Increasing Home Dialysis in the Context of Covid-19 in the UK - One Year On

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

March 2022 Part 2

2022

NKF Home Dialysis Subcommittee Members

2

Ros Aird

Donna Blizard

Andrea Brown

Caryl Bryant

Brian Child

Stephen Emmerson

Jim Higgins

Sarita Khurana

Kirit Modi

Tarsem Paul

George Palmer

Linda Pickering

Pete Revell

John Roberts

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Increasing Home Dialysis in the context of Covid-19 in the UK The National Kidney Federation (NKF) is a highly effective national UK charity.

Established in 1979, it is unique in several ways, it is the only UK support organisation run by kidney patients for kidney patients, with two main roles – patient support and campaigning.

The NKF provides 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 the government to provide better treatment for patients.

The NKF also works with the Department of Health, NHS Blood and Transplant, the NHS and other professional societies 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 7 8 13 15 16 17 18 19

Introduction Response from RSTP Responses from Clinical Directors and KPA’s Responses from the Department of Health and Social Care, and the Devolved Governments Home Dialysis Data KNF Survey Results - Views of kidney patients towards home dialysis Quanta Survey Results Peer Support Service The Kidney Quality Improvement Partnership’s Home Dialysis project The 2022 Campaign – building on progress Acknowledgements / Acronyms

3

2022

Introduction NKF is pleased to publish this ‘One Year On’ report on its campaign to increase home dialysis following the publication of the report on ‘Increasing Home Dialysis in the Context of Covid-19 in the UK’ in January 2021. https://www.kidney.org.uk/home-dialysis-campaign#Report The purpose of this report is to share details about the campaign, to urge the kidney community to take further action and to share details of the NKF campaign for 2022.

The 2021 report made seven recommendations and these can be found here – https://www.kidney.org.uk/recommendations-of-the-2021home-dialysis-report/ The NKF campaign in 2021 consisted of engaging at a national level with patients, governments, representatives of the Renal Services Transformation Programme (RSTP), The UK Kidney Association (UKKA), Kidney Quality Improvement Partnership (KQuIP) and renal Industry Partners. At a local level, there was engagement with Clinical Directors of Renal Services and Chairpersons of Kidney Patients Associations (KPAs). A home dialysis survey of kidney patients was undertaken by the NKF in partnership with the University of Hertfordshire. In addition, the NKF established a national Home Dialysis Peer Support Service for patients and carers and published a leaflet on home dialysis.

4

The overall progress of increasing the provision of home dialysis in the UK, based on analysis of the 2020 data by the UK Renal Registry (UKRR), is disappointing. The NKF’s view is that this may be mainly because of the impact of Covid-19 on renal services and the staffing challenges facing the NHS generally with the subsequent impact on training for staff and new patients. The NKF fully appreciates the ongoing pressures that the NHS faces, the continuation of the Covid-19 pandemic and any new variants which may emerge. However, there is a great deal of support within the renal community for increasing the provision of home dialysis and a willingness to improve, locally among Clinical Directors and nationally through the RSTP, UKKA and others.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Analysis of 2020 data on home dialysis provided by the UK Renal Registry to the NKF is included in this report . It shows that there were 49 centres, out of 70 centres, with less than 20% of their dialysis patients who are dialysing at home using peritoneal dialysis (PD) or home haemodialysis (HD).

All centres, including those which are doing well and those who are not doing well, are listed in this report. Also, analysis using the ethnicity of patients on dialysis set out in this report shows the variations among ethnic groups. This analysis clearly shows that there is a long way to go before all centres in the UK reach the 20% home dialysis target recommended by the Getting It Right First Time (GIRFT) and the NKF report.

The NKF launched its Home Dialysis Peer Support Service in September 2021. This is now well established and providing a muchneeded service to patients and carers. The NKF also published a new leaflet on home dialysis for patients and carers in 2021.

The peer support service will be further developed in 2022 and the NKF will publish videos of patients and carers with experience of home dialysis in 2022.

The outcome from the survey arranged by the NKF and the University of Hertfordshire is set out in this report. Quanta also conducted a survey in 2021 and results of this can also be seen in this report. Both surveys provide valuable insights which can be used to increase the provision of home dialysis locally.

The NKF campaign will continue during 2022.

A hard copy of this report will be sent to the Health Ministers of the four Parliaments and Assemblies of the UK for their response. It will also be sent to the RSTP contacts so that they can consider these findings in their decision making. The APPKG will be requested to consider the report and their support will be in achieving the NKF’s aims.

