This document summarizes key lessons from a research project on involving carers and users in social care. It discusses the importance of involvement, including that carers are experts in the cared for person's needs. It describes the mixed method research design used, including interviews with various groups and a national survey. It outlines some formal and informal approaches to involvement found, and recognizes limitations such as not all carers identifying as such. Finally, it provides examples of involvement ideas discussed, such as capacity building, piggybacking on external events, and registers to identify carers.

1. USER AND CARER
INVOLVEMENT - LESSONS
FROM RESEARCH AND
PRACTICE
Jo Moriarty
Social Care Workforce Research Unit

2. Why it’s important
•Carers are experts
• Caring generally occurs in longstanding relationships
• Particularly important where person cared for lacks
capacity
• Cost effectiveness
• Carers will not use services they don’t value or think
are low quality
• Unsuitable services still cost!
•Risks to carers’ health if not supported
• Carers have poorer psychological health compared to
matched counterparts not caring (Hirst, 2003)
6 December 2013
Belfast: Carers NI
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3. Talking about
•Research project funded by
National Institute for Health
Research School for Social Care
Research (NIHR SSCR)
•Social care practice with carers
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Belfast: Carers NI
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4. Concurrent mixed method
design
•Family carers
•Carers' workers
•Voluntary
organisations
•Commissioners
•National survey of
councils with social
services
responsibilities
Interviews
Survey
Documents
National
workforce
data
•Care plans
•Leaflets and
brochures
•Websites
6 December 2013
•Analysis of Carers
Workers in NMDS-SC
(Hussein &
Manthorpe, 2012)
Belfast: Carers NI
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5. Who we interviewed
8
23
17
38
Commissioners
6 December 2013
Voluntary organisations
Belfast: Carers NI
Carers workers
Family carers
5

6. SOME APPROACHES
Interviews and survey showed various ways local councils tried to
consult with carers
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Belfast: Carers NI
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7. Formal systems
•Forums
•Carers’ councils
•Increasingly been outsourced to
carers’ organisations to run
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Belfast: Carers NI
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8. “
I can't go to the [monthly] carers forum
[tomorrow], which I do try to do, and so do
our MPs and that's quite symbolic and
important ….If they [MPs] can't be
there, the chair, who is a carer, will read out her son [for whom she cares] is often with
her actually ….She will often read out the
apologies and the MPs will apologise.
Commissioner5
Sending out a message…
6 December 2013
Belfast: Carers NI
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”

9. “
…They made it so that we could afford to appoint
somebody for five hours a week, to run the Carers'
Council. And five hours a week doesn't do a
lot, um, and the person who is doing it, and her
manager feel that [the council] actually want 15
hours work for five hours money … But I do think
people are quite unrealistic about the voluntary
sector. I think they think we work on peanuts and
don't need actually funding to actually do the job.
But they want the job doing professionally
”
VOL09
Paying peanuts but wanting cashews?
6 December 2013
Belfast: Carers NI
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10. RECOGNISING
LIMITATIONS
Recognition that formal meetings and forums are not in themselves
enough and that other approaches are needed
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Belfast: Carers NI
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11. Not all carers recognise they are
caring
I [was] on an [information] stall
and the amount of people that
walked past and you said to
them, ‘Are you a carer?’ and
they said, ‘No, but I look after
so and so and so and so.
Because it was a relation they
just didn’t think of themselves
as a carer. It’s surprising and it’s
something you come across all
the time….They think a carer is
professional or someone who
gets paid or a stranger that
looks after someone’
Picture accompanying Daily
Telegraph article by Max
Pemberton in June 2009
(Family carer)
6 December 2013
Belfast: Carers NI
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12. Seldom heard or ‘hidden’
carers
• Carers from black and minority ethnic groups
• Young carers
• Lesbian, gay, bisexual and transgender carers
• Carers in other situations where they feel they
might be stigmatised
• Carers in paid employment who may find it
hard to attend daytime meetings
• Carers who are unable to attend meetings in
person
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Belfast: Carers NI
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13. “
…Part of it is just the general society stigma, but
another part of it is that parents often feel
responsible for their children and parents of
women and men who use substance misuse or
who use substances, often feel responsible for
that and guilty … This is one of the issues that
comes up invariably … And because they’re
feeling like that already, from the very
beginning, they are reluctant to even seek any
[support]
”
Worker11
Stigma
6 December 2013
Belfast: Carers NI
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14. Jargon is a barrier
‘And I've frequently done loads
of meetings like that, where
you just go in and sit in … I'm
just there to make sure that the
carer understands every time
that they…'cause they [other
professionals] do tend to use
too many words that are too
[jargon ridden] and you can't
actually, sometimes you have
to go, ‘Excuse me, what does
[abbreviation] mean, and some
of them don't even know what
it means, but they say them’
Photo from agency job advert!
(WORKER20)
6 December 2013
Belfast: Carers NI
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15. SOME IDEAS
Some suggestions based on participants’ experiences
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Belfast: Carers NI
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16. “ [Worker] went out and visited the carers'
groups that she could visit, she went and put
out publicity, she held her first Carers'
Council meeting, and …. they've elected a
chair, they've elected a vice chair, and she is
effectively now supporting them to develop
Vol09
Capacity building
6 December 2013
Belfast: Carers NI
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”

17. Piggybacking on external
events/publicity
•Carers Week and Carers Rights
Day
• Information stalls and publicity campaigns
•Using other media
• Local radio
• Use of social media (still comparatively
uncommon and not evaluated)
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Belfast: Carers NI
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18. “
We are keeping an eye on the pilot work that’s
going on down in [city] with [supermarket]
identifying carers … [Supermarket] … have
trained up their till operators to ask the question if
there are, say, two people going through
checkout and they say, you know, ‘Are you a carer
for this individual?’
”
COMMISSIONER07
Beyond the obvious…
6 December 2013
Belfast: Carers NI
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19. Carers’ registers
• 80% of survey respondents
reported they or another
organisation ran carers’
register in locality
• Registers used for
• Planning services
• Consultation with carers
• Access to ‘emergency card’
• Other symbolic benefits –
discounts in council leisure
centre
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Belfast: Carers NI
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20. Recognise there will be
some allies
Personal experience of caring
70
60
50
40
30
20
10
0
Worker
6 December 2013
Commissioner
Belfast: Carers NI
Voluntary organisation
20

21. A guiding principle?
Well, don't let me use the word[s] ‘their
needs are different’ because I think all
carers' needs are basically the same, it's
just that the way the needs are met is
different (WORKER22)
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Belfast: Carers NI
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22. Resources from Social Care Institute
for Excellence (www.scie.org.uk)
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23. Disclaimer
The preparation of this presentation
was made possible by a grant from the
National Institute for Health Research
(NIHR) School for Social Care Research
on social care practice with carers. The
views expressed in this presentation are
those of the authors and not
necessarily those of the NIHR School
for Social Care Research or the
Department of Health/NIHR
6 December 2013
Belfast: Carers NI
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24. Thanks to….
• Everyone who was interviewed or who
returned a survey
• Lizzy, Jenny, Mark, and Carolyn who helped
with interviewing
• Lizzy for help with data entry and coding
• Virtual Outsourcing, Laptop Confidential
and Voicescript who did the transcribing
• The Project Advisory Group and the Unit
Service User and Carer Advisory Group
• To SSCR for funding
• To you for listening!
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Belfast: Carers NI
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