Kidney Care UK Hospital Grants fund a wide range of patient projects, clinical equipment, renal unit infrastructure, and staff posts such as renal social workers, physiotherapists, renal counsellors and youth workers.
Project: Development of an e-learning programme, Association of Nephrology Nurses UK (ANNUK) and British Renal Society (BRS)
Project: Maximise the uptake and impact of peer support in kidney care, King's College Hospital & Barts Health
Project: Sustaining Patient Leadership within the Kidney Patient Involvement Network (KPIN)
Post: Renal Occupational Therapist (one year, part time), Royal Preston Hospital
Post: Shared Haemodialysis Care Strategy Director and Trainer (two years, part time), Sheffield Teaching Hospital
Project/Post: ASK Trial: Improving Access to living-donor Kidney transplantation, University of Bristol with North Bristol and Gloucestershire Hospitals NHS Trusts
Project: Webinars - online dietary information for renal patients, Southmead Hospital (North Bristol NHS Trust)
Post: Chronic Kidney Disease Community Coordinator Nurse (36 months), King's College Hospital
KQUIP, Renal Association and British Renal Society
Post: Renal Youth Worker, North Midlands NHS Trust (UHNM)
Project: Peer Support Worker Network (PSWN), York Teaching Hospital
Project: Development of an e-learning programme, Association of Nephrology Nurses UK (ANNUK) and British Renal Society (BRS)
To provide a high quality, evidence based e- learning programme. ANNUK & BRS have brought together a group of academics & experienced renal nurses to produce content. OCB Media will develop the programme having extensive experience within the NHS. The aim is for national recognition of the programme and to become a potential mandate for all renal nurses.
Project: Maximise the uptake and impact of peer support in kidney care, King's College Hospital & Barts Health
To facilitate renal -psychiatric training for renal & psychiatry health care professionals. The project will:
- extend and update a survey of peer support in kidney care across the UK that was first carried out in 2013.
- examine the reasons for poor participation levels in peer support in two NHS Trusts by interviewing at least 20 patients who had received peer support to find out what helped them understand and feel permitted and emotionally ready for support. At least 10 staff will also be interviewed to find out why they may/may not refer or be positive about peer support.
- propose and pilot-test an intervention that would overcome the barriers and drivers to poor uptake
The project will be developed and implemented in two large NHS Trusts in London. Renal Registry data from 2016 show the following number of people who are receiving renal replacement in these Trusts:
Once the intervention has been piloted then further NHS Trust renal units will be involved in testing the intervention, but further funding will be required to do this work.
Outcomes
Created to help units establish and maintain a peer support programme to provide informational, emotional and appraisal support for people with kidney disease, in 2020 thePeer Support Toolkit was launched.
Professor of Kidney Care Nicola Thomas and Renal Nurse Consultant Eleri Wood also wrote a blog about the project - Improving peer support for kidney patients
Project: Sustaining Patient Leadership within the Kidney Patient Involvement Network (KPIN)
A lack of joined up working across the kidney community has resulted in the same few kidney patients repeatedly invited to engage across different initiatives. The demand for some, is too much causing them to feel overused, undervalued and burnt out, withdrawing engagement. To prevent this, the number of patient leaders engaged with initiatives need to be increased and the aim is to harness enthusiasm across a wider kidney patient and carer population, improving engagement from minority and hard to hear groups, currently underrepresented.
The plan is to bring together best practice resources to support, educate and stimulate clinicians and researchers to effectively engage with patients, building capacity and confidence to generate meaningful opportunities.
Find out more on the KPIN website
Post: Renal Occupational Therapist (one year, part time), Royal Preston Hospital
Occupational Therapists from the Lancashire Integrated Frailty Team agreed to temporarily support the development of our novel Renal Frailty Team, which aims to improve the health and well-being of patients living with frailty and CKD. Referred patients are offered a holistic home assessment by an Occupational Therapist. To continue to develop the Renal Frailty Team over the next 12 months and demonstrate the positive outcomes for patients living with frailty and CKD. This will allow to submit a successful business case to the Trust and/or CCG and create a sustainable service.
Despite no dedicated funding being available, Band 6 Occupational Therapists from the Lancashire Integrated Frailty Team (LIFT) agreed to temporarily support the development of the Renal Frailty Team. The funding will allow to protect 7.5 hours per week of their time for the project for the next 12 months.
Post: Shared Haemodialysis Care Strategy Director and Trainer (two years, part time), Sheffield Teaching Hospital
Shared Haemodialysis Care (SHC) is a model gaining increasing momentum to improve quality of care for patients with chronic kidney disease (CKD). The model involves working in partnership with patients to develop self-efficacy. Whilst there is local enthusiasm and areas of successful partnership with patients, there is need for strategic co-ordination of training to embed and continue the upward trend.
The post-holder will continue delivery of training to the agreed national standard. Acting as the strategic lead, the post-holder will further develop the role and co-ordinate a network of SHC leaders/trainers (including SHC posts funded by Kidney Care UK) to provide high quality bespoke local training. The post holder will:
- Drive forward a training strategy
- Identify leaders for development for succession planning
- Develop a faculty of experts
- Provide a forum to support leaders and enable the standardisation of the service
- Lead on updates for staff
- Feed into national conferences
- Work with different disciplines to engage the multi-disciplinary team
- Participate in programme development with associations such as Association of nephrology nurses (ANN) and the Baxter Expert patient panel as well as groups leading on Quality Improvement such as KQUIP and the Microsystems Coaching Academy
Project/Post: ASK Trial: Improving Access to living-donor Kidney transplantation, University of Bristol with North Bristol and Gloucestershire Hospitals NHS Trusts
To fund two part-time renal social workers to work for two years on the ASK project. This project will evaluate whether social workers employed to undertake home education visits, engage with a patient’s social network, and train family members or friends as patient advocates increases access to living-donor kidney transplants for disadvantaged groups.
