3.13 Involving people: Making sure IP is accessible to people with low self-advocacy skills or limited contact with mainstream services

Learning from the pilots

When identifying the best place from which to 'lead' IP in your area, consider the particular needs of the most disadvantaged groups

If your target group comprises those users and carers who currently have little contact with mainstream services, or who find it difficult to raise their concerns, it helps to focus on promoting and prescribing IP through health visitors and other community-based professionals. IPs could also be issued through existing 'drop-in' services. These IPs could then be fulfilled in a range of community-based settings where people are likely to go anyway, for example, in community centres, voluntary sector centres or libraries.

Identify ways of providing outreach-based approaches to user involvement.

There is a lot of research evidence showing the importance of providing outreach approaches to involving users in decisions about their own health and health care. Likewise, outreach has been shown to make a vital difference when making new services available to any disadvantaged users. A recent report (2007) by the Department of Health on community engagement on health issues demonstrates the effectiveness of outreach. As the report notes: 'Outreach — taking the message to the community at a grassroots level — is particularly important for seldom-involved groups, particularly those communities who are served by neither mainstream nor specialist media (e.g. the Somali community), and new arrivals from Eastern Europe (migrant workers, etc.)^[1]

Case study: Manchester — Working with Expert Patients

The Expert Patient co-ordinator in Manchester has trained a number of Expert Patients to dispense information prescriptions which, in this pilot, come in the form of a condition-specific information pack. The Expert Patients forge links with a wide range of patients, many of whom lead chaotic or excluded lives and, therefore, find it difficult to access, or prefer not to access mainstream services. By working through Expert Patients, the site has been able to provide IPs to a much wider range of user groups than it would otherwise have done.

County Durham – Community-based Information Centre

In this pilot, the overall management of, and responsibility for IP sits within the public health function that worked across Co. Durham and Darlington Primary Care Trusts (PCTs), but the day-to-day delivery and management of IP has been led by a project manager sited within a local Cancer Information Centre.

IPs are prescribed to cancer patients/carers by health professionals within a primary care practice. The patient is then signposted to the Cancer Information Centre where they can access 'supported information' relevant to their needs. The Cancer Information Centre is easily accessible, located as it is in a local shopping centre. Paid staff lead the IP project, but the delivery of information is heavily reliant on the highly trained volunteers who dispense information – including that related to IP – on a daily basis. These volunteers also undertake outreach work, providing information from other sites in the community on a weekly basis. The role and expertise of the volunteers is recognised explicitly by the PCTs which have established appropriate governance structures, protocols and strategies to support the delivery of information in this way.

Footnotes:

1. Department of Health, A Dialogue of Equals, The Pacesetters Programme Community Engagement Guide, DH, 2007

On the next page: meeting the needs of people with low levels of literacy