Increasing Home Dialysis in the UK - Three Years On

INCREASING HOME DIALYSIS IN THE UK – THREE YEARS ON

Part 4

National Kidney Federation

The

National Kidney Federation (NKF) takes pride in being the largest kidney patient charity in the UK, operated by kidney patients for the benefit of kidney patients.

Established in 1978, the NKF emerged as a national organisation, bridging independent charities, now known as Kidney Patient Associations (KPAs). The formation of the NKF was a response to the realisation that a cohesive national entity was needed to advocate for their cause and address the escalating demand for improved renal provision.

The NKF plays a crucial role as the Secretariat for the All-Party Parliamentary Kidney Group (APPKG), actively working to enhance understanding within Parliament of kidney disease and transplant medicine. The group aims to champion advancements in health and care services for individuals dealing with renal failure.

At its core, the NKF Executive Committee comprises patients and carers who are typically affiliated with Kidney Patient Associations. With a history spanning over 45 years, the charity maintains a dual focus: providing a range of National Patient Support Services and advocating for enhancements in renal provision and treatment. It is estimated that 3.5 million people live with kidney disease in the UK (encompassing stages 3 to 5 CKD). The NKF stands as a beacon of support and hope for patients and their families. The charity engages tirelessly with the Government, the Department of Health, NHS Blood and Transplant, and the NHS, urging for improved treatment and services for kidney patients.

As the challenges of kidney disease persist, the NKF remains dedicated to offering support to those in need while actively contributing to the evolution and transformation of the renal healthcare landscape.

Introduction

The NKF is pleased to publish the ‘Increasing Home Dialysis in the UK –Three Years On’ Report. The intentions of this report are to share the collated outcomes from the campaign in 2023 and to encourage the renal community and beyond to continue taking action.

In 2021 the NKF put forward seven recommendations in our first report. These can be found on pages 17 - 18: www.kidney.org.uk/home-dialysiscampaign#Increasing_Home_ Dialysis_in_the_context_of_covid_19_ in_the_uk_january_2021_report

This latest report continues NKF’s mission to request correspondence from Devolved Governments and Clinical Directors of Renal Services in the UK to respond with their progress and good practice. We are pleased to share these responses on pages 35–61.

We are pleased to have received 29 responses from Clinical Directors, below is a list of the renal centres that responded:

Alder Hey Children’s NHS Foundation Trust

Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust

Bristol Royal Hospital for Children

Leeds Teaching Hospitals NHS Trust

Central Manchester University Hospitals NHS Foundation Trust

Epsom and St Helier Renal Unit

Royal Free London NHS Foundation Trust

Salford, Northern Care Alliance NHS Foundation Trust

Southmead Hospital Bristol

Leeds Children Hospital

Evelina London Children’s Hospital

Colchester Renal Unit

King’s College Hospital NHS Foundation Trust

UHNM NHS Trust, Royal Stoke University Hospital

Royal Shrewsbury Hospital

Berkshire Kidney Unit

Broomfield Hospital

Royal Cornwall Hospitals NHS Trust

Sheffield Teaching Hospitals NHS Foundation Trust

Lancashire Teaching Hospitals NHS Foundation Trust

Royal Devon & Exeter University Healthcare

NHS Trust

Kent & Canterbury Hospital University NHS Foundation Trust

Addenbrookes / Cambridge University Hospitals Foundation Trust

Aberdeen Royal Infirmary NHS Grampian

Raigmore Hospital, Inverness, NHS Highland

Monklands Hospital, Airdrie, NHS Lanarkshire

Queen Elizabeth University Hospital Glasgow

Wirral University Hospital NHS Foundation Trust

Swansea Bay University Health Board

Some of the Clinical Directors who responded to our survey last year did not update their figures, but we believe that their commitment to improving home dialysis figures remains.

With the report we are also happy to share an update from NHS England’s Renal Services Transformation Programme on page 12.

In terms of the home dialysis data that are featured within the report, the NKF are most grateful to the UK Renal Registry for producing analysis of the latest

Introduction cont...

data, including data centre-by-centre, found on pages 13–21. However, we are disappointed that the overall 2022 data is not as positive a result as the previous year demonstrating a reduction in national percentage of home dialysis from 17.5% to 16.9%.

The NKF encourages all centres to use the home dialysis data included in the report to develop robust plans so that we can reduce the large number of centres where the provision is below 20%.

The success of the NKF Home Dialysis Peer Support Service is continuing nationally. We expanded our free patient support services in 2021 and have gone from strength to strength with the services we provide. We now have 21 volunteer peer supporters with a wide range of ages, who are professionally trained and who have experience with home haemodialysis (HD), peritoneal dialysis (PD), going on holiday whilst on HD, PD, caring for someone on HD, lifestyle and working whilst doing home HD or PD. You can find out more about the service on page 22–23.

National Improvement programme DAYLife which was re-launched in 2022 explores the work they have been doing to overcome barriers and challenges of home therapies on pages 24–25.

We also feature in this report the seven Regional Network responses that have been provided to us on pages 26–31.

All the Regional Networks were asked what progress has been made for increasing home dialysis in their area as well as plans they have for 2024. We also asked what the home dialysis reimbursement arrangement is for each unit in their network to provide a national picture. However, some of the responses did not include what reimbursements were in place. The NKF believe all patients should be reimbursed in a timely manner with use of the reimbursement calculator.

The reimbursement calculator can be found on the NKF website: www.kidney. org.uk/meeting-the-cost-of-homedialysis-treatment-together-we-can

The Regional Network responses include:

North East Network

North West Network

Yorkshire & Humber Network

Midlands Network

East of England Network

South West Network

London Network

On pages 32–33 we are pleased to support and provide information on the Inter-CEPt Study. The Inter-CEPt study team and the Patient Advisory Group recognises the variation of access to home dialysis and uses findings to propose interventions that may help reduce the current between-centre variation in home dialysis uptake.

Actions for 2024 have been set out by the NKF which can be found within this report on page 34. The actions include that the NKF will request all Kidney Patient Association Chairs to raise this report with their Clinical Directors/ Leads. The Home Dialysis campaign will end in 2025, therefore we intend to arrange a Summit in partnership with the APPKG next year.

This report will be circulated widely, and will be published on our website www.kidney.org.uk

A hard copy of the report will be sent to Chairs of all Kidney Patients Associations (KPAs) who 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 take action.

NKF Home Dialysis Campaign –Update on progress in 2023

Our campaign to increase home dialysis to a target of at least 20% of dialysis patients dialysing at home has continued to gain momentum over 2023. This Three Years On Report covers the work that has taken place in the past year in aiming to reach this target and we pay tribute to the progress that has been made in many parts of the country. Unfortunately, the significant growth in patients needing dialysis has hampered efforts to increase this percentage and to an extent, this is reflected in the figures.

The Two Years On Report that was launched at a meeting of the All Party Parliamentary Kidney Group for World Kidney Day in March 2023 set out the twelve action points that the campaign would focus on during 2023 (www. kidney.org.uk/home-dialysiscampaign#Increasing_Home_ Dialysis_In_The_Context_of_ Covid_19_in_the_UK_Two_Years_On)

Good progress has been made on all the action points and will continue through 2024.

The APPKG meeting also saw the launch of a short film where we partnered with ITN Business to produce ‘Understanding Kidney Health’, a newsstyle programme featuring clinicians, stories of patients and the loved ones who care for them (www.kidney.org. uk/understanding-kidney-healthwith-itn).

The Two Years On Report was distributed widely to ensure that it was seen by all interested parties i.e.

• National and local media

• The UK government and the devolved administrations

• All Kidney Patient Associations requesting them to share it with their Clinical Directors/Clinical leads

• All Clinical Directors/Leads along with a survey seeking information on home dialysis in their area.

Since the last report was published, the Renal Services Transformation Programme (RSTP) has completed its first stage. A comprehensive communications and engagement strategy is being developed which will facilitate the use of the RSTP Dashboard and Toolkit across systems. The NKF have worked closely with the RSTP board since its inception in 2021. The focus is now on the Regional Renal Networks, all of which have been established and a report on their progress can be found on (pages 26–31) of this report. NKF representatives attend the regional network meeting to ensure that the patient voice is integral to the development of the network.

In order to continue to measure progress, in the Autumn all renal units were asked to provide an update on their home dialysis figures along with their plans for the future and the results are on (pages 35–59).

The NKF continues in its role as Secretariat to the APPKG and the current APPKG Chair is Khalid Mahmood MP, who took over the Chairmanship when the previous Chair, Laura Farris MP stood down. Mr Mahmood is himself a kidney transplant recipient, having previously been on dialysis, so we are fortunate that he will bring his lived experience to the role. The home dialysis campaign has been very positively received by this group.

At the NKF we continue to welcome the research with the Inter-CEPT programme and look forward to their report as well as continuing work with the Kidney Quality Improvement Partnership (KQuIP).

A session at the UK Kidney Week conference in June looked at the challenges and future direction of home dialysis as well as presenting on the success of the NKF Home Dialysis Peer Support initiative that we have been running to support this campaign. In this context the Home Dialysis Peer Support Service continues to be well used and highly valued and a report on this service is included on (pages 22–23). It provides potential and current home dialysis patients and those who care for them with a valuable opportunity to talk to a patient or carer about their lived experiences. The ability to talk about the issues outside a clinical framework is appreciated by callers to the NKF helpline.

The NKF Annual Patients’ Event in September was very successful and well attended, providing delegates with the opportunity to network and share their experiences. A major feature was the presentation on Kidney Beam – the exercise and wellbeing programme designed for kidney patients and well-suited for home dialysis patients in England and free for everyone to access.

We are very aware of the cost of living crisis faced by so many kidney patients and the NKF are doing all we can to ensure that the proper reimbursement for utility costs is available for people dialysing at home.

The NKF continues its work on the home dialysis campaign particularly in view of the significant benefits that accrue for patients’ wellbeing and quality of life. A further report on progress will be produced describing the progress made during 2024.

Overview of Government Responses

The success of the NKF’s campaign to increase home dialysis rates is dependent on the support of the four nations’ governments through their strategic intent and the implementation of policies, pathways, project delivery and guidance.

In Autumn 2023, NKF Chief Executive, Andrea Brown contacted all four administrations requesting an update on their activities over the last year which support the increase of home dialysis uptake and information on their reimbursement arrangements for people dialysing at home.

