Implementing the Carers (Equal Opportunities) Act 2004
Assessment of carers - Outcome-focused assessments
- Social care policy is increasingly focusing on outcomes for those in receipt of services rather than on inputs and processes.
- Progress towards person-centred, outcomes-focused policy and practice is patchy.
- Being acknowledged and listened to is very important to carers and can be an outcome in itself. (See chapter 2 of the Listening to carers video)
- Progress on carrying out carer assessments is slow, and few separate carer assessments are carried out (12,29).
- Development work is needed to embed the outcomes focus into practice.
- Provide staff training on outcomes-focused work, with the inclusion of carers as trainers.
- Give carers information about the assessment process, ensuring that they are aware when an assessment is taking place.
- Give carers a list of things to think about (i.e. a self-assessment component) before a face-to-face meeting.
- Use a partnership approach to carers' assessment, allowing carers to identify their own desired outcomes.
- Use open questions and avoid a tick box approach.
- Ensure that carers are made aware of any possible charges before services are arranged.
- Ensure that carers have an opportunity to give feedback on the assessment process.
- Encourage flexibility and innovation in identifying services to meet carers' needs. (See Margaret's garden and the example of help with cleaning in the Listening to carers video)
- Use an appropriate, outcomes-focused assessment tool.
- Ensure that carers are offered time to talk away from the cared-for person.
- If necessary, arrange for the carer and the person they care for to be assessed by different people.
- Ensure that the carers of those who refuse services are still offered assessment.
A practitioner's guide to carers' assessments (8) emphasises that:
- The most important element of the content of the carer's assessment will be the focus on what the carer wants to happen (the outcome).
- The guide outlines the necessary elements of the assessment (pp16-22), including the need to consider the carer's education, training, employment and leisure needs.
- Ensure that there is a review process for carers' assessments.
- Agree a date for the review at the time of assessment. Practitioner's guidance (8) suggests that a review should take place three months after a new care package is initiated and every 6-12 months thereafter.
- Identify triggers for calling an unscheduled review.
- Don't make any changes to services without first carrying out a review.
As part of the government's agenda for modernising health and social care, a raft of legislation and policy initiatives have focused on improving the quality and consistency of social care and promoting independence, control and choice for service users themselves. Modernising social services (30) emphasises the need to focus on 'the quality of services experienced by, and the outcomes achieved for, individuals and their carers and families'. Outcomes have been defined as the impacts, effects or end results of services on a person's life (31).
The Department of Health's Green Paper, Independence, well-being and choice (28) and subsequent White Paper, Our health, our care, our say (56), are set around seven key outcomes identified by people who use services:
- improved health
- improved quality of life
- making a positive contribution
- exercise of choice and control
- freedom from discrimination or harassment
- economic well-being
- personal dignity.
The Commission for Social Care Inspection (CSCI) has incorporated these into their new assessment framework, A new outcomes framework for performance assessment of adult social care (PDF file).
More specific to carers, Nicholas (31) provides a framework, which is adopted in 'A practitioner's guide to carers' assessments' (8), for the evaluation of outcomes for carers. The framework comprises four dimensions:
- quality of life for the person for whom they care
- quality of life for the carer
- managing the caring role
- service process outcomes
A carer's assessment should be focused on what the carer identifies as the best possible outcome. It must focus on the outcomes the carer would want to see to help them in their caring role and maintain their health and well-being (8).
For many carers, flexible, client-centred services are essential to the sustainability of the caring role. Independence, well-being and choice (28) stresses the need to prevent problems as well as support those with high level needs for care:
In future, greater focus should be placed on preventative services through the wider well-being agenda and through better targeted, early interventions that prevent or defer the need for more costly intensive support. Current eligibility criteria allow for early intervention and support. More use of universal services could help people remain better integrated in their communities, prevent social isolation and maintain independence. This will allow social care to play its specialist and essential role in supporting those with specific needs that cannot be met in this way (28).
The White Paper, Our health, our care, our say reinforces this message:
There is also a growing evidence base showing that preventative measures involving a range of local authority services, such as housing, transport, leisure and community safety, in addition to social care, can achieve significant improvements in well-being.
Carers who have time for themselves and flexible services (for example, aromatherapy for relaxation or driving lessons to improve mobility and community access) are more likely to be able to continue as carers. Carers should be offered the same advice and support as care workers in order to protect their own health, for example, with regard to lifting and handling. In the long term, support for carers is likely to save money on costly care packages and residential care.
Previous guidance advocates innovation, stating:
Services for carers are not defined. Any outcome valued by the carer may be a legitimate use of council resources if it genuinely will support the carer in their caring role or help them maintain their own health and well-being (8).
A number of programmes (32,33,34) have supported the development of outcomes-focused practice. These complement the influential work of service-user organisations themselves (35,36) on the processes and outcomes that people want and value.
The work carried out by the Social Policy Research Unit (SPRU) at York University has led to the development of the substantial Outcomes into practice resource pack for managers and trainers (37). Since completion of the SPRU programme, the members of the Outcomes into Practice Network have continued to develop their approaches, providing some examples of current and emerging practice. SPRU was commissioned by SCIE to carry out a knowledge review of the progress on outcomes-focused services for older people. The review shows that progress towards person-centred, outcomes-focused policy and practice is patchy and that agencies are at different stages in their implementation. A lot of development work is therefore required to embed this approach into mainstream practice.
