Q&A: The new carers' performance indicator (PI)

Why have a new PI?

The D42 performance indicator in the Performance Assessment Framework (PAF) is acknowledged to provide poor information for both councils and policy officials about how well carers are being served locally. This is because of issues of both data quality and in the definitions used in data collection and of the PI itself. As a consequence it has been an ineffective driver for developing carers' services. This is of particular significance with the recent announcement of the removal of the ring fencing from the Carers Grant from 2004/05.

How has it been developed?

Work has been undertaken since summer 2003, through a series of consultation papers and discussion with stakeholder groups within the Department of Health (DH) and externally. A paper setting out more worked up proposals on the PI and some preliminary thoughts on the supporting data collection were then shared with the following groups of people for comment:

• Local Authority (LA) carers contacts
• Association of Directors of Social Service carers lead
• policy leads in the DH and the Department for Education and Skills
• the Social Service Inspectorate carer’s group
• voluntary organisation representatives
• PI review groups (each of which include LA representatives) and
• Social Service Research Group (SSRG).

Overall there was considerable recognition of the need to update D42 and support for developing an outcome based PI to collect data on support for carers. A firm proposal for the PI was consulted on and the responses were incorporated into a paper for the Minister, Dr Stephen Ladyman. He approved the proposal on 18 March 2004.

What are the definitions of the new PI?

This outcome PI is generic, gathering information about all user groups. The intention is that it will be possible to disaggregate the data by user group as well as ethnicity and the age of the carer.

The indicator which will replace D42 in the Personal Social Services PAF PI set is the number of carers receiving a specific carer's service as a percentage of clients receiving community based services:

• Numerator: The number of carers receiving a ‘carers break’ or ‘specific carers’ service’ following an assessment or review during the year
• Denominator: The number of clients receiving a community based service during the year

(source: RAP P2f)

For the first year of the data collection in 2004-05 the numerator will be based on data for 6 months.

Why were these definitions chosen?

Denominator: By using this denominator the indicator will ensure that councils have incentives to reach out to carers they are not in contact with rather than focusing on those they already know. The Audit Commission report 'Support for carers of older people' (2004) suggested that it is often the case that once in the system carers are relatively well supported but that those outside have very little access to services.

We recognise that there are carers who will not be included, because the people they care for are not accessing the services they are entitled to, but this offers the best representation of the potential pool of carers.

So, though the option to use the number of carers' assessments undertaken was considered, it is felt that with this as a denominator the indicator could not be looked at in isolation. Without an assessment of volume it might provide perverse incentives to councils to support fewer carers well. The use of the 2001 census data for carers was also considered, but it was felt that the data would become increasingly inaccurate.

Numerator: With regard to the numerator it was felt that if provision of ‘information and advice’ and ‘services for the cared for person that may also support the carer’ were included in the PI then most councils would show a 100% of carers assessed as receiving a service. In recognition of their importance and for monitoring purposes the data set includes ‘information and advice’ and ‘services for the cared for person’ in the data collection, but the PI only includes breaks and services specifically for the carer.

When will it come into effect?

This information will be collected via the Referrals, Assessments and Packages of Care (RAP) return and in the first year will cover data from 1 October 2004 to 31 March 2005. This is so that the PI can be included in the 2004-05 PAF PI set. From 2005-06 the data collection and PI would cover the activity over the whole year. The current information collected in RAP form A4 will be removed.

What data will we need to collect?

To support its introduction we will be asking councils to provide some additional information about carers' assessments and the services that they receive.

Two tables of data are required on carers.

• Table C1: collects information on carers assessments (similar to the current data collected in form A4 of RAP);
• Table C2: collects information on the number of carers receiving a service following an assessment.

Coverage: The information recorded should relate to individuals in their role as a carer. If a client has more than one carer then information about both carers should be recorded. Where a carer is also a client in their own right the information included in these tables should only record information about their role and needs as a carer.

Table C1: Total No of carers assessed or reviewed from 1 October '04 to 31 March '05

If a carer is assessed or reviewed more than once during the period they should only be counted once in the table. Please record the latest assessment or review event. For example if carer A who is aged 32 is assessed separately in November and then receives a review jointly with the client in February they should be recorded just once in row 2, column 2 of the table.