The Department of Health and Social Care in England, the Directorate for Chief Operating Officer in Scotland, the Welsh Government and the Department of Health in Northern Ireland responded and reiterated their support for the campaign.

The Department of Health and Social Care in England confirmed that increasing the provision of home dialysis treatment for kidney patients remains a priority, recognising the benefits in patient experience and outcomes. NHS England’s Renal Services Transformation Programme (RSTP) is actively working through the Renal Clinical Networks. Detailed service specifications ensure patients have flexibility and autonomy in treatment options available, with a focus on increasing home dialysis rates and ensuring care is high quality and consistent.

The Directorate for Chief Operating Officer in Scotland provides policies, frameworks and resources to NHS Health Boards to deliver services that meet the needs of the local population. The government acknowledges the financial strain on energy consumers, particularly those who receive home-based treatments. To address this they aim to remove the current variation across NHS Health Boards by reimbursing additional electricity costs associated with home dialysis through the implementation of a national policy.

The Welsh Government is committed to expanding home dialysis services. The Welsh Kidney Network (WKN) is pursuing the Pathways to Home strategic model to increase access to home dialysis, reduce unwarranted variation of uptake, utilise research regarding the barriers to ‘a home first approach’, and evaluate various projects addressing issues of equity identified for Welsh patients. Utility cost reimbursement is available to all Welsh patients dialysing at home. The tariff is reviewed annually ensuring no patient is disadvantaged. The WKN’s utility reimbursement calculator is accessible to all four nations.

The Department of Health in Northern Ireland the Department’s Strategic Planning & Performance Group has provided funding to support and encourage discussions among Trusts about the option of home dialysis for patients. Efforts are being made to extend financial support for medical devices used in home dialysis, benefitting patients receiving peritoneal dialysis. The Department recognises the importance of kidney transplantation as the preferred treatment for kidney failure and boasts a successful live donor transplant programme and maintains the highest rate of pre-emptive kidney transplants in the UK.

Overall the collaboration between the NKF and the government bodies of the home nations signifies a positive step towards expanding home dialysis services and improving kidney health care across the UK.

The complete text of all four home nation responses and information about other renal initiatives they are undertaking can be found on pages 60–61.

Overview of Clinical Directors Responses

As part of the campaign to increase the incidence of home dialysis, all 89 Clinical Directors across the country were asked to provide details of their Home Therapies programmes, to describe their plans for the future and to share any examples of good practice.

A total of 29 responses were received and of these 23 were from England, four from Scotland and two from Wales.

The information requested was in two main parts – firstly the basic data of 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 rates of home dialysis and invited them to share innovation and good practice that might be useful to others. Some of the responses also included updates from last year’s report.

An analysis of the basic data showed their percentage on home therapies, between 0% and 80%.

The 80% related to Bristol Hospital for Children.

The next highest percentage of patients on home therapies was Evelina London Children’s Hospital with 64%.

And then Alder Hey Hospital with 40%.

All the above listed are children’s hospitals, therefore they may not be representative of the generality.

The next highest percentage was Royal Shrewsbury Hospital with 30%.

Some of the clinical directors who responded to our survey last year did not update their figures, but we believe that their commitment to improving home dialysis figures remains.

The average percentage of patients on home dialysis of those who responded to the NKF recently separate from the 2022 UK Renal Registry data is 20.56% or 15.33% if Bristol, Evelina, Alder Hey and Leeds Children’s Hospitals are taken out of the calculation.

Within our report from last year, the average proportion of patients using home dialysis among those who participated was 18%. This figure dropped to 16% when excluding the children’s hospitals from the calculation.

The responses within the report clearly show that, despite the challenges, there is significant enthusiasm for advancing home therapies nationwide. The answers provide intriguing insights and can be located on pages 35–59 of this report.

Renal Services Transformation Programme Update

NHS England’s Renal Services Transformation Programme is currently in its implementation phase. With the renal clinical networks active and driving transformation across their local patch, the national change programme will conclude later this year. Most of the clinical networks are working with their system partners to promote uptake of renal dialysis at home whilst factoring in other variables like demand and capacity and patient transport services in line with their local health population needs.

Similar conversations are ongoing at a national level where opportunities have been discussed to create best value and outcomes for patients and systems. In future, NHSE’s Transform Clinical Reference Group will continue to provide a steer on matters requiring national level engagement and advocacy. The renal services specification is currently in clinical build phase, after which it will go through NHS England’s governance process. The RSTP will publish the outcome of their work later this year.

Home dialysis data

In this fourth report by the NKF, the UK Renal Registry has once again supplied data to showcase the advancements in home dialysis across various centres in the UK.

Analysis of Home Therapies Provision by Centres In 2022

For this fourth NKF report the UK Renal Registry has again provided data to show the progress on home dialysis by centre across the UK. It was disappointing to find that the average rates for home dialysis were very similar to previous years, showing that the average number of adult patients per centre on home dialysis (both PD and HD) in 2022 was 16.9%, compared to 17.5% in 2021, 17.7% in 2020 and 17% in 2019. This suggests that the small increase in home therapies seen during the pandemic is not being maintained.

This overall 2022 figure of 16.9% comprises 4.7% HD and 12.2% PD patients. However, this hides a significant variation across centres from a low of 4.8% to a high of 33.6%.

Breaking the data down for the four UK nations: the average percentage of patients on home dialysis for England in 2022 was 17.4% (18.1% in 2021), in Wales 18.1% (18.2% in 2021), Scotland 12.2% (11.7% in 2021) and Northern Ireland 12.5% (13.3% in 2021). This records that England and Northern Ireland both showed a drop in percentage provision of home therapies from 2020 to 2022, while Scotland showed a marginal improvement.

Variation in home therapy rates across centres is illustrated in the funnel plot below. The number of centres below the lower 95% limit i.e. the centres not doing so well in 2022 was 17 (compared to 16 in 2021 and 20 in 2020 – these were Airdrie, Bristol, Cambridge, Carshalton, Colchester, Doncaster, Dorset, Glasgow, Kirkcaldy, Leeds, London Guys, Middlesborough, Stevenage, Truro, Ulster, West Northern Ireland, and Wirral.

The number of centres above the 95% limit – i.e. the centres doing well was 15 (same as in 2021, with 13 in 2020). These centres were Bangor, Birmingham, Carlise, Coventry, Derby, London Barts, Manchester, Nottingham, Plymouth, Portsmouth, Salford, Shrewsbury, Stoke, Wolverhampton and York.

There were 51 centres with less than 20% of patients on home dialysis in 2022, compared to 49 centres in 2021 and 44 centres in 2020.

Percentage of adult patients prevalent to dialysis on 31/12/2022 on home therapies (PD and HHD) by centre

Data from Exeter were not available. Manchester Royal Infirmary data are from 30th September 2022 rather than 31st December 2022 due to incomplete

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 on the following pages.

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. Manchester Royal Infirmary data are from 30th September 2022 rather than 31st December 2022 due to incomplete data submission.

Home dialysis data

Peritoneal dialysis (PD), home haemodialysis (HHD) and total home therapies (HT = PD + HHD) by centre, comparison of 2021 and 2022 prevalent populations.

Data from Exeter were not available. Manchester Royal Infirmary data are from 30th September 2022 rather than 31st December 2022 due to incomplete data submission.

NB: The figures in the previous reports have been updated slightly since printing, in this report you will find the most up-to-date figures covering the years 2020, 2021 and 2022 provided by the UK Renal Registry.

Home dialysis data

Peritoneal dialysis (PD), home haemodialysis (HHD) and total home therapies (HT = PD + HHD) by centre, comparison of 2021 and 2022 prevalent populations.

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 2021 and 2020. Home therapy rates were as follows: White patients 19%, Black patients 14%, Asian patients 15%. Amongst Asian patients there was a large difference in Home HD (2.2% compared to 6.1% in White patients) and a smaller difference in PD rates (12.4% and 12.6% in Asian and White patients respectively).

Amongst Black patients there is a difference in both types of home therapy (4% for home HD, 9.6% for PD).

Most centres have a small number of ethnic minority patients, so centre variation is complex to analyse. However, when the data from these centres with higher numbers of Asian or Black patients are analysed, the difference in home therapy rates that is seen at a national level persists.

There were 13 centres which had more than 100 Asian patients on dialysis in 2022. Of these centres, the highest proportion of Asian patients were at the Royal Free Hospital in London at 18.5% - a reduction on the 25% reported in 2021 and 28% in 2020. The lowest were Leeds and Leicester at 8.6%. Last year, home therapy rates amongst Asian patients in Leeds was similar, while Leicester was higher at 11%.

There were nine centres which had more than 100 Black patients on Home Dialysis which is unchanged from last year. The highest percentage of Black patients on home dialysis was Birmingham at 19.5% and the lowest was Guys Hospital London at 7.0%

Rate of Home Dialysis

Percentage of White and Asian patients on Home Dialysis in centres with 100+ Asian patients

Percentage of patients on White and Black Home Dialysis in centres with 100+ Black patients

NB: The figures in the previous reports have been updated slightly since printing, in this report you will find the most up-to-date figures covering the years 2020, 2021 and 2022 provided by the UK Renal Registry.

Home dialysis data

Table 1 - Home therapies by ethnicity and nation, prevalent patients at 31st December 2022

Data from Scotland have been excluded due to missing data, and from N Ireland due to small numbers. Data from Exeter were not available. Manchester Royal Infirmary data are from 30th September 2022 rather than 31st December 2022 due to incomplete data submission.

Table 1: Rates of home therapies amongst dialysis patients were higher in White patients (19%) than in Black patients (14%) or Asian patients(15%). Amongst Asian patients, there was a large difference in Home HD (2.2% compared to 6.1% in White patients), and a smaller difference in PD rates (12.4% and 12.6% in Asian and White patients respectively). Black patients have lower rates than White patients for both types of home therapy (4% for Home HD, 9.6% for PD). Results are very similar to 2021.

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

2022

Tables 2: 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 patients, the difference in home therapy

NB: The figures in the previous reports have been updated slightly since printing, in this report you will find the most up-to-date figures covering the years 2020, 2021 and 2022 provided by the UK Renal Registry.

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

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Tables 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 Black patients, the difference in home therapy rates that is seen at a national level persists (see table above).

Home dialysis data

Peritoneal dialysis (PD), home haemodialysis (HHD) and total home therapies (HT = PD + HHD) by centre, prevalent patients at 31st December 2022

Data from Exeter were not available. Manchester Royal Infirmary data are from 30th September 2022 rather than 31st December 2022 due to incomplete data submission.

