Part 3a - Engaging with people who use health and social care services

Part 3 -
Engaging with the people who use community care services
- experience and best practice

Introduction - Engaging with people

"It is often the most isolated and the least identifiable of users - the ones who are never heard - who have the sorts of experience which can be most valuable." ¹

This section looks at lessons from the literature, practical experience of working successfully with particular groups of people who use health and social care services, and the ways that best enable them to participate in shaping services.

"There is a tendency for professionals to divide the world up in ways that reflect the organisations in which they work". ²

'Client groups' are made up of people who may have nothing in common except the labels professionals use for them. People don't define themselves by the categories we put them into, they are individuals with their own needs and expectations.
For example, in providing services for 'older people' you are trying to include at least two generations.

Some ways of involving people become associated with a particular client group. There is a danger that their wider application is overlooked. For example, ways of working with people who do not communicate through speech could be shared across learning disability, physical disability, sensory impairment, mental health and dementia service areas.

There are ways of engaging with people that are better or worse suited to particular individuals and their particular circumstances, but the same broad principles of good practice apply to all.
Successful involvement depends upon using a range of approaches so that individuals with different needs and preferences can be included.

Engaging with older people

" Older users wish to contribute a wide range of experiences and insights. The challenge is to put them to the fullest possible use, not to restrict older people's contributions." ¹

"It is a mistake to lump together older people's views as the same. That's the clear message we received from our People's Panel research ²

Older people are the largest single group to use health and social care services. But 'older people' cover at least a 35 year age span, and include future users of services as well as those who will never need formal support.

Current and potential service users should be involved in developing services that are both acceptable to them and appropriate to their needs. This means involving people who have not yet reached retirement in planning the future shape of services. It also means supporting the activities of older people themselves to develop their own solutions to maintaining their independence and quality of life.

It is particularly important to include people from ethnic minority groups as the number of elders will increase considerably over the next twenty years.³ There is evidence, for example, that amongst Asian elders:

Two-thirds did not know what services were available to them
Those who were aware of services perceived them to be inaccessible or inappropriate
Many of those who had used services "felt that their needs were not being met and that the people providing the services had not been respectful of such things as hygiene, privacy, religion and diet."⁴

The challenges in engaging older people arise because:

Older people are a large and diverse group. The vast majority live independently or with informal support
Many of those receiving services do so on an individual basis in their own homes rather than collectively
One in five people over 75 are unable to leave the house without help
6% of the over 65s will have some form of cognitive disability⁵
Ageism and the role ascribed to older people in society does not encourage them to feel that their views are valued
Older people can have low expectations, both of their own health and well-being, and of services, and so may be undemanding and uncritical
They may be afraid of appearing ungrateful and of upsetting those on whom they feel dependent
Services are often provided in a way that reinforces the idea that older people can no longer manage their own lives
The protective instincts of staff and carers toward vulnerable individuals can further restrict older people's right to make choices and decisions⁶

Engaging more effectively with older people

Self-completion surveys can fail to include older people with visual impairment, arthritis (20.8% of over 65s in a local survey⁷reported difficulty in gripping and holding) or cognitive impairment. You will need to use other approaches to include them.
The timing, location and conduct of meetings needs to be planned with care. Frailty and fear of crime mean that some older people are reluctant to go out. Transport and escorts should be provided. (See Meetings)
Provide level space for wheelchairs and walking frames, a loop system and microphone amplification (one in three older people will have hearing difficulties), comfortable facilities with accessible toilets and adequate breaks, individual welcomes on arrival. Allow time for social contact as well as business.
Help the Aged engaged housebound people to participate in its conferences through professionals, and through publicity in the local press and parish magazines.
Interviews allow description of experience from which quality of life and of services can be gauged. Peer interviewing is particularly helpful in reducing the influence of wanting to 'protect' a younger interviewer, and the perception of a lack of common experience (See Peer interviewing). Similarly, peer monitoring and evaluation of community and residential services can produce a more honest response. (See Monitoring and Standard setting & Evaluation and Outcomes
Focus groups have been shown to be effective with older people. Smaller group size, perhaps 6 participants for the older elderly or those with disabilities, and sessions shorter, an hour or less rather than the more usual 90 minutes, are suggested. Someone to record non-verbal communication can be useful with older or disabled participants who verbalise less frequently.⁸(See Focus Group Discussions)
Group events such as Whole Systems Events allow a cross-section of older people who are not necessarily current service users to engage in a dialogue with providers about their own priorities and solutions to problems. (See Ways in which all key interested parties come together)
A Development Worker provides continuity, "a steady, continuing presence"⁹ when frailness or illness mean someone may only be able to participate intermittently, and can provide administrative support to independent groups. (See Development Workers)