At a local level, Clinical Directors of Renal Services in the UK as well as chairpersons of KPAs will be requested to respond to the report by the NKF, outlining their plans to facilitate an increase in home dialysis provision.

The NKF will publish a further update on progress early in 2023 and is optimistic that, with the support of the kidney community, the next report will disclose a significant progress.

5

2022

Renal Services Transformation Programme Response from Dr Neil Ashman

The Covid-19 pandemic has brought home dialysis therapies to the forefront of our thinking, as both home peritoneal dialysis and home haemodialysis have allowed people the security of first-rate treatment in their own homes. Perhaps we should be acknowledging once again that home therapies offer a dialysis option that brings so much flexibility and autonomy for those who are able to make this modality work as their preferred choice.

As a Renal Service Transformation Project, this campaign is precisely what a future kidney service should be aiming for: co-designed with our Kidney Patient Associations, delivering best practice and reducing variation. The RSTP looks forward to seeing the impact of the campaign over the coming year, and is a keen participant.

The NKF’s major programme and national campaign promoting home therapies comes at an opportune time for those making a decision about dialysis, their families, and the clinicians supporting them: simply put, it is time to make dialysis at home a reality, through a shared decision, for all who may choose this. Through sharing best patient and clinician information, best practice defined in the ‘GIRFT’ report, and through developing renal unit quality improvement initiatives to facilitate staffing, and an environment to make home therapy safe and easy to access, we have a transformative moment through the NKF’s campaign to make a step-change, aiming for at least one in five people accessing a home therapy.

Align renal services and commissioning to allow greater access to home dialysis by:

This is not simply about Covid-19: making home dialysis a real and meaningful choice for everyone who wishes to explore this. This may reduce the poorly understood variation in home provision across kidney units, and potentially reduce inequality of access to this care modality, making for a fairer NHS for all kidney patients who come to dialysis.

6

Under the RSTP dialysis work stream the project section states...

Implementing a scheme to support commissioning of home dialysis Determine workforce requirements for home dialysis >20% of prevalent population

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Responses from Clinical Directors and KPAs As part of the NKF campaign, all KPAs and Clinical Directors were asked where home dialysis was within their strategy and their plans to implement this. A number of responses were received although this was clearly impacted by the demands of Covid-19 on time and resources.

Of the responses that were received, take up of home dialysis therapies ranged from 10% up to 23%, of which the greatest number were peritoneal dialysis patients, followed by home haemodialysis with a fixed machine.

Not all areas offered a portable home haemodialysis option although, for the most part, trials were under way. Most of the responders had some form of peer support service in place although not necessarily confined to home dialysis patients. All those responding had plans in place, or under development to increase home dialysis to 20% of eligible patients.

Responses from the Department of Health & Social Care, and the Devolved Governments Towards the end of 2020 the NKF Chief Executive, Andrea Brown, got in touch with the Department of Health and Social Care, the Directorate for Health Care Quality and Improvement of the Scottish Government, the Ministry for Health and Social Services of the Welsh Government and the Committee for Health for Northern Ireland to request an update on the steps that each of the administrations were taking to increase home dialysis provision and to protect more dialysis patients from Covid-19. Replies were received from all but Northern Ireland.

All three responses demonstrated an awareness of the issues but, in the main, did little more than point at guidance from NICE and the respective government websites. The Department of Health and Social Care pointed to the three year RSTP, in which addressing reducing the variation in access to home dialysis is included in the key workstream of renal dialysis. Of the responses received the most positive was from the Welsh assembly, with their ‘Pathways to Home’ strategic model in the process of being put in place.

Copies of the responses can be seen here: https://www.kidney.org.uk/responses-fromthe-department-of-health-and-social-care 7

2022

Home Dialysis Data Analysis of home therapies provision by centres in 2020.

Data provided by the UKRR to the NKF shows that the average percentage of adult patients per centre on home dialysis (both PD and HD) in 2020 was 17.7%; compared to 17% in 2019.

The average percentage for England in 2020 was 18.3%, in Wales 19.3%, Scotland 11.5% and N. Ireland 10.9%. This shows that Scotland and N. Ireland have significantly lower provision compared to England and Wales.

N. Ireland England

10.9%

18.3%

Scotland

11.5% Wales

19.3%

The numbers of centres below the lower 95% limit; i.e. the centres not doing well, in 2020 was 20; compared to 16 centres in 2019. The centres were Ulster, West NI, Colchester, Kirkcaldy, Aberdeen, Wirral, Bradford, Edinburgh, Middlesborough, Stevenage, Glasgow, Leeds, London Guys, Leicester, Dundee, Doncaster, Airdrie, Gloucester, Carshalton and London West.