NB: The figures in the previous reports have been updated slightly since printing, in this report you will find the most up-to-date figures covering the years 2020, 2021 and 2022 provided by the UK Renal Registry.

SCOTLAND

Average rates of home dialysis showed a

Range in rates across centres(excluding zero rates) was slightly narrower than in 2021 4.8 to 33.6 for home therapies 4.8 to 23.7 for home HD 0.7 to 20.4 for PD

Home Dialysis Peer Support Service

The NKF launched the Peer Support Service (PSS) project in 2021, aiming to provide valuable support and guidance to individuals throughout the UK undergoing home dialysis or caring for someone on home dialysis. Referrals to the PSS are channelled through the National Helpline, connecting patients with experienced peer supporter volunteers who offer advice specifically on home dialysis.

The PSS provides guidance to those considering or currently undergoing home dialysis; offers support for individuals on home dialysis seeking further assistance and facilitates discussions on shared dialysis care.

The PSS also promotes home dialysis by increasing awareness and encouraging the adoption of home dialysis through peer support and educational initiatives and by conducting outreach, including visits to renal units to promote the benefits of home dialysis.

The PSS covers the UK, with peer supporters available over the phone, through Zoom, or in face-to-face discussions, depending on location. The Peer Support Team are individuals with personal experience who are able to offer practical, emotional and social support to people facing similar challenges.

Peer supporters assist with concerns such as:

• Anxiety about needling during home dialysis

• Safety concerns for those living alone

• Worries about space constraints for the dialysis machine and supplies

• Lack of information on home dialysis and financial concerns related to additional costs.

The service has assisted 98 individuals since its launch in September 2021. The service currently has 21 peer support volunteers who are experienced in home therapies. This includes peritoneal dialysis, home haemodialysis, and caring for someone on home dialysis. They can also talk to people about traveling on home dialysis and managing home dialysis around working life.

Breakdown of support given:

The NKF peer supporters also have experience in Shared Care and can talk to patients about this and give them advice.

All of the peer supporters have been given comprehensive training and are DBS checked and have full support from the NKF with regular meetings.

In 2023, we created a booklet to promote the service and explain what peer support is for people considering home therapies, the key points about home therapies, and how to contact the service. This eight-page booklet was distributed to renal units, with 2,000 copies being disseminated.

One caller, Asif, who has benefited from the service shares, “I didn’t realise how involving and depressing peritoneal dialysis at home would be. One moment I was fit, healthy and managing my kidney disease. The next my kidneys failed, I needed surgery to fit the catheter tube, began training to use the dialysis machine, all whilst overseeing a home renovation project which now needed to be completed in time so I could begin treatment at home. The hospital gave instructional guidance, but no practical advice of how to adjust my life or any emotional support. I found dialysing painful, isolating, and questioned how long I could do this for. Thankfully I contacted the NKF and they matched me with someone who could relate to my experience, answer practical questions and advise on relevant support services. My peer supporter was someone who listened to my feelings and put my mind at ease. I can’t describe how grateful I was for this, as it was a time when I lost hope and didn’t know where to turn. Thank you NKF for finding me Patricia.”

For more information about NKF’s Home Dialysis Peer Support Service contact the NKF Freephone Helpline on 0800 169 09 36 or email helpline@kidney.org.uk

DAYLife Helping more patients dialyse from home

Clinical Lead: Udaya Udayaraj Programme Manager: Georgina Hamill (Georgina.hamill@ukkidney.org) Programme Officer: Kay Elson (kay.elson@ukkidney.org)

DAYLIfe is a national improvement programme which was re-launched in 2022 in partnership with UK Kidney Association, Fresenius Medical Care and Kidney Care UK. The programme has adopted the experience based co-design approach working with patients and clinical teams to understand the priorities and challenges of delivering home therapies.

DAYLife aims to develop tools and resources, foster connections and collaborations and deliver quality improvement training to enable equitable access to home dialysis therapy, to support centres in meeting the 20% Getting It Right First Time (GIRFT) target.

Aims of the DAYLife Programme

• All kidney centres in the UK to engage and actively participate in quality improvement work around home dialysis therapy by December 2025

• All centres to achieve a minimum of 20-25% of their prevalent dialysis patients to be on a home therapy by December 2027

• Centres currently achieving the target of 20% to continue to demonstrate incremental improvement in the proportion of patients on home dialysis year on year.

Our approach

• Avoid reinventing the wheel

• Recognising the ‘ silos’ of excellence and utilising their expertise

• Bringing people together to create a national movement

• Bottom-up approach to identify priority areas for improvement

• Focus on challenges that required a national approach and had impact on multiple patient pathways.

Programme - 2023 (Year 1)

Objectives

Co-design a national quality improvement programme with patients and care professionals

a) Understand patients and health care professionals’ perspectives on barriers and challenges to promoting home dialysis

b) Identify current best practices and available expertise

c) Establish a national home dialysis quality improvement faculty to develop and support a QI implementation strategy

Programme - 2024 (Year 2)

d) Establish working groups on four priority areas that were identified during stakeholder engagement events (Shared Care, Peer Support, Psychosocial Care, Education and Shared Decision Making):

Raise awareness through improved communication and providing a central hub of resources to share best practices and learning from the DAYLife programme

Provide QI training and support through KQuIP programme managers to increase regional QI capability and support individual renal centres in their improvement journey

Develop a map of regional and national QI activity around home therapies

Leadership Event - 27th June 2023

Explored the barriers and challenges of home therapies from a care delivery perspective

66 leadership stakeholders participated

Objectives

Explore participants’ involvement in home dialysis QI initiatives, using live surveys

Read the report here

Identify care professionals challenges and needs for developing home dialysis live survey responses were discussed in breakout rooms

Update from research evidence on current best practices in the UK to promote home dialysis therapy

Explore how the recommendations from our patient insight event can be implemented Breakout discussion groups were facilitated to match the four and graphics

Next Steps

Series of webinars on each of the four theme National working groups for each of the four National Home Therapies Summit

How can you support DAYLIfe

• Prioritise home dialysis improvement projects in your centres/ networks

• Collaborate with other centres within and outside your networks on projects

• Involve patients actively as partners in your improvement projects

• Connect and utilise national resources that are being developed as part of DAYLife programme

• Embed shared care, psychosocial support, peer support, Shared Decision Making (SDM) within your projects

• Join the community of practice in the 4 workstream areas and consider pilot projects within your centres

To find out more...

If you want to be involved or to find out more, please contact

NHS Regional Network Responses

Below are the seven responses from the NHS Regional Networks

North East Network

Following from our last input to the report where we had established a regional standard for reimbursement to eliminate inequity, we are continuing to assess these rates against current average utility bills and will take action to raise the regional standard reimbursement rates as required. We hope that this continued support during the current cost of living crisis will ensure that home dialysis patients don’t feel the need to return to in-centre dialysis. Moreover, we remain in close contact with our regional Kidney Patient Associations, patient representatives and renal charities to ensure that patients’ voices are heard and we can act to improve the reimbursement policy if needed. The KPAs also form part of our Renal Network Management Board and therefore play a role in co-production of these policies.

As a renal network we intend to reach a minimum rate of 20% home therapies in all of our renal units in the North East and North Cumbria. To this end we have established a whole-region home-dialysis staff working group to bring together all of the home dialysis nursing teams in the region to discuss and address challenges, best practice and Quality Improvement projects to improve the quality and experience of home patient care. An example of the utility of this forum is the alarm raised following the abandonment of the UK market by Quanta, a company which has marketed a compact and very user friendly HHD machine which was especially

appealing to patients in smaller homes which can particularly affect the more deprived parts of our region. With its exit from the UK market, the Renal Network is conducting region-wide discussions on how to best address this issue, including facilitating the identification and approaches to alternative suppliers. This working group also provides home dialysis resilience in the event of emergencies, for example with supplies sharing or workforce sharing in case of shortages.

In the months ahead we hope to develop wholeregion staff training programmes in partnership with our regional home-dialysis teams to improve the skills-base of staff, with the intention of increasing the home therapies workforce which is a major constraint nationally.

Below is the table showing the reimbursement rates. We have taken the approach of a fixed rate of reimbursement for all home therapies dialysis patients rather than a calculator system as this reduces time taken to complete them by either patients or the stretched home therapies staff and reduces the risk of errors.

* Assuming 7 sessions per week HPD or 4 sessions per week HHD

North West Network

It is credit to Anu Jayanti, Libby and myself that the NWKN Dialysis workstream has managed to complete the following.

Throughout 2023 the North West Renal Network has been working alongside KQUIP and all 5 Home therapy units in the North West. We have completed QI workshops throughout the year to support units with their Home therapies projects. This ensures that QI methodology is embedded within each project plan.

Each unit has chosen two or three projects to focus on the following:

A Increasing home dialysis uptake.

B Increasing PD Catheter insertion service and late start PD access.

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

KQUIP and the NWKN held an event in November 2023 entitled patient focused dialysis.  A world café session focused on all of the projects currently being undertaken in the NW. There were also sessions including shared care, peer support and lived experience of home therapies.

As we move into 2024, we will continue to support and sustain the current projects, but focus will shift slightly towards vascular access. We have commenced some early data collection from all 5 units. This will serve as a platform for change ideas moving forward to improve vascular access for our patients in the North West.

The NW Kidney Network focused on home therapies reimbursement in summer 2022 to scope whether all NW units had guidance for utility reimbursement for patients on HHD and PD. This drive followed the UKKA guidance release, all Trusts were requested by NHS England NW Specialised Commissioning team to give assurance that they have a robust home therapies utilities reimbursement process in place.

Some NW trusts already had this process in place and therefore reviewed the UKKA guidance for comparison, many continued with their own reimbursement processes as they were at least comparable with the reimbursement level of the UKKA guidance. Trusts which did not have a reimbursement process in place received training via the NW Kidney Network on the UKKA endorsed home therapies utility reimbursement guidance and have adopted this.

I am pleased to say that all Trusts within the NW have now given assurances to NHSE that they have a robust home therapies utilities reimbursements process in place.

Yorkshire & Humber Network

The Yorkshire & Humber Kidney Network has developed our workstreams in line with the RSTP priority areas and have appointed Clinical Leads to take the implantation forward in AKI, CKD and Dialysis.