Some examples of good practice in involving older people

See also the Fife User Panels

Wakefield health and social care agencies actively involved members of the Age Concern Service Users Action Forum in planning and consultative groups, but were aware that the voices of frail, housebound older people were unheard. The 'Talk-Back' Project teamed trained volunteer 'partners' with frail older people. Together they complete a diary of the user's views and needs, enabling systematic feed-back to service planners and providers.

An approach to engaging with people who receive services in their own homes was developed in Kirby.¹⁰
A project group of older people and professionals was set up. The team worked in pairs. They visited people in their own homes and in informal groups and clubs. The older person took the lead in conversations while the professional took notes. They asked people about their experiences of services and their quality of life. Review meetings were held to reflect on what had been learned and to assess the impact of policies and services (or the lack of them) on the lives of older people. The team considered what needed to change to improve their lives. The team prepared a report and made presentations to a wide range of agencies (including housing, leisure, transport, local traders, the local MP and British Gas!) An action plan was developed and the team continued, to oversee putting it into practice.

Two further innovative approaches to involving older people in their own homes have been reviewed.¹¹

HealthLINK is a postal network where members contribute their views and experience in written or audiotaped form via a freepost service, and get information and feedback through a newsletter. A survey about GP services suggested by members resulted in the production of a leaflet on making the most of GP consultations. Participants drew in others from their own networks.

Other areas have retained the skills and interest of people who can no longer attend meetings by sending papers by post, which can be read (or listened to) and considered when the individual feels able, and their telephoned or written/taped responses included.

A telephone discussion group provided a way of giving a voice to isolated people.
Members shared their experiences of service use, gained information and shared practical solutions to problems of daily living. Service managers joined the group once issues were identified, and advanced participants' views in service meetings.
" Meetings by telephone can offer the benefits of a group - society, stimulation and development of ideas - without the costs of disruption, pain or exposure to the gaze of others."¹¹

Both these methods may be particularly appropriate in rural areas where older people are isolated and travelling distances are an obstacle to participation. The research found that older people were motivated by a wish to improve the quality of life for others. People needed good explanation of the purpose of the groups, what was expected of participants, and what would happen to the information gathered.

Residents from homes in Manchester were recruited by external researchers and met together to identify what made a good home. Existing standards of good care were reviewed in the light of the concerns identified. A permanent panel to review quality standards emerged.¹²

Some Age Concern groups, such as Camden, support an advocacy scheme for older people in their own homes or in residential or nursing care.

A residential home is working in partnership with a local advocacy project to provide independent advocacy for residents with dementia. Two trained volunteers use activities, conversation and reminiscence to engage with residents, as individuals or in groups, during a half day a week. "..feedback from the volunteers has led to developments in practice, procedure and policy." The project did not have any additional funding.

Community Care 18-24 Nov.99

Some research findings on involving older people

A study asked 88 older people who received community care services how they would like their views on services to be obtained¹³

Findings included:

Older people favoured face-to-face interviews over other methods

Their top priority was that they wanted to be interviewed by senior managers. They believed that senior managers needed to hear first-hand experiences, and would have the influence to act (This finding was not repeated with younger service users)

Many disliked telephone interviews, but these were an option for some, so could supplement face interviews

Written self-completion surveys were widely criticised and disliked (although the Older Person Needs Assessment survey conducted in South Humberside in 1998 got a 79% response rate)

Carers liked group methods better than older people themselves. These could provide opportunities for a separate interview, which was not always possible at home

Focus groups mostly attracted people in the 65-79 age group, so would under-represent older service users if used as the sole method of obtaining views

Individual interviews proved better suited than focus groups for assessment of satisfaction

