A-Z
Topics
Latest

Supporting adult carers

About

What is covered

This NICE Pathway covers support for adults (aged 18 or over) who provide unpaid care for anyone over 16 with health and social care needs. It aims to help people recognise themselves as a carer and understand their right to information and support. It covers identifying and assessing carers, as well as providing information and practical, emotional and social support and training. It includes support during end of life care.
Recommendations about supporting carers who are caring for people with specific health needs can be found in NICE guidance on those topics.

Updates

Updates to this NICE Pathway

2 September 2021 End of life care for adults (NICE quality standard 13) added.
19 March 2021 Supporting adult carers (NICE quality standard 200) added.

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on supporting adults carers in an interactive flowchart

What is covered

This NICE Pathway covers support for adults (aged 18 or over) who provide unpaid care for anyone over 16 with health and social care needs. It aims to help people recognise themselves as a carer and understand their right to information and support. It covers identifying and assessing carers, as well as providing information and practical, emotional and social support and training. It includes support during end of life care.
Recommendations about supporting carers who are caring for people with specific health needs can be found in NICE guidance on those topics.

Updates

Updates to this NICE Pathway

2 September 2021 End of life care for adults (NICE quality standard 13) added.
19 March 2021 Supporting adult carers (NICE quality standard 200) added.

Sources

NICE guidance and other sources used to create this interactive flowchart.
Supporting adult carers (2020) NICE guideline NG150
Supporting adult carers (2021) NICE quality standard 200
End of life care for adults (2011, updated 2021) NICE quality standard 13

Quality standards

Supporting adult carers

These quality statements are taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

End of life care for adults

These quality statements are taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statements

Identifying carers

This quality statement is taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

Quality statement

Carers are identified by health and social care organisations and encouraged to recognise their role and rights.

Rationale

It is important to identify carers at the earliest opportunity and to encourage them to recognise their role and rights. This will help ensure that they are recognised as partners in the care of the person they are supporting and can access any advice and support they may need. By adopting a proactive approach, health and social care organisations can support practitioners to identify carers and encourage more carers to self-identify and seek support. Recording details about carers, with their consent, will enable these details to be shared with other practitioners to help inform the planning of local support and services for carers.

Quality measures

Structure
a) Evidence that health and social care organisations have strategies, policies and processes to identify carers and encourage them to recognise their role and rights.
Data source: Local data collection, for example, audit of local policies and processes.
b) Evidence that health and social care practitioners understand their responsibilities under the Care Act 2014 to identify carers.
Data source: Local data collection, for example, carer awareness training records.
c) Evidence of local arrangements to encourage carers to self-identify and seek support.
Data source: Local data collection, for example, evidence of publicity and information sharing initiatives to support NHS England and NHS Improvement’s supporting carers in general practice: a framework of quality markers.
d) Evidence that health and social care organisations have systems to record and share details about carers, with their consent.
Data source: Local data collection, for example, audit of systems such as a carer’s register to support NHS England and NHS Improvement’s supporting carers in general practice: a framework of quality markers.
Outcome
a) Number of carers known to local health and care organisations.
Data source: Local data collection, for example, a carer’s register, NHS Digital’s Short and Long Term (SALT) data collection. Local health and social care organisations should share data to ensure they have an accurate assessment of the number of known carers.
b) Average time it takes for carers to recognise their caring role.
Data source: Local data collection, for example, carer registration information and survey of carers. National data is collected in the Carers UK State of Caring survey.