The number of centres above the 95% limit; i.e. the centres doing well, in 2020 was 13; compared to 15 in 2019. The centres were: Bangor, Coventry, London Royal Free, Southend, Shrewsbury, Derby, Stoke, Nottingham, Salford, Manchester Royal, Portsmouth, London Barts and Birmingham.

There were 49 centres with less than 20% of the patients on home dialysis in 2020, compared to 51 centres in 2019.

Provision of home dialysis by centres, including percentages on PD and HD, in 2019 and 2020 can be found here: https://www.kidney.org.uk/renal-register-data

2020

% of home dialysis in the four countries

20 centres 2019

16 centres Centres below lower 95% limit

13

2020 centres 2019

15 centres 49

2020 centres 2019

51 centres The above funnel graph indicates the provision by centres in 2020.

8

Centres below 20% limit

Centres above 95% limit

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Peritoneal dialysis (PD), home haemodialysis (HHD) and total home therapies (HT = PD+HHD) by centre, prevalent patients at December 2020.

CENTRE

2020 %

HHD %

PD %

HT %

CENTRE

2020 %

HHD %

PD %

HT %

Basldn

216

5.6

9.3

14.8

Leeds

635

3.5

10.1

13.5

Bham

1658

4.6

16.2

20.7

Leic

1116

4.4

10

14.4

Bradfd

310

1.9

8.4

10.3

Liv Ain

175

5.7

11.4

17.1

Brightn

522

5.9

12.6

18.6

Liv Roy

387

9.8

7

16.8

Bristol

549

3.1

12.4

15.5

M RI

659

10.6

12.7

23.4

Camb

327

8

8.3

16.2

Middlbr

370

4.9

7.6

12.4

Carlis

145

1.4

22.1

23.4

Newc

417

3.6

11

14.6

Carsh

1011

2.8

12.2

14.9

Norwch

346

3.8

12.7

16.5

Chelms

168

4.2

16.7

20.8

Nottm

476

6.7

20

26.7

Colchr

151

0

0

0

Oxford

564

3

11.9

14.9

Covnt

464

4.3

18.3

22.6

Plymth

186

0

17.7

17.7

Derby

377

16.7

18.6

35.3

Ports

790

10.5

12.8

23.3

Donc

201

2.5

9.5

11.9

Prestn

597

7.9

8.4

16.2

Dorset

348

4.6

9.8

14.4

Redng

370

2.2

16.8

18.9

Dudley

250

3.6

12.8

16.4

Salford

577

6.6

18.4

25

Exeter

565

3.5

15

18.6

Sheff

686

8.9

11.2

20.1

Glouc

256

0

11.7

11.7

Shrew

261

13.8

19.5

33.3

Hull

416

1.7

13.7

15.4

Stevng

598

5.2

4.2

9.4

Ipswi

170

1.8

18.8

20.6

Sthend

151

6

23.8

29.8

Kent

504

3.6

12.3

15.9

Stoke

381

10.2

23.4

33.6

L Barts

1227

2

21.8

23.8

Sund

262

3.4

12.6

16

L Guys

805

6

8

13.9

Truro

186

2.2

12.4

14.5

L Kings

739

3

13.7

16.6

Wirral

217

3.2

6.9

10.1

L Rfree

911

1.1

20

21.1

Wolve

412

7.3

14.3

21.6

L St.G

372

1.6

12.9

14.5

York

234

7.7

10.3

17.9

L West

1506

2.3

13.3

15.6

NATION

ENGLAND

ENGLAND

NATION

9

2022

Home Dialysis Data Peritoneal dialysis (PD), home haemodialysis (HHD) and total home therapies (HT = PD+HHD) by centre, prevalent patients at December 2020.

WALES

SCOTLAND

N IRELAND

NATION

10

CENTRE

2020 %

HHD %

PD %

HT %

NATION

2020 %

HHD %

PD %

HT %

Antrim

128

3.1

9.4

12.5

England

25221

4.8

13.5

18.3

Belfast

168

6

8.9

14.9

N Ireland

614

3.4

7.5

10.9

Newry

91

4.4

9.9

14.3

Scotland

2055

2.1

9.4

11.5

Ulster

99

0

3

3

Wales

1464

6.7

12.6

19.3

West NI

128

2.3

5.5

7.8

UK TOTAL

29354

4.7

13

17.7

Abrdn

216

0.9

10.2

11.1

Airdrie

222

0

12.6

12.6

D&Gall

67

1.5

14.9

16.4

Dundee

178

3.4

7.9

11.2

Edinb

323

0.9

9.9

10.8

Glasgw

605

1.8

7.4

9.3

Inverns

101

3

8.9

11.9

Klmarnk

188

7.4

14.4

21.8

Krkcldy

155

1.9

3.9

5.8

Bangor

109

11.9

16.5

28.4

Cardff

613

5.5

10.9

16.5

Clwyd

99

0

15.2

15.2

Swanse

497

8.9

11.9

20.7

Wrexm

146

4.8

17.8

22.6

18% for overall home therapies

Average rates of home dialysis

5% for home HD 13% for PD

Range in rates across centres (excluding zero rates)

