About the Kidney Disease HIT

The Kidney Disease Health Integration Team is a team of clinical staff and patients, working together to improve patient outcomes and care pathways for patients with kidney disease.

The Health Survey for England found that 6-7 per cent of the population has kidney function of less than 60 per cent. This rises to over 30 per cent of the population over 75. The percentage with advanced disease is much lower.

In 2010, 1,250 individuals in the Bristol region had levels of kidney function low enough to necessitate renal replacement therapy, including haemodialysis (37 per cent), peritoneal dialysis (5 per cent) or kidney transplantation (58 per cent). The HIT accounts for up to 2 per cent of NHS spending and is forecast to grow as the population ages and becomes more overweight. A third of dialysis patients experience heightened depression and psychological distress, with quality of life that is markedly lower than that experienced by patients with other chronic diseases and cancer.

With the introduction of routine reporting of kidney function in 2006, Kidney disease awareness has increased dramatically. NICE has produced guidelines on kidney disease management in primary care and referral to secondary care services and these have been credited with better prevention in primary care and more timely referral to secondary care. As kidney function declines, the optimum level of kidney function at which to start dialysis or receive a transplant is still unclear. For some elderly patients dialysis may not prolong life by many months and some patients, although they want to live as long as possible, are not willing to do so at any cost. Nor is kidney transplantation right for everyone, but it is important that access to the waiting list does not depend on socio-economic status, ethnic group or where you live. Patients must be provided with the facts they need, at the appropriate time, in an understandable format, to make the decision that is right for them.

The Richard Bright Renal Unit at Southmead Hospital provides chronic kidney disease, dialysis and acute kidney injury (AKI) services for a population of approximately 1.5 million and kidney transplantation services for approximately 2.5 million. In practice this means patients travelling from as far afield as Bridgewater, Warminster and Chippenham for dialysis education and dietary advice, while patients within the first few weeks of kidney transplantation can be travelling to Southmead three times a week from Bournemouth, Dorchester and Gloucester. Not only is this environmentally unsustainable, but it is recognised that proximity to specialist care increases the likelihood of receiving such care.

Aims and objectives

The Kidney Disease HIT aims to improve outcomes for patients with kidney disease in the Bristol area through:

• Prevention: reducing rates of AKI and reducing inequalities in management of chronic kidney disease in primary and secondary care.
• Patient care: introducing routine patient reported outcome measure reporting and shared decision making; exploring ways to provide care nearer patients’ homes; reducing inequities in access to treatment; developing evidence based interventions to improve the care of young adults with kidney disease; improving patient and
  family facing information sources and resources.
• Education: disseminating best practice through a programme of kidney disease education and support for doctors and nurses in the community and hospitals without renal services; ensuring people at risk of kidney disease, those with kidney disease and their family members have access to up to date, accurate information about kidney health provided in an accessible format for all individuals.
• Research: developing the infrastructure for applied renal research in Bristol to support a portfolio including observational studies, secondary databases (the UK Renal Registry at Southmead) and clinical trials and attract the next generation of clinical and non-clinical researchers into renal research. In some cases the observational evidence on variations in care by renal centre will provide the impetus for cluster randomised trials to test whether the implementation of new service delivery will itself alter patient outcomes.

Who’s involved

The leading experts in kidney disease in Bristol are involved in the team. The HIT co-directors are Dr Dominic Taylor, Consultant Nephrologist at North Bristol NHS Trust, and Dr Pippa Bailey, Consultant Senior Lecturer at the University of Bristol. The team includes doctors, researchers and patient and public representatives.

Find out more about who’s involved in the Kidney Disease HIT.

How patients and the public are involved

The Kidney Disease HIT includes two patient representatives. Patient and public involvement is being sought to capture a range of views across the patient demographic and Bristol area. Patients are involved in:

1. designing and evaluating different models of clinic delivery
2. improving patient and public facing resources, including a patient information website for the Renal unit at North Bristol NHS Trust
3. using patient satisfaction data to evaluate changes
4. designing research study resources.

Projects and activities

Key projects for the team include:

• Tele-care and remote monitoring, including:
  • Telephone clinics to promote sustainability and improve patient satisfaction.
  • Providing information and advice to GPs, including the development and testing of new algorithms of care, some of which may be automated.
  • Developing an integrated IT system that will allow clinicians, both in primary and secondary care, access to patient databases to enable remote monitoring and advice.
• Acute kidney injury (AKI): the team is involved in a national pathfinder project led by NHS England to reduce the incidence and to improve management of AKI. The project will review the interfaces between the different stages of the AKI pathway to identify opportunities for better risk assessment, early detection and appropriate intervention in primary and secondary care.
• Reducing inequity in transplant access – the HIT team have worked to identify barriers to kidney transplantation. The ASK trial is a feasibility trial of a multicomponent intervention designed to address these barriers and improve access to transplantation.
• Bristol Renal Patient Information Website – the HIT is designing a website for people with kidney disease in Bristol, and their families. The website will provide information on what they can expect from the hospital, information on specific kidney diseases, investigations and treatments, and what research studies are being undertaken in the area. Information will be provided in plain English, simple-language, as well as translated into other languages. Information will be multimedia and will include video information and virtual renal unit tours, as well as written information.
• Delivering APOL1 genetic testing for living kidney donors of African or Caribbean ancestry – HIT members are involved in creating national guidance on APOL1 gene testing for living kidney donors, as well as service development to ensure the test is available for living kidney donors in Bristol and the rest of the UK.
• Preparing older people for kidney failure treatments – Professor Caskey leads a national trial which aims to help older people with kidney disease make the right decision for them when their kidney function is getting very low. Dr Hole leads a mixed-methods study to understand treatment preferences of older Patients and their families deciding between dialysis and comprehensive conservative care for kidney failure.
• Comparing different types of dialysis treatment – Professor Caskey leads a national trial comparing different types of blood filtering treatments for kidney failure.
• Understanding the management of heart disease in people with kidney disease – the HIT team works on understanding how heart problems are treated in people with kidney disease, and work to try to improve outcomes after heart attacks and other heart problems in kidney disease.

Contacts

To find out more, please contact:

• Dominic Taylor, Dominic [email protected]
• Pippa Bailey, [email protected]

Kidney Disease HIT at the HIT conference

The Kidney Disease HIT presented this poster (PDF) at the 2018 Bristol Health Partners Health Integration Team conference.

View the 2015 video