, provided an overview of home dialysis in the UK and the impact of Co 19.

Dr Nitin Kolhe, consultant nephrologist at the Royal Derby Hospital, shared details of their dialysis services.

John Roberts gave a patient’s perspective of home haemodialysis and Jyoti Jadav gave a patient’s perspective of peritoneal dialysis.

Brian Child and Christine Price shared their experiences as carers to someone on dialysis.

Appendices •

•

•

Breakdown of attendance at the webinar

Webinar agenda – Wednesday 30th Breakdown of attendance at the webinar September 2020Ethnic Origin A total of 197 people registered to attend NKF’sregistered webinar on dialysis in the context o A total of 197the people tohome attend the NKF’s Covid-19. shows a breakdown. webinar on home dialysis in the context of Covid-19.

• Kirit Modi, honorary president of theBelow National Below shows a breakdown.

Kidney Federation, introduced the webinar.

Occupation Occupation

• Dr. Graham Lipkin, president of the Renal Association and co-author of the Getting It Right First Time (GIRFT) report, provided an overview of home dialysis in the UK and the impact of Covid-19.

Other

36

• Dr. Nitin Kolhe, consultant nephrologist at the Royal Derby Hospital, shared details of their home dialysis services. /Asian British (3) Asian/Asian British - Indian (20)

76

John Roberts gave a patient’s perspective of /Asian British -• Pakistani (4) Black British - African (9)

Carer

home haemodialysis and Jyoti Jadav a (2) British - Caribbean (2) Multiple ethnicgave background and Asian (2)

19

patient’s perspective of peritoneal Other ethnicdialysis. group (4)

Gender Gender

Living Donor

Nurse (38)

Carer (19)

Ethnic Origin

Ethnic Origin

Female

80

Male

117

Male (117) Female (80) Asian/Asian British (3)

NotAsian/Asian all registrants filled in all data British - Pakistani (4) fields.

Black British - Caribbean (2) nts filled in all data fields.

White and Asian (2)

3

Nurse

38

Othershared White background • Brian Child and Christine Price their (8) - English/Welsh/Scottish/Northern Irish/British White - Irishon (11)dialysis. experiences as carers(112) to someone

1)

Patient (76)

Patient

Doctor

Doctor (11)

11

Living Donor (3)

Asian/Asian British

Other (36)

3

4 Asian/Asian British – Indian 20 Black British – Caribbean 2 White and Asian 2 Black British – African 9 Arabian 1 White – UK 112 White – Irish 11 Multiple ethnic background 2 Other ethnic group 4 Other white background 8 Asian/Asian British – Pakistani

Asian/Asian British - Indian (20) Black British - African (9) Multiple ethnic background (2) Other ethnic group (4)

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Derby experience: Over five years the Royal Derby Hospital has nearly doubled the number of patients on home dialysis from 34 to more than 60 through a ’home therapy first’ approach which supports and informs patients.

It has done this through an extensive patient education campaign and assuaged fears about home therapy through a multidisciplinary approach. Nephrologists, vascular surgeons and interventional radiologists play a key part in this as do nurses who will train patients in home therapy.

Patients also have access to specialist support from a dietitian, pharmacist and an anaemia nurse.

“If patients have all the information which is required, it becomes easy for them to make the decision,” says Dr. Nitin Kolhe, clinical director for specialist medicine and consultant nephrologist at the University Hospitals of Derby and Burton Foundation Trust.

“Starting dialysis can be an anxious time with patients concerned about how they and their family will cope and feelings of guilt that they will be in some way a burden on those around them,” he says.

Despite this the unit has achieved a 38 per cent home therapy rate – the highest nationally – helped by a CQUIN which rewarded it for treating more patients at home. It now has more than 50 patients on home haemodialysis and a reducing number of patients on peritoneal dialysis (which is in-line with national trends).

20

The team was also motivated to make sure patients understood their conditions and feel supported.

Patients get timely access to vascular or peritoneal dialysis access, assisted by an expert interventional radiologist and a vascular surgeon who wanted to ensure good access for patients and followed up on how it was working. A team of home therapy nurses support them to dialyse successfully at home.

The team is also keen not to exclude people from home dialysis unnecessarily. “We have a healthcare assistant – a band four – who finds it a challenge if he is told a patient is not for home therapy,” says Dr. Kolhe.

But he adds that advances in user-friendly technology has helped patients choose to dialyse at home. “If it is complicated, the patient will find it difficult to use – there is always a fear of pressing the wrong button.”

Patients who may need renal replacement therapy will be identified two years ahead and transferred to a ‘low clearance’ clinic. As they come closer to needing renal replacement therapy, they and a family member will be invited to an information session with talks from clinicians but also patients, and a chance to see the sort of equipment needed for home dialysis. These are held regularly – around 16 a year. Home assessments are carried out and training on the equipment is done over two weeks, with the patient starting to use the equipment at home in the third week with the support of a nurse.

