IAGG July 20091

FROM MARGIN TO MAINSTREAM: CHALLENGES IN CONSIDERING THE VIEWS OF ALL OLDER PEOPLE

IN THE EVALUATION OF THE NATIONAL SERVICE FRAMEWORK FOR OLDER PEOPLE IN ENGLAND

Jo Moriarty (KCL)

Jill Manthorpe (KCL)

Michelle Cornes (KCL)

Roger Clough (Independent researcher)

Les Bright (Independent consultant)

Steve Iliffe (UCL)

Older People Researching Social Issues (OPRSI)

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Outline

Context Methods

Challenges in recruiting LGBT participants Results

Shared and unique issues Discussion

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Background

Healthcare Commission, Commission for Social Care Inspection and Audit Commission undertook joint inspections of services for older people 2005-6

Aimed to measure progress in implementing National Service Framework for Older People (NSFOP)

Produced report: Living Well in Later Life. A Review of Progress against the National Service Framework for Older People (2006)

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Themes of the review

Tackling ageism and promoting equality Involving older people Designing and delivering services around

older people Living well in later life Leading organisations through change

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Role of research team

Research team asked to obtain the views of: Older people (defined as those aged 50

and over) Their caregivers Local voluntary and community sector

(VCS) Views to be used in informing inspections

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Methods (1)

Rapid appraisal approach Listening events

Large public events advertised locally

Focus groups Shared interest or

characteristic Individual interviews

Face to face or telephone Postal survey

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Methods (2)

Multidisciplinary Older People

Researching Social Issues (OPRSI) Collective of older

people actively involved in research (Clough et al. 2006)

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What was new

National Service Framework referred to age discrimination and racial discrimination Silent in relation to sexuality (Clover 2006)

Review was first time that English regulatory bodies had made an explicit attempt to tackle a wider span of diversity issues Context of heteronormativity in gerontology (Cronin,

2004)

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Exemplified in…….

Discrimination can have profound and far reaching consequences on the lives of older people. They may experience discrimination and disadvantage for a variety of reasons apart from their age. It may be on grounds of faith or sexual orientation, because they are black or disabled, or combinations of these (Living Well in Later Life, p24)

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Results

1839 people took part in listening events, focus groups or interviews More diverse ethnically Older

4170 people returned questionnaires Less ethnically diverse Younger

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LGBT participants

Specifically recruited via: Older gay and lesbian group

Six individual telephone interviews Specialist centre for LGBT people

Two focus groups and one interview (15 participants) and discussion with staff

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Discrimination

HIV+ status affecting ability to find NHS dentist

[Rights worker] Similarly the guys I’ve spoken to have experienced homophobia in terms of if they’re homosexual they must have AIDS and therefore, you know, skull and crossbones, stay away from me

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Some improvements noted

Some noted change in attitudes Younger doctors are more understanding My partner’s pre transsexual and my GP is very good My GP came out and visited me ‘as a bereaved person’ and

I was treated ‘the same as heterosexuals’

But on hospital ward treatment was not good but not because of

sexuality – everyone was receiving same poor level of care!

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Intersectionality

Looks at inter relationships of gender, class, race and ethnicity and other social divisions One man described how he was sexually assaulted

and robbed of his disability living allowance (DLA) but did not feel he could complain to police

People take advantage of you because they know you are on DLA

One transgendered person felt being a mental health service user was more stigmatising

I have problems with people’s definitions of me but it’s more of a stigma to have mental health problems

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Integrating LGBT issues

Two examples where ‘blanket’ approaches fail to take account of whether LGBT people have different needs, wants and preferences: Social networks and leisure Caregivers

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Social networks and leisure

Increasing recognition of role played by social networks and leisure in maintaining wellbeing Us older ones don’t like going to pubs and

clubs and we want something else to do with our (time), you know, we want to socialise in a different way

[Our centre] is not so much body conscious – there’s no backstabbing’

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Recognition of caregivers’ needs

Rights agenda for caregivers fails to recognise inequalities among different carers (Manthorpe & Price, 2006) Pre civil partnership legislation

[I] was told [my partner] needed residential care, but this would have meant having to fund the care by selling our house and home and business because of the lack of clarity around the status of gay and lesbian couples. I wanted her home anyway.

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Discussion 1

Need to recognise that some issues will be common to almost all older people Transport & mobility problems Fear of crime Reliable and accessible services

Some issues will be different Role of specialist versus generic provision?

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Discussion 2

Need to acknowledge difficulties in recruitment in research studies Extent to which older LGBT people self-identify or

wish to be identified (Langley, 2001) Overcoming mistrust of authorities

One man described being sent to a mental health unit before the Sexual Offences Act 1967

‘[Mental health units are] terrible. They drag you in and inject you. Nurses can treat you bad’.

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Discussion 3

Extent to which professional training addresses homophobia & heterosexism and equips professionals with skills and confidence to address them (Hardman, 1997; Langley 2001)

Applies to regulators/inspectors And to researchers as well !