Innovation projects

Long Term Support Co-ordinator Network

This 18-month pilot project (now complete) aimed to improve long-term support for people living with stroke in South London through supporting local people with stroke to work together in local community network groups.

Tom Penman and Saaed Maleki, who has aphasia, discuss the progress of the project.

This was a collaborative project between Connect and the Stroke Modernisations Initiative and people living with stroke in Lambeth and Southwark. The project lasted from January 2006 to June 2007.

This project aimed to:

• raise awareness of long-term support issues with key local service providers, particularly in local communities;
• identify the barriers and facilitators to accessing long-term opportunities and support locally;
• trial innovative ways of sharing information and practical ideas and support for living long term with stroke.

The project drew on the policy themes of self-care, choice, partnership working and network development.

One of the aims was to trial the role of 'Long-term Support Co-ordinators' whose job it would be to:

• build a sustainable network of people with direct experience of stroke across the boroughs who could share experience and expertise
  
• increase service provider awareness of the needs and issues for people living with stroke.

Eleven people volunteered to train as Long-term Support Co-ordinators. Four people dropped out for a range of reasons. The remaining seven participants worked together with the project manager to the end.

The project developed Long Term Support Network groups which were attended by over 90 people in the Lambeth and Southwark area.

The network participated in a range of activities including mystery shopping (a means to investigate the range of local services in terms of accessibility), lobbying local authorities and running primary care stroke awareness events.

Key findings were:

• customer service and attitude of service providers were seen to be as important as physical access.
• the network found it difficult to engage with more isolated people living with stroke, such as in nursing homes.
• GP practice events proved to be the most successful method for 'finding' hard to reach people.
• through this project and associated MI projects, Lambeth and Southwark now has a resource of involved and skilled stroke service users.
• a local focus for stroke and stroke-related service review and development can build on this resource, such as a Stroke network.
• further work needs to be done to build alliances and organisational models that can consolidate and develop service users and providers working together more coherently after the life of the Modernisation Initiative.
• bringing people living with stroke together and supporting a focus on self-management and mutual support, can help mobilise people to take on new roles an responsibilities and manage the disability long term. This takes time, encouragement and support.

Interestingly, there does not seem to be a clear fit for stroke in long term community service planning and delivery. This fits with the emerging recommendations in the Department of Health's Stroke Strategy a New Ambition for Stroke.

For more information about this project or for a copy of the full report, please contact Carole Cross on 020 7367 0846 or email carolecross@ukconnect.org

Nanik Pursani who participated in the project

'the GP event was really….  You know, (it)opened my eyes as to what was possible, I thought that was really good', Long-term Support Co-ordinator

Contact person: Tom Penman

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