Should problems develop – for example, with a fistula for peritoneal dialysis patients – urgent intervention is available within six to 12 hours.

Manchester experience: Manchester University Foundation Trust (MFT) has been at the forefront of prioritising dialysis at home for patients approaching kidney failure.

Over the past 15 years, the team have supported one of the largest home haemodialysis (HHD) programmes and is recognised globally as a centre of excellence in HHD (Reference Mitra S, Cress C, Goovaerts T. Workforce development and models of care in home haemodialysis. Hemodial Int. 2015 Apr; 19 Suppl 1:S43-51). Patients approaching the need for dialysis attending clinics often dread the fact that they have to commence dialysis with thrice weekly visits to the hospital. For some, this remains the only choice. However, for many others who are suitable, they should get the choice of home-based dialysis at MFT. This is then supported proactively through a process of assessment and enablement, addressing any concerns and modifications/adaptations as necessary. This can often include reviewing circumstances and available space. MFT programmes have often taken innovative steps for individual patients where space is a limitation, by using smaller machines, low volume of supplies and other adaptations to fit dialysis in homes. A training programme that values individual learning needs and allows patients to learn at their own pace has been at the heart of this, offering to a wide range of patients between 20–86 years of age successfully trained. During training any physical limitations are addressed, as an example, building strength on the left hand for a right-handed person to easily connect to the machine and such others. The programme has also trained patients with impairment in physical ability and dexterity.

Specific training is offered to overcome fear of cannulation through various approaches including special needling techniques that avoid the use of sharp needles. The programme has now successfully trained over 480 patients in the past 13 years. Many of them have gone on to get a successful transplant facilitated by optimised health outcomes due to a higher quality of dialysis in HHD. Better health outcomes are mainly achieved through offering a customised dialysis schedule at home fitted around lifestyle, preferences, varying weekly commitments and clinical needs. The majority of patients are often able to fit in 25-30% more dialysis treatment time than offered in the hospital and at the same time benefit from a huge saving in travel time. This treatment time addition can lead to more freedom with diet and fluid intake, a reduction in pill burden and improved overall heart health and outcomes.

Good hygiene practice in the home setting is still a necessary prerequisite.

Professor Sandip Mitra who leads the programme said, “the programme’s success is driven by offering all patients approaching dialysis the opportunity to consider home dialysis, putting enablers in place based on their individual needs and preferences, and highly skilled HHD training and a community support team. Patient empowerment will need to be a central theme in dialysis programmes to ensure that patients are on the right therapy in the right location of care. Home haemodialysis provides patients with a pathway to living well on dialysis.”

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The patient’s perspective John Roberts developed kidney failure in 1994 due to an inherited condition – autosomal dominant polycystic kidney disease. Twenty years later his kidneys were so large that peritoneal dialysis was not an option and he needed haemodialysis, which he opted to have at home after an initial period of in-centre care at the Salford Royal Hospital.

Physiotherapist Jyoti Jadav recently had a kidney transplant but prior to that had peritoneal dialysis at home, after she developed IgA nephropathy in 2014.

Initially this was peritoneal dialysis (manual exchange) three times a day but then she switched to overnight home dialysis on an automated machine to enable her to work.

He used a small NxStage machine with access to a 24/7 helpline if he developed any problems. He found that his quality of life improved and he had control over when he dialysed, rather than having to follow a hospital timetable. “You have control over the days and times you dialyse,” he says.

During the Covid-19 pandemic she felt reassured by having treatment at home; at one point she was taken to hospital with coronavirus symptoms, but it was decided that it would be safer for her to remain dialysing at home. “You are in control of the management of your own dialysis,” she says.

This made it easier for him to accommodate special events such as weddings – but also to go on holiday. Although communication with airlines and hotels used is crucial, the small size of the equipment made it possible for him to take it with him. Supplies of the consumables have been delivered to his accommodation by NxStage.

Some of the more challenging aspects are the need for storage space, she says, and patients who don’t have family nearby or carers to support them may lack confidence in their own abilities. They can also suffer from side-effects such as constipation.

In 2019 John received a live kidney donation from his daughter.

22

“Home dialysis gives you greater independence and infection control,” she said.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

The carer’s perspective Brian Child, vice-chair of NKF, cared for his wife for many years, retiring early to train on home dialysis equipment to ensure she could dialyse at home. Sadly, she died in early 2020.

She was diagnosed with kidney problems in the late 1960s and when home dialysis was first suggested in 1985, the only option would have been a portable building – and a crane to place it in their back garden. However, his wife was given a transplanted kidney and it was more than 14 years before dialysis was considered again after her kidneys had been damaged by drugs for breast cancer.

