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 a 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 roundup 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.

The fifth meeting of the National Involvement Network was held on the 5th February 2017.

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

The meeting started with the usual round up from the local groups.
The NIN are keen to develop a leaflet for newly diagnosed which will have stories from positive people about their experiences around diagnosis, also offering what helped for them at the time. There was also discussion about what information newly diagnosed people should receive. There is much variation across Scotland. One thing NIN members were clear about was not to be giving people the prosecutions leaflet.
There was further discussion about the groups finding it difficult to attract new members. This is frustrating as one member said it was by joining their local group that they finally got the appropriate support they needed. Previously they had felt quite isolated.

The NIN are keen to develop a newsletter and everyone liked the name Inspire.One member had recently had their medication changed without any conversation with their consultant. They also started to experience side effects which they hadn't had before. The NIN felt that we needed to add an additional caveat to those drawn up at the last meeting which is that no one should have their meds changed without being fully involved in any decision which affects them and this includes medication.
The NIN have been crucial to the development of the National Involvement Standards and the surveys were revisited and improvements suggested and implemented.

The sixth National Involvement Meeting was held on 6th July 2017

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

The meeting started with the usual round up. With 7 health boards represented this was the biggest meeting so far. HIV Scotland are currently working in the remaining mainland health boards to try support them to develop patient involvement opportunities locally.

We then ran a workshop where members got to interview each other about their experiences of diagnosis. We had people who had been diagnosed only a year and people who had been diagnosed over 20 years ago and so there was some very interesting accounts. We plan to use this information to create a supportive leaflet for the newly diagnosed.
The Scottish Govt. are consulting on the new social security powers for Scotland and we were keen to hear the views of the NIN to their proposals. These were written up and helped support HIV Scotland's submission.

We finally looked at ways we can capture the voices of people who are not participating in local groups. In Tayside there is a local initiative to ask staff to verbally ask patients if they could change one thing about service what would it be. This could be an excellent way to capture people's thoughts in anon survey way.

As usual we carried out an evaluation at the end of the meeting and asked members to say what the benefit of coming together were? Sharing good practice, unity is power, a feeling of connectedness with other HIV services users, peer support, sharing of ideas solidarity, community, inspiration. The being involved together to enable help as a great community conscious of what is needed to support people living with HIV to discuss and hear other people’s experiences coming together and becoming a single voice.