The dialysis work stream has focused on developing a workplan to support all 6 renal units in the region to deliver sustainable dialysis services focusing on capacity and workforce. Home dialysis is an available option across the region, and we are also developing the availability of shared care. The number of patients choosing to dialyse at home fluctuates throughout the year and currently half of our units are meeting the national recommendation that a minimum of 20% of patients are on home therapies. Work is continuing within the workstream to understand the reasons for variation including patient choice and workforce capacity and identify areas to support improvement. Over the last 12 months we have ensured that all sites provide reimbursement for patients on home dialysis, have information available to patients and are regularly bench marking reimbursement rates against the national calculator.

NHS Regional Network Responses

Midlands Network

Our position is pretty much the same as last year and indicated in the report. Regionally the Midlands is the highest performing region for home therapies and this continues. We are working on our goal of 25% of patients for our own internal KPI as per the last report.

We have regular meetings with units that do not meet the national standard and work is ongoing with those units as needed.

All of our units have confirmed they are paying for reimbursement of energy costs and either using the Welsh calculator or using an internal software package but the patients are not disadvantaged. They all have confirmed they review these costs regularly in line with different tariff prices, etc.

We are planning to do a dialysis themed study day for spring 2024 and there will be an element of this focused to improving home therapy usage. We also have a regular dialysis working group that meet every 6-8 weeks that we drive forward for our work programme.

We are looking to secure some funding for an assisted home HD pilot which if successful will help with those patients that need short term care, etc. to carry on with home therapies instead of coming into in-centre. E.g. carer going on holiday, illness, etc.

South West Network

In the South West all units are reimbursing electricity for those on peritoneal dialysis and electricity and water for those on haemodialysis. The rate of reimbursement is driven by the type of machine the patient uses and their individual prescription.

There is a lot of work going on in the region to promote home therapies; a new home haemodialysis service started in Cornwall in May giving patients a full range of therapy choice.

Gloucester have awarded a new haemodialysis contract and home haemodialysis is embedded within this so we expect this to be routinely offered to patients and to see numbers increase.

North Bristol Trust have started an acute start peritoneal dialysis programme and Royal Devon University Hospitals have launched the same.

We are seeing increasing numbers of units starting or planning medical insertion of PD catheters to reduce delay and widen the pool of patients suitable for PD.

All of the Renal Units in the South West are involved in quality improvement programmes for home therapies.

Despite all the work there has been steady numbers of patients on home therapies and when measured as a percentage at times can look like it is very static as the overall numbers of people requiring dialysis increase.

It is hard to pin point the reasons behind slow growth but it is noted that often it is for good reasons such as transplantation.

We are now working on reviewing and challenging traditional clinical views of who is suitable for home therapies to see if this can have a positive impact for patients. This could also include assisted automated peritoneal dialysis in more areas.

London Network

Supporting the growth of dialysis at home is a central workstream within the London Kidney Network as there is good evidence that across London we do not support as many people as would like to dialyse at home, if given the support and opportunity to do so. The LKN Health Equity Audit demonstrated that the greatest inequality in London in access to dialysis relates to the renal unit where individuals receive their care. The LKN is working to ensure that everyone in London has equal access to high quality dialysis at home.

Improvement in this area is being driven by a steering group drawing upon a broad range of professionals from across London as well as people with lived experience. Meeting on a six-weekly basis this group is being used to drive change for good across the regional network. Central to the network approach is a focus not just on numbers of people dialysing at home but also on quality of care, using peritonitis rates as a marker of quality to ensure that any growth places is sustainable while focussed on good outcomes and patient experience.

The visibility of Dialysis at Home within the network is enhanced by the focussed use of data. The LKN data pack which is widely circulated on a quarterly basis has had three key metrics: prevalent PD population, incident PD population and PD peritonitis, forming a cornerstone of the wider pack. This ensures key data on a quarterly basis with an associated commentary is highly visible, timely and widely available. The network is working to ensure that appropriate measures to drive quality improvement are also available for Home Haemodialysis.

One of the challenges in some areas of London is access to peritoneal dialysis catheters, work on training healthcare teams in inserting percutaneous PD catheters is being led by Dr Bhrigu Sood (Consultant Nephrologist, Epsom and St Heliers), to ensure that every unit has rapid access to PD catheters to help people start dialysis at home with the right dialysis access. As a network we are also working closely with manufacturers to ensure that there is a resilient supply chain for PD catheters over the next few years.

Katie Durman (Dietician, Royal London Hospital) has developed with Home Dialysis nurses from across London guidelines on training for PD along with Nursing Workforce. Ensuring an appropriately skilled and resilient workforce are vital to support the growth of Home Dialysis programs across London. This work will extend to Home Haemodialysis as well as looking at variations in dietetic support across London in the next few months.

As healthcare teams we all want to ensure that our quality of care is good as it can be and we know that infection is one aspect that many people worry about with home dialysis. Peritonitis (abdominal infection relating to peritoneal dialysis) rates across London are now a central part of the LKN datapack, demonstrating that while in general we provide safe care, we need to work as a network to ensure we continue to do so as more people choose home dialysis treatments.

NHS Regional Network Responses

East of England Network

The East of England Renal Network team was fully established in April 2023, the network appointed workstream leads for AKI, CKD, Dialysis, Systems working, Transport, High-cost drugs & medicine optimisation and Nursing workstreams. The workstreams and objectives were developed in line with the renal service specifications and Renal Service Transformation Programme priorities. Dialysis was identified as one of the workstreams with an overall aim to Improve access to home dialysis and reduce variation in renal access provision. One of the objectives from the Dialysis workstream was to identify a baseline assessment of the reimbursement rates offered across the East of England region and highlight any variation to standardise the provisional rates.

The network team requested baseline information in September 2023 to scope and provide a regional assurance and identify whether all units had guidance/process in place for utility reimbursement for patient on HHD and PD. All trusts (5 trusts within the region) had a process in place for reimbursement with some having their own reimbursement processes, and others calculated the reimbursement rates highlighted by the WKN UKKA Utility reimbursement calculator. One of the Trusts does not offer Home Haemodialysis and hence does not have a policy in place.

As the network is in its infancy our objectives in 2023 – 24 are focussed on understanding the current state of service provision across all the workstreams. For Dialysis this was addressed by identifying Advance Kidney Care (AKC) Leads, Home dialysis Leads, Vascular Access Leads and AKC nurses and collating resources with a view to develop a resource repository and upload standardised resources on the network FutureNHS platform, patient education information across the region – Advance Kidney Care Pathway & unplanned pathway (Patient choice and education options).

Baseline assessments were developed and completed by regional leads to identify current provision of vascular access across the region and uptake of home dialysis. Following the baseline assessments, the network initiated 8 weekly task and finish groups to engage with providers to establish improvement opportunities and share best practice. The aim of the task and finish groups is to identify variation/barriers, develop and implement Quality Improvement programmes for the region.

South East Network

No response.

Location of Dialysis Care in Kidney Life (LOCAL)

A service delivery intervention for optimising the uptake of home dialysis based on the findings of the Inter-CEPt Study

This recently published research from a three year study, by the Inter-CEPt study team and the Patient Advisory Group recognises the variation of access to home dialysis and uses findings to propose interventions that may help reduce the current between-centre variation in home dialysis uptake. The study was supported by the NKF.

The Location of Dialysis Care in Kidney Life (LOCAL) intervention describes components within service delivery that enable the offer, planning and delivery of treatments to facilitate life participation, recognising that this means different solutions for different people. Some people with kidney failure and families will need much more support than others if they are going to consider home therapies. Specific targets for home dialysis are not set out in the report but ways to enable services to optimise its use in different contexts are identified, recognising this may increase overall uptake.

The report is for patients, their families and carers, healthcare providers and professionals, colleagues in industry and commissioners. The Inter-CEPt study explored aspects of kidney centre services that either enable or impede the uptake of home dialysis.

Key messages from the LOCAL report:

• Enabling health care to be delivered in people’s homes can lead to significant benefits for patients and their families. There is significant variability in uptake of home dialysis between centres, especially among ethnic minority groups and those living in more challenging socioeconomic areas. There is a pressing need to support everyone facing dialysis treatment when choosing their location of care which for many will be at home where this suits their needs and preferences.

• The Inter-CEPt study sought to provide evidence based recommendations to reduce centre variation in the number of patients choosing home dialysis.

• Research found that home dialysis uptake was associated with a favourable organisational culture rather than any particular pattern of service provision. Centres with a strong clinical leadership that values location of dialysis options, in which staff are adequately resourced to engage in service improvement activities and an approach to care planning that presumes eligibility for home dialysis, saw greater uptake by patients from all backgrounds.

• Working with patients, their families and carers, and with healthcare professionals, the study proposes a service delivery intervention: ‘Location of Dialysis Care in Kidney Life’ (LOCAL) focussing on two priorities:

1 Active engagement in service improvement (national, regional or local QI) designed to enhance centre performance in the uptake of home dialysis across the patient pathway.

2 The establishment of dedicated LOCAL roles targeting both clinical reasoning and service management to address specific service needs, e.g. championing patient engagement approaches, training of staff to discuss service support of home-based dialysis, working with wider networks, and introducing established evidence-based resources and practice.

LOCAL also identifies specific measures such as providing an Assisted Peritoneal Dialysis service and running home dialysis roadshows which are also associated with increased home dialysis uptake.

The health economic analysis demonstrates the wider cost effectiveness of home dialysis in the NHS and supports allocation of resources to support these interventions. This need for reallocation would be site-specific it is not possible to provide detailed costing but given the cost effectiveness of home dialysis they are likely to be affordable.

The Inter-CEPt study should become available via the NIHR Journals library over the coming months: https://www. journalslibrary.nihr.ac.uk/#/

The research was funded by the NIHR Health Services and Delivery Research Programme, was supported by the NKF and expects to receive endorsement from other charities supporting kidney patients and the UK Kidney Association.

2024 Moving Forward

The analysis of Home Therapies Provision by centres in 2022 shows that the average percentage of patients on home dialysis in England and Northern Ireland both showed a drop in percentage provision of home therapies from 2020 to 2022, while Scotland showed a marginal improvement. To assist with uptake in future, the NKF has joined the DAYLife national improvement programme. There has also been important information released this year from a three-year study, by the the InterCEPt study team and the Patient Advisory Group to recognise the variation of access to home dialysis and uses findings to propose interventions that may help reduce the current between-centre variation in home dialysis uptake.

