“We seem to be in a run of telling you about new projects we’re involved in at the moment. This time round, we’re partnering with our associates Snook to work with the Scottish Government on their groundbreaking ALISS project. Here our project lead, Lauren Currie, tells more…Dominic, FutureGov”
We are working with the Scottish Government to create a service that helps people with long term conditions find local support and services. This project is called ALISS ( Access to Local Information to Support Self Management ) and you can catch up on the rest of the team’s activities here. We are documenting our phase of the project at Supporting Pipes.
This project echoes our belief that, by empowering people to make informed decisions about how to manage their life with the necessary support, it can have very real and positive outcomes for all involved.
Living with a long-term condition can have a profound effect on a person and their social network (family, friends and beyond). The impact can extend to social, economic, psychological, physical, cognitive and cultural aspects of a person’s life. I have been literally blown away by the people I have met so far. People who light up a room with their stories and laughter despite the day to day challenges that can come with living with a long term condition.
People cope as well as they can with the support they have, but frequently do not have the adequate information or skills to develop a sustainable coping strategy to manage their condition, or make informed decisions about their life. We have met people of all ages, with various conditions ranging from depression to asthma. When I asked Kate, who has eczema, what she got out of being part of the eczema society, she said:
“Post and paper work I don’t read or need.”
We want to empower people to learn about their condition, acknowledge the impact it can have on their life, make positive changes and identify areas where they might need support.
Of course, people with long-term conditions are major users of the health and social care support services in both the statutory and voluntary sectors. Often these services are driven by external and internal pressures, rather than placing the people and their direct needs at its centre. That’s why a big part of our research has involved talking to the people who run and provide these services. Alan, pictured below, runs a drop in centre for adults with mental health issues where he encourages people to build their own support services.
We have been working with people to document their journey, with a particular service user mapping their emotions, physical touchpoints and areas where support is needed. This is Marjorie who was diagnosed with osteoporosis eight years ago and was left to find her own way.
We have suddenly found ourselves immersed in this world that is what it is because of connections and empathy. These service users see themselves as part of a system and for one reason or another have lost faith in this very system. What we are working to achieve is to seamlessly link up the offline and the online, focusing on the points of contact. The one thing we have learned so far is that face-to-face contact should never be undervalued and people are our best resource – not only can they be hubs of information, but experts in their own lives and health.