One-off lived experience focus groups are another option. Convening a lived experience group or forum will require a flexible approach and continual consideration of the needs and perspectives of those involved.
Examples of involvement
A lived experience group might contribute to informing the work of the APC in a number of ways, including:
- consideration of, and proactive contribution of items for, APC agendas;
- involvement in the commissioning of advocacy-led audits to seek the views of ‘adults at risk’ who have participated within ASP processes, (and carers)
- helping to design resources for use by ‘adult at risk’, professionals and wider public
- participation in videos to raise awareness, about ASP in general, the experience of involvement in Case Conferences, etc
- contributing to delivery of training for professionals on the perspective of adults at risk
- involvement in staff recruitment
- participation in focus groups led by the Care Inspectorate as part of inspection activity
- participation in APC (or wider public protection) strategic development sessions – for example, to inform refresh of improvement plans
Key considerations
Issues which may be experienced in the organisation of such a group may include:
- attracting and recruiting adults who are willing to participate. It is however worth bearing in mind that even groups with low numbers of members can prove extremely informative
- individuals may not (be able to) attend meetings (for various reasons), on the day, even with prior support planning
- risk of re-traumatisation of those involved
- risk of adults ‘over-sharing’ (“telling their own story”)
Considerations in organising a group
In practical terms, whichever approach is taken, it will be helpful to consider the following.
How the group will be organised and facilitated (taking a trauma-informed approach)
You should consider appropriately qualified and trained personnel. This could be an independent advocacy service – potentially as part of the commissioned service specification. Support for those involved, by social work professionals or care providers, could be considered. The needs of those with caring responsibilties' should also be considered.
What preparatory activities need to be undertaken
For example, how individual members will be supported to be involved (in terms of information provided about the group and what is involved, what ASP is all about), communication and accessibility needs, etc.
The format and venue of meetings
This should be appropriate to meet the needs, and facilitate the attendance of those involved – for example, advocacy office, community centre (or virtually, if preferred?). Timings, length and frequency of meeting should also be considered, to best work for those involved.
How the (two-way) flow of information will take place
This is between APC and the Lived Experience Group and how the group will be represented at APC meetings. It may be helpful for the APC Convener or other APC members to attend the Group periodically, to support, and to hear messages directly.
How information will be shared with members of the group – use of USB sticks could be considered, so that personal emails are not shared inappropriately.
Remuneration or reimbursement of expenses
For example, for travel to meetings of the group.
Membership
A Lived Experience Group could involve:
- individuals who have current or past experience of being supported and protected under Adult Support and Protection
- carers of those who have or had such experience
- representatives from groups of people that have experience of being an ‘adult at risk’ or carer
- representatives from groups which ‘campaign’ on behalf of ‘adults at risk’ and carers
It may be helpful to ‘refresh’ or seek additional membership periodically, to gain different perspectives.
Template for an invitation to join the group
Example wording for an invitation to join a Lived Experience Group can be found at Appendix 1.