Involving service users in the oversight and development of
mental health and learning difficulties services is a basic
requirement for the trusts, voluntary agencies and local
authorities which provide them. With this requirement comes a duty
of care over service users’ benefits security. Yet the complexity
of the benefits system means that fulfilling this requirement can
be a struggle.
Most service users who are asked to become involved receive
incapacity benefits. This is usually their sole income and it is
not secure – breaches of benefit rules can lead to their income
being stopped. In addition, even if restrictions on the hours of
involvement and rate of pay are complied with, other areas can
present problems. Incapacity status can be reviewed and lost as a
result of Jobcentre Plus misunderstandings – and “involvement”
often leads to assumptions about the health of the service user.
Even voluntary involvement can put incapacity status at risk.
The Mental Health Foundation is publishing a guide to payments to
service users for involvement, based on the experience of a number
of NHS trusts in developing good practice policy. A Fair Day’s
Pay explains the benefit rules and systems, advises on
procedures and makes recommendations for good practice arising from
development work with Jobcentre Plus at local and regional
Three areas of legislation apply to involvement: the benefits
system, the Minimum Wage Act 1998 and employment law. The first
applies to people who receive benefits, the second and third apply
to the employer. People who receive benefits and who do some
part-time paid work are protected by employment legislation in the
same way as those who do not receive benefits.
The benefits system
It is generally understood that the incapacity benefit system
allows some part-time paid work if this complies with the hours and
earnings limits set out in the permitted work rules. What is not
always appreciated is that permitted work can nonetheless lead to
these benefits being reviewed and possibly disallowed.
According to one service user in Kent: “I rang the Jobcentre and
told them that I had been asked to chair a service user involvement
group for £20 once a week. The Jobcentre told me that if I did
this they would send me for a review of my incapacity
The medical test (called the personal capability assessment) for
entitlement to the higher rated incapacity benefits, is conducted
by a doctor appointed by Jobcentre Plus. There is a points system
to assess the level of ill-health or disability. The medicals are
held every three years or can be triggered by Jobcentre Plus if the
reported activity (this can be any activity including study or
voluntary work or permitted work) appears to indicate a level of
The problem with “involvement” lies in the reporting. As the
medical test is not conducted on the spot where the activity takes
place, the decision is drawn from the description of the activity.
Jobcentre Plus has had no official guidance on section 11 of the
Health and Social Care Act 2001.
If a person with mental health problems tells Jobcentre Plus that
they have been appointed on to the trust board, the assumption may
be that their mental health problems have diminished to a point
where incapacity is in doubt.
Unless Jobcentre Plus is advised that this is a Department of
Health scheme to put the patient at the heart of planning, and
unless they are advised of the many special support measures
introduced to facilitate the patient in their role, it is likely
that the person’s incapacity status will be reviewed and not
unlikely that they will lose their benefits.
This was confirmed during the Jobcentre Plus staff training
sessions provided by NHS trusts as part of their development work
for service user involvement. One Glasgow benefits centre decision
maker says: “If I had been told that an incapacity claimant had
joined the trust board and if you [the NHS trust representative]
had not made me aware of this scheme to involve patients and the
special support provided, I would certainly have asked for a review
of incapacity. I may still decide to do so if the activity in
itself indicates that the criteria for passing the personal
capability assessment have changed.”
For their implementation of section 11, the NHS trusts covered in
A Fair Day’s Pay followed the advice of senior Jobcentre
Plus officials. They conducted staff training sessions in two
regional benefit centres, in nearly 20 local social security
offices and jobcentres and in two medical centres where the
Department for Work and Pensions doctors were based. The intention
was to ensure that service users did not have their benefits
reviewed automatically as a result of reporting involvement on
various committees for the trusts. The training must be repeated
every year because of high staff turnover in Jobcentre Plus local
Another way of promoting benefits security for service users during
involvement has been for trusts or partnership boards to send
Jobcentre Plus a written description of the proposed section 11
scheme and the proposals for payments. This is accompanied by the
trusts’ own guide to their understanding of the Jobcentre Plus
benefit rules. The complexities of constantly changing legislation
have sometimes led to hard-pressed front-line Jobcentre staff
misunderstanding their own regulations – this written information
protects against future disputes.
The trusts also provided service users with personal welfare rights
advice on how much they could earn and any benefit conditions.
Advice sessions are confidential but a copy of the guidance is
required by a trust’s human resource department as part of the
contractual terms. In this way the trust has fulfilled its duty of
care toward benefits security.
Minimum wage and employment law
Earlier this year, WH Smith acknowledged it had breached the
Minimum Wage Act by “paying” a woman with learning difficulties in
vouchers. She had also acquired full employment rights in her
four-hours-a-week job. The law is clear: volunteers can only
receive expenses necessarily incurred in the course of voluntary
work; any benefits in kind will lead to work being treated as paid;
the minimum wage applies and so does employment law.
It is considered good practice to offer service users the option of
involvement on either a voluntary or paid basis after they have
received individual welfare rights advice. Where involvement is
paid, concerns have been raised about the implications of service
users becoming employees of the trust or partnership board, with
the associated formal terms and conditions of employment. Most
worries are around cost, long-term liabilities and the possibility
of service users losing their independent voice.
In most instances £20 a week is the maximum that can be paid
for involvement per person. Paid holiday of at least the statutory
minimum of four weeks pro rata is mandatory. But sick pay,
maternity pay and stakeholder pensions do not apply where earnings
are under the national insurance threshold. Weekly earnings can be
“averaged” over a pay period.
A “bank registration agreement” may be the most appropriate form of
terms and conditions for service user involvement. Under such an
agreement, no ongoing mutual obligation is offered, and each piece
of work is treated as separate. The agreement used for agency
nurses can be adapted to be much shorter and to be written in
user-friendly language, as long as legal advice is taken.
The job description can be brief and define the independent status
of the service user’s involvement and spell out any
responsibilities for representation where these are relevant. It is
important to bear in mind that paid involvement cannot require
associated duties for reporting back on a voluntary basis. The
involvement must be either entirely voluntary or entirely paid.
Judy Scott is author of A Fair Day’s Pay;
Mental Health Foundation, £8, or free for people who are
unwaged. Call 020 7802 0304 or visit