Below are the NKF’s action points for 2024:

1 Renal Clinical Directors/Leads will be asked to take action from this report and update the NKF on what action they have taken to increase home dialysis. A copy of this request will be sent to their respective Trust Chief Executives.

2 The four devolved Governments will be asked for a response to this report.

3 The NKF will continue its work with all of the Regional Renal Networks. These networks will also be requested to respond to this report and provide an update on how they have increased home dialysis in all of their units within their networks.

4 The NKF will request all KPA Chairs to discuss this report with their Clinical Directors/Leads.

5 The NKF Home Dialysis Peer Support Service is going from strength to strength nationally and is a very valuable tool for patients considering home therapies. The Regional Renal Networks will be requested to share details of the national service to all of the units within their networks to ensure equitable access.

6 The NKF will continue to campaign to ensure people who dialyse from home are reimbursed for their utility costs. The Regional Renal networks will also be requested to report on how they reimburse patients who dialyse at home.

7 The NKF has joined the partnership with the National DAYLife programme in May 2024, ensuring there is quality improvement in the renal replacement pathway, and equitable access to home therapies to all who choose it. The work done in this campaign over the next year will be closely aligned and in collaboration with this programme.

Appendices: Clinical Director plans and good practice tabulation

You will find on the next page all of the Clinical Directors’ plans and good practice responses that have been received by the following centres:

Alder Hey Children’s NHS Foundation Trust

Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust

Leeds Teaching Hospitals NHS Trust

Central Manchester University Hospitals NHS Foundation Trust

Epsom and St Helier Renal Unit

Royal Free London NHS Foundation Trust

Salford, Northern Care Alliance NHS Foundation Trust

Southmead Hospital Bristol

Leeds Children Hospital

Evelina London Children’s Hospital

Colchester Renal Unit

King’s College Hospital NHS Foundation Trust

UHNM NHS Trust, Royal Stoke University Hospital

Royal Shrewsbury Hospital

Berkshire Kidney Unit

Broomfield Hospital

Royal Cornwall Hospitals NHS Trust

Sheffield Teaching Hospitals NHS Foundation Trust

Lancashire Teaching Hospitals NHS Foundation Trust

Royal Devon & Exeter University Healthcare NHS Trust

Kent & Canterbury Hospital University NHS Foundation Trust

Addenbrookes / Cambridge University Hospitals Foundation Trust

Wirral University Hospital NHS Foundation Trust

Bristol Royal Hospital for Children

Aberdeen Royal Infirmary NHS Grampian

Raigmore Hospital, Inverness, NHS Highland

Monklands Hospital, Airdrie, NHS Lanarkshire

Queen Elizabeth University Hospital Glasgow

Swansea Bay University Health Board

Appendices: Clinical Director plans and good practice tabulation

ENGLAND

Renal Centre: Alder Hey Children’s NHS Foundation Trust

What area do you cover?

Under 18 years, Merseyside, The Wirral, North Wales , some parts of Cheshire.

What percentage of patients dialyse at home? 40%.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD…YES HD Static machine… NO HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Established continued funding for band 7 nurse to continue training and supporting families on HHD.

Have you developed further the initiatives detailed in your last response?

First patient established on HHD.

Other patients being dialysed on the Nxstage to ensure dialysis nurse skills maintained, increases capacity on renal dialysis unit.

Another patient now being trained for HHD.

Renal Centre: Doncaster and Bassetlaw Teaching Hospitals NHS Foundation Trust

What area do you cover?

Doncaster and Bassetlaw.

What percentage of patients dialyse at home? 14%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine…YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Current priorities are expanding use of NxStage and introducing medically inserted PD catheters to increase access to PD.

Renal Centre: Leeds Teaching Hospitals NHS Trust

What area do you cover?

West Yorkshire excluding Bradford area.

What percentage of patients dialyse at home? 11.5%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD…YES HD Static machine…YES HD portable (e.g. NxStage)… UNDER CONSIDERATION

Have you updated your plans for increasing this proportion?

We have been running meetings for the last couple of years to try to identify barriers to home dialysis. We’ve identified physician tube insertion, peer support, and staffing levels in both home modalities as issues. We have just commenced our physician local anaesthetic PD tube insertion programme.

Have you developed further the initiatives detailed in your last response?

We have just commenced our physician local anaesthetic PD tube insertion programme at the start of 2024.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Central Manchester University Hospitals NHS Foundation Trust

What area do you cover?

Greater Manchester East Sector and East Cheshire.

What percentage of patients dialyse at home? 25% of all dialysis.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine…YES HD portable (e.g. NxStage)…YES

Have you updated your plans for increasing this proportion?

Manchester has been one of the largest centres for provision of home dialysis over the past 15 years. Both HHD and PD uptake numbers have increased steadily over the years and continue to do so. Home dialysis remains the default modality where preferred by patients and clinically safe and feasible. In HHD we have achieved one of the lowest technique failure rates (published data NDT).

In the past 3 years, there have been a number of new and ongoing initiatives to sustain and increase the proportion of patients on Home dialysis such as:

1.    Default modality of choice in the advanced kidney care clinics.

2.    Development of new resources for patients (videos in PD, etc).

3.    Augmented Medical PD catheter insertion through Renal Daycase.

4.    Increase in no of Consultant workforce delivering PD catheter insertions.

5.    HD start up program (30% pts opting to train through DAU).

6.    Increased HHD training capacity.

7.    Newly recruited HHD training team in the past 3 years (Sustainable workforce).

8.    New Independent HD Self Care program where Home is not suitable.

9.   Highly experienced MFT Community support Team (Home Dialysis).

10. Trialling of novel devices in Home-dialysis to improve uptake.

11. Sharing successful initiatives with other centres.

12. Research in less explored areas (e.g. Self cannulation).

Have you developed further the initiatives detailed in your last response?

We have a continuous cycle of innovation in home dialysis to improve the offering to all patients who choose to take up this modality to sustain and improve the program.

Renal Centre: Epsom and St Helier Renal Unit

What percentage of patients dialyse at home? 15%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD…YES HD Static machine…YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Plans to increase home Haemodialysis are similar to last year.

We have been working more closely with St George’s and agreeing that we would train their patients if there was a delay at St George’s to do this, but so far patients have either elected to wait for training at St George’s or have decided against home haemodialysis so we have not trained any George’s patients here although have supported them and are working together to share learning and develop protocols as part of the future likely unification of the units.

The main problem is lack of referrals although staff members do refer, often when the details of home haemodialysis are discussed patients elect for satellite dialysis, especially if there is a unit nearby, or peritoneal dialysis. Our program remains static training around 8-10 people a year and losing a similar number to transplant or as some of our patients have been on home haemodialysis for many years they have passed away.

We will aim to provide training at a second centre at Farnborough to enable patients from Surrey not to have to travel so far, and also have shared care programs and KPIs with our private providers to provide training to self needle locally for training but currently have no referrals to train locally.

We will aim to carry out more education of patients and staff through the AKC clinic and in dialysis units if staffing allows.

Peritoneal dialysis – low prevalence is seen not only in units with low uptake, but also units with high uptake due to high rates of transition to HD. We are working on:

1.    Improving patient retention on PD - we have significantly improved time on therapy for patients on PD. Number of patients transferring from PD to HD within 3 months was significantly reduced.

2.    RCA process being developed with collaboration with London Kidney Network colleagues to understand common avoidable factors and reduce peritonitis rates.

3.    Improved home visits for PD patients.

4.    Improve uptake – group education sessions with hands on experience of home therapy equipment to develop confidence in considering home therapies.

5.    Developing peer support for patients.

Challenges

1.    Recruitment of staff to vacancies in the PD team.

2.    Access to assisted peritoneal dialysis, especially connect and disconnect service.

3.    Education and professional development in home therapies for nursing staff outside of home therapy teams.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Royal Free London NHS Foundation Trust

What area do you cover?

North Central London.

What percentage of patients dialyse at home? 15%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

We aim to provide a smaller conventional HD machine for home HD than our current 5008 machines. Growth of our home haemodialysis service is currently limited by machine availability; providing a smaller machine should help us to provide a more attractive option to patients as well as deal with the machine availability issues. We have re-established a shift at our Supported Self-Care Unit which will have a focus on patients hoping for home dialysis and we hope to provide a dedicated home dialysis training area.

Have you developed further the initiatives detailed in your last response?

We have now appointed a band 7 specialist nurse with a view to establishing pathways to home HD for patients with failing PD or failing transplants. This nurse will also deliver staff and patient education, improving self-care uptake and developing enthusiasm for home therapies in both staff and patients.

Our peer support program is now running and the pre-dialysis patient education sessions will be resuming in March – these provide people with the opportunity to meet experienced patients and staff involved in home therapies. We also plan to develop the role of the band 6 nurse working between PD and pre-dialysis clinics to increase PD uptake.

Renal Centre: Salford, Northern Care Alliance NHS Foundation Trust

What area do you cover?

Greater Manchester North.

What percentage of patients dialyse at home? 20%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion? Yes.

Have you developed further the initiatives detailed in your last response? Departmental quality improvement project with allocated clinical time in progress.

Renal Centre: Southmead Hospital Bristol

What area do you cover?

Bristol, Bath, Weston-Super-Mare and surrounds.

What percentage of patients dialyse at home? 13%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES, BUT NOT RECOMMENDED AS A PORTABLE DEVICE.

Have you updated your plans for increasing this proportion?

Yes. Various QI projects underway to improve home therapies proportion. PD – access to timely PD tube insertion, early PD for sudden requirement for RRT (eg crashlanders).

Home HD – Possible expansion from Physidia to Physidia and NxStage, improving education (patient education days, options clinics), case finding in renal units, relaunch or self care.

Have you developed further the initiatives detailed in your last response? As above, QI processes ongoing.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Leeds Children Hospital

What area do you cover?

West / North Yorkshire and Humber.

What percentage of patients dialyse at home? 26%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… NO HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Home haemodialysis with nxstage started 12 months ago.

Renal Centre: Evelina London Children’s Hospital

What area do you cover?

South Thames down to Brighton and Kent and up to Milton Keynes.

What percentage of patients dialyse at home? 64%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… NO HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

We are increasingly getting the in centre and home dialysis team to tether to train the home haemodialysis patients.

Renal Centre: Colchester Renal Unit

What area do you cover?

North East Essex.

What percentage of patients dialyse at home? 0%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… NO HD Static machine… NO HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

We are running into difficulty with the private dialysis contractor and management to enable us to offer home treatment locally.