What the quality statement means for different audiences

Health and social care organisations (such as general practices, hospitals, community services, local authorities, and private and voluntary sector care providers) ensure that policies, processes and systems are in place to identify carers and encourage them to recognise their role and rights, and to record and share their details. Health and social care organisations ensure that staff are aware of the importance and value of identifying carers. Health and social care organisations also work in partnership with other organisations in the community to encourage carers to recognise their role and rights through publicity and information sharing initiatives.
Health and social care practitioners (such as GPs, doctors, nurses, community pharmacists, mental health practitioners, social workers, allied health professionals, and care and support staff) use every opportunity to identify carers and ask people with care and support needs whether anyone gives them help or support. When a carer is identified, health and social care practitioners encourage them to recognise their role and rights and offer them the opportunity to have confidential conversations about their own needs separately from the person they are supporting. Health and social care practitioners record details of carers in local systems and share this information with other practitioners involved in providing care and support, with the carers’ consent.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that in the commissioning of services, opportunities are taken to identify carers and to encourage them to recognise their role and rights. Commissioners work with providers to ensure that systems are in place to record and share details of carers.
People providing unpaid care to someone aged 16 or over with health or social care needs are identified by health and social care practitioners and encouraged to recognise their role as a carer and their right to support and advice.

Source guidance

Supporting adult carers. NICE guideline NG150 (2020), recommendations 1.2.11 and 1.2.13

Definitions of terms used in this quality statement

Identify carers
Health and social care organisations ensure practitioners:
  • Use every opportunity to identify carers, including GP appointments, flu jab appointments, home visits, outpatient appointments, transfer to and from hospital, social care and other needs assessments, including admission and discharge assessments and planning meetings.
  • Ask people with care and support needs whether anyone gives them help or support, apart from paid practitioners. Avoid making assumptions about who might be providing their care and take into account that:
    • other people offering help or support may not be family members or may not live with the person
    • there may be more than 1 person involved in caring.
  • Record details about carers who have been identified (with their consent).
Health and social care organisations ensure practitioners understand that:
  • Carers themselves may not ask for support from certain professionals, for example GPs, because they may not view support for carers as being part of that professional's role.
  • Some people may not view themselves as a carer because:
    • becoming a carer can be a gradual process, and carers may not recognise the changing nature of their relationship with the person they support
    • carers may prefer to continue identifying primarily as a husband, wife, partner, sibling, parent, child or friend, rather than as a carer
    • carers often become engulfed by competing demands, including working and caring, and as a result may overlook their own needs as a carer and may not seek support
    • the person being supported may not accept that they have care and support needs
    • the carer does not live with the person or the person has moved away from home, for example into supported living or residential care.
[NICE’s guideline on supporting adult carers, recommendations 1.2.2, 1.2.3, 1.2.4 and 1.2.6]
Encourage carers to recognise their role and rights
Health and social care organisations ensure practitioners:
  • provide information to carers so that they know:
    • about their right to a carer's assessment, what this is, and the benefits of having one
    • how to obtain a carer's assessment
    • that some support may be means tested
    • that they can still access community support without formal assessment
  • encourage carers to recognise their caring role and seek support, explaining the benefits for both them and the person they care for, including:
    • the carer's role and contribution can be acknowledged, and their support needs addressed and
    • carers can share valuable knowledge about the person they care for, which helps practitioners provide the right care and support.
Health and social care organisations encourage carers to recognise their role and rights by using descriptions that they will relate to and including details of where to find further information and advice, through:
  • publicity campaigns involving local community services, for example posters and leaflets in GP surgeries, libraries and pharmacies
  • digital communications, social media and online forums that engage with carers
  • partnerships with community pharmacies, local carer support organisations and carer groups, for example in hospital settings
  • partnerships with local community organisations who can help disseminate information more widely, such as further education colleges, sports centres and supermarkets.
[NICE’s guideline on supporting adult carers, recommendations 1.2.1, 1.2.5 and 1.2.11]

Equality and diversity considerations

Health and social care practitioners should avoid making assumptions about who might be providing care based on their gender or their relationship to the person being cared for.
Health and social care practitioners should recognise that it may be more difficult for carers in some groups to identify as a carer and to seek support due to cultural and communication barriers. This includes young people, older people, people whose first language is not English, black and minority ethnic groups, and people who are lesbian, gay, bisexual or transgender.

Working with carers

This quality statement is taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

Quality statement

Carers are supported to actively participate in decision making and care planning for the person they care for.

