We are grateful to a number of funding organisations which have enabled the progression of the ABLE projects. Among them, are the Department of Health, the Big Lottery Fund and the Garfield Weston Foundation.
The Brent Pilot Study
This study took place for a week in the summer of 2002. It enabled the us to raise awareness of kidney disease and highlight the need for prevention by providing a health screening facility in the heart of a minority ethnic community.
The other two objectives of the pilot included:
- To determine effective communication methods of attracting individuals from different ethnic communities to participate in health awareness programmes and to demonstrate through best practice, the most effective methodology.
- To assess the acceptability and feasibility of testing for urine and blood abnormalities in a community environment
The Leicester Project
The project commenced in summer 2003 and was also supported by Department of Health funding and the Big Lottery Fund. An unprecedented approach, the Leicester project is assessing the levels of awareness and knowledge of kidney disease in the local South Asian community, as well as among Primary Health care professionals. This was done through qualitative research focus groups and an audit. An educational programme was implemented, followed by a repeat of the focus groups and audits to ascertain, for research purposes if the intervention has had an effect. Good practice learnt has since been disseminated widely. The Project was being led by Professor John Feehally, Professor of Renal Medicine at University Hospitals of Leicester & Dr Azhar Farooqi, OBE, General Practitioner at East Leicester Medical Practice.
This ABLE project has learnt from the South Asian community about the dearth of appropriate information on kidney disease and importantly, what resources to provide that will be of benefit. A real concern was that there was very little knowledge about CKD even among those most at risk, such as those with diabetes (a South Asian person with diabetes is TEN times more likely to develop kidney failure compared to a white European person with diabetes!). So, the team, comprising patients and the community developed innovative resources that were well received by all stakeholders:
1. An interactive DVD in Bengali, English, Gujarati, Hindi, Punjabi and Urdu - clips of this are available to access from the first page of the ABLE section on our website and copies can be obtained by contacting us on the details below:
E-Mail: kidneyhealth@kidneyresearchuk.org
Tel: 0845 300 1499
2. We have had much interest for these including from overseas. The DVD has been welcomed by the Department of Health and patient, public and health professional groups.
3. Multilingual leaflet highlighting risk factors and their management
4. Peer Educators, lay members of the public, were trained to deliver kidney health promotion in the appropriate language and cultural context of the community. They were very well received, reaching out to over 4,000 individuals.
5. An extensive media campaign including BBC Radio 4, ITN news, BBC local news and BBC Asian network and language papers.
Following this educational programme, we are delighted to report from our research focus groups that people were informing us that, as well as an increase in knowledge about CKD, some also reported making pivotal lifestyle changes in order to reduce their risk of diabetes and hypertension (the main causes of kidney failure in these communities).
A detailed final report on the ABLE project in Leicester is available here.
An article was written by the team for Asian Voice/Gujarat Samachar Health Magazine in 2007.
The Diabetes and Endocrinology Department at the University Hospitals of Leicester NHS Trust have created their website to make diabetes support just a click away for patients and healthcare professionals in Leicester, Leicestershire and Rutland and across the internet.
You can visit their site at www.leicestershirediabetes.org.uk/.
The West London Project, started in late 2003 and its aims were to research comparative levels of awareness and risk, as well as prevalence rates, within the local South Asian, African Caribbean and White European communities. The project led by Dr Liz Lightstone and colleagues, has demonstrated that kidney disease in Indian Asian and African Caribbean men may deteriorate more rapidly to Established Renal Failure. Long term, the study aims to identify the reasons for this faster deterioration. The charity has funded a follow on project to investigate this.
The African-Caribbean Project in Birmingham is targeting the relatives of patients, and the wider African-Caribbean community, as they are even more 'at risk'. Working with GP's, an information and PR campaign is being delivered to encourage this community to take preventative action, and to control their blood pressure and diabetes. The Project is being led by Dr Dwomoa Adu, Dr Hugh Rayner and Sister Pat Simoyi. A group of six Peer Educators have also been trained and are helping to deliver the key messages at community grass roots level. We are grateful to the Epigoni Trust and Sanofi Aventis for funding in 2007 to enable more work to continue, allowing a national platform. We are, however, in need of further funding in order to continue this project beyond June 2008!
The Diabetes Patient Pathway Project
Funding from the Big Lottery Fund was awarded for this project which started in 2005. It is assessing how South Asian patients with Diabetes access local healthcare services, and what their health outcomes and experience are. South Asian people with diabetes are TEN times more likely to develop kidney failure than White Caucasian people with diabetes. The Patient Pathway project is located across three sites in Leicester, Luton and London. The collaborating investigators in this project include Mr Gurch Randhawa, Professor Feehally and Dr Lightstone.
Organ Donation Project
This unique research project led by Dr Anthony Warrens is the first of its kind to compare different attitudes about organ donation and transplantation among White, Black and South Asian communities. There is a huge shortage of organ donors from Black & Minority Ethnic Groups, so much so that people from these communities wait nearly twice as long to receive a transplant than people of White European origin. Participants for the study are actively being recruited. A wide range of themes are being identified through in-depth interviews, and data will then be analysed to identify groups of issues. The study aims to identify and overcome any perceived barriers to organ donation and ultimately, improve organ donation rates within each group through changing public policy. We are indebted to the Big Lottery Fund for their funding of this project.
The Community ABLE Toolkit (CAT) was funded by the Department of Health from 2006-8 with the objective of disseminating the initial findings of the ABLE projects to both public and health professional audiences. Some of this work has included having a presence at the Asian Lifestyle Show and British Renal society Conference both held in 2007.
The ABLE project has facilitated us being successful in obtaining an award in 2007 for a nationwide 3 year major Quality Improvement in CKD project based in primary care which has been funded to the tune of £1.2million! A team had been working hard to pitch this proposal against over a hundred others. CKD is a huge issue and much of it can be addressed within primary care, with the correct training and support for professionals and patients. This can considerably reduce delayed diagnosis and guide appropriate and timely referrals to renal units. Specialists and generalists collaborating in this way is both innovative and necessary for the benefit of the patient. Did you know that with the new GP contract, the Quality of Outcomes Framework (QOF), 27 renal points are allotted to early detection and preventative measures and for this, GP's will get paid.
Community members making a difference
The Peer Educators Programme is where lay members of the community are specially trained in kidney health promotion and reach out to many people in diverse religious and language groups in the South Asian and African Caribbean populations. They've been tremendously well received, reaching over 4000 individuals directly in Leicester. A journalist for the BBC Radio 4 Case Notes programme who's very interested in this work contacted us. As a result they interviewed one of our Peer Educators, Sarjit Gill and the Project Manager for ABLE, Neerja Jain for their programme on chronic kidney disease (CKD).
Crucially the Peer Educators incorporate strategies and practical suggestions for lifestyle change which are very relevant to the attendees of health awareness sessions and events.
Qualitative evidence through focus groups demonstrated a real impact in terms of enhanced knowledge and the initiation of lifestyle change. Importantly, these lifestyle changes will greatly help reduce people's risk to a whole host of other illnesses, besides kidney disease. These include heart disease, diabetes, strokes, and obesity.
