Quality standard
Quality statement 5: Support for carers
Quality statement 5: Support for carers
Quality statement
Carers providing end of life care to people at home are supported to access local services that can provide assistance. [new 2021]
Rationale
Practical and emotional support for carers is crucial to help them continue caring for the person approaching the end of their life at home. It is important for their own wellbeing, helping to reduce their levels of stress and illness. It can also help to prepare carers for the death of the person they are caring for and help to ensure they receive bereavement support.
Quality measures
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.
Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.
Structure
a) Evidence that local services are in place to support carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from commissioning agreements and local contracts.
b) Evidence that carers can access support services.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from service level agreements and pathways of carer support.
Process
Proportion of carers providing end of life care to people at home who are supported to access local services that can provide assistance.
Numerator – the number in the denominator who are supported to access local services that can provide assistance.
Denominator – the number of carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local carer experience surveys and audits of referrals to social prescribing and community support.
Outcome
a) Proportion of carers providing end of life care to people at home who are satisfied with the support they receive.
Numerator: the number in the denominator who are satisfied with the support they receive.
Denominator: the number of carers providing end of life care to people at home.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local carer experience surveys. The NHS Digital's Personal social services survey of adult carers collects data on the satisfaction of all carers with the support they receive.
b) Carers' quality of life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from NHS Digital's Personal social services survey of adult carers and local carer experience surveys. A carer-reported quality-of-life score based on this survey data is included in NHS Digital's Measures from the Adult Social Care Outcomes Framework.
What the quality statement means for different audiences
Service providers (community care, mental health care, primary care, secondary care and tertiary care services, hospices, social care and voluntary services) ensure that systems and services are in place to provide practical and emotional support for the carers of adults approaching the end of their life. This includes providing end of life care at home, help to use equipment and adaptations, emotional support, respite care and any additional help they may need at home. They can also offer support when the person being cared for is in hospital.
Health, social care and voluntary sector practitioners (such as social workers, mental health clinicians, pharmacists, occupational therapists, GPs, specialists, nurses and voluntary services workers) are aware of local services that can support carers of adults approaching the end of their life and refer or help carers access services that they may need. Practitioners within these services provide carers with emotional and practical support to care for the adult approaching the end of their life, for example, providing end of life care at home and help to use equipment and adaptations. They can also offer support when the person being cared for is in hospital.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that provide emotional and practical support to carers of adults approaching the end of their life being cared for at home.
Carers supporting people at home at the end of their life can access practical and emotional support locally. This can include support from hospices, palliative home care, respite care and practical support to use equipment or adapt the home to help with the person's care. They may also be able to access support when the person being cared for is in hospital.
Source guidance
Supporting adult carers. NICE guideline NG150 (2020), recommendation 1.9.12
Definitions of terms used in this quality statement
Carer
A carer is someone who helps another person, usually a relative, partner or friend, in their day-to-day life. This term does not refer to someone who provides care professionally or through a voluntary organisation. A young carer is aged under 18. [NICE's guideline on end of life care for adults]
Local services that can provide assistance
These are services provided locally, including from local hospices, to support carers when providing end of life care at home. They can include:
[Adapted from NICE's guideline on supporting adult carers, recommendation 1.9.12]
Equality and diversity considerations
In some cases, the carer may be a younger or older person or have a disability or a significant health condition themselves, and this needs to be taken into account when support is being considered and provided.
If the adult approaching the end of their life also has a learning disability their carer may also need additional specialist support which should be considered by the practitioner providing care.
The carer's culture and religious beliefs may have a significant influence on whether they wish to be involved in some of the discussions about end of life care and advance care planning for the person they care for. The practitioners need to approach these discussions in a sensitive way. If carers do not want to speak about the future needs and care arrangements for the person they care for, this should be respected and clearly recorded.
Carers should be provided with information on support services in a format that they can easily read and understand themselves, or with support, so they can communicate effectively with health, social care and community practitioners. The information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and be culturally and age appropriate, taking into account the person's level of health literacy. People should have access to an interpreter or advocate if needed.
For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.