Rationale

Carers have valuable skills and knowledge about the person they care for and are often key to understanding the person's needs and preferences. Carers value being recognised and respected as core members of the team around the person they care for. Providing the person gives consent and their wishes remain central, carers should be supported to actively participate in decision making and care planning for the person they care for. This will help to ensure that care planning is based on accurate and detailed information, as well as supporting the carer in their role and helping to sustain the caring arrangement. When people lack capacity to give consent, the involvement of carers should be in line with the Mental Capacity Act Code of Practice and the NICE guideline on decision-making and mental capacity.

Quality measures

Structure
a) Evidence that health and social care organisations have policies and processes to support carers to actively participate in decision making and care planning for the person they care for.
Data source: Local data collection, for example, audit of local policies and processes, which could include evidence from Care Quality Commission (CQC) inspections or evidence to support NHS England and NHS Improvement’s supporting carers in general practice: a framework of quality markers.
b) Evidence that health and social care organisations include evidence of the carer’s contribution in care plans and discharge plans.
Data source: Local data collection, for example, local templates for care plans and evidence from CQC inspections.
Outcome
a) Proportion of carers who feel they have been involved or consulted as much as they wanted to be in discussions about the support or services provided to the person they care for.
Numerator – the number in the denominator who feel they have been involved or consulted as much as they wanted to be in discussions about the support or services provided to the person they care for.
Denominator – the number of carers.
b) Proportion of carers who feel they have encouragement and support in their caring role.
Numerator – the number in the denominator who feel they have encouragement and support in their caring role.
Denominator – the number of carers.

What the quality statement means for different audiences

Service providers (such as general practices, hospitals, community services, local authorities, and private and voluntary sector care providers) ensure that staff are trained, and policies and processes are in place to support carers to actively participate in decision making and care planning for the person they care for. Service providers ensure that, when consent is given, care plans and discharge plans include evidence of the carer’s contribution.
Health and social care practitioners (such as GPs, doctors, nurses, community pharmacists, social workers, and care staff) check if the person being cared for gives consent for the carer to be involved. If consent is given, practitioners support carers to actively participate in decision making and care planning. Practitioners work closely with carers and ensure their knowledge about the person they care for is valued and considered.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that support carers to actively participate in decision making and care planning for the person they care for. Commissioners work with providers to monitor and improve carer satisfaction with their opportunity to actively contribute to decision making and care planning.
Carers are supported to be actively involved in decision making and care planning, if the person they care for agrees. Health and social care teams work closely with them and value their knowledge about the person they care for.

Source guidance

Supporting adult carers. NICE guideline NG150 (2020), recommendations 1.1.10 and 1.1.11

Equality and diversity considerations

Carers should be provided with information that they can easily read and understand themselves or with support. Information should be in a format that suits their needs and preferences, for example video or easy read information. It should be accessible to people who do not speak or read English, and it should be culturally and age appropriate. Carers should have access to an interpreter or advocate if needed. For carers 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.

Assessing carers' needs

This quality statement is taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

Quality statement

Carers having a carer’s assessment are given the opportunity to discuss what matters most to them, including their own health, wellbeing and social care needs, and work, education, or training.

Rationale

A statutory carer's assessment provides carers with psychosocial and emotional benefits and may be viewed as a therapeutic intervention. As such, it is important to ensure that the assessment focuses on what matters most to the carer and what will help them so that they can be better supported in their caring role. It should provide the opportunity to discuss all relevant aspects of their health, wellbeing and social care needs as well as work, education or training. It is important to ensure that the assessment is focused on the needs of the carer rather than the person they care for.

