UK Community Advisory Board (UK-CAB)
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    • UK-CAB 32 – Training: advocacy introduction

    22/01/2010 Alison Neathey
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    Meetings

    Friday 22 January 2010

    At the MRC Clinical Trials Unit, 222 Euston Road, London, NW1

    UKCAB is having an Advocacy training day on 22 January 2010. This is a response to the feedback from a survey last year and some feedback from meetings where members have expressed a lack of confidence as a reason for not engaging in forum discussions. This will be a back to basics meeting for new members to become more confident advocates, so…

    ‘Yes you can!‘ à  la Obama: Think you don’t have the skills to be a patient advocate? You probably do. Come along to UKCAB’s Advocacy Training Day and learn how to speak up for yourself and members of your community.

    Programme

    10:00–10:05 Setting the scene for the day: Aims, expectations
    10:05–11:00 UKCAB  – Simon Collins

    An open discussion on the current CAB and its approach. All participants should be able to say a little about their history of involvement and goals for the future.

    • How it started
    • What we do:
      • Community representation on Steering Committees, PCT, Trusts, BHIVA, etc.
      • Responsibilities, networks, dissemination of information and how you are supported
      • How we do it Strengths and weaknesses
    • Denver principles
    11:00–11:15 Break
    11:15–12:30 Confidence building workshop – Silvia Petretti

    • Improving confidence through knowledge
    • Challenging experts and status quo
    • Support for your own care
    12:30–14:00 Lunch
    14:00–14:45 Advocacy Experiences:

    • i-Base treatment advocates training model – Winnie Sseruma
    • Speaking on social issues – Godwyns Onwuchekwa
    • Working as a advocate – Emma Hudson
    15:00–15:15 NHS structures in the UK – Paul Clift

    • Primary and secondary care explained HIV in the UK – accessing care
    • Polyclinics – effect on HIV care
    • HIV Consultant and HIV Doctor – who’s who?
    15: 15–15:30 Getting other advocates involved –Paul Clift

    • Forming a patient forum
    15:30–16:00 What next – active involvement:

    Continued engagement of individuals and organisations:

    • Advocacy – definitions, usefulness, limitations
    • How do we keep everyone involved and supported?
    • Issues for volunteers vs staff
    • What can we ask of organisations, including the UKCAB?

    Financial support

    The UK-CAB receives unrestricted funding from some pharmaceutical companies towards the direct costs of holding four meetings each year. This funding supports the travel and accommodation costs for members to attend from outside London, plus the cost of catering.

    The content, programme and agenda for meetings is decided by the UK-CAB steering group in consultation with the wider membership. Funding is unconnected to meeting content.

    We believe that manufacturers who currently develop and market medicines have a responsibility to actively engage with advocacy organisations and that HIV positive people and their advocates should be able to directly question manufacturers about the safety and efficacy of their products and proposals for future research.

    For a list of companies that support the UK-CAB please see the “about us” page.

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