Have you developed further the initiatives detailed in your last response?

We are in constant discussion with our management team and the private dialysis contractor, but no success so far.

Renal Centre: King’s College Hospital NHS Foundation Trust

What area do you cover?

South-East London.

What percentage of patients dialyse at home? 15%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… NO

PD TEAM

PD Access

Home visits available to help with decision making progress/ build confidence/ensure suitability.

Ongoing to recruit unplanned start through acute PD program supported by nurse specialist and nephrologist inserted PD catheters.

Started interventional radiology guided catheter insertion with ultrasound & fluroscopy guidance to expand pool of patients able to have local anaesthesia insertion.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: King’s College Hospital NHS Foundation Trust cont

We are working to formalise pathway for patients needing adjunct procedures e.g. hernia repair at the time of GA PD catheter insertion to enable these patients to have timely peritoneal access.

PD retention

Implemented incremental PD to reduce therapy burden / burnout.

Focus on peritonitis reduction with root cause analysis of cases, regular retraining program and integration of microbiologist into weekly MDT to ensure effective treatment plans/minimise unplanned transfers to HD.

We continue with a program of local anaesthetic procedures to enable rescue of dysfunctional catheters or infected external cuffs to extend technique survival.

Assisted APD team to enable broad range of patients to benefit from the technique.

Home-Home transfer:

Discussion on planned PD-HD transfer re continuation of home therapy via home HD.

Home HD TEAM

Changes to programme since 2022.

Improved Facilities & Increased Staffing

Procurement of 25 HHDx machines with ROs.

Procurement of additional vehicles for community support of HHDx patients.

Recruitment of another Consultant to look after the Home Haemodialysis programme.

Recruitment of 2 additional nurses with resource for a further nurse.

Recruitment of further technical staff.

Upscaling of use of training room- now with nursing provision to provide training of 8pts/wk with additional respite provision for patients currently at home. Currently 8 patients training each week.

Actions to Improve Recruitment of Patients/Awareness

Local Home HDx roadshow held this year on main hospital site with encouragement of patients to attend with existing patients present to provide peer support/real experience.

Greater education from our Advanced Kidney Care Team about the Home Haemodialysis option to those patients with declining kidney function.

Greater referral rate from our Consultant team reviewing new starters to Haemodialysis (planned and unplanned starters) providing a “Home Haemodialysis First” approach (as opposed to satellite HDx).

Weekly meetings with dialysis staff at our Main Starter unit to highlight potential patients who want to do Home HDx or are considered good candidates to approach prior to their transfer to satellite units.

Visits by our Home Haemodialysis Team to the satellite dialysis units to introduce the concept to already established patients.

A more proactive approach regarding the criteria required for what is required for a suitable Home Haemodialysis patient. Patients can now come for a taster fortnight to the training area where they can learn more about Home HDx and where they can be assessed re their capability by the Home HDx team at the same time without losing their existing satellite dialysis slot.

Participation in the newly created Home Haemodialysis forum in the London Kidney Network so to share ideas of success and highlight challenges.

Ongoing Retention of Established patients

Monthly community reviews now established by the Home HDx nursing team for review of set up, refresher training, review of aseptic technique, needling review and assessment of AVF.

Respite slots created as required if patients/relatives needing a break or access issues so to try to delay/ prevent home dialysis fatigue.

Advanced Kidney Care Clinic (AKCC)

Add home therapies suitability as one of top headlines at top of AKCC letter (along with RRT plan/hep B /Tx status) - if not suitable try to add reason so if modifiable eg currently in unsuitable housing point of potential could be identified.

Make more use of offered home visits by PD team to anyone flagged as potential for PD.

Plan to use a new home haemodialysis leaflet with all patients who might be suitable.

Development of existing strong peer support service to optimise support to help people confidently choose or remain on home therapy.

Earlier referral (in AKC) of people who may be able to do home haemodialysis to the specialist nurses who then provide additional information and support.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: UHNM NHS Trust, Royal Stoke University Hospital

What area do you cover?

Stoke, Staffordshire and South Cheshire.

What percentage of patients dialyse at home?

26.9% of all dialysis patients & 13.45% of all RRT patients.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD: Baxter & Fresenius; HD Static machine: Fresenius

Have you updated your plans for increasing this proportion?

Plans are ongoing. We plan to conduct a home therapies Fayre/educational day in May/June this year and then to continue this biannually if possible.

Renal Centre: Royal Shrewsbury Hospital

What area do you cover? Shropshire.

What percentage of patients dialyse at home? 30%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Ongoing promotion of home therapies.

Opportunities for patients to meet other dialysis patients and receive education about home therapies. Education of staff, promoting home therapies.

Renal Centre: Berkshire Kidney Unit

What area do you cover?

All of Berkshire.

What percentage of patients dialyse at home? 15%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD... YES ( PD/ APD/ in house aAPD) HD Static machine... YES HD portable (e.g.NxStage)... YES

Have you updated your plans for increasing this proportion?

• HHD staffing has increased and now that these two staff are both educated and up to speed, this is enabling further patients to be trained as well as managing our existing cohort. Our numbers on HHD have increased, however, the natural turnover with change of modality (transplant etc) means it can be difficult to maintain this number.

• The Shared care programme is now becoming well established with our part time Shared care nurse really driving this. We have numerous patients now participating in their own treatment and care and we are already seeing a rise in interest with this of patients considering the possibility of home dialysis.

• Reimbursement for patients for the utilities used is now in progress in our programme.

• Unfortunately, for the current time, we are now not able to progress the development of the mixed model with HHD machines, owing to the withdrawal of the Quanta machine from the UK. We have some patients who have been trained on this machine and they will be able to continue with this, but we will now have to investigate alternative home machines to allow more flexibility and choice.

• Additional Renal Consultant trained for radiological insertion of PD catheters – previously x1 operator.

• PD service – addressed staffing issues in Kidney care ( LCC) going forward this will aid the pre dialysis education process / more sessions / more home visits. We hope increased in put / more support may result in more embracing Home therapies.

• PD – Actual PD staffing – posts vacant advertised many times but cost of living/ housing prices in our area/ no unsociable hours/ no need for long days and a 5 day a week service have made recruiting very challenging. For these reasons we have embraced the Assistant Practitioner role / apprenticeship this has enhanced the service and filled some of the gaps. Plus we have finally made some trained appointments. We have recently reopened our aAPD service so hope we can go back to offering this again as a 1st modality. Previously this was a great success and a great alternative to HD for frail / cardiovascularly unstable Pts and a means of keeping “ fading “ existing PD pts on PD as a modality for longer. Staffing issues prevented this.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Berkshire Kidney Unit cont

Have you developed further the initiatives detailed in your last response?

• The patient contract is now in use, and this complements our Patient suitability criteria document.

• We have recently made a brief video for pre dialysis patients in particular - An introduction to Haemodialysis – this also discusses Home HD and Shared Care, and will hopefully promote further interest.

• We featured home HD in a recent copy of our newsletter which also generated interest and resulted in a new patient being trained for home.

• PD revising patient education material / adding in different education medium.

• Covid meant the loss of face to face clinical reviews and education sessions. At Reading we have a “very cosmopolitan” patient group, often English is not their 1st language making non face to face education and review challenging. Re opening face to face services/ home visits/ clinic space we hope will have a positive impact and in turn increase uptake of Home Therapies from LCC.

• LCC team revisit Acute presenters who are on chronic HD programme – educating about Home therapies in a hope pts who didn’t get education because of the acute presentation can switch.

Renal Centre: Broomfield Hospital

What area do you cover?

Mid Essex.

What percentage of patients dialyse at home? 25%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES Baxter HD Static machine… NO HD portable (e.g. NxStage)… YES Nx Stage

Have you updated your plans for increasing this proportion?

Yes, employed a AKI CNS, a new Pre Dialysis CNS, and a new Home Therapies CNS, so all patients will be seen and relevant ones referred to Renal Home Therapies. These patients are seen now at a higher eGFR so we build a better rapport by the time they need to choose their RRT.

Have you developed further the initiatives detailed in your last response?

We have regular educational evenings for patients and families to attract more patients to home therapy. Patients and families have opportunities to meet other expert patients who can reassure them about home dialysis. This is very popular and have very good attendance.

Renal Centre: Royal Cornwall Hospitals NHS Trust

What area do you cover? Cornwall.

What percentage of patients dialyse at home? 10.7% and rising fast

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES Physidia

Have you updated your plans for increasing this proportion?

Now has Physidia and plan to train 17 people on it – already done 10 and future patients identified. Concerted effort to increase PD, main new activity is home dialysis team sit in with ckd nurse discussing RRT options.

Increased home dialysis staff – which will enable assisted PD.

Patient who have chosen PD for the future RRT has increased markedly. Target 20% – aim to achieve in 2024.

Have you developed further the initiatives detailed in your last response? As detailed above.

KQUIP have been a major driver and support.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Sheffield Teaching Hospitals NHS Foundation Trust

What area do you cover?

South Yorkshire and North Derbyshire.

What percentage of patients dialyse at home? 19%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

1. Continued development of our percutaneous PD insertion pathway which has allowed for more flexibility within our service and a more responsive service.

2 Focusing on patient education in the advanced kidney care clinic around the options for a home therapy.

3. Engaging and educating all members of the team on home therapy suitability and options such as the assisted PD service.

4. Plan to increase the uptake of home therapies in patients who start in centre dialysis acutely- this could be done via increasing the awareness of home dialysis as an option and possibly implementing a reminder or check list for new starters.

Renal Centre: Lancashire Teaching Hospitals NHS Foundation Trust

What area do you cover?

Lancashire and South Cumbria which also includes the catchment areas of neighbouring hospital trusts: Blackpool Teaching Hospitals NHS Foundation trust to the West, East Lancashire Teaching Hospitals NHS trust and University Hospitals of Morecambe Bay NHS Foundation Trust to the North.

What percentage of patients dialyse at home? 15%

Current numbers: PD 56; HHD numbers 39 (although some fluctuations on a monthly basis depending on new starters and transition of modality).

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD: Fresenius and Baxter Systems, HD Static machine: 5008s, HD portable: NxStage

Have you updated your plans for increasing this proportion?

