Updated 21st August with link to project findings.
National Carers Week invited everyone to consider the impact of being a carer on a person’s life. Carers were also encouraged to make sure they access the support they need, both practical and emotional.
Carers’ own needs can easily be hidden. Social care policy and practice emphasise the rights of disabled and older people to have choice and control over their own personalised support arrangements, usually in the form of a personal budget. Family members who provide ‘regular’ and ‘substantial’ support also have rights to separate assessments of their own needs and support to meet these needs.
These policies have, however, developed separately from one another, despite the interdependencies of service users and carers. There is therefore a danger that, in focusing on the needs and rights of service users, those of carers can be overlooked.
Our research, carried out at the Social Policy Research Unit, University of York, examined how social care practice balances the interests of older and disabled people with those of family carers. We focused on disabled and older people with cognitive or communication impairments and their carers, as the latter were particularly likely to be heavily involved in their assessments and support planning. The study involved
- A survey of councils in two English regions
- Interviews with senior personalisation and carer lead officers, and focus groups with front line practitioners, in three councils
- Interviews with pairs of service users and their carers
We found that both carers and service users were happy for carers to be involved in service user assessments. Carers helped people explain their needs to social workers, and interpreted what professionals said to service users. Disabled and older people felt supported and reassured by having someone present who knew them and their needs, even if the carer remained quiet. Professionals also appreciated having carers involved.
Professionals frequently talked to service users and carers together, at the same time. This was thought of as a ‘joint’ or ‘holistic’ assessment which provided an opportunity to get a picture of the family situation as a whole – although it did not allow carers to discuss their own situation in private or consider the emotional impact of care-giving.
Most carers remembered being asked about their ‘willingness’ and ‘ability’ to continue caring at this time, but many could not remember being asked about their own needs. The Carers (Equal Opportunities) Act 2004 says carers should be offered separate assessments of their own and the opportunity to talk about their own needs that extend beyond their care-giving roles to include, for example, leisure activities and employment.
While many carers in the study had been offered a separate carers’ assessment, few had taken this offer up unless it was necessary to access a specific service. Some felt a separate assessment was pointless, as it would not lead to extra support, while others felt they had already talked enough about themselves during the service user’s assessment. Some front-line practitioners could also not see the point of a separate carer assessment.
However, without a separate carer assessment, the only time carers talk about their own needs may be during service users’ assessments. If the only questions addressed to carers in these assessments are about the practical care tasks they carry out and their ‘willingness’ and ‘ability’ to continue performing these, there is a danger of carers’ wider needs being overlooked or ignored. This is far from the intentions of the 2004 Act, which aimed to increase the social inclusion of carers.
As skilled professionals, many social workers will ask wider questions and delve deeper into carers’ lives and their support needs in the course of service user assessments, but where are these needs recorded? Some practitioners expressed concern about the lack of space on service user assessment forms to record carers’ wider needs and wishes.
This study suggests that
- The value of separate carer assessments needs to be much clearer, both to practitioners and to carers themselves.
- Where carers do not take up the offer of a separate assessment, service user assessments should provide space for detailed discussion and full documentation of carers’ own support needs
- When separate carer assessments are done, they need to be routinely linked to service user assessments. Practitioners also need to be clear about the processes that facilitate this.
A summary of the findings of our study is now available on the project website. Please contact us if you have questions about the research.
Dr Jenni Brooks (email@example.com), Dr Wendy Mitchell, Professor Caroline Glendinning
Social Policy Research Unit, University of York
The research was funded by the NIHR School for Social Care Research. The views expressed here are those of the authors and not necessarily those of the NIHR School for Social Care Research or the Department of Health, NIHR or NHS.