A few words on self-management
Multilingual peer educators in north west London are helping people in hard to reach communities manage their diabetes, say Sunder Chita and colleagues.
The Diabetes Improvement Through Mentoring and Peer-led Education project aims to provide a sustainable volunteer model to promote and develop diabetes self-management to complement clinical services. It extends into community settings across north west London and was conceived by patients who joined up with public health staff in the Hammersmith and Fulham and Harrow primary care trusts.
The programme works with Central London Community Healthcare, the Community Interpreter Service, the National Institute for Health Research, the area’s Collaboration for Leadership in Applied Health Research and Care, as well as Diabetes UK.
This much needed support for people living with diabetes in the community, particularly in areas of health inequality, was made possible due to the level of patient and public involvement.
In a pluralist society with a wide range of multicultural groups, reaching out is vital to supporting people within their specific cultural context. The project team sought to engage people living with diabetes, and their carers, to deliver awareness raising sessions to black and minority ethnic communities who have a higher prevalence of diabetes, to co-deliver expert education courses with healthcare professionals, and to provide peer mentoring through primary care referral and self‑referrals.
The project recruited people for three opportunities:
- Champions, many from BME communities, to raise awareness through community events, organisations and social networks.
- Peer educators, who are trained to co-deliver expert diabetes structured education with healthcare professionals. The level of this education could be increased by 50 per cent by recruiting more peer educators.
- Mentors, who are volunteers trained to provide mentoring and support to people with diabetes. They can be accessed through self-referral, linked with primary care referrals or found at specific sites.
The implementation phase for the project began in July 2011. To date, 31 trained champions have held more than 74 community events reaching 2,369 people. Six trained educators have co-facilitated nine expert courses and four short courses. Nine mentors have been trained for GP surgeries or clinics in community settings.
The team has also developed four short films to help the volunteers. The project team used the CLAHRC web-reporting tool to capture quantitative and qualitative data to review and report the progress of the programme.
The project faced several challenges, such as giving each volunteer the support they need to develop their skills and confidence. It also required robust systems and processes to sustain this model in the long run, during a time of widespread organisational changes. There were also problems to overcome in assessing the impact of champions events, and ensuring that patients and patient voices continue to be heard, enabling the service to be patient driven.
Communication and close team working among the volunteers and professionals were key to the project. Nurses, dieticians and doctors gave their time and feedback about the need for such a service across north west London.
This model has demonstrated that many patients with type 2 diabetes and their carers are keen to get involved to support other people with the condition. They have brought a wide range of skills to the team, overcoming the language barriers that we generally encounter to reach communities. This has had considerable impact on the success of this work.
A patient leader on the project says: “There is no difference between the doctors and the patients in this project, we all make the decisions together. We feel safe to test things out, make mistakes and pick ourselves up and start again, because we share the same purpose.”
The training for the volunteers has been supported by Diabetes UK, which has provided a robust information resource and brought flexibility to the model. In addition, support and supervision from a co-ordinator to make sure all champions are confident and linked to deliver events and develop pathways has been an essential component in the programme. A lead champion has now been appointed.
Champions have delivered events ranging from coffee mornings and health fairs to events at religious venues such as mosques, churches and temples, and community meetings. The communities they have engaged with include: Somali, African Caribbean, Sikh, Bangladeshi, Iranian, Congolese, Eritrean, Ghanaian, Jamaican, Indian, Italian, Arabic, Ugandan, Colombian, French, Chinese, Hindu, Nigerian, Gujarati, Filipino and Kenyan.
On returning a month after a talk at a Bangladeshi community event, the champion asked what had happened as a result of the talk. Over half the women in the group had made changes to their diet and most had discussed the talk with members of their family, including their husband.
The educator project will report on health outcomes, efficiency of clinical services, staff and clinical time in October 2012. This data is being collected both retrospectively and prospectively.
Evidence from the project has already emerged that suggests having trained, experienced, multilingual peer educators has allowed X-Pert - the diabetes self-management education programme - to be extended into communities that were previously difficult for the NHS to access.
The mentors are beginning to receive referrals. An example of where this has proved particularly useful is in linking a Somali patient with someone who speaks their language, has the condition themselves, and is able to help the patient think about culturally appropriate diet.
It was immediately clear to the mentor that the patient had no understanding of their condition, because they were not able to speak English and so had missed most of the information available. The mentor was able to link the patient with resources in their own language; a culturally appropriate (women only) exercise class taking place locally, and also provide a place where the patient can talk about her needs and get an informed response.
This project promotes self-management and firmly places people with long-term conditions at the heart of care and as co-producers of health. It also draws attention to inequalities in access to information and support and how this impacts in the long term on premature mortality and morbidity. It has specific relevance to domains 1, 2 and 4 of the NHS outcomes framework (preventing people from dying prematurely, enhancing the quality of life for people with long-term conditions and ensuring a positive patient experience).
The project will complete the evaluation of all the outcomes in the autumn of 2012. The encouraging results from the first 12 months have led to the adoption of the project in neighbouring areas, and to piloting the extension of the model to other conditions such as chronic obstructive pulmonary disorder. l
Sunder Chita is health service research manager at North West London Hospitals Trust, Christine Mead is senior public health manager at Inner North West London, and Mina Fernando is public health manager at Brent and Harrow PCT. For more information email email@example.com or mina.fernando@brent-harrow pcts.nhs.uk