Quality measures

Structure
Evidence of local processes to ensure that carers having a carer’s assessment are given the opportunity to discuss what matters most to them, including their own health, wellbeing and social care needs, and work, education, or training.
Data source: Local data collection, for example, local protocol or assessment forms.
Process
a) Proportion of carers’ assessments that included the health, wellbeing, and social care needs of the carer.
Numerator – the number in the denominator that included the health, wellbeing, and social care needs of the carer.
Denominator – the number of carers’ assessments.
Data source: Local data collection, for example, local audit of client records.
b) Proportion of carers’ assessments that included the work, education, or training needs of the carer.
Numerator – the number in the denominator that included the work, education, or training needs of the carer.
Denominator – the number of carers’ assessments.
Data source: Local data collection, for example, local audit of client records.
Outcome
a) Proportion of carers who had a carer’s assessment who are satisfied that it reflects what matters most to them.
Numerator – the number in the denominator who are satisfied that it reflects what matters most to them.
Denominator – the number of carers who had a carer’s assessment.
Data source: Local data collection, for example, survey of carers.
b) Carer quality of life.
Data source: Local data collection, for example, survey of carers. NHS Digital’s personal social services survey of adult carers in England includes data on quality of life for carers who are in contact with local authorities. A carer-reported quality-of-life score based on these survey data is included in NHS Digital’s measures from the Adult Social Care Outcomes Framework.
c) Proportion of carers in paid work.
Numerator – the number in the denominator who are in paid work.
Denominator – the number of carers.
Data source: Local data collection, for example, survey of carers. NHS Digital’s personal social services survey of adult carers in England includes data on employment status for carers who are in contact with local authorities. As some carers will choose not to work, local areas should agree the expected performance in relation to this measure.

What the quality statement means for different audiences

Service providers (such as local authorities, private, not-for-profit and voluntary sector care providers) ensure that processes are in place for carers’ assessments to focus on what matters most to the carer and what will help them so that they can be better supported in their caring role. Providers ensure that carers’ assessments provide the opportunity to discuss all relevant aspects of their own health, wellbeing and social care needs including work, education or training. Providers ensure that staff who carry out carers’ assessments have training and skills in that role, including knowledge and understanding of potential opportunities for returning to, or remaining in, work, education or training.
Health and social care practitioners (such as social workers or voluntary sector staff) ask carers about what matters most to them during a carer’s assessment, including giving them the opportunity to discuss their own health, wellbeing and social care needs, and work, education or training. Practitioners discuss with carers what might help them so that they can be better supported in their caring role. Practitioners ensure that the assessment is jointly produced with the carer.
Commissioners (local authorities) commission services that carry out carers’ assessments that give carers the opportunity to discuss what matters most to them, including their health, wellbeing, and social care needs, and work, education or training, and any help they may need to support them in their caring role.
Carers who are having a carer’s assessment are given the opportunity to discuss what matters most to them, including their health and wellbeing and any help and support they may need. If they want to work, the assessment includes any support they may need to remain in, start or return to work, education or training.

Source guidance

Supporting adult carers. NICE guideline NG150 (2020), recommendations 1.3.2, 1.3.4 and 1.3.15

Definitions of terms used in this quality statement

Carer’s assessment
Anyone who is an unpaid carer for a family member or friend has the right to discuss their own needs with their local authority (or delegated organisation), separate to the needs of the person they care for. This is a statutory requirement under the Care Act 2014. Carers can discuss anything they think would help with their own health and wellbeing or with managing other aspects of their life, including their caring role. The local authority uses this information to support the carer and decide what help it can offer. The assessment is an ongoing, flexible process and includes any reviews undertaken. [NICE’s guideline on supporting adult carers, terms used in this guideline and expert opinion]

Equality and diversity considerations

Service providers that carry out carers’ assessments should make reasonable adjustments to ensure that carers with additional needs, such as physical, sensory or learning disabilities, and people who do not speak or read English, or who have reduced communication skills, can have an assessment that is accessible and takes account of their needs. People should have access to an interpreter (including British Sign Language) or advocate if needed.

Carers' breaks

This quality statement is taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

Quality statement

Carers are regularly given the opportunity to discuss with health and social care practitioners the value of having a break from caring and the options available to them.

Rationale

Many carers struggle to maintain their own wellbeing and often overlook their own needs because of their caring responsibilities. It is important for health and social care practitioners to remind carers regularly of the value of having a break from caring and the options available to them. This could include making time for themselves during their usual routines, through to carers’ breaks arranged with replacement care. Taking a break will improve the carers’ wellbeing and help them to continue in their caring role.

