Increasing Home Dialysis in the Context of COVID-19 in the UK - Two Years On

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK TWO YEARS ON

March 2023

Part 3

NKF Home Dialysis Subcommittee Members

Ros Aird

Donna Blizard

Sharney Warren

Linda Pickering

Jim Higgins

John Roberts

Brian Child

Andrea Brown

Caryl Bryant

Kirit Modi mbe

Peter Constable

Stephen Emmerson

Pete Revell

Tarsem Paul

The National Kidney Federation

The National Kidney Federation (NKF) is a highly effective national UK charity.

Born in 1978, 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. The 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 estimated 3.5 million people with Chronic Kidney Disease (CKD).

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.

Introduction

The National Kidney Federation (NKF) is pleased to publish the Two Years On report on its campaign to increase home dialysis in the context of Covid-19 in the UK, on World Kidney Day 2023. The purpose of this report is to share outcomes from the campaign in 2022 and to encourage the kidney community to take further action.

The NKF are delighted that the request to Clinical Directors of Renal services in the UK resulted in responses from 31 units. A summary of the centre-bycentre responses is included in this report. It includes many examples of good practice, and the NKF hopes that these will be helpful to everyone involved and interested in improving the provision of home dialysis in the UK. In particular, NKF encourages the Regional Renal Networks set up by NHS England to use these examples in their work. The NKF has established parallel KPA Networks in each region, and the NKF encourages all KPA chairs to consider this report and support their local hospitals in their plans to increase the provision of home dialysis.

The NKF are most grateful to the UK Renal Registry for producing analysis of the latest data, including data centre-by-centre. Overall, there has been a small decrease in the percentage of dialysis patients on home dialysis from 2020 to 2021 in the UK, from 17.7% to 17.5%. These consist of increases in Northern Ireland and Scotland and decreases in England and Wales. In this report you can see the 2020 percentages alongside the 2021 percentages so that the change can be compared. The NKF are very pleased to see increases in the provision in many centres, however, there are also many centres which have had a reduction in the percentage of the provision. The NKF fully appreciates the unprecedented challenges facing the NHS and renal departments since 2020. The NKF encourages all centres to use the information included in the report to develop robust plans so that we can reduce the large number of centres where the provision is below 20%. Also, you will find the analysis of the home dialysis provision in 2021 by ethnicity and by social class in this report. As a kidney community, we have done little work

to address the long-standing inequalities in the provision and very much hope that this will be given priority by all of us.

The NKF hopes that as the work of the Renal Service Transformation Programme is concluded in 2023, the outcomes from this impressive work will be implemented by the Regional Renal Networks in England and across the UK.

The NKF has continued to develop its support to patients and carers considering options for dialysis. NKF’s national peer support service for home dialysis, consisting of patients and carers with first-hand experience of home dialysis is now well established and growing. The NKF are requesting all renal departments to promote this service locally, particularly if this has not already been done. The NKF produced seven new videos of patients and carers sharing their personal experiences of dialysis in 2022. They are available at www.kidney.org.uk/home-dialysis-films. A summary of a survey NKF conducted regarding the arrangements for meeting the cost of utility bill for dialysing at home is set out in this report.

NKF have set out the actions that will be taken in 2023, to continue this campaign in this report. The actions include seeking the support of the All-Party Parliamentary Kidney Group (APPKG) in highlighting the issues at a political level.

This report will be circulated widely, and it will be published on our website. A hard copy of the report will be sent to Chairs of all Kidney Patient Associations (KPAs) which are members of the NKF. This report will also be sent to the Clinical Directors of Renal Services in the UK, with a request to act. The 2023 report will be published on World Kidney Day in 2024.

Update on progress on the Home Dialysis (HD) Campaign in 2022

The National Kidney Federation (NKF) continued its campaign to increase Home Dialysis (HD) throughout 2022. The initial target was for all renal units to have 20% of their dialysis patients on HD. This ‘Two Years On’ report is based on all the hard work and information gathered by the NKF over the last year.

The ‘One year On’ report - page 18 - Building on Progress sets out twelve action points that were worked on during the year. https://www. kidney.org.uk/home-dialysiscampaign#Increasing_Home_ Dialysis_in_the_Context_of_ Covid_19_in_the_UK_One_Year_ On_March_2022_Report. These have largely been met or exceeded, as summarised below.

The ‘One year On’ report was reported to local and national media outlets and a copy was sent to the UK Government and the devolved Legislations.

The NKF also shared the report with all Kidney Patient Associations (KPAs) and asked them to raise it with their Clinical Directors/leads (CDs). The NKF sent a copy of the report and a survey to all CDs and renal units to ask about HD in their areas. The 20% target is met or exceeded by some, but others are still struggling.

NKF representatives attend meetings for the Renal Service Transformation Programme (RSTP), with a representative on each of the five workstreams and Board.

The NKF is the Secretariat to the All Party Parliamentary Kidney Group (APPKG) and has a representative on Inter-CEPt and meet with the Kidney Quality Improvement Partnership (KQuIP). The HD campaign has been raised by the NKF as a priority for both the RSTP and the APPKG. Both groups have responded positively to this. On 9th June 2022, a talk was given by the NKF at UK Kidney Week, on ‘How can all centres reach the 20% dialysis target’. The session can be viewed here - https://youtu.be/9nzJlyfJhB4

Through NHS England, Regional Renal Networks were identified and each KPA associated within a region. An NKF representative attends each region’s renal network meetings, to ensure that the patient’s voice is heard, particularly regarding increasing home dialysis. An NKF representative has also been appointed for each of the regional areas to liaise with all the KPAs in each region.

The NKF Annual Patients’ Event in October 2022 was a major success with lots of attendees on the day https://www.kidney.org.uk/Event/ nkf-virtual-patients-event-2022

One of the speakers was a patient, who spoke of her experience of Home Haemodialysis (HHD) and Peritoneal Dialysis (PD). She is also a voluntary NKF Home Dialysis Peer Supporter and an advocate of HD.

Another speaker was a diabetic, who developed Chronic Kidney Disease and talked about her experience of PD. She previously spoke on this topic at the APPKG in May 2022.

The NKF has produced a series of short films on kidney disease, including addressing patients’ concerns on HD - https://www. kidney.org.uk/home-dialysis-films

NKF is also working on a production with ITN, once complete this will be shown on ‘ITV Player’ under the health section and will be ready in time for World Kidney Day on 9th March 2023; it will be played during the NKF Parliamentary Reception on 8th March 2023.

Since contacting all the renal units as part of their development plan, the NKF has seen an increase in leaflet orders and requests from units asking for other resources, such as information folders, patient support packs and patient cards.

The NKF has developed a good relationship with a Nephrologist, who is helping to keep the NKF information leaflets up-to-date and to include more guidance for patients on their concerns over HD.

The NKF Peer Support Service is going from strength to strength and has given support to many patients and carers. Further promotion is needed to keep the service growing. The Helpline and the Home Dialysis Sub Committee will work on further promoting the service in the renal units. The NKF Home Dialysis Peer Support Service is very valuable to all who have used it, the NKF will continue to increase the presence of this service throughout the UK, enabling people who are thinking of going onto home dialysis to speak to someone with lived experience.

The Helpline has had a very successful year and has helped many patients and carers, as well as providing resources to hospitals and dialysis units.

The NKF is campaigning to ensure that people who dialyse at home are reimbursed for their utility costs, the impact of which is made worse by the current cost-of-living crisis. The NKF have asked the Regional Renal Networks to advise what their procedures are for ensuring everyone who goes onto HD is informed about how to get reimbursement for their utility costs. They have also been asked about their backup procedures for patients if there is an HD machine failure at home.

PD is not yet written into the service specification for HD reimbursement of costs, but the NKF have been assured this will be included in the new service specifications. A survey on patients’ and Trusts’ HD reimbursement experiences has been circulated by the NKF, with over 100 responses received; the results have been passed to NHS England. The analysis of the final results of this will be published in this report.

Further work by the NKF on the HD Campaign continues in 2023 as detailed in this report.

Responses from the Devolved Governments

If the NKF campaign to increase home dialysis is to succeed government support is vital - health is a devolved responsibility so the NKF Chief Executive, Andrea Brown, wrote to all four administrations: the Department of Health and Social Care, the Directorate for Health Care Quality and Improvement for the Scottish Government, the Ministry for Health and Social Services for the Welsh Government and the Committee for Health for Northern Ireland, requesting an update on the steps that each organisation was taking to promote and improve the provision of home dialysis in their area.

All four administrations responded, and all reiterated their support for the campaign. The Department for Health and Social Care recognised the benefits of investment in Home Therapies and particularly referenced the establishment of the Renal Services Transformation Programme and eleven clinical networks as the delivery vehicles.

The Welsh Government confirmed their strong commitment to increasing rates of home dialysis, pointing out their higher rates than the UK average and a number of initiatives being rolled out. These include Pathways to Home strategic model, an all Wales Education Group, collaboration with kidney charities, kidney cafes for home dialysis and peer support.

