Keir McKechnie, Lived Experience Panel Co-ordinator, SAMH
Phase 1 story (Spring / Summer 2020)
How have you been able to keep a focus on what matters to people during COVID?
I co-ordinate a panel of people from across Scotland with lived experience of loss through suicide. The panel has been created to inform Scotland’s strategy for suicide prevention. It’s about learning from the panel members and making recommendations about improving support and services. The work was still being established in the months leading up to COVID and we had already had our first two full day engagement events.
When we went into lockdown, the panel very quickly said that they wanted to continue the work. Indeed there is a new sense of purpose, given the anticipated mental health fallout from COVID. Given the emotive nature of our work, digital meetings had not been considered before. COVID required completely changing our approach to engagement.
What have you had to do differently and what made this possible?
Providing a safe environment is so important for this sensitive work. So the challenge for myself and for the Scottish Government and the delivery leads for the Suicide Prevention Action Plan is how do you do this kind of engagement online. We had to find a way that is safe while also genuinely gathering that experience. There was fear to start, partly because of my lack of tech skills but also fear about being able to genuinely engage, being able to make eye contact, reading non-verbal communication.
It would have been very easy for us to have closed down for the duration. But the first thing we did was decide we had to continue because there was a need for real time learning about how people were coping in this crisis. We started by asking the panel, did they want to continue, were they happy to do so online. Amazingly they all said that they did. In fact the work has taken on new urgency for them.
We have set up a structure which includes meetings with regular breaks and time out. There is the option to take an individual break at any time. We use break out rooms so people can still work in small groups. We have a session on safeguarding before every meeting where we remind ourselves of how the meetings will run. We ask our guests to leave after their input so we can do a debrief. We also do a series of welfare calls to people. So that is all part of a new system and has required a lot of adaptation.
What have you noticed that has been better? (for people using the service/staff/the organisation)
It’s been surprising to me that this situation has helped the group bond in some ways. Given they are geographically distant, there were no opportunities to get together outwith our formal meetings before. So for example, we would never have had a Sunday night quiz before. People can chat during that and let their hair down.
We have also engaged with the SG around what they learned that could help people during COVID19. Could the panel make suggestions for coping techniques and safety techniques for moments of crisis. I’ve received an enthusiastic response to that request. I think the panel members feel that their input and experience is valued and their responsiveness has been noticed by the national delivery group.
How did this make you feel?
I feel a sense of achievement. I was worried the panel would fragment and we would lose momentum. I feel we are developing as a group, as evidenced by turnout and responses to surveys. We were challenged to adapt and collectively we have done that.
What have you learned through this?
So I’ve learned that it is possible to use the technology, to master it and to do it in a safe way. We do need to acknowledge the limitations too. We are supporting people who are sharing traumatic experiences. It is not a substitute for face to face engagement. But for now key learning is that it is possible to learn and share safely online.
I have also been aware that as well as checking in with panel members to make sure they are ok I also need to check in and talk about how I’m feeling, given the emotive nature of this work. It’s not been that obvious who has that role but I’m leaning on people and I have been able to talk about how I handle disclosures and some of the more challenging aspects of the work.
Anything else you want to tell us?
I’ve been challenged by all of this too. I have had to put a lot of effort in to master the technology and develop ideas in a digital way. I have rewritten training sessions and new presentations. Aside from that, dealing with such an emotive subject in an online forum can be overwhelming. It’s been worth it though, to keep the work going.
Phase 2 story (Autumn 2020)
What has continued to help keep a focus on what matters to people during the pandemic?
My main role with SAMH, which started back in September 2019, is facilitating the suicide prevention lived experience panel. The panel was set up to inform government policy and service improvement in suicide prevention. The pandemic itself has created a sense of urgency. Panel members have observed this and have expressed the need to continue the work around different aspects of suicide prevention work, like crisis support and post bereavement work. They want to be able to influence the response to mental health needs arising from the pandemic, by sharing their own experiences Consistent and regular communication with the panel members has been essential. This has required being sensitive to the pressures people are under and the issues they are facing in their own lives. When we’re involving key players and professionals involved in different aspects of the plan, we’ve had to think through how best to plan engagements online. One example of an engagement session involved considering groups at higher risk from suicide. A key issue has been how to enable people to share their lived experience. We listened to panel members who told us we needed to limit numbers attending engagement sessions so that people could share their experience sensitively and without being rushed. This was excellent advice and these sessions went very well. We have also made sure that our partners who have been invited to come and speak share any background information or questions they have on the topic. This has worked very well as it allows panel members to properly consider the issues and their answers to any questions being posed. We also have pre-planning meetings before the speakers came to speak to the panel to make sure we made the best use of everyone’s time. Panel members have their own peer support group. They are free to discuss issues without me being there, but they can also contact my colleague and me at any time for an informal chat or email exchange. The welfare check-ins take place at the end of each session to make sure everyone is ok. We need to be mindful that panel members have families and jobs and are personally affected by this Covid crisis. That influences the nature and pace of the work as we need to remain mindful not to bombard members with too many demands.
Are there changes that seem to be lasting longer term and are there things that have slid back to old ways of doing things?
We realise that digital engagement can be creative and can in some ways make it easier to involve people, especially for remote and rural populations. Panel members have developed short films, voice recordings, Instagram material and twitter threads which can then be edited by those with the know-how. We are using social media much more to share people’s experiences and it is producing great results. Panel members confirm they are missing the face to face engagement. However, digital and online are playing a vital role in continuing the work in ensuring that the national suicide prevention action programme continues. We look forward to engaging face to face again as soon as it is safe and possible to do so.
What difference has this made to people?
Panel members have expressed feeling valued and being taken seriously for their contributions. They can see the evidence of their voices being heard. In short, the Panel has been able to influence the direction and content of the National Suicide Prevention Action Plan. Through their engagement work the lived experience panel directly influenced the identity of the new United to Prevent Suicide campaign in Scotland. They were involved in producing TV ads that were watched by millions. Their stories were shared on STV and BBC and Radio Scotland as part of the campaign launch. Behind the scenes, panel members have given their time to offer advice to help shape bereavement support services, to give a better understanding of at-risk groups & shared their views on developing models of crisis support to help people in suicidal crisis
How did this make you feel?
I am relieved and really pleased that this vital work has been able to continue. I am so impressed by the commitment of the panel members in particular, but also with the wider range of stakeholders who have stuck with this programme and worked extremely hard to make sure the dots of different parts of the plan are joined together, with lived experience at the heart of it all.
Reflecting on your experiences what have you learned?
The key lesson is that to do this sensitively you have to seek the permission of people with lived experience every step of the way. We have learned that this needs to be negotiated and clarified with each partner involved in the project. For example, if someone is doing a TV interview or other media input we set up a meeting with the relevant agency, discuss the questions in advance and agree what is ok to share. That is at the heart of everything that we do.
What difference has it made to you to tell your story as part of this project?
A huge difference! The work of the Lived Experience Panel is a very good news story in very difficult and challenging circumstances. Being able to share the learning and read how other people have adapted to working during this pandemic has been invaluable. Personally, I have loved reading all of the stories in this project and the creative things that professionals are doing to keep delivering support and help to vulnerable people. The determination to go on has been inspiring!