Annual Report 2023-4

A Year in Numbers

Welcome to our 2023-24 Annual Report.

We’ve had a productive year and hope you’ll enjoy reading about our activity and results.  Each section includes a summary of activity and either a case study, or link to the finished work.  This year’s report is only available through our website.  

In 2023-24 we said goodbye to several Team Members.  We’d like to thank Bhrigu Sood (PD Access lead), Refik Gokmen (Young Adults Chair), Paramit Chowdhury (Clinical Information Group Chair), Sinead Burke (Multi-professional lead), Conor Byrne (QI Lead), and Victoria Odesesan (Project Co-ordinator) for all their work with the LKN team.  

We’d also like to say thank you to our five GP leads.  Sarah Morgan (NCL), Neville Pursell (NWL), Vasa Gnanapragasam (SWL), Neil Basudev (SEL) and Chris Carvalho (NEL) have helped the LKN improve primary care support for kidney patients in London.  They’ve provided coding guidance, project development, and informed our approach to primary care engagement.  

We are delighted to extend a warm welcome to Joyce Popoola (interim Young Adult Chair) and Sarah-Louise Harwood (Patient Partnership and Engagement Lead) who joined us during 2023-24.

You can find full details of the LKN Team here: Meet the team

The LKN Preventing CKD Progression Workstream completed several key pieces of work during 2023-24

• The CKD early identification and optimisation pathways were updated.  You can find them here: Preventing Progression
• The LKN CKD resources packages (co-created with patients, clinicians and Kidney Care UK) provide a single source of trusted information for primary care and for patients, found here:                                                                                             
  For primary care clinicians: Resources
  For patients: Resources
  
• The LKN worked with the North West London ICS and Imperial College Health Partners on a 2-year project to transform early identification and management of CKD.  Solutions were co-designed with clinicians, patients and digital/service design experts.  Implemented solutions include searches, guides, dashboards, educational resources, automated coding guidance, diagnosis pathway, alerts and templates.  Project details and all these solutions are available here: Learn more
• SGLT-2 inhibitors (SGLT2i) are medications that slow progression of kidney disease and reduce cardiovascular events.  The LKN CKD Prevention Workstream worked closely with ICSs (including medicines optimisation committees) to support primary care to initiate SGLT2i for CKD.

Following co-Chair recruitment, the Collaborative has worked to develop and embed delivery of key transplant priorities for London.

Referral Pathway Mapping

• The Collaborative mapped the patient pathway from AKCC (Advanced Kidney Care Clinic) to transplant decision in the London transplanting centres and their referring units (including those outside London).  The results have helped to direct the Collaborative’s work and helped Units to develop quality improvement initiatives. 

Gift Of Living Donation: Phone Peer Buddy Scheme

• The LKN worked with the Gift Of Living Donation charity to deliver a three-site QI project implementing peer buddy telephone support to increase the number of kidney offers from black living donors. You can find the full project report here: Learn more

Mutual Aid

• Mutual aid is a kidney transplant is completed at a London transplant centre which isn’t the patient’s usual treating hospital, and was established during the COVID-19 pandemic
• The Transplant Collaborative sought patient feedback on Mutual Aid, holding  two virtual patient focus groups in April 2023; one for those who’d received a transplant and one for those who hadn’t
• The focus groups agreed that those who may benefit from Mutual Aid should be given information at three key time points:  assessment; before transfer to the new transplant centre; and once at the transplant centre. 
• The findings of the focus groups are being used to improve patient engagement with the Collaborative, and to support health care professionals give targeted information about Mutual aid at the right time for patients.

Five-year plan for London

The 5 Year Transplant Plan is being developed in partnership with NHSE London.   It intends to increase numbers of available donors, ensure equitable access to transplant services, and improve long-term outcomes for those with kidney transplants.  The Collaborative held an in-person workshop, attended by 70 people, in March 2024 to further develop the plan and seek feedback on the priorities and actions.  A full report can be found here: Learn more

 The Vascular Access Group have worked to identify barriers and drivers to delivering vascular access across the region, including benchmarking, reaching agreement on vascular access pathway standards, and how these can be digitised. 

The following case studies show how two Trusts have implemented changes locally as a result. 

Local QI using the LKN Vascular Access Pathway

Barts Health NHS Trust

Ben Lindsey, VA Pathway Chair and Consultant General, Vascular and Renal Transplant Surgeon at Bart’s Health has worked over the last two years to develop and embed an e-referral pathway for vascular access.  He says:

1.  as a proportion of the overall cost of delivering dialysis for 1500 patients (PD and HD), investment in a WTE band four pathway navigator, to effect safe access, was easily justifiable.
2. operating outside of the main theatre suite (the ward AVF programme) was the only way that capacity to create arteriovenous fistulas could be met, as such sessions, in addition to the existing funded job planned activity, were funded to support additional operating time to create AVFs.
3. additional funding would be made available to pay external experts from other trusts to mentor the surgical and medical teams to implement a ward-based PD catheter insertion programme, which includes a new consultant nephrology appointment job plan specifying an interest in this activity.”