The Scottish Directorate for Healthcare quality and Improvement confirmed their support for increasing home dialysis where it is clinically recommended. The Department of Health for Northern Ireland also confirmed their commitment to home dialysis and had agreed funding to facilitate renal access surgery, particularly for PD catheter insertion. They also pointed out that the province has the highest rate of pre-emptive kidney transplantation in the UK.

The text of all four responses can be found at the Appendix on page 49.

Responses from Clinical Directors

As part of the campaign to increase the incidence of home dialysis, all 94 Clinical Directors across the country were asked to provide details of their Home Therapies programmes, to detail their plans for the future and to share any examples of good practice. A total of 31 responses were received and of these 23 were from England, two from Northern Ireland, five from Scotland and one from Wales. The information requested was in two main parts –firstly there was the basic data on percentages on home dialysis and the breakdown between PD and HD. Secondly, Clinical Directors were asked to provide more detailed information on their plans to increase the incidence of home dialysis and invited them to share innovation and good practice that might be useful to others.

An analysis of the basic data showed that only 3 respondents did not declare their percentage on home therapies, the remaining 28 varied between 10% and 50%. The 50% related to Alder Hey which, as a children’s hospital, may not be as representative of the generality. After Alder Hey, the next highest percentage of patients on home therapies was Shrewsbury at 30%. The average percentage of patients on home dialysis of those who responded is 18%, or 16% if Alder Hey is taken out of the calculation – this is better than last year, but indicates that there is still considerable scope for improvement.

The information provided on plans for the future and sharing of good practice was considered separately and a number of themes emerged. For Peritoneal Dialysis (PD) there were several initiatives on improved catheter access and the introduction of new techniques for catheter insertion. There were also several examples of centres introducing assisted PD, giving better opportunities for more elderly or frail patients being able to dialyse at home. For HHD there was a drive to introduce more portable machines, with NxStage leading the field, but with significant interest in, and testing of, Quanta and Physidia.

From a more general perspective many centres had well supported programmes to promote home dialysis – several were using KQIP resources and there was a trend to introduce more shared care as a stepping stone to going home. There were a number of initiatives reported aimed at encouraging patients to consider home dialysis seriously, as well as training programmes for staff, often working in Multi-Disciplinary Teams, to ensure their commitment to promoting this therapy. These included face to face events, videos, questionnaires and regular reviews.

There is no doubt from the answers received that, despite the difficulties, there is a great deal of enthusiasm for developing home therapies across the country. The responses make interesting reading and a full tabulation of these can be found from page 28.

Report from the Renal Services Transformation Programme

by RSTP National Clinical Director: Prof. Smeeta Sinha

NHS England’s Renal Services Transformation Programme is putting together the building blocks that will drive transformation of renal specialised services in coming years. These transformative interventions are aligned with the national direction of travel to make commissioning of services more patient centric, leading to safer and better care closer to home. Dialysis at home enables patients to continue with extremely important care that is tailored around their lifestyle and moves care out of the usual boundaries of care being provided at a dialysis centre.

We welcome NKF’s refresh of the annual home therapies report as it shares insights that could aid further development of services and raise the profile of renal services amongst patients, their families/carers, clinicians and healthcare leaders. Over the coming years, we need to continue to engage with all key stakeholders who can ensure that patients have access to home dialysis regardless of where they live; NKF’s ongoing campaign will continue to shed light on keeping this at the forefront.

Over the last year we have worked closely with the NKF and other patient charities to develop and design improvement initiatives at both local and national level. This has informed development of best practice guidance and data insights that will support renal services and commissioners in the future. We also heard patient feedback that outlined concerns around reimbursement of costs to support dialysis at home and through existing commissioning arrangements we have taken actions to address issues, whilst working with renal services.

In addition, we have embedded patient representation in national groups and worked towards establishing this at regional renal clinical network level. I look forward to nourishing this partnership in coming years as we all work towards providing better quality of care, which is equitable and creates best value for patients and our healthcare systems.

Home dialysis data

Analysis of Home Therapies Provision by Centres In 2021.

For this third NKF report the UK Renal Registry has again provided data to indicate the progress on home dialysis by centres across the UK. It was disappointing to find that the average rates for home dialysis were very similar to 2020, showing that the average number of adult patients per centre on home dialysis (both PD and HD) in 2021 was 17.5%, compared to 17.7% in 2020 and 17% in 2019.

This overall 2021 figure of 17.5% is comprised of 4.6% HHD and 12.9% PD patients. However, this does hide a significant variation in the total home therapy rate across centres from a low of 2.9% to a high of 36%.

Breaking the data down for the four UK nations: the average percentage of patients on home dialysis for England in 2021 was 18.1% (18.3% in 2020), in Wales 18%, (19.3% in 2020) Scotland 11.7% (11.5% in 2020) and Northern Ireland 13.4% (10.9% in 2020).

In 2021 the number of centres with a low home therapy rate was sixteen, compared to twenty in 2020 – these were Ulster, Colchester, Kirkaldy, Airdrie, Wirral, Stevenage, Glasgow, London Guys, Carshalton, London West , Aberdeen, Gloucester, Sunderland, Bradford, Edinburgh, Middlesborough.

These centres fell below the lower limit of the range where we would expect 95% of the centres to lie if there was no variation (see funnel plot).

The number of centres with a high home therapy rate was 15 – up from 13 in 2020.These centres were Bangor, Carlisle, Southend, Ipswich, Coventry, Nottingham, Portsmouth, Birmingham, Plymouth, Shrewsbury, Derby, Stoke, Swansea, Salford, Manchester Royal Infirmary. These centres fell above the upper limit of the range where we would expect 95% of the centres to lie if there was no variation (see funnel plot).

There were 51 centres with less than 20% of patients on home dialysis in 2021, compared to 49 centres in 2020 and 51 in 2019.

Details of Home Therapy provision by centre, including percentages on PD and HD, as well as a comparison of the data for 2020 and 2021 can be found from page 12.

Percentage of adult patients prevalent to dialysis on 31/12/2021 on home therapies (PD and HHD) by centre

Data from Exeter were not available for 2021

Home dialysis data

Peritoneal Dialysis (PD), Home Haemodialysis (HHD) and total home therapies (HT, which is PD and HHD combined) by ‘centre’ for prevalent patients at December 2020 and December 2021.

ENGLAND

Home dialysis data

Analysis of home dialysis provision by ethnicity in 2021. Analysis of patients on home dialysis by ethnicity shows a very similar pattern of inequality as that for 2020. The home therapy rate was 19% for White patients, 14% for Black patients, 16% for Asian patients. Amongst Asian patients there was a large difference in Home HD (1.9% compared to 6% in white patients) and a smaller difference in PD rates (14% and 13% in Asian and White patients respectively).

Amongst Black patients there is a difference in both types of home therapy (3.8% for home HD, 10% for PD).

Most centres have a small number of ethnic minority patients, so centre variation is difficult to look at. However, when the data from these centres is analysed, the difference in home therapy rates that is seen at a national level persists.

There were 11 centres which had more than 100 Asian patients on dialysis in 2021, and these centres are the same as in 2020. The data from these centres shows a slight reduction in the number of Asian patients at 14% - down from 16.3% in 2020, compared to 21% of white patients. Again, as in 2020, the highest proportion of Asian patients on home dialysis was at the Royal Free Hospital in London at 25% - a slight reduction on the 28% reported in 2020. The lowest was Leeds at 7% - last year’s lowest, Bradford had improved from 5.8% to 8%.

There were 9 centres which had more than 100 Black patients on Home Dialysis which are unchanged from last year. The data shows a drop in the figures in that 13% of these patients were on home dialysis compared to 22% of White patients as against 14% and 20.1% respectively in 2020. The highest percentage of black patients on home dialysis was at the Royal Free Hospital in London at 25% and the lowest was St Georges Hospital London at 12% These results show that for centres which had higher numbers of Asian or Black patients, the disparity in home therapy rates between minority groups and White patients was bigger than we see in England and Wales overall.

Rate of home dialysis

Black 14% Asian 16%

White 19% Black 13% White 22%

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

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

White 21% Asian 14%

INCREASING HOME DIALYSIS IN THE CONTEXT OF COVID-19 IN THE UK – TWO YEARS ON

Table 1 - Home therapies by ethnicity and nation, prevalent patients at 31st December 2021.

Data from Scotland have been excluded due to missing data, and from N Ireland due to small numbers. Data from Exeter were not available for 2021

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, there was a large difference in Home HD (1.9% compared to 6.0% in White patients), and a smaller difference in PD rates (14% and 13% in Asian and White patients respectively). Amongst Black patients there is a difference in both types of home therapy (3.8% for Home HD, 10% for PD).

Results are very similar to 2020.