Considering our expansive geographical catchment area, a new Home Dialysis Training Facility has now been opened at Westmorland General Hospital facilitating the provision of a more equitable service to patients with End Stage Renal Disease within South Cumbria and Morecambe Bay area. This allows the delivery of Home Therapy Dialysis Training nearer to home, whereby previously these patients had to travel to Chorley District Hospital. Our longer-term goal would be to offer an Assisted APD (aAPD) Service in this area. Recent attempts to recruit staff for this have proved challenging.

We have a Home Therapy Dialysis Co-Ordinator in post that guides the patient though their pathway to our service and who liaise closely with our Kidney Choices Team. Our advanced kidney care clinics have expanded with the goal of having an advanced kidney care clinic at each of our renal centres.

Where possible we provide home based training for PD and on occasions, we have been able to deliver NxStage training at home.

Recent PD developments have been the introduction of a laparoscopic surgical PD catheter insertion and salvage service locally as well as collaboration with the Manchester Royal Infirmary Transplant Surgical Team for support as we develop the service to offer laparoscopic insertion of Tenckhoff Catheters in patients with significant previous abdominal surgeries, where medical insertions are not an option or have been unsuccessful.

We are also examining our acute PD pathway and expanding our catheter insertion list to twice weekly in order to offer PD as a viable option for patients presenting acutely with end-stage renal failure.

Have you developed further the initiatives detailed in your last response?

We work closely with the Kidney Choices Team (KCT) to further align our pathway to promote Home Therapies.

We are looking into staffing to help support the Dialysis Co-Ordinator to be able to visit our Satellite Dialysis Units to re-evaluate dialysis decisions in some patients who are considering a Home Therapy.

We hold a quarterly Patient Dialysis Education day where we get to showcase and promote Home Therapies which is popular and well attended. Patient feedback from these events are consistently high. We are exploring options to make these events available at other venues to improve accessibility.

We would like to increase our home-based training for the NxStage machine.

Further development of our laparoscopic surgical PD Pathway, as this is relatively new service.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Royal Devon & Exeter University Healthcare NHS Trust

What area do you cover?

Torbay, Exeter, North Devon and South Somerset.

What percentage of patients dialyse at home?

Just over 14% of dialysis patients have dialysis at home in the SW region and 16% at RDUH.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES CAPD and APD and assisted APD HD Static machine… YES a few patients only but assessing HD portable (e.g. NxStage)… YES new machines at the moment

Have you updated your plans for increasing this proportion?

Yes there is an established medical PD catheter insertion programme now and acute start PD has been started in the last 6 months.

Both HHD and PD are being promoted with actions to change the culture towards these therapies and promote them more.

The team have started a ‘PD First’ campaign of challenging at every CVC insertion to see if PD could/would be more suitable.

Have you developed further the initiatives detailed in your last response?

As above and ongoing quality improvement initiatives with the regional Network to get more new patients onto home therapies and to successfully keep them on this therapy.

Renal Centre: Kent & Canterbury Hospital University NHS Foundation Trust

What area do you cover? Kent.

What percentage of patients dialyse at home? 14% Jan 2024

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

• DAYLife – Has allowed opportunity to refocus on our shared care aspect of service.

1 Patients perspective, introduced levels of shared care and launched a 2-week upskilling course with HHD staff.

2 Staffs perspective – introduced a bespoke training update for the champion nurses and plans to introduce a new training programme for all HD staff to better understand all aspects of shared care.

• Business case developed to increase both home dialysis staff and resources – however competing with other Trust service changes and the necessary finances required.

• Aspects of the business case proposed:

1 Establish the current assisted PD programme internally.

2 Alter our approach with HHD resources – by leasing machines rather than purchase.

3 Consider opportunity to provide assisted HHD – dependant on success of localised PD programme.

4 We had identified the need for a smaller model of machine – offering versatility for those homes who cannot accommodate the larger model of machine – but this is currently on hold.

Renal Centre: Addenbrookes / Cambridge University Hospitals Foundation Trust

What area do you cover?

East Anglia - Cambs, Norfolk, Suffolk, Essex, Beds and sometimes Lincs.

What percentage of patients dialyse at home? 16.2%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

YES

Have you developed further the initiatives detailed in your last response?

We are re-launching the Shared-Care programme. We are in the process of educating staff on the Shared Care initiative and liaising/networking with other units to helps us promote its uptake.

Appendices:

Clinical Director plans and good practice tabulation

Renal Centre: Wirral University Hospital NHS Foundation Trust

What area do you cover?

West Cheshire and Wirral.

What percentage of patients dialyse at home? 10%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion? Yes, part of kQUIP and working on increasing home dialysis both PD and HHD. Retention in PD is a problem and we are working on tackling that issue. Audit on way to look at the main issue for patient loosing PD. Also working on staff education and ensuring to reduce PD peritonitis. Picking up patients from HD unit who might be suitable for HHD.

Have you updated your plans for increasing this proportion?

Appointed new staff in home therapy team to help achieve as above. Regular Audits. Live Dash board.

Appointment of new consultant soon. Medical PDC insertion to help increase numbers. RCA for every PD peritonitis and Pd failure.

Renal Centre: Bristol Royal Hospital for Children

What area do you cover?

South West of England.

What percentage of patients dialyse at home? At present approx. 80% dialyse at home.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… NO HD portable (e.g. NxStage)… YES

Have you updated your plans for increasing this proportion?

Our default position is dialysis at home unless there are medical or social contraindications or families make a positive choice for in centre HD.

Appendices: Clinical Director plans and good practice tabulation

SCOTLAND

Renal Centre: Aberdeen Royal Infirmary NHS Grampian

What area do you cover?

Grampian, Orkney and Shetland and satellites in Peterhead, Stonehaven, Banff, Elgin and Inverurie.

What percentage of patients dialyse at home? 11% (PD 9% HD 2%) December 2023.

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

Unfortunately we started 2023 with 14% on dialysis but have dropped to nearly 11% in the past couple of months. We have had a number of people switch from PD to HD and quite a large increase in HD starts in the summer (some were crash landers). We have 5 Home HD patients currently with a further 5 ready to go home but awaiting DPIA issues to be cleared first. This and logistics have been the main barrier to getting these patients home. We have at least a further 18% of our in centre dialysis patients doing some or all aspects of self/shared care. We had 6 patients transplanted while waiting to get home HD over past year.

Our plans to increase the proportion are same as last report but to hopefully overcome the DPIA issues and work with a local company to facilitate home installations.

Have you developed further the initiatives detailed in your last response?

• Not in any great detail.

• Planning to have further meetings around standardising low clearance clinics- but this is mainly focusing around transplant first and transplant work-up rather than home therapies although needs to be part of that discussion.

Renal Centre: Raigmore Hospital, Inverness, NHS Highland

What area do you cover? Highlands.

What percentage of patients dialyse at home? 14%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

Yes, Quality Improvement Initiative in progress:

• Home visit by home therapy team for patients in pre dialysis phase.

• Encourage existing hospital haemodialysis population to partake in Shared Care programme.

• Educating nursing staff of all levels about benefits of renal home therapies.

• Consider introduction of portable home haemodialysis system.

Renal Centre: Monklands Hospital, Airdrie, NHS Lanarkshire

What area do you cover? NHS Lanarkshire.

What percentage of patients dialyse at home? 9.5%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… * HD portable (e.g. NxStage)… *

*Our home haemo training and care falls under the remit of our neighbours, Greater Glasgow and Clyde. I think at present there are 5 patients from NHS Lanarkshire on Home HD through this service but have counted them in our numbers as we have referred for/pay for this service.

Have you updated your plans for increasing this proportion?

In light of new technologies e.g. Nx stage, we plan to survey the current hospital HD population to explore barriers to home HD – particularly whether travelling to Glasgow for training etc is a barrier and we should be considering setting up a local service.

We have been proactive in encouraging PD in our low clearance clinics (for suitable patients), are exploring funding for setting up an assisted PD service (currently outsourced to Baxter) and undertake regular review of hospital HD patients to see if they would wish to consider a switch of therapy.

Have you developed further the initiatives detailed in your last response?

Unsure. Workforce has been a major barrier to our progressing/auditing our current practice but we have had some successful recruitment recently and hope to make some progress (or at least have more detail of barriers to progress) in the near future.

Appendices: Clinical Director plans and good practice tabulation

Renal Centre: Queen Elizabeth University Hospital Glasgow

What area do you cover?

Greater Glasgow & Clyde and Forth Valley Healthboards for PD and Home HD, and NHS Lanarkshire for Home HD only.

What percentage of patients dialyse at home? 7%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES HD Static machine… YES HD portable (e.g. NxStage)… YES

1.    Home therapies updates presented at internal meetings to highlight these modalities to colleagues –wide audience with senior nurses from all areas of renal medicine specifically invited.

2.    For PD, home training (as opposed to in-centre) now offered routinely which might make it more attractive to patients when deciding.

3.    PD technique reviewed at set intervals and after every PD peritonitis episode. This was ad hoc before but the hope is this might help reduce recurrent infection and prolong time on the modality.

4.    Home HD – we have addressed potential sources of patients.

A.   Pre-dialysis patients: we looked through all patients attending Stobhill Hospital General Renal Clinics with eGFR <18ml/min and remotely reviewed their records to see if there was anyone who might have been referred for home treatment – patients were then flagged on our EPR OPC screen and consultants at their next clinic were notified. The impending arrival of a ‘low clearance’ clinic at Stobhill should focus our efforts on home RRT better.

B.   Patients starting haemodialysis: we have set up an automatic email sent out to any clinician referring a patient for a hospital haemodialysis space asking if the patient would be suitable for home dialysis.

C.   Patients already using Hospital HD – senior nurses in each of the dialysis units were encouraged to consider whether any of their group of patients would be suitable and our most senior Home HD nurse and one of our registrars have visited the units to provide encouragement and further information.

5.    Self-care HD – we have started self-care training in the Home HD training room and encouraged it across other sites as a means of increasing patients’ independence. This has been shown to encourage patients in NHS Lanarkshire to consider home HD training.

6.    Peer support/education - we have patients who offer to provide information and peer support for those considering Home HD. One of our more recent patients has made a video outlining his dialysis journey (PD and Home HD) which we hope will help others considering home RRT.

7.    Home HD – informal discussions with our surgical dialysis access team to encourage them to refer any patients they think would be suitable.

8.    I think we should also be considering PD and Home HD with a portable machine for those who need a short period of dialysis prior to transplantation. The Physidia is a pay-per-treatment modality and this more costly, but with a cassette system, and without the need for conversion, it is much quicker to train and get home (i.e. 2-3 weeks – much closer to times for PD).