Quality measures

Structure
a) Evidence of local arrangements for health and social care practitioners to have regular discussions with carers about the value of having a break from caring and the options available to them.
Data source: Local data collection, for example, service protocols.
b) Evidence that accessible and up-to-date information about the local options for replacement care is available.
Data source: Local data collection, for example, leaflets and websites.
Outcome
a) Proportion of carers who used support or services to take a break from caring.
Numerator – the number in the denominator who used support or services to take a break from caring.
Denominator – the number of carers.
Data source: Local data collection, for example, carer survey.
b) Carer quality of life.
Data source: Local data collection, for example, survey of carers or carer wellbeing assessments. NHS Digital’s personal social services survey of adult carers in England includes data on quality of life for carers who are in contact with local authorities. A carer-reported quality-of-life score based on these 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 (such as general practices, hospitals, community services, local authorities, and private, not-for-profit and voluntary sector care providers) ensure that arrangements are in place for practitioners to have regular discussions with carers about the value of having a break from caring and can signpost them to or discuss the options available to them. Providers ensure that staff know how to make suggestions about how carers can make time for themselves during their usual routines, as well as knowing how and where to access up-to-date information about the local options for replacement care.
Health and social care practitioners (such as GPs, community pharmacists, doctors, nurses, social workers, mental health practitioners, occupational therapists, and care workers) regularly remind carers of the value of having a break from caring and encourage them to take a break. Practitioners tell carers how important it is for them to make time for themselves during their usual routines as well as considering the need for a break using replacement care. Practitioners provide or signpost carers to up-to-date information about the local options for replacement care to meet their specific needs.
Commissioners (such as clinical commissioning groups, local authorities, and NHS England) commission services that ensure practitioners regularly discuss with carers the value of having a break from caring and the options available to them. Commissioners work with providers to record data about unmet need for carers’ breaks to enable them to commission services that provide reliable replacement care with sufficient capacity and flexibility to meet carers’ needs.
Carers have a discussion with their health or social care practitioner about the value of taking a break from caring, including making sure that they make time for themselves in their usual routine. They are also given or directed to information about any services that can provide reliable alternative care locally to meet their specific needs.

Source guidance

Definitions of terms used in this quality statement

Options for having a break from caring
Services that provide carers’ breaks, including respite care, provide short-term care for the person with care needs in their own home or in a residential setting. This can mean a few hours during the day or evening, overnight, or a longer-term break. Carers' breaks may be one-off or more regular arrangements.
Carers' breaks should:
  • meet carers' needs for a break, for example in duration, timing, frequency and type of break
  • be arranged in a way that provides reliable and consistent support to the carer (such as avoiding last-minute changes that could lead to additional stress for the carer).
[NICE’s guideline on supporting adult carers, recommendation 1.5.3 and terms used in this guideline]

Equality and diversity considerations

Carers should be provided with information about replacement care that they can easily read and understand themselves or with support. Information should be in a format that suits their needs and preferences, for example video or easy read information. It should be accessible to people who do not speak or read English, and it should be culturally and age appropriate. Carers should have access to an interpreter or advocate if needed. For carers 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.
Services that provide replacement care and support for carers to have a break should make reasonable adjustments to ensure that people with additional needs, such as physical, sensory or learning disabilities, and people who do not speak or read English, or who have reduced communication skills, can use the service. The service provided should be culturally and age appropriate.

Helping carers stay in work

This quality statement is taken from the supporting adult carers quality standard. The quality standard defines best practice for supporting adult carers and should be read in full.

Quality statement

Carers are offered supportive working arrangements by workplaces.

Rationale

If a carer needs to give up work to care for someone, it can have a detrimental economic, social and psychological impact on them. Employers can help carers to remain in employment and reduce stigma by offering supportive working arrangements. This can, in turn, benefit employers by improving staff retention and satisfaction and creating a more diverse workforce. It can also demonstrate that they are meeting the requirement of the Equality Act 2010 to actively promote a positive culture towards people with caring responsibilities.

