Personalisation

Personalisation and personal budgets

1. Summary

Personalisation is intended to transform social care by putting people at the centre of their own care so that they have independence, choice and control over the services they use. Alzheimer's Society supports the stated aims of the personalisation agenda. It has the potential to improve quality of life for people with dementia and their carers, by reinforcing the importance of placing the individual at the centre of their care, with a shift towards early intervention and locally based services.

Personal budgets - the main approach to delivering the personalisation agenda - can enable people with dementia and their carers to exercise more choice and control over their care. Alzheimer's Society supports all people with dementia having a personal budget, in the form that is most appropriate for them. However, significant steps are needed to enable individuals to take advantage of personal budgets. Clearer evidence, information and support is vital.

Without making personalisation work for the large number of people living with dementia, the personalisation agenda will not be able to successfully and universally deliver the type of change envisaged by the government.

2. Background to personalisation and personal budgets

Personalisation is a central element of the government's agenda in England to transform the health and social care system. It is about putting people at the centre of their own care so that they have independence, choice and control over the services they use, with a focus on supporting people to live independently through early intervention.

The personalisation agenda applies to people in all care settings, not just to individuals who live in their own home. The approach of person-centred care is vital for delivering the agenda and all service providers must take a personalised approach, which gives the individual real choice, control and involvement in their care. This is discussed further in our public position statement on formal care. Personalisation is also about ensuring that individuals are involved in their community, with access to universal services such as transport, leisure and housing.

Personal budgets are a key way of delivering the personalisation agenda in England: the coalition government has made a commitment that everyone receiving social care services will be in receipt of a personal budget by April 2013. Discussions around the use of personal budgets (particularly direct payments) are also happening in Wales and Northern Ireland.

A personal budget is the amount of money that a council decides to spend in order to meet the needs of an individual eligible for publicly funded social care. A personal budget can be taken by the eligible person as a managed option by the council or third party, which means not having to take on direct budget management responsibilities. Alternatively it can be taken as a direct (cash) payment or as a combination of these options. At their simplest level, personal budgets involve a clear and upfront allocation of resources and a discussion between social services and a service user/carer about how much money has been allocated to meet their assessed care needs, how the service user or carer would like to spend this allocation and recording these views in the care plan.

Direct payments allow individuals to directly purchase services they have been assessed as needing (such as employing a live-in carer or personal assistant). Direct payments were extended to people who lack capacity to consent and to people with mental health problems that are subject to mental health and certain criminal justice legislation in 2009 in England and 2011 in Wales.

The principles of personalisation are also being extended into health in England. The Department of Health has been piloting personal health budgets with 75 primary care trusts over a three year period, which will end in October 2012. The coalition government have announced that personal health budgets will be rolled out from October 2012 and people receiving continuing healthcare support from the NHS will have the right to ask for a personal health budget, by April 2014.

3. Personalisation and personal budgets for social care in the context of dementia

Alzheimer's Society supports the principles underlying the personalisation agenda, such as person-centred care, early intervention and access to the community. We believe that they have the potential to improve quality of life for people with dementia and carers. However, to truly deliver personalisation there needs to be wider social care reform to tackle barriers such as a lack of funding in the social care system and strict eligibility criteria for social care. Personal budgets must not be seen as a cure-all for the social care system.

In addition, the Society supports the aims of the main approach to delivering the personalisation agenda as personal budgets have the potential to promote choice and control for people with dementia and carers. However research indicates that there are currently barriers that prevent people with dementia and carers accessing the range of personal budget options.

Alzheimer's Society's Getting personal? (2011) report suggests that 23% of people with dementia who are eligible for social services support are using a personal budget or direct payment arrangement. A further 15% had been offered a direct payment or personal budget but declined.

Alzheimer's Society (2011) have found that there are clear benefits to people with dementia and carers using direct payments. These include:

being more likely to say they have received enough information
being more likely to feel that the person with dementia was getting the support they needed and that services made life easier
being more satisfied with support received at an early stage and that services were focused on meeting the person with dementia's specific needs.

However accessing and using direct payments can also be a big burden, with perceptions that the process was stressful and that there was a lack of information. Barriers include:

a personal budgets system that has not yet adapted to the needs of people with dementia and their carers and is overly complex and burdensome
a lack of appropriate support to enable people with dementia and carers to use direct payments
a lack of information for people with dementia and their carers leading to a lack of understanding about personal budgets and direct payments, and concerns about their use
the attitudes and understanding of health and social care professionals
local markets that are not yet fully developed to deliver a wide rage of different types of dementia services
insufficient funding- in some areas low levels of payment can mean people with dementia cannot meet their assessed or changing needs as their condition progresses
substantial and critical eligibility criteria, which mean that many people are not eligible for social care services until crisis point. At this time a personal budget may no longer be an option, for example if entry into a care home or hospital is necessary.

Alzheimer's Society supports the commitment that all people with dementia should have a personal budget by 2013 in England, but this must be in a form that is appropriate for them. This ranges from a discussion about the amount of money available and possible care and support options, to access to direct payments. Alzheimer's Society believes that more people with dementia and carers could benefit from direct payments than currently do. However, there must be action to remove the barriers that currently exist.

The Society campaigns for:

All people in England to have a personal budget by 2013 in a form that is appropriate for them and similar systems in Wales and Northern Ireland that allow people to be involved in their own care planning
Recognition that personal budgets are not a cure-all for the social care system and that to achieve truly personalised care, there must be widespread social care reform, including a serious debate about the level of funding required
The development of clearer evidence on personal budgets and dementia, including pilot sites to evaluate effective models of provision and accurate data on current use of personal budgets
Market development to deliver a range of different types of dementia services, particularly early intervention and prevention services and specialist support for people in their own homes
Awareness raising and training for health and social care professionals on the inclusion of people with dementia and carers in the personal budgets system and the extension of direct payments to people who lack capacity
Timely and appropriate information for people with dementia and carers about the various personal budget options available and appropriate support services available for all people with dementia to allow them to access and use personal budgets and direct payments
The health and social care system to actively engage people with dementia and their carers to ensure that it is able to address their needs.