This work is being used to support other units across London to develop their own QI with a view to rolling out the e-referral module with all Trusts using CERNER over the coming year.   

Imperial College Healthcare NHS Trust

Using learning from the LKN VA Group, Imperial created a vascular access pathway coordinator role.  In the first three months in post, Daniel Magdzinski has dramatically improved patient outcomes and waiting times.  In addition, the dialysis access clinic DNA rate has dropped by 12%, from 17% to 5%. He is now training members of the wider renal administrative team across NWL about how to manage dialysis access clinics. This will ensure sustainability of improvements in outcomes, and will upskill and support colleagues across the service. Daniel will then focus on other aspects of the vascular access pathway, such as supporting the Vascular Access MDT. 

The collegiate approach Imperial have taken with the London Kidney Network has helped them raise the profile of vascular access internally and facilitated improved collaboration with the clinical team, says Natasha Shenton, Deputy General manager. Nadine MacLean, Kidney and Transplant Business Manager, has been key in service improvement within the ICHT vascular access service. Working closely with the vascular access lead surgeon, Mr Paul Herbert, Head of Specialty for Kidney Surgery, Mr Anand Muthusamy, Vascular Access Clinical Nurse Specialist, Saidat Abbas, and Renal Quality and Information Manager, Darren Duffield, Nadine has made significant improvements with the internal vascular access referral and booking processes. As a direct result, fistula creation waiting time has halved, from 12 to 6 weeks, and there is improved oversight and visibility of vascular access referrals from across NWL. 

Vascular Access Nurses Training Day

The closure of the national MAGIC programme meant that there was a lack of training available for Specialist Vascular access nurses, and those working in dialysis units who use vascular access sites on a daily basis.   To address this gap, an in-person training day, split into a morning for the expert VA CNS’ and an afternoon for dialysis nurses, was held a summary of which can be found here: Learn more

The PD Workstream expanded its remit to cover all Dialysis at Home in Q3 2023-24.  

PD Nursing Workforce mapped

To deliver high quality PD services a sufficient, a skilled nursing workforce is needed.  The current nursing workforce was mapped, showing variation in numbers, banding, service delivery model, and more.  The full report can be found here: Reports

PD (Peritoneal dialysis) Access mapping

An online questionnaire was developed and completed by all London units to establish current service provision and to identify unwarranted variation.  The results are being used to help direct improvement work in 2024-25. We thank Dr Bhrigu Sood for his leadership and vision on this piece of work. You can find the full report here: Reports

PD Access training package

To ensure a robust and competent consultant workforce, able to deliver PD access catheter insertion, a package of training was being developed.  It will be piloted during 2024-25 and can be found here: Guidelines

Utilities reimbursement updated

Utility costs for those receiving dialysis at home should be reimbursed.  Pan-London guidance published in 2022-23 was updated this year and can be found here: Guidelines

Working with Industry partners to address operational issues

The LKN acted to support the resolution of supply issues with dialysis consumables to both renal units and people doing haemodialysis at home.  During late 2023 and into the New Year 2024, operational supply issues at a home therapy service provider led to significant service disruptions in both in-centre and home haemodialysis.  The network worked with the provider and network renal units to improve communication, resolve operational issues in a prompt and equitable manner, as well as ensuring the continuity of care of people dialysing at home.

Home HD services mapped

Home HD services were mapped to highlight variations, share best practice, understand demand and delivery differences across London, aiming to support increased Home HD uptake by eligible patients. The full report will published in 2024.

The Supportive Care Workstream completed several important pieces of work during 2023-24.

• To get a better understanding of the successes and areas of concern at each unit, the co-Chairs and project manager visited a majority of units’ supportive care teams early in 2023-24.  These were found to be helpful by all participants and helped shape activity of the Workstream.
• Discussing supportive care as a treatment option with patients requires both competence and confidence. An audit in South London in 2020, showed that many health care professionals did not feel able to discuss supportive care, or advanced care planning.  Creation of an e-module for staff was completed this year and is free to access here: e-module
• Short videos explaining Supportive Care and Advanced Care Planning for Health professionals were developed and care be found here: View
• Provision of written patient information is vital during discussion of treatment options and so two booklets were written and published to fill an identified gap.  They can be found here: View PDF and here View PDF
• In order to support GPs to better understand supportive care as a treatment choice, a training package was developed and a webinar delivered.  You can find the webinar here: View here
• Supportive Care metrics were agreed and audited (see Data in Action, section 6) 
• An in-person Audit and training day was delivered in December 2023.  Education

Having developed a clear pathway for services in 2022-23, the Young Adults Workstream has focused on how to address the gaps in service access in 2023-24.  This will continue into 2024-25. 

• A patient experience survey was piloted in one Trust.  The results were mapped against the junior Doctor self-reported training and knowledge questionnaire, and showed the same areas for improvement
• A training event was co-developed with TIER* Network and North West Kidney Network, and held at the Royal College of Medicine.
• Young Adult metrics have been agreed and reported on for the first time.  This will be refined in 2024-25
• Work has started on a co-designed, patient held passport.  This will enable Young Adults attending hospitals other than their treating centre to share relevant information about their care and medical needs in a clear, concise and useful way. 
• Previous service mapping idnetified significat different in access to psycho-socail services.  Work has started to seek to reduce inequality of access, sharing learning from other specialities and from kidney units where access is better.  It will reboot in 2024-25

*Transition & Patient Empowerment Innovation, Education and Research Collaboration.