Women wanted to be offered the choice of a woman interviewer

Older people wanted to prepare, by knowing what they were going to be asked in advance

They wanted to be able to decline to discuss any topic without question

Feedback on how the information was used was considered important

Asian people preferred an own-language interview to translated written questions

Managers felt that the quality of information from a carefully selected small sample could match that from a questionnaire to larger numbers

Engaging with people with dementia

Linguistic ability deteriorates in people with dementia, but although challenging and time consuming, communication remains possible. A researcher worked with one individual over four and a half years. She found that even after the ability to use language was lost the individual recognised conversational turn-taking, indicated her recognition of personally relevant subjects and could request with sound that conversation be repeated¹⁴ Those who live and work with people with dementia are well aware that preferences can be expressed and observed in mood or behaviour.

Some guidelines for enabling communication ¹⁴

Use a calm environment without distractions
Allow sufficient time - to give full attention, to actively listen, to allow the person to understand what is being said and to respond. Allow long pauses. Processing information can take five times longer for someone with moderate dementia than for other elderly people
Establish eye contact and use touch where appropriate. Illustrate what you are saying with body language, and photographs and relevant items where possible
Use short, simple sentences
Listen for the meaning behind the words

Some research in progress on engaging with people with dementia

The Dementia Services Development Centre is continuing to explore the ways health, social care and voluntary sector workers consult with people with dementia about their views of services.

Approaches being evaluated include:

One to one interviews
Use of prompts such as pictures and objects
Discussion during activities such as music and singing, hand massage, personal care, walks and trips, food tasting
Storytelling and reminiscence
Group discussions
Observation and behaviour
Observing non-verbal interaction

To discuss:

Attitudes to services generally
Feelings on first coming into service
Food and mealtime routines
Activities and ways of spending time
Trips and outings
Personal care such as bathing and dressing
Other service users
Staff attitudes and behaviour
Being helped
Physical surroundings
Transport
Admission to hospital

By building on the skills and knowledge of staff and providing them with opportunities for reflection the researcher has found that staff develop a growing sense of meaning and their self-esteem increases.¹⁶ Training materials will be developed by the end of 2000.

References

Thornton P Tozer R 1995 Having a say in change - older people and community care Joseph Rowntree Foundation
Older People Have Their Say - Report on research using the People's Panel www.cabinet-office.gov.uk/servicefirst/
Alexander Z 1999 Study of Black, Asian and Ethnic Minority Issues Department of Health
Lindesay et al 1997 quoted in Alexander, as above
South Humber Health Authority estimate based on 1996 population estimate
Sheard D 1999 The empowerment and participation of service users in service evaluation and development -Study for Coventry Health Authority
South Humber Health Authority 1999 Assessing health and social needs of older people in South Humber
Quine S 1998 'Practical guidelines for organising and running focus groups with older people' Generations Review vol 8 no 4 Dec 98
Speaking Up for Our Age - Report from Help the Aged regional conferences 1999
Blunden R undated Terms of Engagement - Engaging older people in the development of community services King's Fund
Thornton P Tozer R 1995 Having a say in change - older people and community care Joseph Rowntree Foundation
Raynes N 1995 Standard Setting in Residential and Nursing Homes University of Huddersfield
Patmore, Qurreshi & Nicholas 'Tuning in to Feedback' Community care 24-30 June 1999 reporting on DoH funded study in progress being undertaken by Social Policy Research Unit University of York
Goldsmith M 1996 Hearing the Voice of People with Dementia - Opportunities and Obstacles Jessica Kingsley
Kate Allen Research Fellow Dementia Services Development Centre, University of Stirling in presentation at Mental Health for Older People- Needs and Services workshop Nuffield Institute 9.5.00 www.stir.ac.uk/dsdc/

Other resources

Barnett E 2000 Including the Person with Dementia in Designing and Delivering Care
Jessica Kingsley www.jkp.com

Carter T & Beresford P 2000 Age and change: Models of involvement for older people York Publishing

Henwood M et al 1998 Listening to Users of Domiciliary Care Services: Developing and Monitoring Quality Standards Community care Division The Nuffield Institute for Health Leeds
� The views of service users and carers were used to develop indicators against which the quality of home care could be judged.

