FAQ: paying experts by experience

In December 2023, we published our Centring Lived Experience guide which showcased the importance of valuing input from experts by experience, including by paying them for their time and expenses. However, as a sector, challenges persist around doing this due to limited budgets and complex issues around the power dynamics and implications of providing payments.  

In this blog, we explore some of the strategic and practical questions that can arise when compensating experts by experience.

1. Who should we be paying? 

Some organisations choose to make payments available where finance is a barrier to participation, whereas others make payments universally available. The former can help relieve stretched participation budgets but places the onus on the individual to request payment, which may be a barrier in itself. Offering universal payment shows that your organisation equally values those of all lived and learned experiences. 

Your decisions on who to pay are likely to vary based on the type of lived experience your organisation supports: a charity working with people in poverty may take a different approach to one working with people with Diabetes.  

There’s no one-size-fits-all approach to payment. Think carefully about your organisation’s vision, mission, values, and target audience, as well as the work you are seeking to involve people in, before deciding on a policy. 

Such a policy should consider how you will tackle issues of power dynamics and consent. For example, there’s a risk that those who need money could feel forced to share personal experiences to access reimbursement. Think about how you can prevent – or respond to – these challenges. 

2. What forms of input should be reimbursed? 

People with lived experience can input into your work in different ways. This might include ad hoc involvement or input into research, taking on staff roles, or becoming a member of an advisory group. You might decide to reimburse some of these forms of input, and not others. For example, NHS England only pays experts by experience where ‘strategic and accountable decision making and leadership’ is required. Alternatively, you may choose to reimburse all forms of lived experience to showcase the value of this expertise in all forums. Carefully thinking it through will help you be clear on the rationale that underpins a policy.

Consider: 

• The time commitment required–is it one off or a regular commitment? 
• The opportunity costs for participants- are they missing work, or having to pay for childcare to be there? 
• The responsibility that involvement is placing on the individual–are they making key strategic decisions, or one of many people feeding into a piece of insight? 

Factors such as these might help give a sense of how much finance is a barrier to participation, or how much payment will be needed to showcase the value of what people with lived experience are giving to your organisation.  

3. What about reimbursing trustees? 

There are additional challenges for paying trustees because Charity Commission guidance sets out that in general, trustees shouldn’t be paid for their work on a board.  

While a widespread change to this policy may be controversial, it can be changed on a case-by-case basis. If payment for board involvement for a set number of trustees is important to your strategy and impact, you can look to change this via altering your governing document or by seeking Charity Commission approval. At NPC, we have previously argued that this change should be made easier for charities that are seeking to bring more lived experience into their governance structures. 

Otherwise, think about how else you can support people with lived experience to take on board roles. This might be via practical actions like changing when your board meetings are or making sure trustee expenses are promptly paid, or bigger picture things, like allowing your board members to access professional development opportunities or challenging a culture that may be putting off people with lived experience. For example, last year an organisation gave an example of a service user who was shadowing a board meeting being put off taking on a board role by pre-meeting chit chat about ski trips. 

4. How should we make payments? 

The key to this is choice; settling on too rigid a process can prevent take up where the payment process doesn’t feel appropriate or risks negatively impacting a participant’s benefits or tax liability. For our Open Philanthropy project we offered participants financial reimbursement in the form of a bank transfer, as a voucher for a high street shop, or as a donation to a charity of their choice. They were also able to waive their right to reimbursement. 

From our work, we’ve learnt how important it is not just to be clear on what and how people will be paid, but also when. If you’re working with people experiencing financial hardship, clarity on the specific date a payment will arrive is crucial. 

5. How much should we pay? 

How long is a piece of string? There is no universally accepted benchmark for user involvement activity, different approaches could include:  

• Adopting an hourly rate or session fee for work completed, using the national minimum wage or real living wage as a starting point.  
• Paying experts by experience the same rate you would pay a freelancer or consultant. 
• Implementing a tiered payment system – ranging from lower amounts for research participation, to higher fees for leading workshops, or contributing to board level decision-making  

Of course, whatever you decide will have to be resourced, so ensure this is built into budgets and fundraising proposals and be clear on the justification behind your decision when you speak to funders. 

6. How can I avoid implications for tax, benefits, or employment law? 

This is a key challenge for organisations involving experts by experience, and not one that NPC is qualified to give advice on! In essence, making payments to people with lived experience could affect their tax liability, the benefits they are entitled to, or make your organisation liable to employment law, and this is difficult to avoid. Many specialist charities have guidance on this, such as Disability Rights UK’s guidance on how payments affect benefits. 

To avoid this challenge, some organisations add a waiver to their policies that states that participating individuals should seek independent financial advice, or that the responsibility for ensuring compliance with benefits or tax falls on the individual rather than the charity. However, this approach places the onus on the individual and can be stressful ; it is important that you signpost people to support (or even fund bespoke advice).  

There is no one size fits all approach to paying experts by experience. But valuing and recognising everyone’s contribution is a key principle for effectively centring lived experience. It is important that you think these questions through at an organisational level and ensure your approach is consistent with your organisation’s values and vision.

Have thoughts on paying experts by experience, or want to discuss your approach to centring lived experience? If so, please get in touch.