By Lucy Simons, INVOLVE Coordinating Centre

Please note that benefits guidance and tax legislation been subject to considerable change/reinterpretation since 2019. Any INVOLVE documents referring to the payment of involvement fees may now be out of date and are pending a review during 2020. INVOLVE’s guidance should not be substituted for professional advice, and INVOLVE accepts no liability for decisions or actions taken as a result of its guidance. You are always recommended to take your own tax, finance or legal advice.

Welfare benefit barriers

If you have been grappling with the complexities of receiving or offering payment for involvement in research and how this affects welfare benefits, we hope good news is in store. Baroness Thomas of Winchester, a strong advocate for involvement and easing the welfare benefit barriers that may discourage people contributing, has been looking at the introduction of Universal Credit (as proposed in the Welfare Reform Bill). Those of you familiar with the situation will know that legislation in 2009 removed some benefit barriers to involvement, but only where there is a statutory duty to involve the public and service users. The barriers remain in place for involvement in research where there is no statutory duty to involve.

Baroness Thomas submitted an amendment about this to a debate on Universal Credit in the House of Lords on 3 November 2011. The full debate is published in Hansard

(column GC483). This led to the Minister for Welfare Reform, Lord Freud, meeting Baroness Thomas to explore possible solutions to this situation. At the meeting, it was agreed that it is important to avoid situations where benefit claimants might be discouraged from involvement in the field of NHS, public health and social care research because of concerns about the impact on their benefit entitlement. This was followed by commitments to ensure the regulations for Universal Credit would be designed to remove the barriers identified in Baroness Thomas’ speech.

We are hugely grateful to Baroness Thomas for pursuing this issue over many years. We hope that the gains she achieved at the end of last year will be followed through with the planned introduction of Universal Credit in 2013.

In the meantime we need to be mindful of these benefit barriers and make sure they are accounted for when setting up systems to pay people when they get actively involved with research.

Mental Health Research Network revised model payment policy for service users and carers

Thomas Kabir, Service Users in Research Coordinator at the National Institute for Health Research (NIHR) Mental Health Research Network (MHRN) in collaboration with Judy Scott, independent consultant in involvement and benefits, has updated and revised the MHRN model payment policy. Across the MHRN, some regional hubs are hosted by universities and some by NHS Trusts. So Thomas and Judy have developed a model policy for each type of host. The principles of both policies remain consistent but each regional hub of the network can adapt the model policies to the particular procedures relevant to their host organisation.

Thomas and Judy have also produced supporting documents which set out in detail the different conditions for a range of welfare benefits and tips on how best to offer payment and reimburse expenses for people getting involved while receiving benefits. These documents are available through the publications page of the MHRN website