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NETWORK A national newsletter on substance misuse management in primary care

Tim Sampey describes how the London User Forum used its strengths when its funding was cut to produce an even stronger organisation. Ed.

action clearly demonstrated how far service user involvement had come, because it immediately became clear that some among us not only disagreed with this decision but were more than willing to do something about it. Service user involvement had grown up and was ready to leave home.

A snowflake is one of God’s most fragile creations, but look what they can do when they stick together

The old London User Forum (LUF) was created by the National Treatment Agency (NTA) in the very early days of service user involvement. In existence for almost ten years, it provided the only meeting place that any service user could walk into from anywhere in London and discuss with their peers some of the issues and events that were taking place in their local services and Drug and Alcohol Action Teams (DAATs). Often chaotic and somewhat argumentative in the early days, and prone to a variety of incarnations, it nevertheless served a unique purpose. By giving service users a place where we could meet and discuss our ideas and work, it gave birth to an enormous amount of inspiration and resolve, and can be credited with encouraging a great many individuals to return to their boroughs invigorated and determined to make a difference. Indeed, it is not unreasonable to suggest that the majority of those men and women who have worked so hard to transform service user involvement from an idea into a solid reality met at the London User Forum.

Last year, having created the London Regional User Council (LRUC), the NTA called it a day for the London User Forum. It is interesting to note that this

knowledge this is the first time that service users have worked collectively in partnership with service providers on this scale and what happens next could change service user involvement forever

“To the best of my

It was strongly felt that there was a definite need for an open service user forum in London; a place where we could network, support and encourage each other, share ideas and exchange good practice. After all, how could we continue to grow and develop if we never got to meet each other? Speaking personally, my peers have been inspiring and teaching me for years, and I for one did not want to lose that.

An open letter, an exchange of e-mails between those of us that knew each other from years of attending the old LUF, a telephone call to the service provider Foundation 66 (who to their great credit stepped straight up to the mark and offered us a venue for an open meeting – thanks Mr Gray!) and then a simple e-mail blitz of all those service users we collectively knew, and an extraordinary meeting was called.

It was the simplest of ideas. Let’s go into partnership with the service providers we work with every day and recreate the Forum. If they take it in turns to provide the venue and some food, we, the service users, will organise the Forum, provide speakers, and do our collective best to take service user involvement forward across London.

It was one of my favourite days of last year. In three hours we elected a steering committee, came to an arrangement with the great majority of service providers in London and launched a new Forum! How? By keeping it simple.

The steering committee comprised: two service user coordinators; two service user representatives from the LRUC; three service user leads; a representative


from the London service providers; and a DAAT representative from one of the 33 London boroughs. The only other criteria we had related to the service user representatives. We asked for someone who was maintenance prescribed, someone who was a member of the 12 step fellowship, and individuals who had come from substance use backgrounds that were specifically opiate, stimulant and alcohol based. We wanted as broad a church as was possible. Names went into a hat and we had a committee.

We decided in that meeting to abandon terms of reference or codes of conduct as an unnecessary complication, but agreed instead that cooperation, diversity and a spirit of partnership would allow us to move forward immediately and begin to organise our first Forum as fast as was possible. We agreed to abandon any ideas of seeking funding for the first year, but instead to volunteer our services for free in the management committee and work with the service providers to obtain anything else we needed.

We should not underestimate the potential for what we have started. To the best of my knowledge this is the first time that service users have worked collectively in partnership with service providers on this scale and what happens next could change service user involvement forever. There is no doubt about it, we have come of age.

We have held two highly successful open Forums and are currently in the process of organising the third. The steering group has every intention of building on this success step by step. The LUF will be designed, implemented and run by London’s service users, and if we get it right, the LUF should become a major force for service user involvement across London.

The world is changing and partnership is the way forward. Any bitterness some of us may feel toward the NTA for disbanding the old London User Forum should perhaps be viewed in the following light. The NTA birthed the original London User Forum, and without that none of us would be here. Our collective experiences over the past ten years as service user coordinators and service user leads have allowed us to take our destiny into our own hands. We have outgrown being managed by others and now face the challenge of joining together and standing on our own. We are service users. We are the London User Forum. We are the future.

Tim Sampey, Service User Coordinator, Kensington and Chelsea

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