3 to 35.3 for home therapies in 2020 3 to 23.8 for PD in 2020 0.9 to 16.7 for home HD in 2020

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Analysis of home dialysis provision by ethnicity in 2020.

Analysis of patients on home dialysis by ethnicity shows inequality for both Asian and Black patients.

A separate analysis of centres with more than 100 Asian or Black patients on dialysis has been done to help provide a better understanding of the provision.

Black

14%

Overall the rates of home dialysis among the dialysis patients were higher in White patients (19%) compared to Asian patients (16%) and Black patients (14%) in the UK.

White

19%

Asian

16% Rate of home dialysis

Among Asian patients, the difference lies mainly with home haemodialysis; 2.1% compared to 5.9% in White patients. Among Black patients, there is a difference in both types of dialysis; for haemodialysis it is 3.7% compared to 5.9% for White patients and for PD it is 10% compared to 13% for White patients.

There were 11 centres which had more than 100 Asian patients on dialysis in 2020. Data from these centres shows that 16.3% of the Asian patients in these centres were on home dialysis compared to 20.7% of the White patients in these centres.

The highest percentage of Asian patients on home dialysis was at the Royal Free London Hospital at 28% and the lowest was at Bradford at 5.8%.

There were 9 centres which had more than 100 Black patients on dialysis in 2020. Data from these centres shows that 14% of the Black patients in these centres were on home dialysis compared to 20.1% of the White patients in these centres.

The highest percentage of Black patients on home dialysis was at the Manchester Royal Infirmary at 28% and the lowest was at Carshalton at 9.7%.

Asian White

20.7%

16.3%

Percentage of patients on HD in centres with 100+ Asian patients

Black White

20.1%

14%

Percentage of patients on HD in centres with 100+ Black patients 11

2022

PD, HHD and total HT by ethnicity, prevalent patients Table 1 - Home therapies by ethnicity and nation. Data from Scotland have been excluded due to missing data, and from N Ireland due to small numbers 2020

ASIAN

BLACK

OTHER

WHITE

NATION

% MISSING ETHNICITY

N dialysis

HHD %

PD %

HT %

N dialysis

HHD %

PD %

HT %

N dialysis

HHD %

PD %

HT %

N dialysis

HHD %

PD %

HT %

England

3.81

3723

2.1

14.2

16.3

2933

3.8

10.1

13.8

908

2.9

2.9

2.9

16696

5.9

13.9

19.8

Wales

2.46

63

1.6

12.7

14.3

17

.

23.5

23.5

11

.

.

.

1337

7.2

12.3

19.5

UK TOTAL

8.78

3830

2.1

14

16.1

2966

3.7

10.1

13.8

922

2.8

2.8

2.8

19059

5.9

13.4

19.3

Table 1: Rates of home therapies amongst dialysis patients were higher in White patients (19%) than in Black patients (14%) or Asian patients (16%).

Amongst Asian patients, the difference lies mainly with Home HD (2.1% compared to 5.9% in White patients), while PD rates are fairly similar (14 and 13% in Asian and White patients respectively). Amongst Black patients there is a difference in both types of home therapy (3.7% for Home HD, 10% for PD).

Tables 2 and 3: Most centres have a small number of ethnic minority patients, so centre variation is difficult to look at.

When we look at centres with at least 100 Asian/Black patients, the difference in home therapy rates that is seen at a national level persists (see table below).

Table 2 - Home therapies by ethnicity for centres with >100 Asian dialysis patients 2020 NATION

ASIAN % MISSING ETHNICITY

N dialysis

HHD %

BLACK PD %

HT %

N dialysis

HHD %

OTHER

PD %

HT %

WHITE

N dialysis

HHD %

PD %

HT %

N dialysis

HHD %

PD %

HT %

L West

0

582

1

13.4

14.4

360

4.2

8.9

13.1

75

1.3

6.7

8

489

2.7

17.4

20

Bham

1.16

499

2.6

14.6

17.2

233

3

13.3

16.3

50

14

10

24

846

5.8

18

23.8

L Barts

1.32

423

0.2

26.5

26.7

351

3.4

17.9

21.4

113

0.9

11.5

12.4

306

3.3

24.2

27.5

L Rfree

2.95

197

0.5

27.4

27.9

232

1.3

15.1

16.4

96

.