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

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

Peritoneal Dialysis (PD), Home Haemodialysis (HHD) and total home therapies (HT = PD + HHD) by centre and deprivation quintile for patients prevalent to dialysis at the end of 2021

Table 1: The percentage of patients on HT by deprivation quintile

Rates of home therapies were lower for patients from more deprived areas, with a very similar spread to 2020. When we shared data with you previously we did not have deprivation data for Scotland. We now have this, and have included them this year, and recalculated the 2020 summary figures in Table 1 including Scotland.

Differences were seen in both HHD and PD. In 2021, only 9 centres achieved a HT rate of 20% for patients from the most deprived areas (quintile 1), compared to 34 centres for patients from the least deprived areas.

Home dialysis data

Home Dialysis Peer Support Service

The National Kidney Federation Home Dialysis Peer Support Service has now been running since September 2021 and the service has been valuable for patients and carers who need some guidance and support for home therapies. Our team of volunteers have helped over 60 patients who have wanted to discuss home haemodialysis, peritoneal dialysis and in centre dialysis options. As well as supporting patients with home therapies, our volunteers have also helped people with working around home dialysis, travelling whilst on home dialysis and offering support when newly started patients on home dialysis have found it all a bit overwhelming.

Our 23 volunteers have been a huge help in the smooth running of the peer support service and have been very quick to do referrals and the feedback they have received from people is excellent.

Here is a quote from one patient who used our service.

“I am a Stage 5 kidney patient and have opted for peritoneal dialysis at home when my kidneys finally stop working. I found it very reassuring to talk to someone who has actually experienced it. Gill was very easy to talk to and answered all the questions I had. Although the nurses had explained the whole procedure, it was a relief to hear how it happens in practice. By the end of our conversation, I felt less anxious. I was quite worried about having to rely on a family member, but Gill said she managed to do everything on her own. I will definitely contact Gill again nearer the time.

It is good to know there is a service provided by the National Kidney Federation to help you make this very important decision and give the patient reassurance.”

The breakdown of people we have given home dialysis peer support to is below.

Information about the the NKF Home Dialysis Peer Support Service is getting around and it will continue to be promoted as widely as possible to ensure as many people as possible know about it.

Over 400 renal units had been contacted by the Helpline to tell them about our the NKF Home Dialysis Peer Support Service and many laminated posters sent. also, the peer supporters had put posters up in their units advertising their services.

The Helpline has built up a good connection with Jacqui Byfield who is from East and North Hertfordshire NHS Trust and our peer support volunteers have helped several patients from under that trust who have needed some peer support for Home Therapies and in centre dialysis.

In 2023 we will continue to promote our services and with our fantastic volunteers we will look to spread the word further to promote peer support. If you would like to know more about our peer support service please contact Stephen and Linda via the NKF Helpline on 0800 169 0936 or email helpline@kidney.org.uk.

Reimbursement for Home Dialysis

During 2022 NKF worked with UK Kidney Association’s Kidney Patient Safety Committee to update guidance on reimbursement for people who dialyse at home, in addition a reimbursement calculator which was already being used in Wales was adapted for use:

https://www.kidney.org.uk/news/new-reimbursement-toolkit-for-home-dialysis

The NKF was alerted by patients that they were not getting reimbursed for their utility costs for doing home dialysis. The service specification regarding home dialysis:

https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/01/a06serv-spec-haemodialysis-renl-failr-home.pdf specifies the following - ‘Clear consistent national guidelines for the capital costs of home adaption, remote tele-monitoring and on-going funding for electricity, water and telephone costs due to dialysis treatment need to be put in place to ensure equity’.

Towards the end of 2022, NKF conducted a survey to find out how home haemodialysis patients were being reimbursed for their treatment. Here are the findings:

Do you get reimbursed for doing haemodialysis at home? No 24% Yes 76%

Of the 100 respondents, 76% get reimbursed for doing haemodialysis at home.

Reimbursement for Home Dialysis

Most people are reimbursed for electricity

• 69.7% (53) get reimbursed for electricity

• 17.1% (13) get reimbursed for water

• 31.6% (24) get reimbursed for a combined payment

The majority of people are reimbursed quarterly

• 13.2% (10) receive payments monthly

• 69.7% (53) receive payments quarterly

• 9.2% (7*) receive payments twice a year or annually

The majority of payments are less than £500 pa

• 15.2% (10) receive less than £250 pa

• 45.5% (30) receive between £250 and £499 pa

• 30.3% (20) receive between £500 and £999 pa

• 9.1% (6*) receive £1,000 or more pa

The majority of payments are automatically paid into a respondent’s bank

• 65.8% (50) receive their payments automatically into their bank account.

• In some cases, the respondent has to make a claim first which could involve sending a copy of their bill, submitting dialysis book, or completing a claim form

• 15.8% (12) receive a cheque for their payments

• 18.4% (14) mentioned another method for receiving payments, including:

nurse checking the machine/nurse claiming, sending bill to hospital/renal office, completing claim form and returning to dialysis centre, sending an email

This a list of the Trust or hospital that provides their renal care:

• Brighton and Hove Sussex University Hospital

• Derriford Hospital, Plymouth

• Freeman Hospital, Newcastle upon Tyne

• Grampian

• Heartlands, Solihull and Queen Elizabeth, Birmingham

• Lancashire Teaching Hospitals

• Royal Berkshire Hospital, Reading

• Royal Preston Hospital

• St Helier Hospital, Surrey

• St. George’s Hospital, London

• UHT Brighton Renal Dept

• York

NHS Regional Renal Networks

NHS England has established regional renal networks in recognition of the efficiencies that can be obtained from drawing on innovation and expertise. There has been considerable variation in their development over the year, but the benefits of collaboration are such that the NKF will support and encourage their ongoing effectiveness as they become established.

NKF requested the regional networks to update them on the work they have planned for home dialysis in 2023.

A major theme in the responses received has been the focus on reimbursement for utility bills, particularly in the light of the increases in energy costs that have occurred over the past year. In response to the NKF’s request for an update, the North East network had focussed on the standardisation of reimbursement costs across the region and provided a copy of their Position Statement.

Of those that have moved furthest in their development, a synopsis of their progress so far is as follows:

The London Kidney Network – Home dialysis is central to the London Kidney Network (LKN) approach to improving the care of those living with kidney disease and includes initiatives covering both Home Haemodialysis and Peritoneal Dialysis. The LKN Equity Audit 2022 showed inequities within the pathway, predominantly linked to treating centre, and will be working to address these in the coming year. There are two patient representatives on our Workstream, as well as a number of others who work on a more informal basis.  Home reimbursement guidelines have been developed which the LKN renal units are rolling out locally, in line with the national guidelines published last year.

In Peritoneal Dialysis (PD)  diverse clinical expertise and interest across London units, including people with lived experience, is being harnessed whilst building upon a rapid growth of people doing PD at home through the Covid-19 pandemic.

We are trying to improve experience and outcomes for people on dialysis by:

• Focusing on PD training.

• Ensuring we have the right workforce to support patients dialysing at home.

• Focus on improving the care of people with PDrelated peritonitis.

• Improving access to peritoneal dialysis.

In Home Haemodialysis (HHD) the network is in the early stages of bringing together people with an interest in HHD but this will be an important part of the approach for the forthcoming year.  This collaboration will build upon the development and implementation of network-level guidelines around reimbursement of utility bills for people doing both haemodialysis and peritoneal dialysis at home.

The Midlands Kidney Network mirror their work streams on those of the Renal Services Transformation Programme and has work streams around AKI, CKD, Dialysis, Transplants and Systems Optimisation.

As part of the dialysis working group there is also a focus on home dialysis. As a network the Midlands currently has the highest number of patients across the region on home therapies compared to the rest of England. The national recommendation is that 20% of patients are on home therapies and as a network, we are over this figure. A key performance indicator for 25% of patients on home dialysis has been set by the region and work towards this is underway. Regionally there are 3 units that are not achieving the 20% target for home therapies at the moment, and work is ongoing to action plans to improve their rates.

In addition to this, there are high rates of peritonitis across the region, and there is a Quality Improvement project along with KQuIP to look at reducing this.

Another project under development as a pilot is looking at an Assisted Home HD programme, and work is in hand with three units across the region to pilot this service in their Trusts.

The North West Network was launched in November 2022. The dialysis workstream has set out an agenda for improvement in all spheres of practice and across all units in the North West. Overarching goals of the workstream are in alignment with RSTP and GIRFT recommendations with a focus on quality, safety, efficacy and cost effectiveness in care delivery to all recipients of dialysis therapies. For the year 2023-24, the three areas of focus for the next year will be:

a Increasing home dialysis uptake.

b Increase PD catheter insertion service and late start PD access.

c High level and unit level process data acquisition from all units in the region.

