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Research - Diabetes Patient Experience (2013-14)

WHFS (Women's Health & Family Services) was funded by the Tower Hamlets Clinical Commissioning Group (THCCG) in September 2013 to undertake a 7 month project to investigate patients' experiences of diabetes services in the borough.

Why the project is important

Diabetes within the Tower Hamlets population (currently 6%) is significantly higher than the average for London and England, and is increasing.

Diabetes has significant health implications, and can lead to other complications.  The prevalence of depression is approximately twice as high in people with diabetes as it is in the general population.

By introducing various measures (such as providing the Expert Patient Diabetes Education Programme), Tower Hamlets has seen increases in the early identification of diabetes, better control of related symptoms and significant reductions in hospital admissions.

A major concern, however, remains the lack of engagement of some diabetes patients.

Understanding more about people’s experiences of diabetes and identifying why some interventions work and others do not, has important implications for the development of effective diabetes treatment and care strategies as well as for preventive initiatives.

Research methodology

WHFS used an innovative qualitative research method called Participatory Appraisal (PA).

WHFS recruited 13 local women and men and provided them with PA training (accredited through the Open College Network at Level 2).  PA sessions were then conducted with 108 diabetic patients in community centres across Tower Hamlets, and with 15 stakeholders (including clinicians, commissioners and service providers).

Key findings

Three key themes emerged from this research:

  1. Mixed experiences in diabetes care
    There is a lack of engagement by many patients with the Diabetes Education Programme and a need for more flexibility in service delivery, with better recognition of the diversity amongst patients and their needs.
  2. A need for more positive messages
    There is a need for clearer and more visual information about diabetes from a wider range sources (such as GPs, diabetes nurses and dieticians), as well as a desire for more positive messages about managing the condition, leading to healthier lifestyle choices.
  3. Make services more local
    The importance of community-based and peer-supported diabetes education (including practical advice on diet and exercise) was highlighted across all communities. ‘’It works best if they come to us” and "We feel listened to here," were repeated sentiments.  WHFS’s Diabetes Befriending and Somali Diabetes Education projects fulfil an important role here, providing practical support to people with diabetes.

Actions taken

  • Specific recommendations were made to amend the content, delivery and flexibility of the Diabetes Education Programme to better meet the needs of the diverse communities in Tower Hamlets.
  • As a result of the PA session with stakeholders, a diabetes support group for mental health service users was established at Pritchard Road Day Care Centre (PRDCC) in April 2014.

Read the full Report

For further details, please read the full Diabetes Patient Experience in Tower Hamlets research report.