Involvement of people living with HIV in Scotland

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Thursday 9th March 2017

Over the past few years HIV Scotland has been supporting health boards to develop local patient involvement initiatives.

By increasing participation of patients/service users, you increase ownership and engagement which in turn leads to improved personal, clinical and social outcomes, as well as sustainable change.

HIV Scotland are currently supporting patient forums at various stages of development.


The Fife HIV Patient Forum meets every two months. The next meeting will take place on the 24th March at Whytemans Brae Hospital. Forum members said at the last meeting that the forum was valuable. They see it as a place where they can become more informed about HIV, share their experiences and listen to and learn from other people’s experiences as well as a place to give and receive informal peer support


An HIV information event was held in Aberdeen in February 2017. The agenda included updates on HIV, treatment, patient involvement and services available to people living in Grampian. Following this successful event the first meeting of the Grampian HIV Patient Forum will take place at 6pm on 23 March 2017 at the McGillivray Academic Centre in Tutorial Room 4.


In Lanarkshire we are currently working in partnership with the NHS, Waverley Care, Terrence Higgins Trust Scotland, Hepatitis Scotland, Princess Royal Trust Lanarkshire Carers, and Addaction. Initial meetings have been held and we are now planning a Conversation Café in August 2017.


The Lothian Patient Forum has been operating since 2015. As a direct result of the Lothian HIV Patient Forum pushing for Peer Support a training course is being delivered in Lothian in May. This is a partnership between Lothian Patient Forum, Waverley Care and Project 100 and will take place on 10 – 12 May 2017. If you are living with HIV in Lothian and would like to join this training course please contact Project 100 on 020 7713 0444.


This year HIV Scotland and NHS Tayside have been working in partnership to deliver a new patient forum following an HIV information event in late 2016 where attendees indicated that they felt this would be useful. This group have now met a few times and have decided to call themselves ‘Our Voice.’
The group have already identified peer support as a key service that is missing in Tayside.

The Future

Over the course of the next twelve months HIV Scotland would like to support other health boards initiate or further develop patient involvement. By March 2018 we hope that every mainland health board will have some patient involvement activity whether a physical or virtual forum or otherwise.

For further information and support please contact Rik Hodgson, Information and Involvement Officer at HIV Scotland, 0131 603 8776