We are pleased to note that all units have shown a great deal of enthusiasm for change in favour of improving their patient uptake of home dialysis therapies. Systematic quantitative (survey including workforce information/infrastructure/ other resources) and qualitative data (interviews) are being ascertained currently, to ensure that we can consider the interventions contextualised to the needs of individual units. All five units in the Northwest, have agreed on up to three interventions focused along the patient treatment journey – the advanced chronic kidney disease clinic, home dialysis training pathways and in-centre haemodialysis service. Units have different levels of maturity of pathways and learning from each other and implementing best practices will allow them

to achieve positive results. We intend to ensure that robust QI methodology is embedded within these project plans. KQuIP is increasing its training outreach to larger numbers of participants from across all the teams in the North West. We anticipate that many of these projects will be well underway in the coming months with sustainability at the heart of all these changes.

The South East Network is engaged with KQuIP in establishing the DAYLife project which is underway in the region. The project so far has looked at establishing a baseline. Whilst the overall aim of reaching the minimum prevalence rate of 20% of patients dialysing at home continues, the actual rates have fluctuated over the past few months. This gives an opportunity to understand what is causing these variations, and where sites can focus on to improve them.

The South East Network is currently being formalised with workplans for each workstream being finalised. The dialysis workstream is due to commence officially in March.

The following are the aims of the home dialysis programme over the next 24 months:

• Ensuring all sites provide reimbursement to patients on home dialysis.

• Increase access to home HD/PD machines.

• Support a functional Assisted Automated Peritoneal Dialysis (AAPD) programme.

• Continuing clinical support – ensure patients receive regular clinical assessments, including home visits.

• Ensuring equity of access and removing unwarranted variation.

There are other elements of the network that will support this, such as setting up the dialysis workstream and minimising infection rates.

2023 action pointsthe campaign continues…

The NKF has made great strides in the second year of the Increasing Home Dialysis Campaign as you will have read in the update.

We still have some way to go, but now we have the Regional Renal Networks set up across the country we will work with them all ensuring the patient voice is heard and that people being given the choice to dialyse at home is at the top of the agenda.

The 20% target is well underway for some, but for others there is still a struggle.

1 This two year on report will be published and publicised at the NKF’s pre World Kidney Day Parliamentary Event on 8th March 2023. The local and national media will be alerted via a press release.

2 This report will be circulated to the four devolved Governments requesting a response.

3 The NKF will continue to work with all of the Regional Renal Networks.

4 The NKF ask the Regional Renal Networks to provide an update in autumn regarding where they are with all of the units in their regions with increasing home dialysis.

5 The NKF will share this report with all KPAs and ask them to raise this with their Clinical Directors/Leads.

6 The NKF will seek to run a session about home dialysis and peer support at UK Kidney Week in 2023.

7 The NKF Home Dialysis Peer Support Service is very valuable to all who have used it, we will continue to increase the presence of this service throughout the UK, enabling people who are thinking of going onto home dialysis to speak to someone with lived experience.

8 There is currently a cost of living crisis, the NKF will continue to campaign to ensure people who dialyse at home are reimbursed for their utility costs.

9 The NKF will ask the Regional Renal Networks to tell us what their procedures are for ensuring everyone who goes onto home therapies is informed about reimbursement for their utilities and what the backup procedures are if there is a machine failure at home.

10 The NKF will produce a recording of a patient preparing the machine and needling themselves for home haemodialysis, and taking themselves off of the dialysis machine and a patient performing peritoneal dialysis.

11 The NKF are holding a Parliamentary Reception in March 2023, the APPKG will continue to raise awareness of home therapies and kidney disease.

12 The Clinical Directors/Leads will be asked to take action from this report and update the NKF of their plans to increase home dialysis during 2023.

Acknowledgements

This report has been a massive 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, Kirit Modi mbe, Tarsem Paul, Peter Constable, Linda Pickering, Pete Revell, Sharney Warren and John Roberts

The UK Renal Registry (UKRR) – Retha Steenkamp and Shalini Sathakumaran. 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).

The Renal Services Transformation Programme for their update by Prof. Smeeta Sinha National Clinical Director.

Thanks to renal Clinical Directors and Kidney Patients Association Chairs for their responses. Chris Marsden for the design of this report.

Appendices: Clinical Director plans and good practice tabulation

1 Berkshire Kidney Unit

What are your plans for increasing home dialysis?

1. We have increased our HD staffing levels recently in order to increase the number of patients. This will allow for more than one patient to be trained at a time and also provide additional resources for ongoing management of the existing home programme.

2. We are moving to a fixed HHD model, to reach wider patient cohort / different financial economy whilst still using NxStage. Machines have been purchased and these will be based in each unit allowing staff to train patients in a familiar environment and closer to their homes. Staff training is currently in progress as we are about to roll out this model. The plan will be to use Quanta traditionally in patients’ homes three times weekly or to mimic NxStage therapy dialysing four to two times weekly sessions but for shorter hours. With the purchase of four Quanta machines from capital funds during Covid we now have the ability to place a machine in all of our chronic dialysis units. We already have them in place and the chronic dialysis nurses have learnt how to use the machines and are using them as part of daily fleet. Pathway for new patients for home HD will start on this machine until they start their focused training with the home HD team. We have now budgeted extra resource to cover workforce to allow us to increase the programme.

3. Additional operator for the insertion of radiological PD catheters - a new renal consultant appointed, and a period of training and supervision has been completed / signed off. We now have two renal consultants that can insert radiological catheters we identified as potential single point of failure for our service. This has addressed this and increased service flexibility/availability which in time should increase PD numbers.

4. Revisit all patients that joined our programme acutely - to revisit education / modality choice to ensure no one on HD that would want / prefer PD.

5. To re-explore and promote shared care with our HD units - it is hoped this will reduce patient dependency, promote confidence, and encourage patients to transition to HHD. An option in time for those that want HHD but can’t because of lack of space in their home / fear they can undertake HD independently but in a supported environment.

6. Start an acute PD programme - we have this already but lack of internal space in x ray prevent our pd inserters from providing the service in real time. But it remains high on the agenda.

Do you have any examples of good practice that can be shared?

We offer patients a trial on the machine first. We have recognised over time that by having training machines in a unit, you see an increase in patient interest. We regularly have promotional events and invite patients to these that are from PD, low clearance and transplant to explore future options.

2 University Hospitals Birmingham

What are your plans for increasing home dialysis?

We are actively participating in the KQUIP DAY life programme and continue to take a pro-active approach to offering home therapies at the pre-dialysis stage. In addition to this we routinely re-visit the option of HHD with all In-centre Haemodialysis (ICHD) patients and are working on a pathway to enable more PD patients to move to HHD when needed.

Do you have any examples of good practice that can be shared?

1. ACE Acceptance, Choice and Empowerment (ACE) project at pre-dialysis stage for patients.

2. ICHD questionnaire to promote home dialysis.

3 Bradford Teaching Hospitals NHS Foundation Trust

What are your plans for increasing home dialysis?

Below are some of the main achievements to date.

1. We have introduced monthly combined Home Therapies, Advanced Kidney Care Clinic (AKCC) and Transplant Multidisciplinary Team (MDT) meetings for all patients in Bradford and Airedale. The principal aim of this meeting is to ensure quality and safety of patient care during the transition to dialysis, by coordinating timely access placement and improving access to pre-emptive renal transplantation.

2. We have introduced new opportunities to facilitate home therapies as part of our Renal Strategy, including haemodialysis shared care unit at St Luke’s (new starters experiencing shared care from the outset) and new haemodialysis facilities at Bradford Royal Infirmary.

3. We have restarted our practice of a monthly HD checklist to reinforce regular review of patient interest in home therapies.

4. As part of the new development at St Luke’s, we are able to set up our own carousel of patient information materials on the large TV screen in the new dialysis unit waiting area, including information about HD shared care, we share resources such as ‘There’s no place like home’ to support home therapies discussions with our patients as appropriate.

5. The current staffing levels of 1 Full Time Equivalent (FTE) of Band seven with 0.8 FTE of Band six (longterm sickness) and 1.6 FTE of Band five support the combined peritoneal dialysis (PD) and home haemodialysis service. The turnaround rate for Band five staff in the last three years has ranged from 50% to 80%. Therefore, retaining and recruiting staff with the right expertise into home dialysis is a major challenge. We are committed to produce and implement a Quality Improvement (QI) strategy that links to the KQuIP Home Therapies work stream, the Renal Services Transformation Programme (RSTP), our Trust GIRFT initiatives and the NKF project. We have initiated collection and reporting of a range of process and outcome longitudinal metrics to demonstrate trends in activity that we are using to support business cases to increase our current staffing levels.

Appendices: Clinical Director plans and good practice tabulation

3 Bradford Teaching Hospitals NHS Foundation Trust cont...

Do you have any examples of good practice that can be shared?

1. Bradford is the only centre in UK where we use expertise of an interventional radiologist for insertion of PD catheter under fluoroscopy with excellent catheter function rates. The unit also offers PD catheter salvage with fluoroscopic manipulation for any catheter flow dysfunction.

2. Since June 2021, a team of extremely enthusiastic laparoscopic colorectal surgeons have started to offer advance laparoscopy technique of PD catheter insertion with adjunctive procedures. This has not only improved catheter functions rates, but also meant we can offer PD to patients with high Body Mass Index (BMI), previous abdominal surgeries, presence of hernia requiring repair, etc.