If a carer declines a separate assessment but is then assessed jointly with the client they should be recorded as being assessed jointly with the client rather than declining an assessment. Similarly if a carer is assessed jointly and then separately they should be recorded as receiving an assessment separately.

Table C2: The number of carers receiving different types of services provided as an outcome of an assessment or review from 1 October '04 to 31 March '05

Information and advice and/or other services for the cared for person only.

The outcomes specified should be those services that result from an assessment or review by social services or on their behalf. For example where a carer receives a review any new services agreed as well other services that are continuing should be recorded.

If a carer is assessed or reviewed more than once during the period the outcome from their most recent assessment or review should be recorded. For example if carer A is assessed in November and then receives a review in February, the services that are agreed to be provided following the review in February should be recorded.

If a carer receives a service from an agency funded by the CSSR but has not been assessed, the carer should not be included in table C2. In the future we may wish to include them, but more work will need to be done to establish how this can be done while ensuring that the data collection is robust.

Types of service: Services for carers are defined into one of four groups:

• ‘breaks for the carer’;
• ‘other specific carers services’;
• ‘information and advice’; and
• ‘other services for the cared for person’.

It is important to collect information on services other than those included in the PI as they are recognised as important services that LAs provide and this needs to be monitored centrally.

However ‘information and advice’ and ‘other services for the cared for person’ are not included in the PI as it may enable the PI to be manipulated too easily. For example ‘information and advice’ could be provided to all carers without much effort and ‘other services for the cared for person’ are not primarily put in place to support the carer.

Each carer receiving a service should appear just once in the table above. For example if a carer receives all four types of service defined for carers following an assessment or review they should appear in column 1 of the table as their services include at least one of breaks for the carer and other carers’ specific services. If they receive information and advice only they should be counted in column 2 as their services don’t include breaks for the carer or other carers’ specific services.

Mechanism for data collection: Table C1 and C2 will be two new forms in the RAP collection. The information will be collected in the same way as the rest of the RAP return. The full guidance for the 2004-05 RAP return will be issued over the next couple of months. These new forms, guidance and definitions will be included in that guidance.

Will the definitions currently in RAP change?

The review has given us the opportunity to work on clarifying the definitions used in RAP with regard to the carers' indicator. It includes an expanded section on carers' assessments with examples for illustration.

Definition of terms for the collection of carers data

Carer

The definition of a carer is taken from the Carers & Disabled Children Act (2000) (C&DCA 92000)) which states that the Act affects 'carers (aged 16 or over) who provide or intend to provide a substantial amount of care on a regular basis for another individual aged 18 or over'.

Carers Assessment

The return on this topic seeks to monitor the number of carers assessed or reviewed during the period, with a division between carers assessed separately or jointly with the client for whom they provide care. The focus is on carers as carers. If a carer is assessed for needs as a client then this should be recorded in the relevant client returns on RAP.

A carers' assessment under the Carers and Disabled Children Act 2000 is carried out at the request of the carer in order:

• To determine whether the carer is eligible for support
• To determine the support needs of the carer (ie what will help the carer in their caring role and help them to maintain their own health and well -being).
• To see if those needs can be met by social or other services

Carers have a right to an assessment of their needs even where the person cared for has refused an assessment for, or the provision of community care services, provided the person cared for would be eligible for community care services.

For more information on the content of carers assessments see DH publication A practitioner's guide to Carers assessments under the Carers and Disabled Children Act 2000 which is available here

Considerations: This is consistent with the RAP definition of 'Assessment' which is the process of gathering data for the purpose of determining need and eligibility for services. The Community Care Act specifies that all services offered to a client should be the outcome of an assessment of needs. There are no restrictions as to who carries out the carers assessment, or part of it (e.g. OT assessments should be included).

An assessment is defined as the first assessment for a new client. All subsequent assessments, which must include a reassessment, will be defined as a review.

As already mentioned RAP also deals with the SAP by allowing the collection of a range of assessments for older people (contact, overview, comprehensive and specialist assessments). At contact assessment stage basic personal information is collected and the nature of the presenting problem is established and the potential pressure of wider health and social care needs is explored. The examples are below to illustrate the spectrum of carers' assessments.

