Marseille 2007
Marseille 2007
Abstract book
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Abstract #578  -  DEVELOPING USER INVOLVEMENT IN HIV SERVICES IN LONDON
Session:
  26.26: Posters B (Poster) on Tuesday   in  Chaired by
Authors:
  Presenting Author:   Dr Tomas Campbell - Newham University Hospital, United Kingdom
 
  Additional Authors:   
Aim:
ISSUES Service User (SU) involvement in the planning, delivery and evaluation of HIV services is considered essential in the delivery of patient centred health care but is hard to achieve. Benefits to SU involvement include empowering users to take as much control over their own health as possible, better communication between medical staff and SUs, using their experiences to facilitate change in existing services and plan for new services. SU involvement in local services in east London has been difficult to develop and maintain: public involvement in such groups means identifying oneself as HIV+ which raises concerns about confidentiality, many people feel they lack the skills to make a contribution and fear that becoming involved would not make a difference.
 
Method / Issue:
PROJECT The North East London Sexual Health & HIV Clinical Network (NELNET) is a collaboration of health professionals working across five catchment areas to provide patient-focused, high quality and effective HIV services. The network is committed to user involvement and established a sub-group to undertake this work in 2005. The sub-group consulted with SUs in October 2006 to establish their perceptions of HIV services, what they would like to change in their local service and how they might do this. This event included presentations about what user involvement means, how it works in other services and a group discussion to clarify action. SUs are keen to be involved in NELNET and see potential benefits for themselves regarding further empowerment in managing their own health care. Feedback from participants was collected and used to write a report for the network to inform key professionals of the perceptions of SUs to the aids and barriers that influenced involvement for themselves, peers and HIV+ communities in east London. A key theme questioned the meaningfulness of SU involvement: does involvement mean influencing the design, delivery and commissioning of services and emphasizing the need for flexibility or not? SUs stressed that involvement could take many forms e.g. using websites, email, blogger accounts. The SUs agreed that a representative on the NELNET executive committee would be a first step to meaningful user involvement in the work of the network. Interested candidates for the role of SU representative were invited to contact the network and find out more about the role and the responsibilities.
 
Discussion:
LESSONS LEARNED Key to success is SU skills development and training, mentoring and access to information. Continued commitment of the network is integral to embedding SU involvement into all activity with the aim of working with SUs to feel ownership, set their agenda and work towards a model of SUs as leaders in their own right.
 
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