21.9

21.9

310

1.9

18.4

20.3

Leic

3.53

192

2.1

6.3

8.3

59

1.7

6.8

8.5

20

.

5

5

754

5.6

11.4

17

Carsh

2.13

165

0.6

9.1

9.7

136

2.2

10.3

12.5

63

.

14.3

14.3

592

4.1

13.3

17.4

Bradfd

0.23

137

.

5.8

5.8

11

.

.

.

16

.

12.5

12.5

140

4.3

11.4

15.7

Leeds

0.16

128

0.8

7.8

8.6

46

4.3

8.7

13

12

.

8.3

8.3

445

4.3

11

15.3

Wolve

0.16

111

4.5

12.6

17.1

48

2.1

12.5

14.6

15

6.7

6.7

13.3

237

9.7

16

25.7

Salford

0

107

0.9

10.3

11.2

26

11.5

.

11.5

15

6.7

6.7

13.3

429

7.7

21.9

29.6

0.04

103

1.9

8.7

10.7

7

.

14.3

14.3

6

.

.

.

480

9.4

8.3

Prestn

Average HT%

16.3

17.7 20.7

Table 3 - Home therapies by ethnicity for centres with >100 Black dialysis patients 2020 NATION

ASIAN % MISSING ETHNICITY

N dialysis

HHD %

BLACK PD %

HT %

N dialysis

HHD %

OTHER

PD %

HT %

N dialysis

HHD %

WHITE

PD %

HT %

N dialysis

HHD %

PD %

HT %

L West

0

582

1

13.4

14.4

360

4.2

8.9

13.1

75

1.3

6.7

8

489

1.4

22.1

23.8

L Barts

1.32

423

0.2

26.5

26.7

351

3.4

17.9

21.4

113

0.9

11.5

12.4

306

4.8

9.6

22.8

L Guys

2.06

72

8.3

12.5

20.8

322

4.7

5.6

10.2

34

.

5.9

5.9

324

2.2

12.4

33.2

L Kings

0.54

88

1.1

15.9

17

312

2.9

9

11.9

32

3.1

18.8

21.9

293

3.3

8.9

15.9

L Rfree

2.95

84

9.5

16.7

26.2

245

6.9

4.5

11.4

12

16.7

25

41.7

305

4.7

10.6

10.1

Bham

1.16

499

2.6

14.6

17.2

233

3

13.3

16.3

50

14

10

24

846

.

3.2

25.7

M RI

0.5

197

0.5

27.4

27.9

232

1.3

15.1

16.4

96

.

21.9

21.9

310

2.4

5.6

17.4

Carsh

2.13

165

0.6

9.1

9.7

136

2.2

10.3

12.5

63

.

14.3

14.3

592

.

9.6

12.2

L St.G

0.7

91

.

12.1

12.1

120

0.8

8.3

9.2

39

.

15.4

15.4

104

6.9

.

3.2

Average HT%

12

14.0

20.1

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Survey Results - Views of kidney patients towards home dialysis In late 2021 two surveys were carried out, the first by the NKF in partnership with the University of Hertfordshire and the second by Quanta Dialysis Technologies – an overview of the results from both is given here.

SURVEY OF PATIENTS BY NKF AND THE UNIVERSITY OF HERTFORDSHIRE Views of kidney patients towards home dialysis: A survey study 1 Background The NKF in partnership with the University of Hertfordshire hosted an online patient survey, which was live over a 4 week period in winter 2021. The aim of the survey was to capture patient perspectives on home dialysis modalities. This included factors impacting decision making amongst kidney patients with and without experience of home based PD and or HD. The survey items were developed through a process that included a review of existing research and other evidence to inform initial item generation, which was refined by a panel of patient, academic and clinical representatives. A link to the survey was distributed via an NKF newsletter, as well as via social media platforms. Recognising the potential for health inequities driven by access to devices, we also included an option for patients to request a hard copy version with a prepaid envelope. This research received ethical approval from the University of Herefordshire.

Summary of patients who engaged with the survey (based on 62 respondents)

8% 6% 13% 18%

44%

Duration receiving dialysis, any form PD

YES

15%

2 Survey respondents • 102 patients consented to initially take part in the online survey. Of these, 62 went on-to engage with survey items.

