People living in challenging circumstances are taking action to remove rules which they say prevent them from having a say on services affecting them.
Many organisations such as charities, local government and universities work with people with lived experience of issues such as poverty and homelessness to shape and improve their services.
Best practice is that participants are paid for their expertise – and the government often mandates this to be the case, for example in the accreditation of university courses.
However, research by the Austerity Action Group found that over a third (35%) of people giving their advice and expertise through research and involvement opportunities said they accepted a reduced rate of payment for their time or only took expenses due to worries that remuneration for their expertise would affect their benefits or tax.
In 22% of cases there was no payment made at all, which was more likely to affect those with a long-term health condition, disability, people of colour and other marginalised groups.
One respondent to the survey said:
Using lived experience is not cost free, either emotionally or physically. If I am making a contribution to a project I expect to be paid, just like all the other professionals or consultants around the table. There also needs to be payment for preparation, it is not easy just to rock up and share some very traumatic and discriminatory experiences about services.
But campaigners are fighting to have the rules changed. A broad range of charities, campaigners and individuals have written to Rt. Hon. Lucy Frazer QC MP, the new Financial Secretary to the Treasury, to ask for the Government to make two changes to tax rules to ensure that participating in research and involvement opportunities is exempt from tax.
Campaigners have also called for clarity that this earnings exemption also applies to income assessed for benefits thresholds.
Those affected by the issue can also take action through a new toolkit of ideas available online: https://www.basw.co.uk/social-workers-union/lived-experience-fair-remuneration
Angi Naylor, a social worker and part of the Austerity Action Group, commented:
We rely on people with lived experience of issues to contribute to research and service development. It’s a key way that we can create new services or policy recommendations. But tax and benefit rules mean that these people aren’t being rewarded for their time and expertise – these people are experts through lived experience and should be treated as such.
Dr Peter Unwin, senior lecturer in social work at the University of Worcester, said:
At the heart of the development of many university courses are the views and experiences of people who our graduates will go on to work with. It is essential that their voices are heard and that they are fairly remunerated for their expertise.
This research reveals why we are calling on the Government to make minor changes to tax and benefit rules to ensure anyone participating in research and involvement opportunities should be able to accept full payment for the expertise they bring to charitable and public organisations.
John McGowan, General Secretary of the Social Workers Union (SWU), said:
The work of the Austerity Action Group is an important aspect to the campaigning work we do at SWU.
There have always been complex difficulties for organisations to pay people with lived experiences for their time and expenses and who take part in co-production / participation activities without them losing out on their entitlement to benefits.
The research highlights this and further interventions are required so not to penalise the very people who are needed to shape services and offer advice and participation.
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