People with long term conditions need social, emotional and practical support on an on-going basis to enable them to manage their health and live well.
This includes both support that might be specific to their condition and support that helps people to manage wider issues affecting their health and wellbeing, such as social isolation or financial worries. Support based within their own community (sometimes called social capital), rather than provided by statutory services, is a key way of meeting people’s broader needs.
Think Local Act Personal – a national partnership to transform health and care through personalisation and community-based support – describes four elements of social capital, which might be thought of as different layers or levels of peer and community support:
- Making a contribution: Where everyone is valued for their unique talents, skills and gifts and has the opportunity to have a say, to influence and to participate.
- Personal and social support networks: of family, friends, neighbours, that we might call on to help us do the shopping or just to talk to
- Membership of groups: such as a local Breathe Easy group for people with lung conditions, or groups for carers. These can provide a sense of belonging and not being alone with the challenges of a long-term health condition
- A welcoming and inclusive local community: in which older and disabled people are able to get out and about to use universal services and feel safe and included
The three key functions of peer and community support are:
- Encouraging and enabling self-management behaviours: This type of support enables people to learn new skills or share practical experiences in ways that create mutual support between people with similar problems. It helps people to develop and maintain the skills and motivation they need to manage their health in the context of their everyday life. Examples include condition specific support groups, such as Breathe Easy groups for people with asthma.
- Providing social and emotional support: This type of support may or may not centre around peers with similar experiences or condition, but can normalise the roller-coaster of emotions that living with a long-term health conditions entails. Examples include online forums or lunch clubs.
- Supporting people to address wider social and lifestyle aspects of their health: This type of support can help people develop health behaviours, reduce isolation, develop a sense of belonging, and cope with some of the broader social determinants of health.
Examples of community support that helps people to address the wider social and lifestyle aspects of their health include:
- Debt counselling and money management
- Community transport schemes (eg volunteer drivers)
- Walking groups (Health Walks)
- Accessible activities like Riding for the Disabled and Sailability
- IT classes
- Book clubs
- Food banks
- Outdoor wellbeing activities (eg Natural Choices, Dorset)
Other community assets that exist within local health systems include different patient and public involvement groups, such as Patient Participation Groups in GP surgeries and membership bodies of Foundation Trusts. These are a source of peer support and with effective co-production, there can be considerable benefits for the wider local community as well. Some groups go on to become campaigners and activists for health and wellbeing issues.
In addition to locally based services, people can also access support online and through social media, which can be particularly beneficial in connecting people with rare conditions to peer support. The most well-known social networks for people with long term conditions on Twitter include #OurD (a community chat for people with diabetes) and #spoonie (a community for people with symptoms of fatigue, originating from the Spoon Theory).