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2nd July 2024

When does sharing lived experience become volunteering?

Crucially, this work will be underpinned by a government-led national engagement, seeking the views and experiences of people at the heart of these services. He closed his speech by saying ‘our task now centres on listening, and delivery’.

Listening to stakeholders is a crucial stage in the design of policy and services and is thankfully something that we’re collectively getting much better at. People with relevant experience and insight are now often at the centre of policy development and service design. In fact, services that are ‘co-produced’ are often seen as the gold standard for ensuring person-centred delivery.

However, all this listening from policy makers often requires those with lived experience to give a lot of their time. Whilst some people will share their experience once, perhaps in a survey or focus group, there are many people who are asked to share their insights on a more regular basis. Some NHS Trusts in Scotland, such as NHS Forth Valley, have Patient Panels, whereby people with lived experience are brought together to inform practice development and quality improvement. The Scottish Government also has a Pain Management Panel, consisting of people with lived experience of chronic pain, to help shape the planning and delivery of a Framework for Pain Management Service.

Many voluntary sector organisations also engage people with lived experience to share their stories to inform decision-making and policy influence work. The Health and Social Care Alliance (The ALLIANCE) have lived-experience networks ‘to ensure people inform national policies, campaigns and service design’. In an interesting approach, Fife Voluntary Action Lived Experience Team engage a group of volunteers with lived-experience of mental health challenges, trauma or unemployment to support the development of public policy, service design and delivery, and academic research. More on this later.

In some instances, people are paid to share their lived experience. In 2021, the Scottish Human Rights Commission published a research report exploring the issue of paying people with lived experience of human rights issues to participate in research, policy making, and other processes that affect them. Whilst there are benefits to this approach, specifically to recognise the value of lived experience and to position people with lived experience as equal stakeholders, the report identified several potential barriers to paying people with lived experience. This includes the potential impact of payment on benefits entitlement, tax implications, and whether payment could constitute a contract of employment. Sound familiar?

If you work in volunteer management, you will likely be well versed in the potential implications of providing any form of financial recompense to volunteers over and above their out of pocket expenses. The Volunteer Charter is very clear that volunteering should be unpaid, but that any out of pocket expenses should be reimbursed. The Department for Work and Pensions ‘Volunteering and claiming benefits’ webpage states that ‘any money you are paid that is not to cover a reasonable expense may stop your benefit or reduce the amount you get.’ In addition, certain groups, such as asylum seekers, are often not allowed to work so any form of payment could impact their asylum claim. In some instances, therefore, payment for sharing lived experience may not necessarily be the best option.

All of this leads me to ask several pressing questions. In instances where people sharing their experiences are not paid or employed to do so, how do we make sure that their involvement is as positive and meaningful as possible? How do we ensure that they are given the necessary support, particularly if the experiences they are sharing are traumatic in nature? How do we ensure that their practical requirements – travel expenses, accommodation, access to technology – are met? And perhaps most importantly, if payment is not a viable option, how do we value and recognise their time?

I am confident that many organisations will have a very clear infrastructure in place to support people with lived experience who regularly give their time. However, having worked in the voluntary sector for over 15 years, I have also experienced less ideal scenarios, such as people being offered high street vouchers as a ‘reward’ for sharing their lived experience. We also receive enquires at Volunteer Scotland about advertising roles where people are asked to share their lived experience and grapple with the lack of clarity around this issue.

So, I pose the question, could framing the regular and structured sharing of lived experience as volunteering be the solution? I am by no means an expert, but there appear to be very clear parallels to volunteer management. In the Scottish Government’s Volunteering for All National Framework, volunteering is defined as ‘a choice to give time or energy, a choice undertaken of one’s own free will and a choice not motivated for financial gain or for a wage or salary’. It further states that:

‘the term volunteering is used to describe the wide range of ways in which people help out, get involved, volunteer and participate in their communities (both communities of interest and communities of place).’

Surely the unpaid, regular, and formalised sharing of lived experience, such as through panels, matches this definition?

This approach certainly seems to be working for our colleagues at Fife Voluntary Action, judging by the amazing feedback they have received from a range of key stakeholders. A representative from Skills Development Scotland stated that:

‘It brought a new lens to the panel and showed real commitment from volunteers to bring their experiences, words, and thoughts to the table, all of this helped as we considered the impact of provision on all our communities in Fife.’

There are also very clear expectations for the Lived Experience Volunteers around structured support, training, reimbursement of expenses and their expected commitment. It seems like a win-win.

Such a reframing could help to ensure that those sharing their lived experience have a clearer infrastructure for recruitment, ongoing support, claiming expenses, and regular recognition of the time, as well as experience, that they share. Framing it as volunteering also provides an element of clarity around the nature of their engagement, which could be helpful in certain situations such as in conversations with benefit advisors or for taking advantage of employer supported volunteering offers.

Do you agree that volunteer management infrastructure presents a good solution for engaging people to share their lived experience? We’d love to hear your views and experiences on this topic. Please email me on sarah.latto@volunteerscotland.org.uk to be part of the conversation.

Sarah Latto

Senior Policy Officer