The Scottish Government

« Previous | Contents | Next »

Listen

1. Executive summary

Objective

In September 2004, Care 21commissioned OPM^¨ to undertake research into the needs of unpaid carers over the next 10 years, as part of its drive to provide more responsive services. A significant part of this exercise involved talking to carers, to establish their views on current levels of support and future needs. Care 21 also commissioned a separate piece of research into the future needs of carers with mental health problems and learning difficulties. The findings of both of these research exercises are synthesized and presented here.

Overall approach

We adopted a qualitative methodology for this research, gathering the views of specific groups of carers in urban and rural locations. In total, we spoke to 151 unpaid carers, through ten focus groups with a total of 79 participants, three mini-groups with a total of 13 participants and 59 in-depth individual interviews. Carers' experiences varied widely, in terms of who they cared for, why care was required, the time they spent caring, the tasks they carried out, the duration of caring and their background, age and general health.

Key findings

Co-ordination of care services

• There were mixed experiences of how successful statutory services were in meeting the needs of carers; successful services appeared to depend heavily on the personal relationships and rapport between professional staff (including doctors, social workers) and the carers themselves. Experiences also varied by location.
• Elderly and black and minority ethnic ( BME) carers tended to have little contact with a wide range of services, because care was perceived as a duty.
• GPs act as the first point of contact for many carers, and therefore their proficiency in connecting the carer with wider support services is crucial. Carers reported that co-ordination of services was poor where it concerned acquiring equipment and alterations / adaptations in the home. The co-ordination of services during the transition from caring for a child to caring for an adult was perceived as poor.
• Carers perceived a lack of co-ordination between the management of health service and local authority social work services budgets.
• Mental health was seen as not being taken seriously enough by the medical profession. Carers with mental health problems and learning difficulties had difficulty articulating their needs.
• There was universally high praise for the work of the voluntary sector, which tended to offer support through caring support groups, information provision, advice on legal matters and rights, practical support in daily life and befriending schemes.

Provision of information

• Carers had widely differing opinions about the provision of information.
• Carers could not access information from any central point, such as GPs. Many discovered information by chance or through word-of-mouth.
• Carers found it difficult to access information on benefits.
• Young carers needed conditions and situations to be carefully explained.
• Information provision is not a one-way process. Carers called for recognition as equal partners.
• In some cases, medical confidentiality issues conflicted with the ability to care.

Effectiveness of policies to support carers

• Overall, carers were dissatisfied with the level of support and recognition they received from the government.
• Depending on their age, carers had different perceptions of the effectiveness of policies to support them. Elderly carers felt there was little consideration for their situation, particularly once they reached pensioner status. Young carers needed tailor made support, offering the opportunity for breaks from caring where they had chosen to care, and recognition that they are young people first and carers second, within a family setting.
• Carers with mental health problems and learning difficulties had complex needs, and services were not tailored around identifying these carers and supporting their needs.
• The financial security of many carers was felt by many to be at risk, in particular when they had cared for most of their employable age.
• Carers felt they did not receive adequate training to fulfil caring tasks safely.
• Respite care provision was not always dependable, suitable and adequate.
• Carers in rural areas felt little attention was given to accessibility of services, such as transport.
• Those caring for people with less 'visible' conditions, such as depression or alcoholism, felt very unsupported by the system.
• Carers were not supported in practical ways, for example help around the home and with fuel bills.

Employer-based support for carers

• The vast majority of participants in the study were women. Many of them worked part time and, in particular, in traditionally low paid occupations in which women tend to be overrepresented.
• Employment and career trajectories were often shaped by caring responsibilities, or decisions were made by carers to stay in a particular job because the organisation of work fitted into the rhythms of caring and family life.
• Male participants who shared the caring responsibility with their partners tended to work full time. However, when they had sole responsibility, balancing full time work and care was impossible.
• The high cost of childminders cancelled out the financial advantage of working for parents who had children with special care needs.
• Only a minority of employers in the study seemed to be supportive of carers, and most of this support was informal, on the basis of goodwill, where the employee was a friend of the employer or a good working relationship had developed over a number of years.
• Many carers emphasised that work was an important way of enhancing their overall wellbeing. Working was perceived as a particularly life-enhancing experience for carers with mental health problems and learning difficulties, and they wanted to be better supported to find suitable employment.

Education

• The issue of education only affected young carers in the study. The impact of caring manifested itself in absences from school in order to fulfil responsibilities, the inability to develop close relationships with school peers because of caring commitments and embarrassment, and the inability to focus on schoolwork because of preoccupation with problems at home.
• Some schools were very supportive of young carers, although some young carers had had their trust broken by school staff and other professionals.
• Young carers' future career plans were often affected by continuing caring responsibilities.

