Shared learning database

NHS Kidney Care
Published date:
February 2011

NHS Kidney has held a series of events in each SHA throughout England bringing together Department of Health leads, providers of kidney services, clinicians, patients and carers with the aim of increasing the availability of home haemodialysis and maximising patient choice of dialysis modality and setting. This activity supports the implementation of NICE Guidance which states that all suitable patients should be offered the informed choice between home haemodialysis and hospital haemodialysis.

Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

To increase access to home dialysis and reduce the current significant variability in service provision. The aim is to ensure that all clinically suitable patients are offered an informed choice of where they wish to dialyse including at home, enabling kidney patients to lead their lives with greater freedom and control. Home haemodialysis has the additional benefit of being cost effective and addressing future capacity challenges. Self care, care at home and home dialysis offer real benefits for kidney patients and link closely to the vision of an NHS that is organised around patients, giving them more choice, convenience and control over their care. - To engage directly with local patients, carers, commissioners and providers to influence service redesign with a series of nationwide events dedicated to 'Improving Choice' for Kidney Patients within each SHA area.
- To bring together key partners to identify perceived barriers to change and identify collaborative strategic approaches to increasing home dialysis provision. These include development of clinical pathways, commissioning specifications and the provision of patient centred training, education and support resources.
- To enable patients and carers to champion the clinical and psychosocial benefits of home haemodialysis.
- To examine what matters to patients and carers by means of a dedicated patient-led event wherein workshops were conducted with home haemodialysis patients and their carers to discuss the following themes:
- Engaging patients in commissioning
- Shared Decision Making
- Measuring Quality of Life
- Making Renal Data accessible to patients.

Reasons for implementing your project

Home haemodialysis has been shown to improve clinical outcomes for patients. In addition it reduces the need for regular frequent travel to hospital which places a burden upon patients and their families in addition to being environmentally damaging. Currently in the UK the prevalence of Home Haemodialysis is of 2% of the total dialysis population (UK Renal Registry 2009 report). Nationally there is wide variation in the availability of Home Haemodialysis, with some renal units having no provision. NICE have stated that up to 30% of patients (HD and PD) would be suitable for, and should receive, home dialysis but this has not been implemented at a local level. Estimated savings in the PASA Report show savings of £20,700 per patient over 10 years when the modality of treatment moves from hospital based to home based delivery.

How did you implement the project

NHS Kidney Care engaged directly with local patients and teams to influence service redesign with a series of nationwide events designed for 'Improving Choice for Kidney Patients'. There have been 11 events held covering each of the 10 SCG patches, plus a dedicated patient and carer event, to promote choice for kidney patients within the planning and commissioning of home dialysis services. Following each event outcomes and feedback were compiled into an Action Plan for each area. All 10 SCGs and their Kidney Care Networks have signed up to implementation. Each Action Plan details the actions required to address core themes identified locally and includes key performance indicators to measure progress. Core themes identified within all areas include reducing inequity in treatment options, the need to create or revise integrated home haemodialysis pathways, availability and quality of patient training and patient education, support for carers, developing CQUINS for home therapies, addressing long term capacity and sustainability challenges.

The final event consisted of presentations by patients and carers and was chaired by the Chairperson of the National Kidney Federation, also a home haemodialysis patient. The event was also attended by the National Clinical Director for Kidney Services, The Renal Policy Team from the Department of Health and the Deputy Director of the Renal Registry.

Workshops enabled NHS Kidney Care and Department of Health colleagues to engage with home haemodialysis patients in under to understand their support and information needs.

Key findings

In total 326 delegates attended the ten SCG events. Delegates came from 83 different NHS Trusts and 10 Specialised Commissioning Groups. The majority of attendees worked for Hospital Trusts. Primary Care was represented in six of the ten regions (North West, Yorkshire and the Humber, South West, South East Coast, West Midlands and East of England). The majority of delegates have been nursing staff. 11% of the total delegates were Consultant Nephrologists (n=41). The events facilitated engagement with many professionals associated with all aspects of home dialysis including psychologists, dieticians, technicians, public health specialists, patient advocates, patients, carers, training managers and supplies managers.

As a result of this opportunity to focus on outcomes, action plans for each patch have had sign off from each Kidney Care Network Board which will enable NHS Kidney Care to measure the local and national impact of enabling genuine choice for kidney patients.

The dedicated patient and carer event was attended by patient and carer delegates from across England and feedback from workshops will inform future NHS Kidney Care projects. Delegates were also invited to participate in the creation of a short film which will be released on the NHS Kidney Care website. The film consists of home haemodialysis patients and their carers discussing the benefits of home haemodialysis and will be of interest to commissioners, clinicians and kidney patients.

Key learning points

- Bringing together a wide variety of project partners including providers, patients and commissioners enables perceived barriers to be discussed pragmatically and expectations to be managed.
- By promoting a collaborative approach each event led to the production of a strategic action plan. Implementation of these can be monitored via a series of key performance indicators.
- Regional events promote local ownership of the agenda and allow for a comparative analysis of regional baseline positions and a thorough examination of regional barriers and levers to change.
- Patient and Carer participation empowers patients to champion home dialysis whilst allowing providers and commissioners to better understand their day to day information and support needs.
- Avoid assuming that a one size fits all approach will suffice. Promote NICE Guidance in its broadest form and allow local providers and commissioners to interpret implementation according to their patients'.

Contact details

Beverley Matthews
NHS Kidney Care

Secondary care
Is the example industry-sponsored in any way?