Quality statement 7: Holistic support – families and carers

Quality statement

Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

Quality measure

Measures from End of life care strategy: quality markers and measures for end of life care (Department of Health 2009).

See also quality measures and national indicators for further information.

Structure:

a) Evidence of local arrangements to ensure that families and carers of people approaching the end of life receive comprehensive holistic assessments in response to their changing needs and preferences.

b) Evidence of local arrangements to ensure that families and carers of people approaching the end of life are offered holistic support appropriate to their own current needs and preferences.

Process:

a) Proportion of nominated informal carers (such as a family member) of people identified as approaching the end of life, who receive a comprehensive and holistic assessment of their own needs and preferences.

Numerator – the number of people in the denominator receiving a comprehensive and holistic assessment of their own needs and preferences.

Denominator – the number of nominated informal carers (such as a family member) of people identified as approaching the end of life.

b) Proportion of nominated informal carers (such as a family member) of people identified as approaching the end of life, who receive holistic support in accordance with their most recent assessment.

Numerator – the number of people in the denominator receiving holistic support in accordance with their most recent assessment.

Denominator – the number of nominated informal carers (such as a family member) of people identified as approaching the end of life, who have received an assessment of their own needs.

Outcome:

a) Carers and families of people approaching the end of life feel supported.

b) Carer quality of life.

See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to offer families and carers of people approaching the end of life comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

Health and social care professionals offer families and carers of people approaching the end of life comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

Commissioners ensure they commission services that offer comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

Families and carers of people approaching the end of life have their own needs fully assessed as appropriate for their changing needs and preferences, and are offered support to help them cope.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality marker for providers 5; and markers and measures 2.3, 3.10 and 3.11.

Data source

Structure:

a) Quality and Outcomes Framework (QOF) indicator MANAGEMENT 9 (primary care): The practice has a protocol for the identification of carers and a mechanism for the referral of carers for social services assessment. The Operating Framework for the NHS in England 2011–12 integrated performance measure SQU08: Agree and make available to local people policies, plans and budgets to support carers (not specific to end of life care).

b) Local data collection.

Process:

a) Local data collection. The draft End of life care locality register pilot programme core dataset from the Information Standards Board records carer details. The draft comprehensive dataset records whether there is a care plan in place for the carer.

b) Local data collection.

Outcome:

a) Local data collection. 2011/12 Adult Social Care Outcome Framework indicators 3B – Overall satisfaction of carers with social services and 3C – The proportion of carers who say that they have been included or consulted in discussions about the person they care for (not end of life care specific). Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the responder and their family got as much help and support from health and social services as they needed when caring for the person who died and whether they were able to discuss any worries and fears they may have had about the person's condition, treatment or tests with GPs.

b) Local data collection. The NHS Outcomes Framework 2011/12 indicator 2.4 – Health-related quality of life for carers (not end of life care specific). 2011/12 Adult Social Care Outcome Framework indicator 1D – Carer-reported quality of life (not end of life care specific).

Definitions

A 'holistic' assessment includes, as a minimum: physical, psychological, social, spiritual, cultural, and where appropriate, environmental considerations. This may relate to needs and preferences as well as associated treatment, care and support.

A comprehensive assessment is likely to be multidisciplinary and may require the input of both health and social care professionals, as well as other appropriate support services. A comprehensive assessment is one that is coordinated effectively in order to avoid duplication.

'Carers' here are defined as informal, unpaid carers or supporters, rather than paid health and social care workers. Sometimes the main carer will be a child, a young person or a person with his or her own disability, and services should be sensitive to the particular issues that this may raise.

The term 'families' is broad and relates to any person who has significant contact with the person approaching the end of life, including children, a partner or close friends. Occasionally, particularly in hostels, for example, staff working directly with the person approaching the end of life may fulfil this role.

A carer's assessment is defined by the Department of Health's End of life care strategy: quality markers and measures for end of life care. Carers can be identified for this assessment by social services, GPs and through self-referral by carers themselves.

Support for families and carers may include emotional and psychological support. Training on practical issues should be available for those caring for people approaching the end of life who require extra help with daily living or extensive care. Addressing the needs of carers should also include access to good quality respite care, appropriate to their circumstances. This may include residential and day respite, as well as overnight one-to-one care in the person's home, for example. Support may also encompass planning for other circumstances, for example when carers are taken ill.

The emphasis here is on support being offered to carers. The right of carers to refuse support must be respected. Carers who decline support initially should be offered the opportunity to change their minds later on, if they wish.

Examples of information resources available for families and carers include those from the Dying Matters Coalition.

Supporting carers: an action guide for general practitioners and their teams is available from the Royal College of General Practitioners.

Bereavement support is addressed specifically in quality statement 14.