Carers' health: Psychological and emotional support

• A common concern was the lack of support to help carers deal with the psychological and emotional demands of caring.
• Carers often expressed feeling isolated and depressed, and the lack of counselling services was a common experience.
• This lack of emotional support services was seen as linked to the invisibility of carers; that is, services tend to focus on the person being cared for, leaving carers out of the equation.
• Carers needed counselling or independent services, on an individual basis as well as family counselling, to relieve them of some of the burden of caring.
• Voluntary organisations and carer support groups were seen as important in both urban and rural areas, providing much-needed support.
• The lack of provision meant that carers had to establish their own psychological support mechanisms, by informally getting together with other carers.
• A feature of counselling and psychological support services was the lack of BME participation in mainstream groups, and the particular isolation of young BME carers.
• Carers with mental health problems experienced the stigma associated with mental health issues, and felt particularly isolated because of unsympathetic statutory services and the lack of people to talk to outside the mental health community.

Contact with care professionals

• Overall experiences and perceptions of social workers were negative. It is not a finding of this reseach that these perceptions were negative relative to other care professionals as a comparison of the perceived roles and responsibilities of different care professionals, and their effectiveness in providing support was not a focus of the research.
• GPs were seen by many carers as key, as the first point of contact.
• Social workers were generally seen as overworked, untrustworthy, unprofessional and lacking in knowledge and empathy of carers' situations, though some good experiences were cited.
• There was a strong perception that social work departments are under-resourced and under-staffed.
• Positive experiences with social workers followed from a long-term relationship between carer and social worker.
• Carers' Assessments were seen as not working, not taken seriously and offering empty promises.
• Social workers were perceived as able to fulfil an important role in information provision.

Priorities for carers over the next 10 years

We asked carers about how they see the future over the next 1o years, and what they would like to see inplace to support carers. Most carers found it difficult to think about the future, first because they felt that the current level of support was not satisfactory, and secondly because thinking about the future was daunting - that many carers feared for their own health, and therefore their continued ability to provide care.

Within this context, carers expressed the view that the concerns and difficulties they had currently would multiply and become more acute as they became older. However, they identified a number of priorities for enhancing access to support services, as well as the delivery of support services. The following are key themes which emerged from an analysis of what they told us. These are set out below, are are not in any order of priority:

1. Recognition of carers
The role of carers should be properly recognised. For some this meams caring being regarded as an occupation and supported accordingly by the Government, both financially and other support. Others expected the same rights and access to support that paid care staff receive, such as free health checks, inoculations, health and safety training. Carers expected to be treated as equal partners in the caring situation.

2. Transformation of care models and mainstreaming
Mainstream support services need to ensure equality of service provision and the cultural appropriateness of provision by making BME communities central to the planning, promotion and delivery of care support services.

3. Funding for voluntary and community organisations
Carers saw a need for voluntary agencies to have more secure funding to enable them to continue playing an important advocacy role on behalf of carers, thus helping carers to identify and access services, as well as to provide essential emotional and practical support.

4. Care breaks and other support services
Access to respite and short breaks, and the qualityof these services when accesed was perceived by most to be very poor. More support needs to be made available to assist carers in the next ten years, including care breaks, outings for the people they care for, and assistance in the home customised to the needs of the whole family rather than determined by statutory agencies. Respite care should make provision for people of different ages and with different conditions.

5. Future planning for carers of children
More effective forward planning for the care needs of children with disabilities is needed, so that parents know what will become available from the outset, rather than being faced with a situation where there is nothing in place to enable them to cope with the transition from caring for a child to caring for a young adult.

6. Targeting of information
Information needs to be targeted more effectively at all groups of carers and the wider public, through schools, community centres, doctors' surgeries, churches, mosques, local radio and the ethnic press; in various community languages; and through better co-ordination between carers' organisations and statutory and voluntary agencies.

7. Counselling
Carers need more counselling services, on an individual basis or as families, to help children as well as parents cope with the demands of caring.

8. Benefit entitlements
Carers experienced the benefits system as complicated. Bureaucratic obstacles to carers claiming financial assistance need to be removed, and carers need more assistance with form filling and transparent advice on benefit entitlements.

9. Bilingual workers
Services should employ more bilingual workers, to provide the necessary support to BME communities, either in their own homes or in community-based establishments.

10. Support for elderly carers
Elderly carers need more support in the home to enable them to continue in their caring role if their own health deteriorates, to prevent the person they are caring for from having to go into a residential establishment.

11. Support for young carers
Young carers need more support and motivation, in the form of informal breaks and carers' projects and wider recognition of their contribution.

12. Support for carers with mental health problems and learning difficulties
Carers with complex needs need more support to help them access services in a fair way. There is also a need to continue to target the prejudices of the rest of society and perceptions of mental health problems.

13. Assistance with fuel bills and other practical support for carers
All carers, not just the elderly, need assistance with fuel bills and other practical support, since caring often means being in the home all day with the person being cared for.

14. Island and rural carers
Carers who do not live on the mainland or who live in rural areas need more support services.

15. Consultation and partnership with carers
Consultation should take place with carers who are actually doing the work, not carers' organisations, because a limited number of carers actually engage with these organisations due to a lack of knowledge.

« Previous | Contents | Next »