The Design Council team embarked on a project to try to bring about real change for the growing diabetes community in Bolton.
Having advertised the project in GP surgeries in the area, the team found a group of 20 willing participants, all diabetes sufferers and all ready to share their experiences of living with the condition.
The first stage of the project involved the team spending time with the diabetes group – in their homes, at the shops and at work – conducting interviews and informal discussions to find out as much as possible about living with the condition. By focusing on the group’s individual lives, not just their disease, the team built up an in-depth understanding of the real issues that affect sufferers’ ability (or inability) to manage their diabetes effectively day to day.
‘We developed a number of exercises to draw out what having diabetes meant for each participant,’ says Jennie Winhall, part of the Design Council team, ‘and how they saw their current treatment routines. We built up detailed portraits of each group member, and used these in a series of workshops with healthcare professionals, other patients and designers.’
Over time, common patterns began to emerge within the group, and it became possible to identify three profile categories based on how individuals approach and manage their condition. These became known as ‘knowing struggler’, ‘determinedly naïve’ and ‘able knower’.
These categories were not designed to pigeonhole or stereotype sufferers, but to help identify the key areas where innovative intervention could make a real difference.
‘From the portraits, it is easy to see that the immediate context for our work was diabetes management,’ explains Winhall. ‘Diabetes is difficult to deal with, and the results of poor management may only become visible after many years. With this in mind, it can be difficult for sufferers to motivate themselves to sustain healthy living and medical regimes day after day.’
How the system currently works
Currently, diabetes management takes the form of regular three- or six-monthly appointments with a GP or diabetes nurse, where patients are asked a series of standard questions about their condition and day-to-day routines.
In addition, specialist appointments may be necessary to deal with some of the condition’s more acute complications.
Between these touch points with the healthcare system, patients must manage their own condition, often juggling quite a number of different actions (choosing the right food, testing urine or blood, remembering to take pills, self-injection) on a daily basis.
Although the Able Knowers are happy with this level of care, for some sufferers, particularly Knowing Strugglers, appointments with the health service become like a test that they know they are going to fail.‘They see these sessions as ordeals,’ says Winhall, ‘where their lack of compliance is exposed by the people who have tried to educate them.’
The NHS is trying to tackle this issue, taking a more patient-centric approach to diabetes education through a series of intensive patient workshops. However, the Design Council’s work identified that the everyday complexities apparent in the lives of many sufferers mean that they may still struggle to apply such lessons effectively.
‘What is required is a service to provide not just knowledge about diabetes,’ says Winhall, ‘but also the ability to help people internalise it, act on it and then embed it in the pattern of their life.’
The work with the Bolton group suggested some characteristics for a new approach to diabetes care services, one that
- Bridges the gap between education and action
- Offers the opportunity for more effective communication between patient and carer
- Encourages the inclusion of family and friends to provide vital support
- Delivers more bespoke education
- Offers the NHS the freedom to experiment if standard services or approaches are not working.