Quality measures

Structure
a) Evidence that workplaces have policies, plans and processes in place to support carers.
Data source: Local data collection, for example, a review of the organisation’s policies and plans.
b) Evidence that workplaces offer supportive working arrangements for carers.
Data source: Local data collection, for example, employee terms and conditions and employee benefits.
Outcome
a) Proportion of carers in paid work.
Numerator – the number in the denominator who are in paid work.
Denominator – the number of carers.
Data source: Local data collection, for example, survey of carers. NHS Digital’s personal social services survey of adult carers in England includes data on employment status for carers who are in contact with local authorities. As some carers will choose not to work, local areas should agree the expected performance in relation to this measure.
b) Proportion of carers in paid work who feel supported by their employer.
Numerator – the number in the denominator who feel supported by their employer.
Denominator – the number of carers in paid work.
Data source: Local data collection, for example, survey of carers. NHS Digital’s personal social services survey of adult carers in England includes data on carers in paid employment who feel supported by their employer for carers who are in contact with local authorities.

What the quality statement means for different audiences

Employers have policies and plans in place to support employees who are carers, including offering supportive working arrangements. Employers ensure that managers are aware of how they can help employees to balance caring with work.
Line managers ensure that staff are aware of supportive working arrangements that can help them if they need to balance caring responsibilities with work.
Carers who are in work can use flexible working arrangements and support and advice from their employer to help them balance caring with work.

Source guidance

Definitions of terms used in this quality statement

Supportive working arrangements
Workplaces should offer flexible working arrangements and other policies and initiatives that support mental wellbeing, such as:
  • flexible hours
  • fixed hours or shifts
  • carers’ leave
  • permission to use a mobile phone
  • technology to allow flexible working
  • providing a private space to take personal phone calls
  • staff carers’ network
  • employee assistance programmes.
[NICE’s guideline on supporting adult carers, recommendations 1.4.5 and 1.4.6, the rationale and impact section on flexibilities to support employment, and expert opinion]

Identification

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults who are likely to be approaching the end of their life are identified using a systematic approach.

Rationale

Using a systematic approach enables healthcare professionals to identify adults who are likely to be approaching the end of their life in a timely manner. Once recognised as approaching the end of their life, people can have their needs assessed and managed, and their carers and the people important to them can also be offered support. Timely recognition gives people the opportunity to make informed decisions about their care, make plans for their future and establish their preferences for how and where they would like to be cared for and die.

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.
No routinely collected national data for these measures has been identified, therefore some examples of potential data sources have been suggested.
Structure
Evidence of local systems established to systematically identify adults who are likely to be approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on identification of adults approaching the end of their life, including the use of tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Outcome
The proportion of adults who have died with progressive life-limiting conditions who were on the palliative care register or had evidence of end of life care planning.
Numerator – the number in the denominator who were on the palliative care register or had evidence of end of life care planning.
Denominator – the number of adults who have died with progressive life-limiting conditions.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. Quality Outcomes Framework indicator PC001 requires the contractor to establish and maintain a register of all patients in need of palliative care or support irrespective of age.

What the quality statement means for different audiences

Service providers (such as care homes, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place and staff are trained to identify adults who are likely to be approaching the end of their life. Staff can access and use tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, pharmacists, GPs, specialists and nurses) are aware of, and use, local systems to identify adults who are likely to be approaching the end of their life. They use their clinical judgement and tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that use a systematic approach to identify adults who are likely to be approaching the end of their life and ensure their staff are trained to do so.
Adults who are likely to be approaching the end of their life are identified by the health and social care practitioners caring for them. This means that they can have their care and support needs assessed and start to have discussions about the care and treatment they might want in the future.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition
  • life-threatening acute conditions caused by sudden catastrophic events.
Systematic approach to identifying adults who are likely to be approaching the end of their life
Adults who are approaching the end of their life can be identified using tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool. There are other ways healthcare professionals may recognise when adults are likely to be approaching the end of their life, for example, if they are moving from disease-modifying treatment to palliative care for a life-limiting health condition or through reviews for frailty with coexisting conditions. [Adapted from NICE’s guideline on end of life care for adults, recommendation 1.1.1, and expert opinion]

Advance care planning

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life have opportunities to discuss advance care planning.