3. We have been at the forefront of introducing validated patient decision aids (Yorkshire Dialysis Decision Aid [YoDDA] and Yorkshire Dialysis and Conservative Care Decision Aid [YoCDA]) to standard practice in our AKCC, supported by our Cultural and Health Improvement Officer (a unique role in the UK).

4 Wirral University Teaching Hospital

What are your plans for increasing home dialysis?

1. Participation in KQuiP QI project focusing on increasing HHD numbers (examples of change ideas to follow).

2. Increase access to NxStage/portable HD machines for patients unsuitable for static machine.

3. Focus on patient education, pre dialysis, ICHD and PD. Develop video showing patient experience of HD.

4. Shared HD programme to be developed.

5. Identify failing PD pts and unsure home HD considered and progressed if appropriate.

6. Engagement of all MDT in raising awareness of home HD.

Do you have any examples of good practice that can be shared?

Patient video showing personal home HD journey and benefits to their care due to be available in next few weeks.

5 Royal Cornwall Hospital

What are your plans for increasing home dialysis?

Well as soon as this procurement process is completed, we have 10 patients ready to go. We are refashioning a side ward next to the dialysis unit as a home training centre (£57k to start work on the 12th September). We are expanding our home dialysis staff. We are moving into a limited version of assisted PD (difficult in rural Cornwall) and taking steps to rework the CKD pathway to extol home dialysis more than we have done recently. Before the demise in our machine availability, we had 14.3% on home dialysis. Once we get the machines, that will immediately lift us to 15.8%, and we believe our plans will take us well above the target 20% on home dialysis.

Do you have any examples of good practice that can be shared?

No.

6 Royal Devon University Healthcare NHS Foundation

What are your plans for increasing home dialysis?

1. We have recently started a Percutaneous TK catheter insertion service to increase access to PD.

2. We have recently started an Acute Start PD service.

3. We continue to grow our NxStage Home HD numbers.

4. We are fully engaged in the South West (SW) Renal Operational Delivery Network (ODN) Home therapies QI work stream.

5. We have undertaken a PD peritonitis project to deep dive all aspects of PD care to reduce episodes of peritonitis.

6. We run an in house assisted PD team.

7. We continue to provide timely education and choice for home therapies.

8. We are trying to expand our Advanced Kidney Care Clinics to all the geographical areas we support.

9. We would like to restart home therapies with face to face education events when Covid allows.

10. As host Trust for the SW Renal ODN we are pushing the importance of choice and access to home therapies and continue to encourage regional collaboration and sharing of good practice.

Do you have any examples of good practice that can be shared?

See previous answer.

Appendices: Clinical Director plans and good practice tabulation

7 Doncaster Royal Infirmary

What are your plans for increasing home dialysis?

We have recently introduced NxStage and have seen a significant increase in interest in HHD. We have been working actively with our 3 HD units to increase shared care and encourage interest in HHD where appropriate. Our low clearance team discuss HHD and identify patients at the pre-dialysis stage where possible.

Do you have any examples of good practice that can be shared?

8 Sussex Kidney Unit (Brighton)

What are your plans for increasing home dialysis?

The South East (SE) network has prioritised increasing the home dialysis population and Brighton is taking an active role on the project (Day Life).

9 Epsom & St Helier Hospitals

What are your plans for increasing home dialysis?

1. To maintain staff at current levels in HHD team and increase staffing in PD team (funding agreed) audit speed of review of referrals and starting training to ensure we have a rapid process when needed.

2. We are expanding our pre-dialysis advanced kidney care service with more clinics opening up locally and the HHD team will work with these nurses to provide more education around home options.

3. We have also increased consultant provision in the teams that looks after new starter HD patients and will discuss HHD at this point in patients with an acute start onto the dialysis programme.

4. Peer participation in education to help increase confidence of new starters to take up home therapy.

5. Consider a ‘try before you choose’ programme, hands on experience sessions for home therapy options, to support patient confidence in choosing home therapies. For PD we are participating with London Kidney Network (LKN) to improve PD peritonitis rates to reduce patients having to change from PD to in centre HD.

For HHD

1. We have now got shared care targets in our Key Performance Indicators (KPIs) with our private providers in the satellite units but have not been holding them to these, mainly because they have also had staffing issues, we now intend to do this and also ensure that we are holding our own units to similar targets.

2. Our private providers have also agreed that they will provide training for patients to self-needle so that this is part of their training which can be carried out locally. Again, we need to ensure they are supported by our HHD staff to be able to do this and hold them to their agreement to do so.

3. Once we have opened up more dialysis capacity in two units (end of 2022/spring 2023) then we would aim to carry out some HHD training for patients in a Surrey unit.

Do you have any examples of good practice that can be shared?

1. Advanced percutaneous PD catheter insertion programme.

A Patients can have PD catheter within 24 hours if needed.

B Patients with previous abdominal surgery can still have percutaneous PD catheter.

C 3 Fluoroscopy guided PD catheter repositioning for poorly functioning PD catheters.

2. Working collaboratively with wider choice of industry partners to increase availability of training for patient starting PD.

3. We offer both portable and static HHD options, nocturnal HHD and solo HHD. We accept almost all those who wish to dialyse at home apart from those who are very unstable on dialysis, or who have a living kidney transplant planned within 6 months.

4. We already refund electricity and water bills for HHD patients.

5. A very pro-home therapy approach of the unit.

Appendices: Clinical Director plans and good practice tabulation

10 Wessex Kidney Centre Portsmouth

What are your plans for increasing home dialysis?

To renew dialysis contract with new provider. KPI’s targets to be set to increase HHD by the new provider.

1. Large HHD and PD programme, we have a home first culture and do not exclude patients. HHD - We offer experience the different sessions for patients who want to try HHD. We now offer a choice of machines (Quanta or NxStage). Continued education, a dedicated home HD team. Dedicated training space including respite area, minimal exclusion criteria, PD to HHD transition. Our nursing team both train and look after the patients in the community to ensure continuity and are HHD consultants to ensure expertise.

2. PD - Dedicated team and space (separate from HHD but collocated). No limit placed on assisted APD to ensure option or all. MDT working with dedicated consultants. Both teams have monthly MDTs and excellent communication between the MDT and frequently as required.

Do you have any examples of good practice that can be shared?

1. Education in pre dialysis clinics and HHD link nurses in dialysis units.

2. All patients seen by HHD consultant before training to discuss expectations, goals and options. Team do home visits before training.

3. Short training time (12 sessions on average to independent at home).

4. All excess types accepted.

5. Excellent MDT approach.

6. Individualisation of therapy, putting patient in the driving seat.

Lister Renal Unit, Stevenage/ East and North Herts NHS Trust

What are your plans for increasing home dialysis?

1. Relocation of our home therapies training area which is combined home PD/HHD area and does not have enough training space to sustain a growing home therapies programme.

2. Use of shared care to shorten training and allow patients to be trained for home HD outside of our limited capacity of HHD training area.

3. Promotion of PD amongst pre dialysis patients as well as HHD. Encouraging de-novo HHD training at the start of dialysis.

4. Shortening training with the use of educational material we are generating, videos.

5. Increase staff engagement and education through some four to six monthly education days on home therapies as part of a rolling programme or nurse/doctor education.

6. Exploring simpler technologies such as use of a Pisidia as portable therapy.

Do you have any examples of good practice that can be shared?

1. We have a significant expansion in shared care with a number of patients in the last year being fully trained on HHD within the main/satellite dialysis units thereby alleviating capacity issues for training in our home therapies area.

2. Use of combined portable/non-portable HHD treatment to promote uptake of HHD so that a portable therapy is offered as a ‘flagship’ treatment.

3. Ability to insert medical PD catheters within 24h except at weekends.

4. Having a PD/home HD team that share physical training space to allow cross-fertilisation of ideas and staff skills to allow patients to move from PD to HHD in a seamless way.

5. Use of incremental dialysis in the home setting both for PG and HHD as well as for in -centre dialysis so we utilise patients residual function level to individualise.

6. We proactively reimburse patients for their energy costs in HHD and HPD with an allocated member of staff responsible for this.

7. Patients on home therapies have good access to our renal support team including support from our renal social worker in assisting with re-housing where required and that also includes a benefits advisor.

8. All patients in home therapies have a high level of continuity of care with a named consultant in HHD and a PD consultant.

9. Organisationally we coordinate our home therapies team through a Home Therapies Operations group that meets monthly, and this group regularly reviews gains and losses of patients to the home therapies programme.

Appendices: Clinical Director plans and good practice tabulation

12 Hull University Teaching Hospital

What are your plans for increasing home dialysis?

1. To incorporate a home HD assessment with the PD home assessment.

2. Early review of all crash landers by home HD staff and PD staff.

3. Ongoing shared care within the HD unit.

Do you have any examples of good practice that can be shared?

