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Co-production in Essex: learning from the ecdp

(n.b. this is a post by Lucie Stephens, put up by me while she is on holiday!)

Towards the end of June I visited ecdp (essex coalition of disabled people) a user led organization based in Chelmsford as part of our work with the People Powered Health Programme. The organization was established in 1995 and 100% of their board members have a self-declared impairment. They have 2,041 members, 134 volunteers and 28 staff. They also play a strong role in directly delivering paid for services to over 3,500 clients in 3 local authority areas. nef were initially drawn to the way in which co-production features within their support planning service that was commissioned by Essex County Council (see our co-production catalogue). But during the study visit we talked more widely about the various activities they are involved in and saw just how creatively the values of co-production have become embedded in the way they work.

ecdp groups their work under two headings “Commercial activity’ and ‘Voice’. Commercial activity, such as support planning and payroll services generates income to support the voice work that includes insight generation, lobbying and policy activity

People’s lived experience is core to ecdp and they use a range of methods to gather and collate the lived experience that members of ecdp and the wider community share with them. This insight is then used to shape new services for people, challenge problems and respond to local and national government policy.

A key role is the lived experience officer, who is based within the voice area of ecdp but works across the whole organisation. Lived experience is defined as the experience all disabled people have in their everyday lives, both in managing an impairment but also in a social sense, being a citizen and sharing their understanding of the trials and tribulations of everyday life. There are lots of different ways in which lived experience is captured and used within the organization, some of which are very familiar.

What was really exciting for me was the way in which they try to learn about peoples lived experience from every single person’s day to day interactions with ecdp. The ‘lived experience log’ is a a spreadsheet available to all ecdp staff, who are expected to capture any themes arising from conversations they have with people who are supported. The log aims to document how things are for people with a disability in Essex, to identify trends occurring and to benefit from strength in numbers when trying to raise issues.

Each service or team has its own tab within the database so its possible to see where different issues are being raised. The lived experience officer regularly reviews the database to review trends. She then works with colleagues and the internal management group to respond to them.

For example recently in the space of a week a large number of people raised concerns about changes to the access to work grant. This had meant that people were no longer able to use their own PA’s to drive them to work. Within one week ecdp took the issue to DWP with evidence of the large numbers impacted directly due to the change in guidance. The DWP accepted the issue and amended the guidance almost immediately. This was timely and cost effective and achieved an impact because it was routed in so many peoples lived experience.

Disability hate crime has also been documented as a substantial issue on the lived experience log. In response to this ecdp has undertaken wider engagement with focus groups on this topic. They have developed a policy and practical programme of support informed by existing local experience.

The lived experience log struck me as a hugely valuable way of hearing from people without imposing pressure on their time or formalizing the process by requiring individuals to fill in forms or submit ‘complaints’. As someone at ecdp said ‘people don’t want to fill in forms and follow it all through themselves because they haven’t got time in their lives to do so, they want to live their lives’.

Also, it provides front line staff with a way in which they can document what they are hearing from people with the knowledge that this will be taken seriously within the organization. This less formal approach seems to be comfortable for members and clients of ecdp but does allow the organisation to take a more prompt approach than previously.

ecdp don’t stop here, and have embedded a number of other elements of co-production into their work. These include;

• A support package for other disabled peoples user led organisations (DPULOs) to enable them to incorporate lived experience within their organisations. A similar package of support has also been provided to the Essex County Council Social Care Direct call centre.
• A peer to peer mentoring service is available to people when timely, friendly support is needed by someone wanting support. The individual is matched with a volunteer who is willing to provide some practical support and who might have lived experience. The type of support is extremely diverse and led by the individual but has included things such as attending college courses, taking up work experience, building skills and confidence.
• A new approach to supported housing has been developed using peer life coaches who have lived experience. The programme will have a control group to assess the impact of the peer element, against another group of people who will not receive life coaching.

All of these show the huge variety of ways in which co-production can be incorporated into different types of services and support, and provide valuable learning for other organisations thinking about how they might adapt the approach themselves.

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