Service Users. and Carers’ Needs and Aspirations
Profile of Mid Wales’ Population
Introduction
This reviewattempts to provide an overview of research, policy, guidance and good practicewhich defines service users’ requirements with a view to designing a model of rural care delivery which puts service users at its centre.
The project seeks to investigate current research, policy and practice to underpin reconfiguration of community-based, health and social care service provision in rural Mid Wales
Background
. Demographically, Older People represent a significant and expanding group in the Mid Wales population and thus are likely to make increasing demands on the health and social services of the region. The Steering Group has therefore taken the decision to prioritise the requirements of older people, adults with learning disabilities and their carers as key service user groups for the purpose of this project
Existing Mechanisms for Service User Engagement
All national policy documents have been subject to consultation processes with stakeholders including service users and organisations who represent service users.
Service users actively contribute to local partnerships and their views sought in relation to county-wide strategies, such as Health, Social Care & Well-being Partnerships.
Regionally, each Health, Social Care & Wellbeing Partnership, which include Local Authorities, Local Health Boards and other relevant service user organisations have worked in partnership to produce county-wide Health & Social Care and Wellbeing Strategies to action national policies and guidance:
The Powys Health, Social Care and Well-BeingStrategy and Action Plan
Ceredigion Health,
Better Health: Better Gwynedd
The Ceredigion Health, Social Care and Well-Being Strategy
1. What Older People Want
1.1.Policy Documents:
The Older People’s Strategy for WalesJanuary 2003
The policy document highlighted a number of objectives, of which the following have a high relevance to service users in remodelling health and social service delivery in rural areas.
To ensure that older people are able to participate fully as citizens in every aspect of society.
To strengthen and promote participation in community activities and volunteering for and by older people.
To develop schemes to secure improved mobility and to integrate transport services for older people
To combat poverty and poor housing among older people and promote greater uptake of benefits
To promote health promotion and preventive action for older people, including pre=retirement action to improve health and decrease dependency in old age.
To promote health and social care policies which enable older people to live at home with appropriate help as long as possible.
The National objectives are supported in each county by the individual county-based Strategies and Action Plans for Older People and the Health & Wellbeing Strategy Plans.
National Service Framework for Older People in Wales
The views of older people in Wales informed the development of the Strategy for Older People in Wales and the National Service Framework for Older People is a direct result of this strategy document and Designed for Life and Fulfilled Lives policy document.
The National Service Framework, a key document in the design and implementation of health and social care services for older people in Wales, outlined the following standards as crucial to meeting older people’s needs:
1. Discrimination - Health and social care services areprovided regardless of age, on the basis of clinical and social need. Age is not used in eligibility criteria or policies to restrict access to and receipt of available services.
The NSF states that “ Older People have a fundamental right to be involved and able to participate in decision-making processes that affect their lives and choices”
2. Person-Centred Care - Health and Social Care Services treat people as individuals and enable them to make choices about their own care. This is achieved through the unified assessment process, integrated commissioning arrangements, the integrated provision of services ad appropriate personal and professional behaviour of staff.
3. Promotion of health and wellbeing in older age - The Physical and emotional health and wellbeing of people over 50 is promoted through strong partnerships, with the aim of extending healthy life expectancy and quality of life.
4. Challenging Dependency - A range of enabling, community based services is available to intervene promptly and effectively when older people’s independence is threatened by health or social care needs, with the aim of challenging dependency and maximising wellbeing and autonomy.
5. Intermediate Care is established as a mainstream integrated system of health and social care which:
- Enables older people to maintain their health, independence and home life;
- Promptly identifies ad responds to older people’s health and social care needs, helping to avoid crisis management and unnecessary hospital or care home admission;
- Enables timely discharge or transfer from acute hospital settings to more appropriate care settings which promote effective rehabilitation and a return to independence.
6. Hospital Care - When admission to hospital is necessary for older people, the care they receive is co-ordinated, efficient and effective in meeting their clinical and non-clinical needs.
7. Stroke - The NHS, working in partnership with other agencies where appropriate, take action to prevent strokes, and to ensure that those who do suffer a stroke have access to diagnostic services, are treated appropriately by a specialist stroke service, and subsequently, with their carers, participate in a multi-disciplinary programme of secondary prevention and rehabilitation and appropriate longer term care.