1. Early review of crash landers by PD staff.

2. PD home visit for assessment and education early on in the journey through the pre dialysis clinic for all patients unless contraindication to PD or patient adamant they don’t want PD or home treatment.

3. Introduction of NxStage machine to enable more patients to access home HD.

13 Liverpool Alder Hey Children’s Hospital

What are your plans for increasing home dialysis?

1. Our HHD programme is in its infancy. Currently we have one patient training for HHD. If this is successful, then the other patients on the in centre haemodialysis unit hopefully will be encouraged to opt into the programme.

2. We had one patient using the NxStage in centre and has recently had a transplant. It was noticeable that their clinical parameters including blood pressure control, PTH and weight improved. The patient also reported that they could think more clearly which was important for their year academically. The clinical team have observed these outcomes and have adopted a favourable approach to using the NxStage.

3. Aiming for patient information to be translated into the patient’s first language.

4. Ensuring that there is a core of nurses working on the in centre dialysis unit that are trained and use the NxStage machine.

What are your plans for increasing home dialysis?

1. We are currently in the process of integrating the home therapies team (PD & HHD) to support cross cover of each home therapy creating a wider team to support each therapy.

2. Involvement in HD KQuIP – involves other units focusing on home therapies – we will be looking at learning from other units and adapting successful processes.

3. Home therapies involvement in CKD pathway QI project to streamline pathway into home therapies to support growth into the programme.

4. Planned move into a new hospital – will allow for focus on development of shared care in the in-centre dialysis unit.

5. Currently looking at developing a robust protocol for acute start PD.

Do you have any examples of good practice that can be shared?

At present the Home Therapies department is undergoing a review due to new clinical and nursing leads in post. There are a lot of changes in progress due the Trust merger and planned move to a new hospital, unable to highlight areas for good practice until review complete.

15 London: Barts Hospital, Renal Unit

What are your plans for increasing home dialysis?

1. Increase home HD and PD training capacity with building the independent treatment centre.

2. Those who can do haemodialysis independently but do not have suitable housing, to create a home from home environment.

Do you have any examples of good practice that can be shared?

1. MDT working in the home HD team with weekly planning meetings.

2. Fortnightly MDT business meeting in the PD team.

3. Close working between AKCC and PD/home HD to identify who is suitable for home therapies.

Appendices: Clinical Director plans and good practice tabulation

16 London: West London and Renal Transplant Centre, Imperial College Healthcare

What are your plans for increasing home dialysis?

We continue to grow our NxStage Home HD numbers.

Do you have any examples of good practice that can be shared?

The Trust QI team assisted in analysing the needs of the pathway through a transformation project which informed us how to adjust the service pathway and workforce. The strategic change lead spent time in the unit to review practice and look for efficiencies and analyse the needs. We then used this as a business case to move resource from the satellites to home therapy. Workings can be shared. (Table below). Have added a table below which runs to May 22. Have had a number of transplants in PD and numbers have plateaued. Would recommend factoring the impact of transplantation into the outcomes.

17 London: Royal Free Hospital

What are your plans for increasing home dialysis?

We plan to expand our home dialysis programme through increased education and awareness in our patient cohorts. We have an area at one of our satellite units we would like to dedicate to PD training (we currently do not have a training programme), as well as home HD assessment and education. Our HHD staff currently consists of one Band six nurse shared with our supported self-care unit. We hope that giving an allocated area will help the increase but will also aid the low clearance team with education. In addition, we have created a combined low clearance/home therapies specialist nurse role and hope this will encourage the uptake from low clearance.

17 London: Royal Free Hospital cont...

Do you have any examples of good practice that can be shared?

Our low exit site rates are an example of good practice. Our patients currently use an antimicrobial ointment on their exit sites and are also taught to use a shower pouch. We think this contributes to low incidents.

18 London: Kings College Hospital NHS Foundation Trust

What are your plans for increasing home dialysis?

Business case submitted for further expansion of home haemodialysis capacity from 50 to 75, following successful expansion from 20 to 50 over last two years. Ongoing growth of PD currently 113 patients. Recent successful business case to support expansion of assisted Ambulatory Peritoneal Dialysis (APD) programme from 10 to capacity 30 patients (23 patients to date) improving patient access especially for frail and elderly patients. We can also provide respite. PD Access, plan for two Urology surgeons to train with Frank Dor to complete advanced laparoscopic technique such as rectus sheaths tunnelling, adhesiolysis and partial omentectomy to support complex patients. We need to increase our estates footprint to provide extra space for PD training and assessment as well as Acute APD.

Do you have any examples of good practice that can be shared?

1. Recent successful business case to support expansion of assisted APD programme from 10 to capacity 30 patients (23 patients to date) with three more in the pipeline improving patient access especially for frail and elderly patients. We can also provide respite and early discharge following acute PD catheter insertion and supporting late referred patients pre PD training. This service has won a Dignity Awards at Kings due to positive patient feedback. The Band fours are also trained to provide refresher training to support enhanced training to prevent losses to the programme due to peritonitis adding value to the programme and reducing losses.

2. Kings has the capacity to provide PD catheter insertion using percutaneous seldinger technique under local anaesthesia to support late referred or crash landing patients within 24 hours. This service is nurse led performed by two nurses and two nephrologists trained to perform these procedures along with an associate specialist who can perform PD catheter removal and reinsertion along with creating new sites and removal of infected cuffs allows us to prevent unnecessary transfers to haemodialysis due to infection. We also provide day-case PD catheter repositions under local anaesthetic preventing losses due to PD catheter migration or blockage.

3. We have further trained three urology surgeons to complete our laparoscopic glycated albumin PD catheter procedures. We can have an urgent glycated albumin PD catheter placed within one week for emergent patients.

Appendices: Clinical Director plans and good practice tabulation

19 Oxford Kidney Unit

What are your plans to Increase HD?

We have a home HD strategy meeting and aim to double numbers by the end of the year. As a result of focused efforts, we have 14 in the pipeline to train for home. We have increased shared care on Quanta and have this machine in centre. We have done some staff education and consultant education to reduce bias. We do fast tracking (in 14 days) and education pre HD.

Do you have any examples of good practice that can be shared?

1. Home grown assisted PD service of 13 years (not commercial sector), greater flexibility / cheaper / patients remain on programme extended times / useful for admission avoidance / most vulnerable get 365 home visits / enables us to take service to patients home and variety of other centres respite / rehab ots then receive right care by right team in right place. Reduces in patient time, give patients / relative a rest of just a valuable modality option either as a 1st treatment or if patient is failing PD and PD is not failing patient. Staff retention in the service is excellent a very enjoyable renal job / rewarding / lots of variety.

2. Home therapies nurse led service - open door policy for troubleshooting PD issues / other renal home therapy patients i.e. transplantation / low clearance in real time (Monday - Friday core hours service) then back up out of hours from renal ward. Reduces medical input / prevents need for admission / reduces clinical delays / utilises skills of very experienced renal nursing staff. Again, right place, right speciality in a timely way prevents admission / disease complications / improves patient wellbeing and experience / most cost effective and efficient.

3. Home haemodialysis migrated to being under the reporting structure of the vascular access nurse in the HD department some two years ago. This has had the benefit in that this team are more knowledgeable and experts in haemodialysis. The team work more closely with HD units so have an active role in promoting the therapy to in centre patients, in addition to working with the low clearance team from where we hope to secure and source more interest at an earlier stage in home HD.

4. The renal vascular access nurse is currently Chair of the South East region network collaborative working on the KQuIP MAGIC project and also is a member of the South East region working on the KQuIP DAY Life project aiming to increase the numbers of patients able to undergo haemodialysis at home.

5. We are able to offer the full range of PD services as a first modality PD/AP/D/aAPD with the full fluid profile available.

20 Sheffield Kidney Unit

What are your plans for increasing home dialysis?

1. Introduced a medical PD catheter insertion programme since August 2020, which has led to an increase in PD numbers from 55 patients to 83.

2. Appointment of home therapies clinical fellow to drive quality improvement within the service.

3. Introduction of an acute start PD protocol.

4. Continued growth of shared HD programme.

Do you have any examples of good practice that can be shared?

We have developed a Patient Report Experience Measure around PD catheter replacement, the Patient Reported Experience Measures (PREM) will drive quality improvement within the service.

21 Shrewsbury

What are your plans for increasing home dialysis?

1. Departmental agreement about benefits of home therapies.

2. Promote home therapies in CKD, dialysis and transplant pathways.

3. Explore HHD options with established HD patients.

4. Continued education of staff and patients.

5. Ready access to medical PD insertion.

6. Planned transition from PD to HHD.

Do you have any examples of good practice that can be shared?

1. Departmental agreement about benefits of home therapies.

2. Promote home therapies in CKD, dialysis and transplant pathways.

3. Explore HHD options with established HD patients.

4. Continued education of staff and patients.

5. Approximately 50% of incident patients commence home therapies.

6. Improved infection control.

7. Planned transition from PD to HHD.

Appendices: Clinical Director plans and good practice tabulation

22 York Hospital

What are your plans for increasing home dialysis?