• No hard copies were requested.

• Of those who started the survey, 57% completed all items. Where patients ended the survey early, results are presented as descriptive data by completed sections only. Note this mainly relates to incomplete personal information as opposed to responses to core survey items.

17%

In-centre HD

40%

Home HD

NO

45% Type of dialysis

83% Previous experience of kidney transplant

• Patient characteristics are shown below.

5%

Range from

Range from

per week to everyday

hour to overnight

1

90% white

years

Number of dialysis sessions per week

Length of each dialysis session

Ethnicity

Mean age

2

Less than 6 months More than 6 months but less than a year 1-2 years 3-4 years 5-9 years 10 years +

11%

60

YES

58%

NO

42%

Experience of more than one form of dialysis

FEMALE

35%

Prefer not to say MALE

60%

Gender 13

2022

3 Dialysing at home • Of those who had dialysed at home, the majority received information about this from their kidney care team (75%).

• The main reasons for choosing a home based modality align with the general literature and highlight that comfort and autonomy are influential drivers of decision making.

7% 8%

More choice in when to dialyse Comfort of own home Less disruption to daily routine Belief that a home modality is ‘better for me’ Easier to work Support available from care partner Reducing cost of travel

75%

received information

4 Choosing not to dialyse at home • For those who were not dialysing at home, the pattern of responses in relation to barriers identified the following: Lack of a care partner Safety concerns Concerns about space Personal preference Lack of confidence in managing process

9%

18%

11%

13%

16%

16%

8% 16% 12%

14%

5 Impact of COVID-19 on thoughts about home based modalities The main comment in free text was from patients who already receive a home based modality and related to a ‘strengthened resolve’ as exemplified in the following patient quote:

‘It [referring to the pandemic] has reinforced my feeling of safety, control and independence.

By dialysing at home, I was better able to shield, and remain safe and well.’

Of those who were not receiving a home based modality, 36% did not want to dialyse at home and therefore did not suggest factors that would make them re-evaluate this decision, with 21% wanting more assurance that support would be available to help them dialyse safely at home. Responses to a further free text entry box showed a distinct dive between two clusters of patients- those who already dialyse at home and is this as a ‘pathway to a sense of normality’ and those who want to maintain the ‘home/hospital division.’

It is notable that the survey was completed by patients with broad experience in terms of current dialysis modality. For example, the proportion of those receiving in-centre versus home dialysis fairs better than national averages. Most patients were also established on dialysis.

14

Experience Survey* We conducted a survey of dialysis patients in the UK to understand the variation in dialysis treatment, the availability of and access to self-care and home haemodialysis (HHD), and COVID-19.

-19 IN THEduring INCREASING HOME DIALYSIS IN THE CONTEXT OFpatient COVIDexperiences UK – ONE YEAR ON Here is what we learned:

Patients are not always informed of their treatment options

We surveyed 81 haemodialysis patients:

Survey by Quanta Dialysis Technologies 43%

34%

of patients dialyse at home

of patients haven’t been offered HHD by their renal unit

57%

receive treatment in-centre

60%

of patients dialysing in-centre haven’t been offered the choice of self-care

We believe in offering greater choice in dialysis care Review the Tariff The reimbursement tariff structure for dialysis in England should be reviewed to ensure that HHD is differentiated and rewarded when compared to in‐centre dialysis.

2021 UK Patient Experience Survey* We conducted a survey of dialysis patients in the UK to understand the variation in dialysis treatment, the availability of and access to self-care and home haemodialysis (HHD), and patient experiences during COVID-19.

Here is what we learned:

Patients are not always informed of their treatment options

National Care Pathway The kidney disease care pathway needs to be updated to ensure every patient diagnosed is encouraged, supported and given the opportunity to do home dialysis where suitable.

When asked, HHD patients used the following to describe how they felt about their care experience…

Address Postcode Lottery We need to eradicate the postcode lottery currently faced by dialysis patients when making care decisions, ensuring choice and equal access to HHD nationally.

COVID-19 has revealed key differences between patients receiving in-centre treatment vs. HHD

66%

of in-centre patients were concerned about receiving treatment in clinic or hospital

47%

We surveyed 81 haemodialysis patients:

of in-centre patients felt they were unable to maintain effective social distancing

43%

34%

100%

of patients dialyse at home

of patients haven’t been offered HHD by their renal unit

of HHD patients felt they were able to maintain effective social distancing

57%

receive treatment in-centre

60%

of patients dialysing in-centre haven’t been offered the choice of self-care

Patients dialysing at home can experience benefits to their physical and mental health

74%

94%

97%

We believe in offering greater choice in dialysis care Review the Tariff The reimbursement tariff structure for dialysis in England should be reviewed to ensure that HHD is differentiated and rewarded when compared to in‐centre dialysis.

