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Payment for being an involved service user/carer. Sue Hinder & Sara Morris 26 January 2006. Background. Offering payment to recognise value of people’s contribution is seen as good practice. Recently more guidelines have become available: INVOLVE (2003)

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Payment for being an involved service user carer

Payment for being an involved service user/carer

Sue Hinder & Sara Morris

26 January 2006


Offering payment to recognise value of people’s contribution is seen as good practice.

Recently more guidelines have become available:

  • INVOLVE (2003)

  • Social Care Institute for Excellence (2005)

  • Department of Health (2006)

The options
The options

  • Volunteering

    • Expenses reimbursed only

  • Payment for work done

    • Variable rates for variable involvement

    • Allowances and fees

  • Salaried posts

    • Key element of social inclusion

    • Continuity of involvement

    • Becoming professional?


  • Involvement can be on a voluntary basis

  • Undertaken freely and by choice

  • Rewards?

    • May be moral benefits – helping improve services

    • May be personal benefits – e.g. social and learning opportunities

  • Out of pocket expenses reimbursed

    • Travel, carers, telephone, personal assistant etc

    • Reimbursement of expenses and advice about benefits entitlement - reported as an important factor in whether people volunteered (National Centre for Volunteering survey)

Payment and value
Payment and value

  • Reward and recognition

  • Incentive

  • “Ideally,remuneration should reflect the commitment given to the organisation and the impact on the person’s life or work responsibilities” (WDC)

  • Enabling equitable access to involvement – broader range of people

  • Supports balancing power differential in research team

Making payments
Making payments

  • Type of activity

    • Levels of responsibility

    • Skills and experience

    • Time and commitment

  • Hourly/ daily/ flat/ sessional rates?

  • Employment rules and regulations likely to apply (e.g. minimum wage)

How payment affects benefits
How Payment affects Benefits

  • Governed by Permitted Work rules

  • £78 per week

  • Less than 16 hours per week

  • 2 or 3 days a month

  • Permitted Work (work, training or voluntary) must be reported.

Earnings disregard
Earnings Disregard

  • Means-tested benefits

  • Every penny over £20 taken off benefits

  • £10 if with a partner

  • Does not take into account that you may earn £60 one week and nothing the next

  • But can pay monthly in arrears

Supported permitted work
Supported Permitted Work

  • Named support worker

  • £78 per week and allowed to keep it all.

Non means tested benefits
Non means-tested benefits

  • Incapacity Benefit and Severe Disablement Allowance (without means-tested top up) can earn £78 per week and keep it.

  • Disability Living Allowance (for care and mobility needs) not affected by earnings but involvement may prompt needs to be re-assessed.

Non means tested benefits1
Non means-tested benefits

  • Permitted work for 6 months

  • Can be extended by another 6 months

  • After 12 months claimant can reduce earnings to £20 per week or;

  • Do Supported Permitted Work with a named support worker.

Child care costs
Child care costs

  • Up to £60 per week for child under 11 years.

  • Must be with a registered childminder

  • Does not affect benefits

One off cash gifts
One-off cash gifts

  • Will not affect benefits so long as they do not breach the savings rule.


  • Research volunteers, lay participants, participants in clinical trials allowed reasonable costs for travel, subsistence and participation without being liable to tax.

  • Excess of “reasonable costs” are taxable as Miscellaneous Income


  • If amount paid for “reasonable costs” is £8,500 or more then treated as earnings.

  • Donating to charity can affect both tax and benefits.

Payment methods
Payment methods

  • Variety of methods

  • “Skating on thin ice”

  • Gift vouchers – unclear

  • LETS systems – only £100 per year

  • Pay to voluntary organisation and grant to individual.

  • Is there a legal way of doing it?


  • Lack of clarity

  • Lack of understanding by Jobcentre Plus staff

  • Risk of being seen as fit for work.


  • Difficulty of signing off and and on again

  • Risk of losing invalidity entitlement.

  • Stress!!!

Consultancy on the cheap
“Consultancy on the cheap”

  • “Community consultants”

  • How much would an organisation have to pay for consultancy?

  • At least £500 per day

What do we want
What do we want?

  • “Earnings disregard” increased substantially. What level?

  • No risk of claims being re-assessed as a result of involvement

  • Empowering not punitive approach

Political will political lobbying
Political will, political lobbying

  • MPs

  • Government ministers

  • Opposition parties(

  • Parliamentary questions

  • Letters, meetings,websites

It s up to us
It’s up to us

  • Boring but important.

  • Raising awareness

  • Giving information

  • Influencing the political agenda


Department of Health. Cooley A & Lawrence Z (2006) Reward and Recognition. The principles and practice of service user payment and reimbursement in health and social care. A guide for service providers, service users and carers. Department of Health

Lennox A et al. A practical guide for involving the public in health and social care services. Leicestershire, Northamptonshire & Rutland Workforce Development Confederation

Ryan T & Bamber C (2002) Pricing participation: A survey of organisational payment practice to users and carers for expenses time given in service development and delivery. Working Briefing paper version 1. North West Mental Health development Centre.

Steel R (2003) A guide to paying members of the public actively involved in research. INVOLVE

Service User Research Group England (2005) Guidance for Good Practice: Service User Involvement in the UK Mental Health Research Network.

Turner M and Beresford P (2005) Contributing on equal terms: Service user involvement and the benefits system.Adult services report 08.Social Care Institute for ExcellenceSocial Care Institute for Excellence, London

Websites which may be useful
Websites which may be useful


  • Social Care Institute for Excellence

  • Volunteering England

  • Service User Research Group