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HIV Service user forum (SUF)

The Service user forum (SUF) was formed to give people living with human immunodeficiency virus (HIV) a platform for partnership working and engagement with the services which deliver their care. It is a dynamic group, empowering service users to use their own experience and knowledge to help improve the physical, mental and emotional well-being of people living with and affected by HIV in Northern Ireland.

At what level did the PPI take place?

  • One to one;
  • Service development/delivery.

PPI helped the project to:

  • Improve efficiency of a service;
  • Increase ownership.

Background.

In 2013 the Genito-Urinary Medicine (GUM)/HIV service sought to develop collaborative partnership working with HIV patients and voluntary sector support agencies. The Community Development Team established levels of service user satisfaction and interest in an HIV Service User Forum (SUF) through a patient satisfaction questionnaire, followed by a workshop for service users and support agencies. Overwhelming support led to the establishment of SUF in October 2014.

Aim of involvement.

In the UK today, HIV is a chronic condition, but the stigma originating from the public health ‘Tombstone’ campaign in the 1980’s still exists. People living with HIV continue to experience stigma & discrimination. SUF was formed to give people living with HIV a platform for partnership working and engagement with the services which deliver their care. It is a dynamic group, empowering service users to use their own experience and knowledge to help improve the physical, mental and emotional well-being of people living with and affected by HIV in Northern Ireland, which meets four times a year.

Outcomes due to involvement.

  • Reduction in ‘did not attends’ resulting in increased clinic availability;
  • Improved telephone and appointments systems;
  • Reduced complaints (from 100 plus to one within first six months of SUF being established);
  • Improved staff morale;
  • Constructive staff engagement with the voluntary sector, HIV+ service users and their families;
  • Positive partnership working within the SUF;
  • Positive partnership between BHSCT staff, the SUF and the Public Health Agency (PHA);
  • Reduction of HIV stigma by education.

Feedback/quotes from service users/carers involved.

Martin Woods, Service User and Chair of SUF, commented:

“Collaboration between Trust services, service users and relevant support agencies in order to improve services continued apace. SUF has benefited immensely from multidisciplinary representation from Trust and PHA, having decision makers at the table, participation of Positive Life and Rainbow and last, but not least the service users who are prepared to engage either in person at meeting or by providing feedback via e-mail or other communication channels to the Chair.”

Timeframe.

October 2014 to current.

Further Information.

For further information, contact:
Organisation: RVH HIV Service User Forum
Web Address: Belfast HSC Trust HIV service
Email: SUFbelfast@gmail.com