Earlier this year I interviewed Bridget at her office in London. This is an abridged version of what Bridget had to say. The full version will appear on the the new Diabetes Health Profile website due for launch in December.
In addition to our new brand Diabetes UK now has new strategic objectives, which are to reduce the prevalence of diabetes, to reduce the prevalence of all the complications, to increase live expectancy and to ensure people are diagnosed early.
Our secondary set of priorities are to deliver organisational campaigning work and support programs to achieve these objectives. Self-management and quality of life is encapsulated within this, however, the majority of our work is quite clinical – hard and fast measures – such as reducing complications and increasing life expectancy. So most of our work programs now are focused around campaigning to get diabetes on the agenda, to get the profile raised.
As an organisation, we have a number of campaigning priorities for 2012. The first is about raising the profile and we have some secondary sub campaigns under which are very much focused around foot care, early identification to get people identified and children and young people. With regards to policy we are engaging with the Department of Health and talking about quality of life, self-management and giving people the support and tools to manage their own diabetes.
Our other main policy work has been campaigning on the health bill. Here we have had a degree deal of success in some areas along with other organisations getting patient/public involvement and integrated care on the agenda.
All of what I have mentioned falls within our five year plan with the actual priorities and strategic objectives shifting and changing on an annual basis. So next year we will for example undertake different campaigns, anticipating that the focus in 2014 will be more on self-management and quality of life.
Of course this does have an impact on the funding that is going out to support research projects. As a result we have changed the way we do our grant funding so that there will now be three calls a year covering issues where we require answers. We have just done one call around self-management support and there is likely to be one around foot care in the next three months. The other one is the cost of diabetes and what we need to do about it.
Organisationally our main priority as an organisation through our campaigning activity is giving support and information to people with diabetes so they can do the campaigning work. To do this we are looking at what tools and information we can provide to enable them to do the local campaigning and be linked into the health care system.
Most of the data we use is derived from external organisations, for example, the National Diabetes Audit, the National Diabetes Information Centre. The problem with quality of life measurement is whether it can be easily expressed in numbers. This is a significant challenge for organisations like us and for the NHS which is how to get quality of life to have a more significant profile when actually numbers and clinical outcomes and costs are lot easier to count even if they are not as easy to collect.
Other than contextualising things and saying of course it is important, we need to have something strong enough, other than just saying quality of life is important to people with diabetes. Diabetes UK is trying to reach out to audiences to just get diabetes on the agenda in the first place, unfortunately quality of life just isn’t strong at the moment.
You can tell people you need to take account of quality of life, but how do you then take those experiences to influence design and policy making? However, decision making based on numbers alone to make decisions is done in the absence of the contextualisation, conversation, discussion and the patients’ stories.
Stories can be very powerful if they are positioned in the right place at the right time to the right people and I truly believe it and that’s why I think patient voices are really important about what’s happened to them, their experiences of what they have gone through.
The way we are working organisationally has changed with more of a campaigning focus but I anticipate that people will start coming back to us saying “but you’re not talking about me personally, and the way diabetes impacts on me.” As a result I think quality of life will come within organisationally the priorities that we will focus on as well as campaign on less clinical things.
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