Personalisation and carers: the role of carers in assessment, support planning and managing personal budgets

Introduction

Policy and practice in English adult social care emphasises the rights of disabled and older people to have choice and control over their own personalised support arrangements, usually through the allocation of Personal Budgets (PBs). Family members providing ‘regular and substantial’ care also have rights to separate assessments of their needs and support to meet these needs. These policies have developed separately from each other. This is despite the interdependencies of service users and carers, particularly when service users have communication or cognitive impairments. When people eligible for adult social care are assessed, guidance from the Department of Health and Social Care reminds local authorities that:

• Carers should be asked about their ‘willingness’ and ‘ability’ to continue providing support. Practitioners should avoid ‘inappropriate’ assumptions about carers’ willingness to continue caring
• Carers have rights to a separate assessment of their needs; this should inform the level of the service user’s PB and their support plan
• Carers’ needs should also be considered during service users’ reviews.

Objectives

This project examined how English adult social care practice balances the interests of service users and family carers, in assessment, planning, on-going management and reviews of personal budgets, particularly when budget-holders have cognitive or communication impairments. The study examined senior local authority perspectives, everyday practice by frontline staff and experiences of service users and carers.

Methods

The study was conducted between January 2011 and December 2012 and involved:

• An email survey of local authority policy/practice in two English regions (16 councils completed out of 29)
• In-depth investigation of practice in three of these councils, through interviews with senior personalisation and carer lead managers (6) and focus groups (9) with 47 frontline staff from older
  people and learning disability teams. Both user groups were thought likely to have high levels of
  carer involvement, but with practitioner teams demonstrating contrasting practice
• Separate interviews with carers and older and disabled people with cognitive/communication impairments (14 separate sets of carers and service users). People with cognitive/communication impairments were expected to rely particularly heavily on carers when communicating with practitioners.

Findings

• Staff, carers and service users all emphasised the importance of carer involvement in assessment and support planning for personal budgets (PBs). Staff reported carers were involved in all stages of the process; working particularly closely with carers of those with learning disabilities due to long-standing relationships with service users and families. Carers of people with cognitive/communication impairments wanted to be involved to facilitate service user involvement and provide information to practitioners. Service users also valued these roles
• Local authorities have duties, as part of service user assessments, to ask carers about the support they give and their willingness and ability to continue. Managers, practitioners and carers all confirmed these questions were asked: practitioners sometimes referred to them as ‘joint’ or ‘mini’
  carer assessments
• Practitioners reported that service users’ PBs were reduced to reflect help given by carers. They were
  therefore sometimes selective in recording carers’ roles
• Local authorities also have duties to inform carers of their right to their own assessment. Practitioners reported this was often not taken up by carers and rarely led to increased carer support. Not all carers recalled being offered an assessment and few had had one
• It was common practice to plan how a PB would be used at the same time as the assessment. There was, therefore, no opportunity for any separate carer assessment to influence the PB or support plan. However, given their involvement in service user assessments, carers also invariably participated in service user support planning
• Separate assessments of carers’ needs were uncommon and seldom conducted before service user support was planned. Support for carers tended to be in the form of short breaks and were included in the service user’s PB and support plan; few had received a separate carer grant of their own. Carers felt that practitioners assumed and expected they would continue caring
• There was little clarity among practitioners about procedures for: ensuring carer involvement; conducting separate reviews of service users’ and carers’ needs; or linking separate service user and
  carer reviews. Carers were unclear whether some meetings constituted assessments or reviews.