"What self-management means to us, and how we want to be supported"
People with a long-term health condition or disability spend on average only 3-7 hours a year with a healthcare professional. That leaves 8,757 hours of the year when they and their carers are managing the impact that condition has on their lives.
We want to show the health service and its workforce how life changing self-management and self-care can be for people with long-term conditions. We think it is important that healthcare professionals understand what self-management is from the perspective of the people who do it, and that they know how to support someone to self-manage from the moment they are diagnosed.
Our aims are:
- To change awareness of self-management, and therefore to help people working in services to re-think how they work and to make ‘supported self-management’ an approach they always use for people with long-term conditions.
- To introduce more people with long-term conditions to the idea of self-management, its potential to change their lives, and the resources that can help.
Who is involved?
We are National Voices, a broad coalition of health and care charities which stands for people being in control of their own health and wellbeing.
We have been working on this project for the past six months with people who are very experienced at managing the impact of health conditions on their lives. We are also getting input from voluntary sector organisations working with people who have long-term conditions, and drawing on research from evidence papers.
We now want to go much wider – we want to hear from as many networks, forums, support groups, and individuals about what works in their lives, and how support could be made better.
How can I contribute?
If you are someone with a long-term health condition or disability, please share your views on what self-management or self-care is, and what it can do for you, by commenting on our draft statements.
If you are an organisation working with people with long-term health conditions or disabilities we welcome your views too. More importantly, you can help us to reach more people who are self-managing by sharing this information in your newsletters and with your groups/networks.
Please send your feedback to the project team at firstname.lastname@example.org by 16 June 2017. You can complete the feedback form and send it to us, or send your thoughts in an email without using the form. Please let us know if you would like to share your thoughts in a different way, or if you would like us to adapt the form for any reason.
If you have any questions about this project or the work of National Voices generally, please email email@example.com.
About the draft statements
These first draft statements have been put together by a small group of experts by experience.
They seek to represent the life changing potential of learning how to manage condition(s) and the impact these have on life.
We have organised them into ‘themes’, but these is only temporary – we may reorganise the themes as we get more and more feedback.
Because the statements record what some individuals have said, they are in an ‘I’ format – e.g. ‘I can manage the impact on my life’. We would like to change this into ‘we’, as we find statements that lots of people agree with.
When we get nearer to publishing the product, we hope to add resources and links that help people with health conditions and disabilities, and relevant professionals, to learn more.
Share this opportunity
We want this project to reflect the views of a diverse group of people with long-term health conditions and disabilities. Please help us to gather feedback from more people!