Involving carers in planning services

USER AND CARER INVOLVEMENT - LESSONS

FROM RESEARCH AND PRACTICE

Jo Moriarty

Social Care Workforce Research Unit

Belfast: Carers NI 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


Talking about

•Research project funded by National Institute for Health Research School for Social Care Research (NIHR SSCR)

•Social care practice with carers

6 December 2013


Concurrent mixed method design

•Analysis of Carers Workers in NMDS-SC (Hussein & Manthorpe, 2012)

•Care plans•Leaflets and brochures

•Websites

•National survey of councils with social services responsibilities

•Family carers•Carers' workers•Voluntary organisations

•Commissioners

Interviews

Survey

National workforce

data

Documents

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Who we interviewed

817

38

23

Commissioners Voluntary organisationsCarers workers Family carers

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SOME APPROACHES

Interviews and survey showed various ways local councils tried to consult with carers

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Formal systems

•Forums•Carers’ councils•Increasingly been outsourced to carers’ organisations to run

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“

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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

“

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…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?

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RECOGNISING LIMITATIONS

Recognition that formal meetings and forums are not in themselves enough and that other approaches are

needed

6 December 2013


Not all carers recognise they are caringI [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’(Family carer)

6 December 2013

Picture accompanying Daily Telegraph article by Max Pemberton in June 2009


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

6 December 2013

“

”


…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


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’ (WORKER20)

6 December 2013

Photo from agency job advert!


SOME IDEASSome suggestions based on participants’ experiences

6 December 2013

“

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[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


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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“

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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


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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Recognise there will be some allies

Worker Commissioner Voluntary organisation0

10

20

30

40

50

60

70

Personal experience of caring

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A guiding principle?

6 December 2013 Belfast: Carers NI 21

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)


Resources from Social Care Institute for Excellence (www.scie.org.uk)

6 December 2013


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


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!6 December 2013

Involving carers in planning services

Healthcare

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