1. We are looking at developing training rooms off the main hospital site to allow access for training away from acute areas.

2. Capacity and space are a limiting factor in training for home haemodialysis. Separate training areas are vital for allowing training to take place.

3. York has a shared care area which has been instrumental in developing skills in both patients and staff for self-care before patients go home.

4. York also has two self-care dialysis units which allows patients to dialysis themselves under the care of the home team on a hospital site but independently.

Do you have any examples of good practice that can be shared?

1. The self-care unit at Harrogate has two patients who do dialysis independently of nursing staff.

2. They are able to access the unit and provide their own dialysis at times suitable for themselves.

NORTHERN IRELAND

23 Antrim Renal Unit

What are your plans for increasing home dialysis?

1. Northern Health and Social Care Trust (NHSCT) has a strong history of championing Home Therapies, led by the Home Therapies Nursing Team. I am a passionate advocate of Home Therapies and over the last three years I have tried to help develop the service. Our team visited Prof Edwina Brown in West London in August 2019. In NHSCT I identified that a major barrier to PD was insertion of the catheter – there was no local percutaneous service in Northern Ireland (NI) and frequent difficulty in securing theatre slots for surgical insertions. I therefore spent a number of weeks with Sr Elaine Bowes in Kings College London as well as Dr Mark Denton in Beaumont Hospital, Dublin, learning more about their services and how to insert PD catheters percutaneously. I can now carry out this procedure independently for our NHSCT patients. This service is flexible and responsive to patient needs. We also have an excellent PD catheter insertion service developed by Mr Stephen O’Neill in Belfast City Hospital over the last two years; he carries out insertions under fluoroscopy, laparoscopically and using open surgery. He is supported by his transplant surgical colleagues who insert catheters under open surgery.

2. I have read the presentation by Dr Rosie Donne and I am pleased to say we have a very similar service in NHSCT. The statistics for Home Therapies in Northern Ireland from December 2020 need to be interpreted in context. During 2020, Belfast City Hospital Transplant Unit remained open during the early stages of COVID and carried out many more deceased donor transplants than usual (‘over 100 in 100 days’ quoted in the press). Many more Home Therapy patients than In Centre patients were transplanted due to the nature of these patients. In addition, very few PD catheters were inserted during 2020 as they were deemed ‘non-emergency’ by our local Healthcare Management. Both these factors significantly reduced the numbers of Home Therapy patients at that point in time.

3. Transplants have now returned to their normal level, and we have an excellent PD catheter insertion service. The Home Therapies numbers have increased and should continue to do so over the coming months/years.

4. One development that would really help us increase our Home Therapies numbers in NHSCT would be assisted CAPD (two exchanges per day). We have assisted APD carried out by a private Healthcare Company (who struggle to recruit sufficient staff). They decline to provide assisted CAPD. We have one of the oldest RRT populations in the UK and have a very large catchment area. There is a large retirement population who live nearly one hour from our HD unit. A significant number of very elderly patients (over 80s) would be keen for assisted CAPD (two exchanges per day) but would not accept APD as they live alone, do not want to be attached to a machine overnight, cannot connect/disconnect, are concerned about trip hazard of line, and are daunted at the idea of troubleshooting the machine in the evening and overnight. I have appealed to Belfast City Hospital who manage the private Healthcare Company, the Commissioners and the local Procurement Team but have had no success. This is an ongoing challenge for us. We are now considering employing a Band three or Band four Healthcare worker within our own Trust to help with assisted CAPD.

5. Home HD has declined over the last few years, partly due to excellent Transplant and PD services. The extreme pressures on the In Centre HD staff over the COVID period has meant that the ‘Shared Care’ programme which encourages patients to move from In Centre HD to home HD took a back seat. We are now trying to build this programme again and hope to see a consequent increase in home HD patient numbers.

Do you have any examples of good practice that can be shared?

See previous answer.

Appendices: Clinical Director plans and good practice tabulation

24 Daisy Hill, Newry, Southern Trust

What are your plans for increasing home dialysis?

1. We consistently focus on home therapy as an ideal option for Low Clearance Clinic (LCC) patients in terms of quality of life outcomes. We participated in the Frail Elderly Patient Outcomes on Dialysis (FEPOD) study and have been early adopters of assisted PD in Northern Ireland since its inception in the region. We currently have 11 patients on APD and nine of these patients are aAPD, so our HT population are an elderly population. It is a lot of work to get these patients on the programme and time spent on treatment is short (so actual numbers on home haemodialysis therapy fail to reflect the activity of our HT staff who have a relatively high incident take on rate due to the nature of our population). We feel for elderly patient’s aAPD is hugely preferable to in-centre HD from a quality of life perspective.

2. We had an unprecedented surge in transplantation in NI in 2020-21 and this converted many of our home treatment cases to transplant, so our HT numbers don’t fully reflect our focus on the HHT option which remains our default dialysis option when possible.

Do you have any examples of good practice that can be shared?

We have secured local anaesthetic PD lists with interventional radiology which expands our options for those patients keen to do assisted PD but are too high risk for glycated albumin. This has been enormously important for frail patients keen on dialysis who would not get a glycated albumin and is the single most important development in or service over the past five years.

25 NHS Grampian, Aberdeen Royal Infirmary and associated satellites in Orkney, Shetland, Peterhead, Banff, Stonehaven, Elgin, Inverurie

What are your plans for increasing home dialysis?

1. Offering home visits to ALL low clearance patients at first low clearance clinic.

2. Standardised approach in low clearance clinic with early discussion regarding transplant first if appropriate, followed by home therapy discussion focussing on ‘would you like treatment at home or hospital’.

3. Recent appointment in last years of dedicated shared care nurse who will take on additional responsibilities for HHD patients.

4. Offering APD to all patients opting for PD.

5. Offering to go straight onto APD so train on manual but straight to train on APD same week.

6. Offering days off to patients on CAPD (if first RRT and RRF allows) and dry days to patients on APD.

7. Financial help with electricity costs as this is something that could end up a negative as energy costs increase.

8. Revisiting HD patients to see if they would like to consider PD after initially opting for HD.

Do you have any examples of good practice that can be shared?

1. Low clearance multi-disciplinary team consisting of 6.2 Working Time Equivalents (WTE) Home therapy specialist nurses, Renal Dieticians who are promoting more home therapy.

2. Consultant with QI interest who is part of the Scottish Renal Registry QI subgroup and leading on Shared Care.

3. Consultants with special interest in home HD and PD - two consultants.

4. PD numbers have increased over past year from around 21-31. Down to offering flexibility in start on PD (dry days).

5. Appointment of dedicated shared care nurse in March 2021, have doubled HHD numbers from three to six in last three months with dedicated shared care/self-care HD room and training by shared care nurse.

6. Shared care numbers in total since the beginning of programme in March 2021-22 participating-most doing part of care, some virtually all and of these two have gone on to HHD and three have been transplanted.

7. Upgraded five healthcare support workers to promote, support and assist with shared care and HHD, so we have a team of six nurses on the dialysis unit.

8. Staff education programme being developed which we hope will in turn helps us to progress with shared care and HHD.

9. We have also developed a patient training programme which has been tried and tested by the patients.

10. Promotional video of shared care starring a full self-care patient promoting it as a step to HHD by posters. Available on NHS Grampian YouTube site and also shared with Public Health Scotland.

https://www.youtube.com/watch?v=P5DckRKPxys

Appendices: Clinical Director plans and good practice tabulation

26 Crosshouse Hospital / John Lynch Renal Unit

What are your plans for increasing home dialysis?

1. Now Covid-19 restrictions are lifting we will be restarting our education programme with low clearance patients. Group education sessions and patient experience have proved successful in the past.

2. We can now offer two dialysis machines giving greater choice and flexibility to our patients.

3. We have recently recruited and trained a Home Haemodialysis Support Worker who is able to support patients who need additional support/assistance and prevent a return to in centre dialysis.

Do you have any examples of good practice that can be shared?

1. The recruitment of the HDSW has resulted in direct benefit to home patients, their families and careers including:- Support for patients enduring chemotherapy, making it possible for them to be assisted at home with their dialysis, removing the burden of coming into the renal unit three times per week. Support for a family who suddenly lost their main carer. The HDSW has been able to assist with dialysis at home, allowing the daughter to continue with her own profession and care for her father prevented him coming back into the renal unit to dialyse. Support for the two nurses during annual leave. Previously allocation of work would be organised around two staff members. Any sickness absence or annual leave would have had an impact on the renal unit staff.

2. Patients, carers with increased friability require additional assistance with their dialysis treatment in order for them to continue to make the choice to dialyse at home.

3. If these patients were to dialyse within the renal unit, they would require hospital transport to and from the hospital and they would put further strain on an already under pressure service. We can now offer assistance to these patients and their families to allow them to remain at home.

27 Dumfries and Galloway Health Board

What are your plans for increasing home dialysis?