Research and policy shows that progress on carrying out carers' assessments has been slow (12) and that, where they have been carried out, this is often due to well-informed carers or proactive workers (38) rather than structure in policy and procedure. The Audit Commission (12) found that, where local authorities had returned figures on carers' assessments, they did not correspond with the perceptions of service users or case records.
As the Carers' Grant is largely used to provide breaks for carers, some local authorities have tried to find increased assessor resources to facilitate carers' assessments. Without increased resources, it may be difficult for practitioners to meet targets for carrying out assessments. According to the Audit Commission report (12), social workers with existing heavy caseloads did not see themselves as having time to carry out carers' assessments, and carers were angry about the attitudes of social workers towards them. Some local authorities have delegated their responsibility to carry out carers assessments to local voluntary sector organisations. It is clear, however, that the local authority has a statutory duty to assess and make a decision about service provision: “it is not enough for the local authority to simply check, on a complete or partial basis, the outcomes of another organisation's assessments” (REF combined Policy Guidance for the 2000 and 2004 Acts para 45)
Nicholas (31) states that, to implement outcomes-focused carer assessment, the following are required:
- culture shift
- training and support for practitioners
- additional time to carry out and follow up outcomes-focused carer assessment
- collaboration with stakeholders
- opportunities for reflection.
Clearly this presents a significant challenge to existing services that are currently working to full capacity. Bearing in mind the consequences of not supporting carers, the measures above should be key priorities for local authorities.
The use of outcomes-focused assessment tools has led to more positive outcomes for both service users and practitioners. Guberman et al (15) carried out an evaluation of the impact of carers' assessment tools in four different countries, which 'aimed at promoting partnership with carers and encouraging greater recognition of the complexities of caregiving and its impact on all aspects of life'.
Models from the UK included the framework for outcomes-focused carer assessment developed by Nicholas (39), which incorporates the tool developed by Nolan et al (40). The latter measures the situation of the carer via three indices for an assessment of the carer's experience of difficulty, satisfaction and managing.
Research confirmed that these tools increased practitioners' insight and understanding of carers' needs and the complexities of the caring relationship, including the positive aspects. For carers, the tools led to the provision of new information and a more person-centred approach. Assessors reported a difference in the power balance. Carers were viewed as partners rather than resources, and professionals took the role of facilitators, while the expertise of carers was recognised (31).
Flexibility and innovation in service provision is necessary for an outcomes-focused approach. Practitioners using the assessment tool noted that asking carers how they would like to make use of breaks led to an increase in new or rekindled interests. The Carers' Grant guidance encourages flexibility in suggesting that money could be spent on 'driving lessons, moving and handling classes or a short holiday for the carer' and 'to support carers to move on to new learning and/or work or volunteering opportunities' (26).
Evidence suggests that many carers prefer face-to-face contact to self-assessment, (38) and that being listened to and acknowledged is a valuable aspect of the assessment process and an outcome in itself.
A disabled woman who cared for her elderly partner wanted to be able to cook him a hot meal in the evenings (lunchtimes were catered for through meals on wheels). This problem was a source of worry for the woman. The assessor simply suggested that the woman buy a microwave and promised to show her how to use it. The woman was willing to buy a microwave herself.
The result was that she felt listened to and had got what she needed from the assessment. The desired outcome was achieved with no extra cost to social services.
Informal, face-to-face contact is particularly important to young carers (38). Preparation forms that help carers plan for their assessment can be useful, but they should not be used to replace the assessment itself (8). Carers can be empowered to use such forms through advocacy or peer support that is culturally suited to their needs. Face-to-face contact is important to ensure that the carer has appropriate knowledge about the purpose and possible outcomes of assessment. If a carer chooses self-assessment and declines face-to-face contact, the local authority will need to make a judgement, based on the information provided, on whether to provide services.
People who use services and their carers should be offered the opportunity to talk separately (See chapter 5-6 'Shiela' in the Listening to carers video). Sometimes there can be tensions between them, and in exceptional circumstances where there are conflicting issues, it may be necessary for the carer's assessment to be carried out by a separate assessor (41). Carers themselves may have other requirements and should be told that they can have someone else present at the assessment - e.g. a friend, advocate, interpreter, signer (8). Training for assessors should include awareness of issues that may necessitate the allocation of separate assessors.
Where the cared-for person refuses an assessment and/or services, it is important that the carer's needs are assessed. Previous practice guidance addresses this issue (2) (pp 20-21). It may be possible to provide services that support the carer in some way or to work with the cared-for person to help them to accept a degree of service. For example, someone who refuses to accept care from another person may accept a sitting service that allows their carer some time for a break. A carer is still entitled to an assessment even where the person they care for is not eligible for or receiving services. The details of this are explained in Carer's and their Rights 9.2 - 9.5
Where a cared for person receives services that are funded by health through Continuing Care local authorities should still offer a carer's assessment. The legal framework for this is explained in detail in Carers and their Rights point 7.30 - 7.34.