8, Falls and Fractures - The NHS, working in partnership with Local Authorities and other stakeholders, takes action to prevent falls, osteoporosis, fractures and other resulting injuries and to maintain well being in their populations of older people. Older people who have fallen receive effective treatment and rehabilitation and, with their carers, receive advice on prevention through integration of falls and fracture services.
9. Mental Health in Older People– Older people who have a high risk of developing mental heatlh problems and others with related diagnosis have access to primary prevention and integrated services to ensure timely and appropriate assessment, diagnosis, treatment and support for them and their carers.
1.2. National Research
A large body of research work exists relating to this important group of service users. However, whatever the focus of the research or policy imperative, there are recurrent themes identified which contribute to a better quality of independent life for older people and these findings reappear, whether the research has been undertaken directly with service users or amongst health and social care professionals.
The Table below shows the common themes which appear in the results of four differently focussed papers.
Age Concern – Good Quality of Life for Older People 8 / Wales Centre for Health, Profile of Rural Health in Wales9 / Fresh Fields – Rural Social Care, research, policy and practise agendas10 / Wales Audit CommissionOlder People:Independence and Well Being11
Having good social relationships with family, friends and neighbours / Transport / Transport
Participating in social and voluntary activities and individual interests / Education / Transport
Isolation
Developing social facilities in Rural Communities. / Transport
Learning and Leisure
Information
Good Health and functional ability / Access to Services
Education / Access to Services
Integrated Services / Integration of a wide range of services
Information
Living in a good home and neighbourhood / Housing / Housing, Planning
Community Health & Safety
Positive Outlook and psychological well-being / Access to Services
Education / Access to Services
Integrated Services / Integration of a wide range of services
Adequate income / Low Income
Rural Deprivation / Rural Deprivation
Maintaining independence and control over ones life / Information
Having a voice in all decisions related to
their concerns, both in terms of the services that they receive as individuals
.
1.3. Regional Strategy and Research
Local Authorities in Mid Wales, working in partnership with Health and other relevant organisations,have produced their own county-based strategies to support the all-Wales Older Peoples’ Strategy.
Living Life to the Full – A Strategy for Good Ageing in Gwynedd
The Ceredigion Strategy for Older People
As part of the local research, visits were made to Older People’s fora in Ceredigion, organised as part of Ceredigion Older People’s Partnership’s activities. These fora attract a broad range of Ceredigion’s older residents
Feedback from the groups highlighted the following issues as important to maintaining health, independence and social inclusion.
Transportation – integrated transport services, routes and how they link to access to services.
Housing – flexible developments within communities, private ownership of supported housing complexes is a point of concern in respect of future rental levels.
Development of Community-based services and activities – General health village surgeries, inter-generational activities with local schools to foster empathy, developing leisure activities, learning activities and luncheon clubs.
Family networks
– under stress because of geography and the fact more females, traditionally seen as the carers within the family are now in paid employment.
Access to Services – With Post offices closing and/or relocating to supermarkets which are not necessarily easily to access as they tend to be on the outskirts of towns.Transport to GPs surgeries and times of surgeries are difficult for older service users and this is important as there is a relunctance to request home visiting from GPs.
Current Service Provision - One stop shop for information about health and social care services is needed. Services restructured to meet individual needs – “Not about people but about costs”. Unified Assessment is not working. Lots of People to deliver limited services
Isolation–Particularly if lacking mobility and exacerbated by lack of regular public transport and low incomes. Safety and mental health issues.
2. Learning Disabilities
2.1.Policy Documents:
Valuing People 2001
Equality 2005
Policy in this area seeks to extend equal opportunities for those with learning difficulties in terms of housing, employment and accessing health & social care services.
2.1. Research
Aswith the older people group of service users, current research shows an increased demand for more control over their lives and supported independence, where possible, in their own homes.
A challenge of effective communication with service users with varying degrees of learning disabilities has been identified asabarrier to ascertaining service users requirements, together with and promoting control and increased independence. Perhaps unsurprisingly, Young and Chesson’s 16investigations identified a gap between government policy of inclusion for everyone, and the realities of frontline health care practice where involvement was not achieved for some userswith severe/profound disabilities. The study points to implications for increased resources, education and training if meaningful users involvement is to become established for individuals with learning difficulties.
