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

This project will examine how far current practice in social care recognises and balances the needs and interests of service users and informal carers; and how far this practice is consistent with what service users and carers actually want. Clarifying the role of carers within personalisation is particularly important for service users with communication and/or cognitive impairments who depend on carers to communicate their needs and wishes.

Related links

Publications and presentations from the project are available from the York Research Database.

This research sits within our Professional and service issues research themeRead about our research themes.

SPRU research team

  • Wendy Mitchell
  • Caroline Glendinning
  • Jenni Brooks

Project summary

Background

Personalised adult social care emphasises the aspirations and preferences of service users. Carers have also secured rights to assessments and support (DH, 2007). These developments have occurred largely separately and may overlook the close relationships between disabled and older people and the family/friends (informal carers) that support them. This study examined how far current practice in social care recognised and balanced the needs and interests of service users and informal carers; and how far this practice was consistent with what service users and carers actually wanted. Clarifying the role of carers within personalisation was particularly important for service users with communication and/or cognitive impairments who depend on carers to communicate their needs and wishes.

Aims

The study’s aims were to:

  • describe social care practice in relation to carers’ roles in the assessment, support planning and management of personal budgets
  • examine how far personalised assessment and support planning processes recognise and balance the respective needs and wishes of service users and informal carers
  • examine the respective views of service users with communication and/or cognitive impairments and their carers on the role that each wants carers to play in self-assessment and support planning processes.

Methods

The study had three stages:

Stage 1: a short online survey of all adult social care departments in two English regions. The questionnaire  explored how carers were involved in assessment, support planning and management of personalised support arrangements. Three departments were selected for Stages 2 and 3.

Stage 2: across the three departments interviews with Personalisation and Carers’ leads were conducted. Focus groups were also held with front-line staff working with older people and people with learning disabilities. Personalisation and Carers’ lead interviews examined local authority policies and practice guidance. Interviews with front line staff focused on practitioners’ experiences of conducting personalised assessments, support planning and reviews with service users (with communication and/or cognitive impairments) and their carers.

Stage 3: older people with dementia and young adults with learning disabilities (up to 25 years) with communication impairments and their informal carers were recruited from the three departments. Individual interviews were conducted with carers and service users. Verbal and symbol-based research methods were used, as appropriate, with service users. Interviews explored service user and carers’ own experiences and evaluations of personalised assessment, support planning and reviews.

Policy and practice aims

The study identified the range of practice currently promoted and used by front-line staff. This practice was compared with service user and informal carers’ own experiences. These insights were used to inform guidance on assessment and support planning processes and management of personalised support arrangements that more accurately reflects both service users’ and carers’ wishes. The study generally sought to explore the views of an often-overlooked group of service users, as well as those of their carers.

Extension to the study

Some authorities completing the main survey (above) mentioned mechanisms they had or were using to decide and then allocate money to support carers. These included single-sum grants, direct payments or payments graduated according to the level of care provided. The current Care Bill (2013) strengthens carer’s rights, including the right to receive a personal budget. The Bill also emphasises the importance of  transparency around how councils determine the levels of grants, direct payments or personal budgets for carers. However, evidence on councils’ current practices and anticipated developments in determining levels of funding for carers is currently very limited.

The extension aimed to explore:

  • What approaches were used by local authorities to determine the levels of grants, personal budgets  or direct payments awarded to carers and why these had been chosen.
  • Anticipated changes to these approaches following implementation of the Care Bill (2013).

It had two stages:

Stage one: a short online survey of adult social care departments in the two English regions previously participating in the Personalisation and Carers study. The survey asked authorities to explain how they allocated resources to carers and any future plans to change this.

Stage two: individual interviews with the carers lead officer in three in-depth study sites. These interviews followed-up the stage one survey responses and explored in more depth councils’ current and future planned approaches to allocating resources  to carers.

This research developed the evidence base surrounding the introduction and implementation of carer resources in English local authorities. It began to scope the different mechanisms and approaches local authorities have developed or are planning to use when allocating resources to carers. These insights should help to inform practice guidance on transparent approaches towards the allocation of resources to carers through personal budgets or direct payments. 

Additional information

Related links

Publications and presentations from the project are available from the York Research Database.

This research sits within our Professional and service issues research themeRead about our research themes.