Qureshi H et al 2000 Outcomes in social care practice: developing an outcome focus in care management and user surveys Social Policy Research Unit, University of York
� Summary available as Research Works bulletin www.york.ac.uk/inst/spru/pubs/research_works.htm

Qureshi H & Henwood M 2000 Older people's definitions of quality services York Publishing

Stevenson J 1999 Involving Older People in Health Developments Briefing Paper 4 King's Fund Rehabilitation Programme www.kingsfund.org.uk
� Clear and concise overview of 'user involvement', with general application beyond sectors title suggests. Good summary of 'Key Health Policy Developments'

Thornton P 2000 Older people speaking out: Developing opportunities for influence York Publishing

Thornton P & Tozer R 1994 Involving Older People in Community Care Planning: A Review of Initiatives Social Policy Research Unit university of York
� Describes voluntary sector, Community Health Council and community group initiatives, some run jointly with the statutory sector.

Tozer R &Thornton P 1995 A Meeting of Minds -older people as research advisors Social Policy Research Unit University of York
� Evaluation of using a group of older people to advise a research project.

Our Future Health -older people's priorities for health and social care, Health and Older People Group (HOPe) Help the Aged 2000
� Written by a project group of older people, some of whom (including a Bridlington based representative) were part of the Reference Group for the National Service Framework for Older People. "These are OUR standards."

Consulting Consumers in the NHS: services for elderly people with dementia living at home National Consumer Council 1990
� Chapter on: Measuring effectiveness: checklists, questionnaires and performance indicators.

Involving Older People - Good Practice Guidance Age Concern England 2000
� Written for Age Concern groups, but has sections on 'Involving Older People from Black and Minority Ethnic Groups', 'Involving Older Gay People', 'Involving Older People with Mental Health Problems' 'Involving Older People with Learning Difficulties'.

Speaking up for our age - pack to support development of Older People's Forums Help the Aged www.helptheaged.org.uk

Assessing health and social needs of older people in South Humber South Humber Health Authority 1999

Primary Care Groups and Older People Project Community Care Programme www.kingsfund.org.uk

Dementia Services Development Centre www.stir.ac.uk/dsdc/

JRF Findings series www.jrf.org.uk e.g. involving older people in community care planning

Better Government for Older People www.bettergovernmentforolderpeople.gov.uk

Older People Have Their Say- report on research using the People's Panel www.cabinet-office.gov.uk/servicefirst

Family Involvement in Homes Project, The Relatives & Residents Association 5 Tavistock Place London WC1H 9SN
Tel Julia Burton-Jones, development Officer 020 7692 4303
� Offers training and publications on running friends and relatives groups in nursing and residential homes.

Engaging with Carers

"Carers and service users should be regularly consulted about the quality and appropriateness of services available." ¹

The challenges in engaging with carers include:

Working in partnership with people who are the major providers of care, and recognising their expertise
Agreeing the values on which services are based -priorities of carers and service providers may differ
Separation of interests. Carers have traditionally represented those they support, but need to be able to represent their own interests and needs
Making contact with isolated individuals. Many carers are not known to services and do not belong to carer groups. Hull and the East Riding of Yorkshire are setting up a register of carers which will allow communication with a wider range of carers
Participation takes time and emotional energy. There needs to be adequate support in place
Finding times and places to engage with carers that fit into their routines
'Housebound' carers may have lost confidence and need support to speak up
Engaging with carer groups without diverting them from their own purposes - the group may be the only social opportunity a carer has, for example.

Reference

Arksey A Hepworth D & Qureshi H Carers' Needs and the Carers Act; An Evaluation of the Process and Outcomes of Assessment Social Policy Research Unit University of York
� A summary of this report is available as a Research Works bulletin www.york.ac.uk/inst/spru/pubs/research_works.htm

Other resources

Meethan K & Thompson C 1993 In their own homes: Incorporating carers' and users' views in care management Social Policy research Unit University of York

Engaging with women

Many women, especially older women and some of those from minority ethnic groups, have not had the opportunity to participate in public life, and need the confidence to use their skills. They may feel inhibited when participating in forums dominated by men. Women only groups can allow free expression and provide a supportive environment in which to develop confidence. Assertiveness training is beneficial. The majority of carers are women, and many will be older too.