A recent survey undertaken by Community Care Magazine12as part of their campaign A Life like Any Other, and based on 1200 questionnaire responses,
In answer to the question ‘Whatcould make your life better?’ 52% said more support, 34% said a job and 13% said transport. Comments included “We don’t have staff to do days out with me”, “I wish I could go out at weekends.”, “My hours have been cut and now I can hardly function” “I need more support and better support” “I don’t like being told I can’t buy things when I want to” and “I don’t need support at home but they make decisions for me”
From comments in the survey, it was apparent that respondents wanted to feel more in control of their lives and to have additional support to think through options and bring about changes.
Employment
An important issue relating to increased independence was the opportunity for employment. 22% of respondents had some form of employment, mostly part-time which is higher than the 10% rate quoted by the Department for Work & Pensions but 66% of those without work indicated that they would like to have a paid job. Comments included “People don’t want to employ you when you’re a bid slow even though the law says they should” and “I do lots of voluntary work but I would like a paid job”.
Other work undertaken by the Department of Work & Pensions Employment Working Group14 focussed on employment opportunities for those with learning disabilities concluded:
The responsibility to ensure that all people can enter the workforce is a community-based responsibility – not one simply for health and social care.
Effective “person-centred planning” is critical as it ensures services fit the needs of the individual rather than fitting people into what is available.
Recognising the importance of employment whilst still at school is critical. Ensuring effective individualised transitional planning ….could have a dramatic and long lasting effect on the life experiences of this group.
People with learning disabilities may only be able to work a few hours per week. The DWP should investigate, subject to resources, how they would have both the opportunity to access the support to enable them to do this and to benefit financially from it.
To investigate how to meet the needs of those working 5 – 15 hours.
In order to deliver real change co-operation is critical. Government……needs to develop……effective mechanisms to bring together all those with an interest of promoting employment for this group at regional and local levels.
Whilst current services and provisions do not intentionally penalise this group more care needs to be taken to ensure they do not inadvertently act as a barrier
Consider pooled, and preferably ring-fenced budgets
The desirability for a clear ministerial lead on the issue.
Housing
65% of Community Care respondents also indicated their wish to have a house or flat of their own. Comments included: If I had my own flat it would be freedom. At the moment I’m not in control of my life. “I never had any choice before…now I like having my own space”
Relationships and Isolation
Relationships were also important to respondents with a high 44% indicating that they were in a relationship though the majority of respondents indicated they were not with somebody said that they were isolated and lonely.
Another worrying statistic is the16% of respondents reported some form of bullying during the last year. Comments included “Kids throw stones at my front door” and “ People keep banging on my door”
Health services – The Users View
Parker, Samuels, Hassiotis Lynggaard & Hall17 investigated Service Users’with learning disabilities views on contrasting psychiatric health service provision and found:
•People who used mainstream wards found it quite frightening to begin with and things were not always explained very well. People who used the local ward were less worried when admitted and settled in quicker.
•People who used general psychiatric wards did not always feel that their medication was explained to them properly. People who used the local ward still had some concerns about this but generally felt that medication was explained properly.
•Most people said that they got on well with the other people in both types of ward and they felt that social contact with others was one of the most positive things about their admission.
•People using both types of ward liked to have one nurse on the ward who they could go to if anything needed to be sorted out.
3 Other relevant research.
Apiece of consultative work carried out in Yorkshire & Humberside entitled Planning our Future: What young disabled people told us about moving in Adulthood13 highlighted very similar aspirations in the younger age range, namely, increased control over their lives, employment, access to services and relationships:
Increased Control
Ordinary things – the same as any other young person
To be married and have my own house
To try out new things – being a DJ, working in an office, being in a film, learning to swim an playing football.
Help People and make new friends
To have lots of fun.
Access to Services:
To carry on learning
To go to residential college
Having information about choices and opportunities in a form I can understand.
People and Professionals being more open minded and treat young disabled people as individuals
Help and support with planning
For people to listen to me and give me time
People need to slow down and help me plan at my rate
I need time to plan things well
Start to plan as early as possible
To have open opportunities where no one is limiting the result
Knowing who I can talk to
People and Professionals being more open minded and treat young disabled people as individuals