Plan with care

The inclusion and involvement of carers in their individual assessment is high on the policy and practice agenda again with the introduction, last April, of the Carers (Equal Opportunities) Act 2004. Too often in the past carers have been the subject of well-intentioned initiatives that have made little impact on their lives. Are things likely to be different this time?

The Social Care Institute for Excellence recently commissioned the University of Sunderland with Sunderland Carers’ Centre to look at how well organisations were involving adult carers in service organisation planning and delivery. There is evidence that they are involved in health and social services at a strategic level. Most organisations had written policies recording their commitment to involving carers, with many primary care trusts using social services documents.

There was also clear evidence that carers had access to key decision-making forums. This was often through membership of carers’ forums, which fed directly into the service planning process although usually the agendas were already set, and carers were invited to comment afterwards. There was some concern expressed by carers’ organisations that commitments did not get beyond the written policy.

The research suggested that most responding organisations had agreed outcomes with carers’ representatives, gave feedback and were able to illustrate changes in service delivery and organisation. Short breaks were the example most frequently mentioned with some social services departments passing the organisation and control of these directly to carers.

One defining factor of commitment is how well carers’ issues are embedded into partnership arrangements between agencies. There is no doubt that agencies in partnerships tend to go beyond rhetoric with carer involvement. A small number of respondents referred to involving carers through modernisation and reform group structures. The Office of the Deputy Prime Minister commented favourably on this when awarding beacon status to one council for its work with carers: “The use of modernisation and reform groups to redesign service provision using a multi-agency approach shows how the council excels in strategic planning and involving carers in that process.”

A key factor in encouraging carers to be involved in decision-making forums is their scope for buying in replacement care to cover caring commitments. Most organisations fund individual carers’ time through the carers’ support grant, and some went further in providing “buddies” for people new to the process.

Notwithstanding these achievements, the difficulties faced by carers in becoming involved should not be underestimated. Neither should the difficulties for statutory services of involving carers who are not able to have a strong voice at a strategic level.

The challenges of involving hidden or marginalised carers and being accountable to them became apparent when organisations were asked if they had relevant written policies. These groups were defined as “people who do not recognise themselves as carers, or black and ethnic minority carers, gay and lesbian carers and carers of people with silent or stigmatised conditions such as Aids”.

Less than half the respondents had such policies and no responding partnership board had one. This may reflect an assumption that all family carers are already known or catered for through other means. Likewise research and policy on ethnic minorities suggest there is an assumption that “families look after their own”.(1) Similarly, there were few examples of engagement in the statutory sector with gay and lesbian carers, reinforcing Manthorpe’s findings.(2)

Some organisations, however, go beyond a written document and do exhibit innovative approaches. One carers’ organisation, for example, worked with 17 GP surgeries in a London area by attaching post-it notes to repeat prescriptions that asked potential carers to contact their surgery if they wanted more information about help and advice they may be entitled to. This meant carers didn’t have to approach social services or carers’ centres in the first instance, they could talk to their GP first who could then refer them on if they were interested. Unfortunately short-term finance was often raised as a barrier to continuing innovations like this.

It is at the level of individual assessment that most carers are known to organisations. The researchers wanted to explore the involvement of carers in determining the content and process of assessment at a strategic and individual level. Only four organisations reported any concerted effort to keep carers involved strategically. There was one excellent example of carers designing the whole assessment documentation, although the respondent commented that time is an issue and it is “quicker to step in and do it yourself”.

It was the area of individual carer assessments that was causing the most frustration. Many social services departments were still unclear about their ability to devolve carers’ assessments. Several organisations responding said their own research told them that for individual carers, assessment was a major problem. Many of the carers they were in touch with had not had an assessment or had not received a copy when one had been undertaken.

This frustration was confirmed by carers interviewed for our survey. Statements like “we can input into, but not influence our assessments” might sum up these carers’ feelings. Carers in the survey also recognised that where they could influence it was often because of their strategic connections -“I picked up the phone and rang the councillor on the partnership board.” This is not an option for most carers who do not have strategic involvement.

Overall, carer assessment was one of the least consistent elements of carer participation according to statutory agencies and carers. Why individual assessments are such an issue is one that needs to be explored. The question of resources was raised, and while many recognised that the carers’ grant is a help, there were fears that this would be lost eventually. It was also recognised that training for front-line staff in how to involve carers might be something more organisations need to do. Many said they were doing this, but few used carers themselves to inform staff about the difference that training might make to their individual situations.

Finally some carers felt that the reason there were high levels of dissatisfaction with carers’ assessments was because professionals had to “wrestle” with the “performance management culture” while trying to meet their needs. The support provided to carers often needs to be very individually focused. Deadlines in which assessments have to be completed may not give carers time to think through what they need, especially if they do not see themselves as carers. The sharing of power, an issue so central to substantive carer, user and professional relations, seems unlikely in such a service climate.

This suggests that there is still some way to go in creating a structure in which carers feel they have a genuine involvement in their relationships with supporting agencies. Some progress has been made and merits acknowledgement, but too often this is limited to pockets of good practice constrained by limited funding. The gap between legislative intent and practical outcome remains too wide for comfort.

Val Hudson is senior lecturer at the school of health, natural and social sciences at the University of Sunderland. She moved to academic work three years ago following a 25-year career in social work and management roles in social services. She has always been interested in carers’ issues, and was involved in early research that brought the needs of carers to the attention of the medical and social work professions.

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Research has been undertaken to look at how well social care and health organisations involve adult carers in service planning and delivery. This article concludes that while some carers are involved at a strategic level, carers are most dissatisfied about their involvement in individual assessment processes and outcomes.

About The research
A full literature review was undertaken along with a survey of best practice examples. The survey of practice was in England, Wales and Northern Ireland and involved e-mailed questionnaires to all social services departments, and a selection of partnership boards, health trusts and carers’ organisations. This was followed up with telephone interviews to those organisations showing examples of innovative practice. At this stage a number of carers throughout the UK were also interviewed. The research will be published shortly by Scie.

(1) Social Services Inspectorate, They Look After Their Own Don’t They? Inspection of Community Care Services for Black and Ethnic Minority Older People, 1999
(2) J Manthorpe, “Nearest and Dearest? The neglect of lesbians in the caring relationship”, British Journal of Social Work, 33(6) 753-768

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