Joint assessment: - A working daughter looking after her father who is alert and orientated but limited physically. He is able to cope at home during the day when his daughter is at work. They are managing well independently. As part of the assessment of her father’s needs the daughter’s needs were assessed and she was offered a separate assessment. She didn’t feel she needed any services for herself and therefore declined the assessment. She was given information about local support services and a number to ring should the situation change.

Part of holistic assessment: - An older couple living at home. The husband is caring for his wife who has moderate dementia despite the fact he is quite frail himself. It is established that he needs support to be able to be able to continue in his caring role, but he is anxious that this should not cause any distress to his wife. As part of his wife’s assessment it is established that he needs a regular break to visit his daughter and this is built into the care plan and package developed for his wife to ensure continuity of care.

Individual full assessment: - A husband looking after a severely disabled wife with MS who is completely dependent on others for all her personal care needs. She is refusing to have any services but he has chronic back pain, which is getting worse and accepts when offered a separate assessment. This is done without the presence of his wife and results in a care plan for the husband with services provided to him to support him in caring for his wife. This includes the purchase of a mobile phone to enable him to be reached if he wants to go out.

The treatment of assessments carried out by joint teams should be consistent with the guidance provided in RAP for assessments of clients. This is that if an assessment carried out by a joint team includes a social care element then the assessment should be included in RAP regardless of who carries out the assessment.

Types of services for carers

These definitions are clearly vital in ensuring that the data collected is robust and prevent double counting where services are provided specifically for the benefit of the service user though the carer will benefit by default. An example of this might be the provision of an activity week for an adult with a learning disability, the intention of which is to promote independence and social inclusion for that individual but with the valuable by-product of giving their parent(s) a break from caring.

There are four categories of services for carers defined in detail below:

Breaks for the carer

As defined in the Carers Grant Guidance: A 'breaks service' is to be construed as one which actually gives the carer a break from direct responsibility of supervising or caring for the relevant person by providing a service to that person. This would include day care at home or elsewhere &/or residential and there is no requirement for an overnight stay. This category does not include breaks intended for the person needing services. To illustrate the difference an example is given below.

A carer supporting a person with Multiple Sclerosis (MS) living independently might be assessed as needing a break which could be provided through a short stay in residential accommodation or care services at home. In contrast a person with MS might, in order to maintain their independence, need to go into residential care for rehabilitation / skin care on a regular basis. Though it is clear that the carer benefits indirectly in the latter case, the intention is to support the person with MS.

Information and advice

This is defined as a baseline minimum set of information, for example:

• social service phone number for emergencies and
• national voluntary sector contact information and
• local numbers if available and
• national financial support line number and
• general advice on back care / moving and handling
• consistent point of contact and
• anything else relevant to the individual circumstances.

Other 'Specific' Carers' Services

The Carers and Disabled Children Act 2000 enables local councils to offer direct carers support. Services for carers are not defined in the Act as such, but the local councils may provide any services which, in their view, will support the carer in their caring role and help them to maintain their own health and well being.

These services may take any form and examples described in the Carers Grant Guidance include provision of information, emotional support, driving lessons, moving and handling classes or access to training opportunities for the carer. This is not as clearly defined as the RAP definitions of components of service for users, but this reflects the heterogeneity of carers as a group. This would of course include direct payments for carers' services, which can be given to carers under the 2000 Act.

Other services for the cared for person

This is where the cared for person is in receipt of any services as a result of an assessment of their needs. All types of services that are recorded in RAP would qualify. An example is that the cared for person is in receipt of day care and home care to meet their needs. In this case the criterion is met and the carer should be recorded as receiving this category of service. Another example is that the only services that the cared for person receives are breaks and this is because the carer has been assessed as needing this service. In this case the criterion is not met as the only service received is for the carer and should be recorded under ‘breaks for the carer’ not under this category of service.

Future developments

A number of those consulted suggested that a carer satisfaction survey would be a better performance measure. In general the Department would agree, though there are concerns that the existing information systems are unable to gather sufficiently high quality data on carers. In the short term this new carers PI will produce a more meaningful and comparative data set and a survey might be built on this.