WALES

Renal Centre: Swansea Bay University Health Board

What area do you cover?

South West Wales.

What percentage of patients dialyse at home? 15.8%

Do you offer PD, HD static machine, HD portable (e.g. NxStage)?

PD… YES 9.6% HD Static machine… YES 6.2% HD portable (e.g. NxStage)… NO

Have you updated your plans for increasing this proportion?

Online educational material for patients, with online training and troubleshooting clips.

Have you updated your plans for increasing this proportion?

Have undertaken a comprehensive mixed-methods study to examine reasons for patient’s dialysis choice and described reasons why patients did not choose home dialysis.

Using the learning from study to develop a structured enhanced CKD education programme with combination of in person, telephonic contacts and educational materials to help patients achieve a home dialysis therapy.

NORTHERN IRELAND

No responses

Correspondence from the Devolved Governments

Response from English Government

From: Department of Health and Social Care

Subject: Your correspondence of 28 September

Dear Mrs Brown,

Thank you for your correspondence of 28 September to the Secretary of State for Health and Social Care about the provision of home dialysis treatment.

The Government would like to assure you that increasing the provision of home dialysis treatment for kidney patients remains a priority.

The Government acknowledges that there is a concentrated drive within the renal community for increasing access to at home dialysis treatment, and for good reason. The Government knows 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. By investing in home dialysis so that patients do not need to make long and disruptive trips to hospital for regular treatment, local systems will be able to deliver better experience and outcomes for patients and reduce their spend on patient transport to dialysis centres in hospitals.

In England, there is a range of guidance produced by the National Institute for Health and Care Excellence available for commissioners and clinicians to support patients’ access to home dialysis treatments, when appropriate for the individual. Patients and their family members or carers should be involved in the decision-making process alongside healthcare teams when considering treatment options and should be offered regular opportunities to review their treatment and discuss any concerns or changes in preferences. This includes a choice of dialysis modalities at home or in-centre, to ensure that the decision is informed by both clinical considerations and patient preferences.

To increase the provision of home dialysis, the Department of Health and Social Care is working closely with NHS England (NHSE) to implement the Renal Services Transformation Programme (RSTP), a multi-agency, whole-pathway collaboration that aims to reduce unwarranted variation in both the quality and accessibility of renal care. 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, NHSE has set up eleven renal clinical networks which determine local priorities, working closely with integrated care systems (ICSs). Providers of renal services, ICSs and regional commissioners will continue to monitor uptake of home dialysis via the UK Renal Registry and NHSE Renal datasets.

The RSTP developed a toolkit and dashboard which were launched at the UK Kidney Association Annual Conference in June 2023. Increasing access to home therapies is a priority for NHSE and this is reflected in its inclusion in the RSTP toolkit and dashboard. The Government is pleased to see that the regional networks have included improving access to home therapies in their work plans. The national team will continue to support regional teams through the implementation phase of the renal service transformation programme.

To support consistency and quality of care for dialysis patients receiving treatment away from clinical settings, there are two NHSE service specifications for haemodialysis, on Haemodialysis Providers delivering only Dialysis Away from Base and Haemodialysis to treat established renal failure performed in a

Response from Scottish Government

DCOO: Healthcare Planning and Quality

Your Reference: NKF Report - Increasing Home Dialysis

Dear Andrea Brown,

Thank you for your email of the 28 September 2023 to the Cabinet Secretary for NHS Recovery, Health and Social Care regarding home dialysis. Ministers receive a large volume of correspondence and I hope you will understand that as much as they would like to it is not always possible for them to reply personally to each case. I have been asked to respond to you on this occasion. The role of the Scottish Government is to provide policies, frameworks and resources to NHS boards in order that they can deliver services that meet the needs of their local population. Within this context, it is for clinicians to discuss with the patient the most appropriate treatment option for them. We are acutely aware that energy consumers, and especially consumers that receive treatment at home, are feeling the impacts of recent price hikes. We are committed to removing the current variation across NHS Boards in the reimbursement of additional electricity costs associated with home dialysis and are working with boards to implement a national policy so that patients are not exposed to the impact of high energy prices. I hope you find this information helpful.

Yours sincerely

Scottish Ministers, special advisers and the Permanent Secretary are covered by the terms of the Lobbying (Scotland) Act 2016.

Sharon Robertson

HPQ : Clinical Priorities

patient’s home. Service specifications are important in clearly defining the standards of care expected from organisations funded by NHSE to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives and can be found at https://www.england.nhs.uk/wp-content/uploads/2018/08/ Haemodialysis-providers-delivering-only-dialysis-away-frombase.pdf and https://www.england.nhs.uk/commissioning/ wp-content/uploads/sites/12/2015/01/a06-serv-spechaemodialysis-renl-failr-home.pdf respectively.

It may be useful to know that, alongside being responsible for the management of renal replacement therapies including haemodialysis, peritoneal dialysis and renal transplant, NHSE is also responsible for care of patients requiring management of advanced kidney disease and rare diseases in nephrology to try and delay the onset of kidney failure requiring dialysis or transplant.

I hope this reply is helpful.

Yours sincerely,

K Jarvis Ministerial Correspondence

and Public Enquiries

Department

of Health and Social Care

Response from Welsh Government Response from Northern Ireland Government

From: HSS. Government Business Team

RE:

NKF Report - Increasing Home Dialysis

Dear Andrea Brown,

Thank you for your email below. I have been asked to reply and apologise for the delay in doing so. I would like to reassure you that we are committed to offering home dialysis to more people in Wales with plans already in place to increase provision to patients as needed through a range of approaches. Wales already has a positive position compared with the other four nations with regards to the provision of home dialysis with 3.5% of patients in Wales on Home Haemodialysis (HHD).In July 2023 the Kidney Support and Welfare Wales project was launched through the collaboration of the Welsh Kidney Network (WKN), Kidney Care UK and Wales & West Utilities offering support for the 1,500 people in Wales who receive in-centre Haemodialysis. It provides access to free, impartial guidance and support and focuses on welfare with the aim of helping to maximise income, reduce utility-related expenditure and provide signposting to other charities who can offer financial support. This is a groundbreaking model, which has since been replicated throughout other nations in the UK. The WKN continues to work towards a “Pathways to home” strategic model which aims to increase access to home dialysis, reduce unwarranted variation of uptake within Health Boards, utilise relevant research regarding the barriers to ‘a home first approach’ and embrace and evaluate the varying projects running across Wales to address barriers and issues of equity identified for Welsh patients. With regards to reimbursement arrangements, utility reimbursement is available to all Welsh patients receiving dialysis at home which is currently 35p/kWh.

A reimbursement calculator created by the WKN was launched online in April 2021 and the tariff is reviewed annually to ensure that it is comparable, there are no variations in energy use and that no patients are disadvantaged. The utility reimbursement calculator was shared with UKKA colleagues and is now accessible to all four nations.

I hope this is helpful.

Yours sincerely,

Richard Morgan

Tîm Busnes y Llywodraeth/Government Business TeamGrŵp Iechyd a Gwasanaethau Cymdeithasol / Health and Social Services Group

From: Hospital Care Directorate Teresa Magirr – Assistant Director REF: Brown - NKF Report - Increasing Home Dialysis

Dear Andrea,

Thank you for your correspondence dated 28 September 2023. This correspondence has been forwarded to me for a response. The SPPG provided funding to the Northern Health and Social Care Trust to set up a pilot scheme for delivering peritoneal dialysis catheter insertions outside a theatre setting under local anaesthetic to provide access for patients who would previously have been contraindicated due to general anaesthetic use. In 2022 we were able to fund this pilot scheme recurrently. The SPPG has also supported a change in service in Belfast Health and Social Care Trust so they can provide a similar service to patients giving better access to peritoneal dialysis for patients in Northern Ireland. We will continue to support and encourage Trusts to discuss the potential for home dialysis with patients as a treatment option. Requests for further expansion have not been raised with us. In light of your correspondence we did seek an update from Trust service leads on the position and have been assured that this is not an issue or pressure at present.

We will also take the opportunity to raise home dialysis within established stakeholder engagement forums in the coming months to ensure we have resolved advice from patients and their representatives on this issue. We fully acknowledge and support the preferred treatment for kidney failure is transplantation and where possible, pre-emptive kidney and it is worth highlighting that Northern Ireland with its population of 1.9m has a hugely successful live donor transplant programme which in combination with deceased donation supports around 120 transplants per annum and provides the highest rate of pre-emptive kidney transplants in the UK. This position also means Northern Ireland has the lowest kidney transplant list per million population of all the regions in the UK. For those patients who continue to need home care, we currently provide £50 per month reimbursement for costs of medical devices in the home for home haemodialysis patients. Arrangements are now progressing to ensure that this is extended to cover reimbursement costs for peritoneal dialysis in both adult and paediatric care. Thank you for highlighting these important issues in respect of dialysis care in Northern Ireland. I have asked that my colleague, Paul Brownlees, writes to you again with an update on the views of our stakeholders once we have had the opportunity to raise this issue with them. Please do not hesitate to contact me if you require any further information.

Yours sincerely

Teresa Magirr

Assistant Director of Hospital Care

Cc Mr Paul Brownlees, Commissioning Lead

Acknowledgements

This report has been a tremendous collaborative project, and the NKF is thrilled to extend its thanks to all those who contributed to bringing this report to fruition.

The NKF Home Dialysis Subcommittee members – Ros Aird, Donna Blizard, Fiona Broomhead, Andrea Brown, Caryl Bryant, Brian Child, David Coyle, Stephen Emmerson, Kirit Modi mbe, Tarsem Paul, Peter Constable, Pete Revell, Sharney Warren and John Roberts.

The UK Renal Registry (UKRR) – Retha Steenkamp and Shalini Sathakumaran Georgina Hamill for the update on DAYLife.

The Renal Services Transformation Programme for their update by Ahmad Saleem Ullah

Thanks to renal Clinical Directors and Regional Networks for their responses. Chris Marsden for the design of this report.

Thank you to Fresenius Medical Care for their contribution towards the costs of producing this report.

NKF Home Dialysis Subcommittee Members

Ros Aird

Donna Blizard

Sharney Warren

Fiona Broomhead

David Coyle

Brian Child

Andrea Brown

Caryl Bryant

Kirit Modi mbe

Peter Constable

John Roberts

Stephen Emmerson

Tarsem Paul

Pete Revell