By then the position with equipment had changed significantly and, having tried dialysis both at a hospital and a satellite unit, she opted for dialysis at home and he gave up work to help look after her.

Gail dialysed via a central venous catheter (CVC) line because she was told, “her veins were not good enough to support a fistula but a line would leave her susceptible to infections.” Fortunately, her line never became infected during the 14 years she was dialysing at home, except when she had a spell in hospital for chest infections or cellulitis.

When she was travelling to the hospital and the satellite unit, it could take up to 10 hours to reach the unit, be dialysed and then get home again – compared with being dialysed in a chair at home.

She was also able to travel abroad for holidays and dialyse at a unit close to the hotel.

“It was undoubtedly a saviour,” he says. “I don’t think she would have lived another 14 years otherwise – I think home dialysis gave her another 10 years of life.”

Christine Price cares for her husband Bob who started home haemodialysis nearly 40 years ago. As a nurse, she knew undergoing renal replacement therapy could leave patients tired and with little stamina. One third of dialysis patients will also develop low mood and may need to seek help for this – “the GP is a good starting point,” she says. Bob’s main side-effect from these years of dialysis has been amyloid deposits in his joints, causing severe pain.

Christine spent 30 years as a nurse before retiring and has continued to care for Bob throughout their marriage. But like other carers she has found the role stressful and feels the impact of caring on the carer’s health needs to be recognised and respite care planned and provided. “My great concern is suddenly becoming ill and I am now a registered carer with Carers UK,” she says. If she did fall ill, Bob would get an assessment of his physical needs within 24 hours, which greatly comforts her.

The Covid-19 pandemic has been a stressful time for many carers but Catherine points out that they are able to do more to control infection in their own environment. At the height of the first wave, Bob had major problems with the equipment and needed a new machine delivered – but they still felt in control because it was in their home environment and they could manage the infection control risk.

“We all know that people who dialyse at home have fewer infections and live longer. At present, we feel so grateful to be dialysing at home and shielding,” she says.

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Acronyms

ANZ

Australia and New Zealand

APPKG All-Party Parliamentary Kidney Group BAME

Black, Asian and minority ethnic

CQUIN Commissioning for Quality and Innovation CRG

Clinical Reference Group

CVC

Central venous catheter

GIRFT

Getting It Right First Time

HD Haemodialysis HHD

Home haemodialysis

ICHD

In-centre haemodialysis

KQuIP

Kidney Quality Improvement Partnership

MFT

Manchester University Foundation Trust

NHS

National Health Service

NHSE

National Health Service England

NICE

National Institute for Health and Care Excellence

NKF

National Kidney Federation

PD

Peritoneal dialysis

QoL

Quality of Life

RCA

Root cause analysis

RSTP

Renal Service Transformation Programme

UKRR

UK Renal Registry

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INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

References

1 www.kidney.org.uk/home-dialysis-manifesto 2 blogs.bmj.com/bmj/2020/09/10/how-has-covid-19-affected-end-stage-kidney-patients/ 3 www.kidney.org.uk/kidney-health-delivering-excellence 4 www.nice.org.uk/sharedlearning/bringing-the-benefits-of-home-haemodialysis-home 5 www.kidney.org.uk/hd-webinar 6 www.kidney.org.uk/news/dialysis-transport-working-group-report-launches 7 Mitra S, Cress C, Goovaerts T. Workforce development and models of care in home haemodialysis. Hemodial Int. 2015 Apr; 19 Suppl 1:S43-51

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Acknowledgements

This report has been a genuine team effort and the NKF is delighted to express its gratitude to everyone who has been involved in the publication of this report.

We also thank all the UK renal centres for providing Covid-19 data to the UK Renal Registry (UKRR).

The data reported here have been supplied by the UKRR and the Renal Association.

We have had excellent support from Dr. Graham Lipkin, Dr. Sandip Mitra and Dr. Nitin Kolhe throughout the process. Retha Steenkamp and Shalini Santhakumaran from the UK Renal Registry have given their time willingly with the statistics used in the report. Our special guests at the webinar Jyoti Jadav and Christine Price shared their experiences as a PD patient and a carer respectively. NKF established a hard-working subgroup to lead on this work and its members were: Brian Child (chair), John Roberts, Kirit Modi, Donna Blizard, Andrea Brown, Pete Revell, Chris Albas-Martin, Mark Davis, Alison Moore and Chris Marsden. We are most grateful to Fresenius Medical Care (UK) for their financial support.

The interpretation and reporting of these data are the responsibility of the authors and in no way should be seen as an official policy or interpretation of the UKRR or the Renal Association.

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INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK

Notes

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Supported by:

JANUARY 2021