The application explains the reasons for the application for i) a project grant, ii) a start date of October 2020, iii) two part-time posts, and iv) employment through a University.
This work aims to help individuals with kidney disease to access the best treatment available for most people. On average each renal unit in the UK has approximately 75 patients (range 20-250) on the national kidney transplant waiting list. Approximately 20% of these receive a LDKT each year. If 80% of those listed do not have a living-donor under review, the eligible population at an ‘average’ site will be approximately 60 individuals. The two new employees will work at 2 NHS trusts, so the work of the two employees could initially benefit 120 people during the period funded by Kidney Care UK. If through this work we can gather evidence that demonstrates that professionals employed in this role are effective at increasing numbers of LDKTs and cost-effective, this would help other trusts to produce a business case for the creation of similar roles in their site.
Project: Webinars - online dietary information for renal patients, Southmead Hospital (North Bristol NHS Trust)
A series of open source educational videos covering a range of renal dietary topics. Initially aimed to engage patients that sit outside of our referral criteria and our young adult population.
The project: An external production team will film and edit. Please see extra documentation of detailed cost breakdown.
Purpose: To engage patients in managing their own care by providing easy access, reliable dietary information online.
Why: People now look for information online first, so it is important that we engage with patients on this platform. Few YouTube videos have accurate renal diet information, so a NHS source of diet information is a necessary resource.
There are hundreds of patients that could benefit from basic diet information, that go unseen. This project is an innovative way to reach renal patients much earlier in the care pathway improving service. It would be open source so could also reach renal patients nationally.
Post: Chronic Kidney Disease Community Coordinator Nurse (36 months), King's College Hospital
Funding is for a post who will coordinate an innovative community based approach to identify early kidney disease in people of Black and Minority Ethnicities (BME) led by peer educators. Seed funding is required in order to develop a pilot program including culturally appropriate educational material, confirm feasibility, optimise training, delivery and follow-up care. This approach is aligned with NHS Long Term plan to provide care locally, improve patient choice and integrate digital technology but no funding is available until evidence is provided to demonstrate the potential benefits to patients, their community and the NHS.
The role will include developing patient and peer educator educational material about kidney health, training peer educators to deliver screening events in community settings (e.g. faith based) and coordinate diagnostic and treatment pathways for those identified to have CKD. Our collaborators Africa Advocacy Foundation have developed successful peer educator programs in other health areas but a similar program is not currently available for patients at risk of chronic kidney disease.
KQUIP, Renal Association and British Renal Society
This application is for two year partnership funding to sustain KQuIP.
The Kidney Quality Improvement Partnership is working at a regional level to maximise support for individual renal services. The core principles of KQuIP are for programme managers to work with regional networks and the services in those networks. KQuIP is now working with nine English regions, Wales, and the national paediatric network. Programme managers are working with all units within these networks. The clinical projects of transplantation, home therapies and vascular access are well advanced. Further work-streams are being planned to include supportive care, care of haemodialysis patients with diabetes, and chronic kidney disease.
Funding models have not matured sufficiently at present to ensure the sustainability of KQuIP and there is a significant risk that the programme will have to finish at the end of the current funding cycle in March 2020. The professions remain committed to KQuIP but as the scope has increased (now covering most of the UK population) funding is required for two years to bridge this period until a sustainable model has been established.
Post: Renal Youth Worker, North Midlands NHS Trust (UHNM)
Seeking to appoint a youth worker to work alongside a renal consultant, dietician and nurse, in order to provide support for young adults with kidney disease across our region. Our vision is that young adult patients under our care (currently approximately 100 patients aged 25 and under) will be able to access both the medical care and (vitally) the non-medical support that they require as a co-ordinated package. We thereby aim to improve the healthcare experience and reduce the number of adverse outcomes for patients in this age group. At present, owing to financial constraints, despite caring for approximately 100 patients aged 25 and under, the renal department at UHNM is unable to provide a designated young adult service.
Our department is currently without a psychologist, social worker or youth worker and thus the vital non-medical support required by many of our young adult patients cannot be delivered. Despite the overwhelming evidence of the significant positive impact a youth worker can have in the care of young adult patients, the role is not yet seen as ‘mandatory’ by NHS Trusts and therefore is not generally funded.
Project: Peer Support Worker Network (PSWN), York Teaching Hospital
We would like to set up an effective Patients Peer Support Workers Network (PSWN), by working in collaboration with Health Care and Non-Professionals (HCPs). We would like to ensure that the collective patient voice regarding ‘Lived Experience’ is heard and our experience(s) of kidney disease and its treatments influences decision making through the co-production of information, advice, guidance and training across the self-care pathways, in order to help improve services and experience of care. It is important from the outset, that creation of this network learns from good practice that is already happening across the UK and international Health Services.
The difference with the network we are trying to create is that, I/we aim to provide a structure which enables other patients to join in – producing a stable, diverse and sustainable network with collective expertise. This allows the collective body to raise profile and influence/engage in co-designing and co-producing aspects that prioritises patient experience as much as clinical priorities. Every effort will be made to sustain and spread co-produced activities developed within this programme. It is hoped that this will lead to new ways of ways of working and improved outcomes become the norm. We firmly believe that it is when an improvement has become an integrated and the mainstream way of working that spread and sustainability can start and that it should withstand challenge and variation over time, through a process of continuous improvement.