If a carer refuses assessment, their views should still formulate part of the assessment process for the cared-for person:
Section 8 of the Disabled Persons (Services Consultation and Representation) Act 1986 requires the local council to have regard to the ability of the carer to provide or continue to provide care when deciding what services to provide to the disabled person (42).
Transition to adulthood for disabled young people can be a difficult time and is likely to bring about concerns for parent carers. Additional support may be needed at this time (42).
Visit the SCIE knowledge review on outcomes-focused services for older people
Practice examples are self-reported and have not been evaluated.
- A study into supporting carers in employment (29) identified an initiative in which, following assessment, carers are allocated help for a specified number of hours to give them a break from caring. Carers can take these hours on a regular basis or save them for when they are needed. Carers working irregular hours found the scheme particularly helpful.
- A family resource team in West
Berkshire Council has been running a
pilot of outcome-based working since July 2003.
the beginning, practitioners were required to
negotiate outcomes, recording with the person
the desired start and end points for each outcome.
With the help of a simple tool, the progress
towards achieving these outcomes was noted on
a scale from 1 to 10.
The experiences of those involved
in the pilot study have been overwhelmingly positive.
- greater clarity at the outset, resulting in a clear set of goals, making it easier to formulate action plans and agree time scales
- active engagement of service users in identifying areas of difficulty and in 'signing up' to try to resolve these
- a breakdown of the power differential, and improved relationships between families and professionals.
- The scaling aspect to the tool was helpful in reflecting on progress made
- There was potential to provide information about what works for future projects.
- An outcome-based approach takes time to develop.
- The identification of goals that are realistic and meaningful to the family is key to the outcomes-focused model.
- In Hertfordshire, one of the ways that the
focus on outcomes has been developed is through
using the power of the 2000 Act to facilitate
flexible use of the Carers' Grant. The following
are examples of what the grant has been used
to pay for:
- a computer for a carer who could not access computer services from the local library because he felt unable to leave the person he cared for alone
- repairs/insurance costs for a car, where transport was crucial to the caring role
- an entry phone with audio/video, where the carer lived in a two-storey house and had mobility problems
- a £500 contribution to a flight for a grandmother to come from another country and care for a woman with multiple sclerosis. Rural homecare could not deliver cost-effectively, and residential respite would have had a negative impact on the family. The outcome was that 10 weeks of family-friendly care was provided at a cost to the council of £500.
- In Birmingham, Crossroads manages a moving and handling project. When equipment is delivered to a home, a referral is automatically sent to Crossroads, which sends someone to train the carer in how to use it properly. The project is funded through the Carers' Grant.
- In Kirklees carers have been trained to co-facilitate carers' assessment training for assessors and to raise awareness about assessment amongst carers. The carers have formed a 'bank' and can be called upon to attend training and awareness events. Participants are paid for their work and offered support where appropriate. Carers are also involved in development work around assessment and training.
- Torbay Care Trust runs an emotional support scheme for carers. The scheme supports eligible carers who feel they are not coping well and would benefit from talking confidentially to a qualified counsellor, about emotional concerns affecting their caring role. Carers can be referred by care managers. Eligible carers can have up to 10 sessions, free of charge, with a participating, privately practising counsellor and they 'pay' with a voucher each time they go. Ongoing evaluation shows the scheme is beneficial.
- One carer stressed the importance of having a scheme like this, particularly as often carers cannot afford counselling. She said of her experience: “I found the scheme very beneficial. Having moved into the area to care for a family member, I felt isolated and alone. Although it was sometimes difficult bringing up issues in my life, which were not always connected with my caring role, it definitely helped me move on and build my life down here. I feel a different person, much more positive and in control. I hope the scheme continues and that many other carers get as much out of it as I did.”
- In Peterborough, moving and handling training is provided to carers on an individual basis in their own home. Trainers have access to small aids provision and may make referrals to occupational therapy.
- In partnership with Carers UK the four Beacon councils for supporting carers (Hertfordshire, Rochdale, Sefton and Sunderland) have produced a DVD http://www.listeningtocarers.public-i.tv/site/ and training pack for front-line staff to support them in carrying out effective carers' assessments. Trainers, managers and front-line staff had all identified a need for a video-based tool to support training. While the best option is always to involve carers as trainers, the reality is that this may not always be possible, and this DVD ensures the carers' voice is powerfully heard. The DVD can be viewed here - Listening to carers
- a questionnaire for carer feedback to support outcomes focused assessment. This tool is designed to make it easier for any authority that does not already have a routine process for getting carer feedback. The aim is that a questionnaire like this may one day form the basis of a national measure of how local authorities are delivering actual outcomes, rather than simply measuring processes. Some authorities are already beginning to use this questionnaire.
- a balanced scorecard. This tool is designed to assist authorities in identifying how their carers' strategies are delivering on the seven strategic outcomes of the White Paper. It will also give a structure for discussions with business relationship managers on these issues. The tool is available at http://www.beacons.idea.gov.uk/idk/core/page.do?pageId=6283626