(TIER is an international collaboration of healthcare professionals who are passionate about working together with patients and carers to empower children, young people and adults to help manage their condition, promote best practices and share resources)

The Health Equity group have focused on the delivery of two key projects in 2023-24

1. Completion and roll-out of the Health Equity e-module.  This was designed to help anyone who comes into contact with a person with kidney disease understand how kidney health inequality might affect them.  You can find the free, online training module here: Training
2. Completion of a toolkit which supports inclusion of health equity actions in all LKN Workstream workplans.  The toolkit, and detail on how and why it’s important, can be found here 

In addition, local Health Equity focused QI projects have been undertaken in response to inequalites highlighed by the LKN Health Equity Group.  For example, Dr Ben Oliveira led the implementation of a Making Every Count Count (MECC) initiative at Barts Health.  

MECC Case Study

“Using the support and expertise of the LKN’s Health Equities Group (HEG), a pilot project launched at Barts Health in 2023. It combined staff training in Making Every Contact Count (MECC) with the introduction of Healthy Living Advisor (HLA) to both record the extent of inequalities and to help mitigate their impact on patients’ health. Funding was sought by the Barts Health Public Health team to enable three renal staff to attend a MECC Train the Trainer programme. In turn these staff were able to train 12 members of the New Starters Dialysis Team at Bart’s Health. Evaluation showed the training increased staff confidence in making brief interventions to support patients to make positive changes in their lifestyle.”

Alongside this, a HLA was introduced, funded by Barts Charity, to support staff working with patients in the New Starters Unit. Between September and December 2023 the HLA screened all 131 patients starting dialysis in the unit. 75% of patients lived in the first (25%) or second (50%) most deprived quintiles of deprivation. Of the 131 paitents, 27% reported financial insecurity, 14% reported food insecurity, and 9% reported housing insecurity in the last 2 months.

73% of patients benefited from either simple advice, signposting to relevant services or an onward referral to another service. The most frequently requested area of support related to diet, which was mostly through dietitian referral, but also referrals to food banks (10%).  The second most common need was financial. People requited help with applying for benefits and signposting to grants for kidney patients.

50 patients have been followed up since their intervention with the HLA, 66% of whom were referred or signposted to more than one additional route of support.

Of those, 76% reported that they were either contacted by the service or had made direct contact with the signposted service. 90% of those patients reported that the referral and signposting were beneficial. There was an improvement in mean EQ-5D (a measure of health) score following the intervention; 1.4 before Vs 1.6 after.

The MECC project highlighted the extent of social deprivation for patients newly starting dialysis at Barts Health, with high levels of food, housing and financial insecurity. Further work is ongoing to collect follow-up data for the remaining patients screened. There is also a plan for staff in the Low Clearance team to receive MECC training so that more patients can benefit from this intervention across the Renal service at Barts Health.”

View the Health Equity Toolkit here. Toolkit

We welcomed Sarah-Louise Harwood to the Patient Partnership Lead role in February. Patients from all kidney units are involved in LKN PPE work, and patient representatives are members of most LKN workstreams and expert advisory groups. 

A new initiative to increase patient involvement in the LKN was co-developed by Andrew McAllister (patient representative) and Wendy Brown (interim PPE Lead). The purpose of the Patient Experience Discussion meetings is to share experience with LKN workstream leads, in order to shape workstream priorities to improve outcomes. Following an online launch event in November, the first three months covered:

• Which areas of kidney care feel unequal to patients in London?
• What are your experiences of choosing dialysis treatment?  
• What is the patient experience of the transplant pathway? 

Around 15 patients have attended each session, with patients self-selecting topics which they are interested in and which they have useful experience to share. 

A joint initiative between the LKN and Kidney Care UK developed and co-funded a Peer Support Coordinator for London.  Peer Support has been shown to be an important tool in improving outcomes for patients.  Deniz Hasan started her rool in March, and coordinates the peer support programme across all London renal units. The Peer Support Programme is an essential part of Patient Partnership and Engagement and is fully integrated into the LKN workplan for 2024-25. 

We have been delighted to work closely with charity partners and representatives, including the London KPAs (Kidney Patient Associations) through the National Kidney Foundation, Kidney Research UK, and Kidney Beam.

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In April 2023 an opportunity arose to support the London ICS’ to bid for funding from NHS England (London) to support transformation change in the renal pathway, with the dual aim of 

• reducing the unmitigated growth in in-centre haemodialysis (ICHD), and 
• improving patient experience and outcomes

The LKN has worked collaboratively with ICS leads and project teams to:

• Develop the bids
• Identify commonality in approach and methodology
• Shape plans using agreed LKN workstream guidelines and data
• Develop agreed metrics for pan-London analysis of outcomes
• Provide oversight through the London Kidney Transformation Board

Each ICS was awarded £2m over two years to implement their priority projects (see below)

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