1. Continue to promote home therapies through the kidney care planning clinics.

2. Have an education day at the renal unit with patient involvement.

Do you have any examples of good practice that can be shared?

All the patients approaching Kidney Replacement Therapy (KRT) are counselled at home by our kidney care planning nurse at the patient’s home along with the patient’s family.

28 Renal Medicine, Royal Infirmary Edinburgh

What are your plans for increasing home dialysis?

We have a dedicated home haemodialysis nurse who promotes self-care and then home based haemodialysis if the patients wish. We have introduced NxStage recently to help extend our home haemodialysis options. We have doubled our number of patients performing haemodialysis at home in the past 12 months.

29 University Hospital Kilmarnock, Scotland

What are your plans for increasing home dialysis?

1. We continue to promote HHD in our pre-dialysis education and have been successful in recruiting that way. We no longer present dialysis as a modality choice but rather as a venue choice. Once someone has decided to go home then it is a discussion about PD or HD at that stage. The options presented in order of (our) preference would be transplant/home/hospital HD.

2. We are utilising different machines and contracts – essentially tailoring the experience to the patient. For those that like to travel or who have little space we are using a compact machine. For those with no likelihood of transplant we use Hemodiafiltration (HDF) on a machine that we buy and maintain. For those likely to get a transplant soon we are leasing machines on a per-treatment basis.

Do you have any examples of good practice that can be shared?

1. We are happy to look at home adaptations to suit the individual. Some are in the home and others in the garden. We utilise local tradespeople who are getting more familiar with our requests!

2. Electricity is reimbursed at an agreed rate (may need to be re-agreed).

3. I think one of our biggest assets is our home haemodialysis team who are passionate about what they do. If it wasn’t for the support and positivity that they bring to the program I doubt we would be as successful as we have been up to this point. We do it because it is the right thing to do!

Appendices: Clinical Director plans and good practice tabulation

WALES

30 Gwynedd Hospital, Elidir Renal Unit, North Wales

What are your plans for increasing home dialysis?

1. Assisted PD.

2. Training family members for those who can’t do haemodialysis due to different reasons.

3. Monthly unit MDT meetings highlighting suitable cases for home therapy plus discuss other matters like transplant, access, etc.

4. Training for home dialysis does not include those with Tunnelled lines if there is delay or not possible to have Arteriovenous (AV) Fistula (AVF) for different reasons.

Do you have any examples of good practice that can be shared?

1. Our home therapies team have won the Nursing Times Award 2021 for training learning disability nurses to dialyse a young patient with a learning disability to dialyse at the centre where they are and whenever convenient instead of coming to hospital three times a week.

2. We are in the process of training family members of another patient with learning difficulties to go on home HD until they await a kidney transplant.

3. Almost 50% or our transplant patients over the last eight years came through home therapy.

4. Our home therapy patients are 37% of the whole dialysis population.

Correspondence from the Devolved Governments

Response from English Government

Dear Mrs Brown,

Thank you for your correspondence of 11 March about home dialysis. I have been asked to reply and I hope you will accept my sincere apologies for the long delay in doing so.

I would first like to reassure you that the Government is committed to supporting people living with chronic kidney disease and increasing the provision of home dialysis remains a priority, as part of the elective recovery agenda.

The Government acknowledges that home dialysis has the potential to deliver significant benefits in terms of patient experience and outcomes, giving patients both flexibility and autonomy in their treatment. The Government commends the efforts of the All-Party Parliamentary Kidney Group and others within the renal community for continued work to champion increasing access to at-home dialysis treatment.

To increase the provision of home dialysis the department is working closely with NHS England to implement the Renal Services Transformation Programme (RSTP). As set out in the National Kidney Federation’s report referenced in your correspondence, one of the key strategic priorities of the RSTP is to increase the provision and accessibility of home dialysis treatment for chronic kidney disease patients. In support of this, NHS England has set up eleven renal clinical networks who are working to determine local priorities, working closely with integrated care systems (ICSs).

RSTP is developing a range of products to support delivery and implementation that will aid transformation, including a best practice toolkit and a data dashboard outlining key metrics to support better decision making. Providers of renal services, ICSs and regional commissioners will continue to monitor uptake of home dialysis via the UK Renal Registry and NHS England Renal datasets. The RSTP deliverables are being developed in collaboration with patient groups, clinical and non-clinical colleagues, and are due to be released by April 2023.

The Transformation Programme has also appointed a National Clinical Advisor specifically for dialysis care to develop and share best practice. The Programme will provide recommendations to all renal services to support achieving the 20 per cent home dialysis prevalent rate per provider, as recommended in the September 2021 Getting it Right First Time National Report on Renal Medicine. The national transformation team is in the process of sharing a national data pack with clinical networks that will prompt them to carry out further reviews.

The Government knows that by investing in home dialysis, local systems will be able to deliver better experience and outcomes for patients and reduce their spend on patient transport to dialysis centres in hospitals. To further support healthcare professionals and commissioners, there is also a range of guidance produced by the National Institute for Health and Care Excellence (NICE) available for commissioners and clinicians to support patients’ access to home dialysis treatments, when appropriate for the individual.

I hope this response is helpful to yourself and the All-Party Parliamentary Kidney Group and reassures you that the Government continues to take action in this important area.

Yours sincerely,

C Winters

Ministerial Correspondence and Public Enquiries Department of Health and Social Care

Correspondence from the Devolved Governments

E : clinical.priorities@gov.scot

Andrea Brown andrea@kidney.org.uk

Response from Scottish Government

Our Reference: 202200287697

29 April 2022

Dear Andrea Brown,

Thank you for your email of 11 March 2022 regarding your report - Increasing Home Dialysis in the context of COVID-19 - One Year On. I am responding on behalf of the Cabinet Secretary for Health and Social Care. Please accept my apologies for the delay in responding.

I want to assure you that the Scottish Government is committed to ensuring that people living with kidney disease are able to access the best possible support and benefit from healthcare services enabling individuals to access the right care for them in the right place.

Renal units in Scotland are supportive of home dialysis where it is clinically recommended and individual circumstances allow. In Scotland we are at the forefront of using service and performance data to improve care and diagnosis of kidney disease. This includes the work of the Scottish Renal Registry which reports on patients receiving renal replacement therapy and promoting excellence in renal care in Scotland through best practice audits.

We understand the impact the COVID-19 pandemic has had the people of Scotland, especially those living with a long-term condition such as kidney disease. As we begin to emerge from the pandemic we are committed to taking action to support our NHS. Last year we published our Recovery Plan that sets out our plans for health and social over the next 5 years. The plan is backed by over £1 billion of funding and will l support an increase in inpatient, daycase, and outpatient activity to address the backlogs of care, which will be supported by the implementation of sustainable improvements and new models of care. It is our intention that this investment and these actions will lead to improved NHS care and services for everyone in Scotland, including people with kidney disease.

Yours sincerely

I hope you find this information helpful.

Yours sincerely

St Andrew's House, Regent Road, Edinburgh EH1 3DG www.gov.scot

Sharon Robertson Policy Manager

Sharon Robertson Policy Manager

Y Grŵp Iechyd a Gwasanaethau Cymdeithasol Health and Social Services Group

Response from Welsh Government

Dear Andrea,

Increasing Home Dialysis in the context of COVID19 – One Year On

Thank you for your letter of 11 March on behalf of the National Kidney Federation regarding home dialysis kits for kidney failure patients during the COVID-19 pandemic.

I hope I can assure you that we are committed to offering home dialysis to more patients in Wales. We already have higher rates of home dialysis than the UK average and are looking to build on this significantly.

We are also aware of the higher risks from COVID-19 for those receiving unit dialysis as compared to home therapy and this has been the subject of discussions at the Welsh Renal Clinical Network Board (WRCN). A ‘Pathways to Home’ strategic model is now being put in place to increase access to home dialysis and reduce unwarranted variation of uptake within the health board localities.

This model has been evolving from a co-produced research study led by Dr Gareth Roberts, Consultant Nephrologist and Clinical Lead, WRCN. This research was designed to gain a fuller understanding as to why the majority of patients ‘opt’ for unit dialysis as a first choice and what service barriers need to be addressed to facilitate a ‘home first’ approach.

A review of the National Framework for Home Dialysis is underway as well as a review of Service Specifications to ensure alignment to the home dialysis strategy. An All Wales Education group has also been established with the aim of coordinating the collaborative co-production and maintenance of a comprehensive suite of resources for all kidney patients and supporting healthcare professionals in Wales.

WRCN is also collaborating regularly with kidney charities to provide newsletters containing home dialysis content. Local kidney cafés for home dialysis will provide information on home dialysis, and peer support for current home dialysis patients and those choosing renal replacement options.

I hope this information is helpful.

Yours sincerely,

CAROLINE LEWIS Tîm Polisi Gofal Iechyd Seiliedig ar Werth – Value Based Healthcare Policy Team Gofal Iechyd Poblogaethau – Population Healthcare