Written evidence submitted by INVOLVE
SUMMARY OF
MAIN POINTS
1. DWP introduced legislation in 2009[232]
removing two significant benefit barriers to involvement in improving
health and social care services for service users and carers who
are in receipt of benefits:
- Service users and carers who are paid for involvement
may now be reimbursed out-of-pocket expenses without affecting
their benefits. Reimbursements of expenses incurred because of
involvement such as travel costs, necessary subsistence, child
care, replacement carer, personal assistant etc and other expenses
are now disregarded when benefit entitlement calculations are
made.
- Service users who are involved may now decline
an offer of a payment, or ask to be paid a lower amount as required
by their benefit rules or ask for the payment to be made to a
charity, without "notional earnings" being applied.
Their benefits are unaffected.
2. The legislation only applies where the involvement
is required by law or as a result of a function provided for under
an enactment. The benefit changes apply to involvement with local
authorities, landlord authorities, NHS Trusts and Health Boards.
3. The National Institute for Health Research
(NIHR) recommends as good practice, the involvement of the public
(including service users and carers) in research. But involvement
is not required by law. As a result, the benefit changes do not
apply to public involvement in research. Involvement in research
is impeded by these continued benefit barriers.
4. INVOLVE request that these benefit changes
are applied to the Universal Credit benefit rules for involvement
in health and social care research.
BRIEF INTRODUCTION
TO INVOLVE
5. INVOLVE is a national advisory group which
supports greater public involvement in NHS, public health and
social care research. INVOLVE is funded by the National Institute
for Health Research (NIHR). At INVOLVE we use the term "public"
to include: consumers, patients and potential patients, service
users, carers and parents, long term users of health and social
services, disabled people and organisations representing the public.
By involvement we mean an active partnership between the public
and researchers in the research process, rather than as participants
in a research project. For example advising on a research project,
assisting in the design of a project, or involvement in carrying
out the research.
6. INVOLVE works with others towards creating
the research community of the future which will be broader, more
inclusive and more representative of the population as a whole.
7. Members of the public bring perspectives
and skills that are not always the same as those of researchers
and health and social care professionals. Their involvement helps
to ensure that the entire research process is focused on what
is important to people and is therefore more relevant and acceptable
to the users of services.
FACTUAL INFORMATION
8. People with the greatest reliance on
health and social care services are generally more likely to be
in receipt of welfare benefits.
9. People who use health and social care
services have experiences to share that are valuable to health
and social care research.
10. Public involvement in the design and delivery
of public services is now accepted as good practice. The NHS introduced
standards for recruiting members of the public to become involved
in the monitoring, design and delivery of health and social care
services. The Department of Health issued guidance in 2006 "Reward
and Recognition"[233]
setting out good practice, recommending that service users and
carers were not to be left out of pocket as a result of their
involvement. The guidance recommends that certain types of involvement
activities should be paid, and all necessary expenses should be
reimbursed.
11. Some unforeseen tensions emerged between
this policy initiative and certain benefit rules that were originally
intended to cover regular part-time employment during a claim
to benefits. These difficulties arise because involvement is very
different to employment.
12. People are generally recruited for involvement
because of their experience of using health and social care services.
Involvement is intermittent and brief: some may attend a monthly
meeting; others a seminar on a quarterly basis. The involvement
is for a few hours at a time and there is no contract. National
organisations recruit nationally and so travel costs may be very
high. People with a caring responsibility may need to pay for
the costs of a replacement carer. Service users may require a
personal assistant and these costs must be met.
13. Benefit rules govern what a recipient may
do. The rules set limits on earnings and usually treat the reimbursement
of certain expenses by an employer as earnings. Although involvement
is very different to employment, the benefit rules are the same,
except where the benefit changes made in October 2009 now apply.
14. Benefits that are paid to cover living and
housing costs have associated rules that set absolute limits on
earnings that may be received in a week. Earnings that are in
excess of the limit will lead to the benefit being stopped.
15. Means tested benefits have associated rules
that allow for £5 or £20 a week of earnings to be disregarded.
Earnings in excess of the disregarded amount lead to a reduction
of the benefit penny for penny.
16. Certain reimbursements of expenses to people
who are paid, are usually treated as earnings including: all travel
costs, part or all of the costs of a replacement carer or child
care. The reimbursed costs of a Personal Assistant or Support
Worker may be treated as earnings at the discretion of a Jobcentre
Plus decision maker. These benefit rules continue to apply to
involvement in health and social care research as the benefit
changes in 2009 did not apply to organisations where involvement
is not required by law.
17. "Notional earnings", that is a
notional amount, may be deemed if a person refuses an offer of
payment for a service and asks to be paid a lesser amount or decides
to volunteer for free. Jobcentre Plus is required to deem that
the higher amount was paid and to adjust benefit entitlement accordingly.
People lose benefit entitlement as a result of money they did
not receive. This benefit rule continues to apply to involvement
in health and social care research as the benefit changes in 2009
did not apply to organisations where involvement is not required
by law.
18. The impact of these benefit rules that continue
to be applied is to make the involvement in research of some groups
of people very difficult. These are people with the greatest health
needs and the greatest social care needs.
19. The introduction of Universal Credit, as
proposed will not resolve these barriers to involvement in health
and social care research.
RECOMMENDATIONS FOR
CONSIDERATION
20. INVOLVE recommend that the benefit changes
made in October 2009 (see Point 1 bullet points, page 1)
are applied to the Universal Credit and extended to involvement
in health and social care research.
21. Health and social care organisations that
involve service users and carers in research include:
- The National Institute for Health Research and
Department of Health commissioning programmes.
- The National Institute for Health infrastructure
organisations eg research networks, Research Design Services,
Collaborations for Leadership and Applied Health Research and
Care, University Research Institutes and groups, and other higher
education institutions, individual research studies, social care
bodies, charities and other not for profit organisations.
December 2010
232 http://www.legislation.gov.uk/uksi/2009/2655/introduction/made,
http://www.legislation.gov.uk/uksi/2009/2678/regulation/2/made Back
233
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/
PublicationsPolicyAndGuidance/DH_4138523 Back
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