National Care Pathway The kidney disease care pathway needs to be updated to ensure every patient diagnosed is encouraged, supported and given the opportunity to do home dialysis where suitable.

When asked, HHD patients used the following to describe how they felt about their care experience…

Address Postcode Lottery We need to eradicate the postcode lottery currently faced by dialysis patients when making care decisions, ensuring choice and equal access to HHD nationally.

COVID-19 has revealed key differences between patients receiving in-centre treatment vs. HHD

of HHD patients reported positive changes to their physical wellbeing

of HHD patients said their mental health improved

of HHD patients would recommend dialysing at home to in-centre patients

The survey results suggest that offering patients greater choice will improve adoption of self-care and HHD Quanta Dialysis Technologies Ltd Tything Road, Alcester Warwickshire, B49 6EU, UK www.quantadt.com SM-00176-A

*Data on file.

Disclaimer: SC+ is CE marked and indicated for use in adult patients. In the United States, SC+ is FDA-cleared for use on patients with acute and/or chronic renal failure when administered by a trained person in an acute or chronic care facility. It is not indicated for home use in the USA.

66%

of in-centre patients were concerned about receiving treatment in clinic or hospital

47%

of in-centre patients felt they were unable to maintain effective social distancing

100%

of HHD patients felt they were able to maintain effective social distancing

15

2022

Peer Support Service Recognising that deciding if home dialysis is for you can be an anxious time, the NKF launched their national peer support service on 1 September 2021. The free to call NKF Helpline is the main contact for patients and carers to contact if they would like someone to talk to regarding the option of considering dialysis at home.

These are a selection of the NKF peer supporters

The peer support service has seen a successful start and fully trained peer supporters have already helped many patients and carers receiving support.

The helpline has received excellent feedback from both those who have received support and from the peer support volunteers who have been able to give good advice to help patients from their own experiences and knowledge of home dialysis.

Jenni Barnes

Dana Holmes

Kasonde Konie

There has been significant promotion of the service with many requests from nurses and hospitals for peer support flyers and posters and these have been sent out in bulk to areas across the UK, all of which should aid the growth of this service.

Chris Rolfe

Caroline Storey

Jeff Wood

The peer support volunteers have been very helpful to patients and have shown excellent communication to the helpline with regular updates.

Our peer supporters have also helped with promotion by providing photos and quotes about their home dialysis experience which have been used on the NKF social media channels, in the monthly NKF newsletter, In Touch and the quarterly magazine, Kidney Life.

As well as connecting patients with a peer supporter, the helpline has also provided peer support training to people who have wanted to join the team, we now have a variety of people who can advise on home HD, PD and caring for someone on home dialysis.

16

New NKF Helpline Leaflet A new leaflet ‘A Covid-19 Perspective on Home Dialysis’ was launched on 29 October 2021 with information in it about the advantages and disadvantages of home dialysis whilst Covid-19 is still a major concern in the UK for kidney patients.

A promotion of the new leaflet was sent to all renal units, senior nurses and KPAs at the end of October.

This leaflet has already proved very popular with renal units, and 1,500 of these leaflets so far have been sent out to various renal hospitals around the country. The new leaflet is available in both leaflet and PDF format and the text is on the NKF website here: https://www.kidney.org.uk/a-covid-19perspective-on-home-dialysis

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

Dialysis at Yours (DAYLife) - The Kidney Quality Improvement Partnership’s Home Dialysis project KQuIP launched their home dialysis quality improvement project, DAYLife, in 2019. It is a collaboration between all the main players in the field – NHS, industry and charities, with the aim of improving patient choice and uptake of home dialysis. The Covid-19 pandemic has only underlined the importance of this as there is clear evidence which demonstrates that home dialysis significantly reduces the risk of dialysis patients contracting, or dying from the virus.

This was the background against which the project has been developed, and it has drawn on the work of a number of other initiatives: The NKF home dialysis campaign, the Renal GIRFT report and the RSTP. A number of learning events have taken place and the major themes which have emerged can be summarised thus: a The importance of linking home dialysis services to the whole kidney care pathway (e.g. advanced kidney care and in-centre haemodialysis).

Moving into 2022 the future project priorities will include: a Capturing , sharing and learning from patient experience of home dialysis. b Elevation and communication of regional and local improvements in home dialysis. c Provision of national education and training around home dialysis improvement through webinars. d Provision of measurement support for home dialysis improvement.

