National Involvement Network Meetings

On April 9th the National Involvement Network for HIV held its inaugural meeting, with representatives attending from the regions participating in this first phase of the project: Tayside, Grampian, Fife, Lothian, Highland and Greater Glasgow & Clyde.

It was an dynamic first meeting, with presentations, workshops and discussions, which enabled the group to begin to define involvement, and identify the benefits of involvement for people who use services, service providers and commissioners of services.

We asked participants to identify the benefits of coming together as a national network and they suggested the following:

  • Opportunities to share experiences
  • Becoming leaders and being empowered
  • Creates a safe space, brings us together in a stigma free place, and rewards us with a sense of unity and collective strength, and lessens the burden of our HIV journey
  • Provides us with motivation and inspiration
  • Enables us to make a difference, to affect change
  • Creates a national voice
  • Travel, social opportunities, and meeting people, and possibly even ‘that special person’

As part of the National Involvement Network project, and to ensure every Person Living with HIV across Scotland is able to get involved wherever services are provided, or decisions made, that affect them, we are drafting National Involvement Standards (HIV). This document will soon be open for consultation with any people living with HIV in Scotland and all input is welcome. Once people living with HIV have had their say, we will also invite service providers to comment on the draft Standards.

The second meeting of the National Involvement Network took place on 4th June 2016.

This meeting came up with a definition of Involvement which is:

Involvement is the proactive and inclusive participation of people living with HIV to help drive forward effective change in education, treatment, services and policy decisions.

The meeting ran a workshops to draft the National Involvement Network Terms of Reference and to design a logo.

The National involvement Network team has been working on a number of documents, including the National Involvement Standards, the Standards Assessment Toolkit, A Guide to Setting up An Involvement Group, and some training modules, including Basic HIV training which was delivered to the meeting and which evaluated a enjoyable and useful, and about half the meeting indicated that they would like to deliver this training in the future.

The third meeting of the National Involvement Network took place on 13th August 2016.

There were people from Greater Glasgow and Clyde, Grampian, Highland and Lothian Health Board areas.

This meeting started with a round up of what is happening in the local groups. Key themes arising from this session included recruitment, awareness raising, increasing local involvement and expanding the network.

There was then a workshop where the participants completed the Standards Assessment Toolkit based on their experiences of being locally involved. This workshop was to identify if the assessment process was fit for purpose. People found this exercise really useful as it gave them a benchmark on which to measure the meaningfulness and the impact of their involvement.

The Fourth meeting of the National Involvement Network was held on the 19th November 2016.

There were people from Grampian, Greater Glasgow and Clyde, Highland, Lothian and Tayside present.

Again this meeting started with a round of what is happening in local groups. One of the key themes emerging from this round up is that all the groups are finding recruitment difficult.

It was felt that if people are getting involved and not coming back then they are obviously not getting what they need from the group or the activity. We need to be mindful of what people want, and try to provide that through their involvement.

It was suggested that we design an NIN newsletter to keep people informed of what is happening with this network.

Following comments from some NHS staff and from the Lothian pilot there has been some redesign of the National Involvement Standards and Toolkit and these were presented to the meeting.

There was a discussion on the increased prescribing of generics HIV medicines. However, the network agreed that we should not demonize generics, that side effects should always take priority over cost, that people should use treatment advocates such as iBase, and do speak to your consultant or pharmacist if you experience any side effects.

There was then a discussion about the provision of peer support in Scotland which is currently provided in a piecemeal fashion if at all. With Project 100 offering free peer support training over the next couple years this is a great time for the embedding of peer support into care pathways.

The meeting ended with Health and Social Care Structure training, which is a module of the Voices training developed by Chest Heart and Stroke.