KQuIP are continuing to build momentum and energy into the project by collaboration with the main players to bring kidney care improvements to those affected by kidney disease. In this context the NKF is committed to working with KQuIP to improve the numbers opting for home dialysis.

The full report provided to NKF can be found here: https://www.kidney.org.uk/kqip-home-dialysisproject-dialysis-at-yours-daylife

b The dependency of standalone interventions on factors such as leadership, culture, skills and staff awareness within kidney centres. c Patients as powerful drivers for change. d Industry partners as providing valuable resource, expertise and sustainability.

17

20212

The 2022 Campaign – building on progress The NKF recognises that the ongoing Covid-19 pandemic and its associated staffing issues impacted significantly on the increasing home dialysis campaign during 2021. However, the success of the vaccination campaign and the development of medicines to treat Covid-19 mean that there is greater optimism that significant inroads into the target of 20% of eligible patients will be made during 2022.

To achieve this the NKF will undertake the following actions during the year.

1

This report is being published to coincide with World Kidney Day – it will be backed up by a press release and contacts with local and national media outlets to ensure the greatest reach.

2 A copy of this report will be sent to all four devolved governments requesting their response.

3 Using the 2020 data provided by the UKRR, as shown on pages 8-13, the NKF will write to Clinical Directors of Renal Services of all centres in the UK, with a copy of this report. These letters to be targeted at centres with 20% or more patients on home dialysis and centres with less than 20% provision of home dialysis.

Centres in the first group will be requested to share their good practice and centres in the second group will be requested to send their plans for improvement to the NKF by the end of August 2022. Chairs of KPAs will be sent a copy of this report.

4 Raise the campaign as a priority action for the new All APPKG at its parliamentary meeting in May. 5 Continue to work closely with the RSTP and ensure that an increase in home therapies is high on their agenda. They have indicated their 18

enthusiasm for this so the NKF is confident that this support will give the campaign further impetus in 2022.

6 Identify all regional networks and ensure that there is an NKF representative with the brief to ensure that the home dialysis campaign is high on their agenda.

7 Establish a working partnership between the NKF and KQuIP on home dialysis.

8 Seek to run a session on home dialysis at UK Kidney Week in June 2022.

9 Develop educational material in the form of four professionally produced videos to inform and help allay any fears of patients and carers considering home dialysis.

10 The NKF Peer Support Service, which was launched in September 2021 has been very valuable in enabling patients and carers to be put in touch with a peer support volunteer who has experienced similar issues. The NKF will develop this service further during 2022.

11 The NKF recognises that home therapies may not be suitable for every dialysis patient but, there are likely to be a significant number who would like to undertake dialysis at home but are deterred because of physical or emotional concerns. During 2022 the NKF will develop guidance on how such barriers might be addressed.

12 The NKF recognises that there have been significant increases in the price of energy and that carrying out home therapies has a significant effect on the costs of water and electricity. There is no standardisation across the country on how, and to what extent, these costs are reimbursed, and this will be addressed during 2022.

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – ONE YEAR ON

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.

The NKF Home Dialysis Subcommittee members – Ros Aird, Donna Blizard, Andrea Brown, Caryl Bryant, Brian Child, Stephen Emmerson, Jim Higgins, Sarita Khurana, Kirit Modi,Tarsem Paul, George Palmer, Linda Pickering, Pete Revell and John Roberts.

Three contributors from the UK Renal Registry – Reetha Steencamp, Shalini Sathakumaran and Aisha Bello.

Views of kidney patients towards the home dialysis survey supported by Dr Shivani Sharma, Acting Head of Department (Psychology, Sport and Geography). Executive Lead: Equality, Diversity and Widening Participation School of Life and Medical Sciences from the University of Hertfordshire.

Quanta, KQuIP and The Renal Services Transformation Programme.

Thanks to renal Clinical Directors, Kidney Patients Association Chairs for their responses.

Chris Marsden for the design of this report.

The UKRR would like to thank renal centres for providing data to the UKRR and the Scottish Renal Registry, for sharing the data they collect and validate in Scotland with the UKRR. The data reported here have been supplied by the UKRR, part of the UK Kidney Association (UKKA).

Acronyms NKF

National Kidney Federation

APPKG

All Party Parliamentary Kidney Group

RSTP

Renal Services Transformation Programme

UKKA

UK Kidney Association

KQuIP

Kidney Quality Improvement Partnership

KPAs

Kidney Patient Associations

UKRR

UK Renal Registry

GIRFT

Getting It Right First Time 19

MARCH 2022