Rationale

Advance care planning gives people the opportunity to have meaningful, person-led discussions that allow them to make specific decisions and plans for their future care within a structured framework and while they have the capacity to do so. This should happen after a holistic needs assessment to ensure that it fully takes into account all of the things that are important to the person.
Advance care planning is an ongoing process, so the advance care plan may change over time, based on the person’s circumstances and wishes. It is important that the advance care plan is documented and updated during each discussion to ensure the person’s current plans are in place. Early planning for care at the end of life helps to ensure that carers, families and professionals are aware of a person's wishes while they are still fully able to communicate them.

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 of local arrangements to ensure that adults approaching the end of their life have opportunities to discuss advance care planning.
Data source: Data can be collected from information recorded locally by health and social care practitioners and provider organisations, for example, from service specifications or local protocols on advance care planning.
b) Evidence of local arrangements to ensure that advance care planning for adults approaching the end of their life takes into account their holistic needs assessment.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on advance care planning.
Process
a) Proportion of adults approaching the end of their life who have documented discussions about advance care planning.
Numerator – the number in the denominator who have documented discussions about advance care planning.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. The National Audit of Care at the End of Life measures the number of people with an advance care plan on arrival at their final admission to hospital.
b) Proportion of adults approaching the end of their life whose documented advance care plan takes into account their holistic needs assessment.
Numerator – the number in the denominator whose documented advance care plan takes into account their holistic needs assessment.
Denominator – the number of adults approaching the end of their life who have a documented advance care plan.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audit of patient records.
Outcome
Satisfaction of adults approaching the end of their life with the support they receive to plan their future care.
Numerator – the number in the denominator who are satisfied with the support they receive to plan their future care.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through face-to-face discussions with adults approaching the end of their life and their carers, from local patient and carer experience surveys, and from bereavement surveys.

What the quality statement means for different audiences

Service providers (such as care homes, hospices, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place to give adults approaching the end of their life opportunities to have discussions about advance care planning. The staff carrying this out are trained to recognise when adults are approaching the end of their life and to have these person-led discussions.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, GPs, specialists and nurses) give adults approaching the end of their life opportunities to discuss advance care planning that takes into account their holistic needs assessment. They ensure that advance care planning is an ongoing process, and that advance care plans are reviewed as the person’s condition, circumstances or wishes change. They ensure that if the person does not wish to have this discussion at all, this is recorded and their wishes respected.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that that they commission services in which adults approaching the end of their life are offered advance care planning, taking into account the holistic needs assessment, on an ongoing basis as their condition, circumstances or wishes change. The services they commission ensure that their staff are trained to discuss and record advance care planning, including if the person does not wish to have the discussion at all.
Adults approaching the end of their life are given opportunities to talk to health or social care staff about the things that are important to them and use this to help plan for the care and treatment they want in the future. As their wishes may change over time, adults approaching the end of their life will be able to have these conversations on a number of occasions, if they want to, to ensure their plans reflect their current wishes. If they do not feel ready to have this discussion, the person can have this discussion at a later date. If they do not wish to have this discussion at all, this is recorded and their wishes respected.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition
  • life-threatening acute conditions caused by sudden catastrophic events.
Advance care planning
Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.
An advance care planning discussion might include:
  • the individual's concerns and wishes
  • their important values or personal goals for care
  • their understanding about their illness and prognosis
  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.
Advance care planning is one part of the process of personalised care and support planning.
Holistic needs assessment
An assessment that considers all aspects of a person's wellbeing, their spiritual and health and social care needs. Undertaking a holistic needs assessment ensures that the person's goals and wishes, concerns and problems are identified so that support can be provided to address them. There are validated tools that can be used to support the assessment process. [NICE’s guideline on end of life care for adults, terms used in this guideline and expert opinion]

Equality and diversity considerations

A person’s culture and religious beliefs may have a significant influence on whether they wish to discuss end of life and advance care planning. Practitioners need to approach these discussions in a sensitive way. If people do not want to speak about their future needs and care arrangements, this should be respected and clearly recorded.
Adults approaching the end of their life should be supported to discuss advance care planning in a meaningful way. They should be provided with information in a format that they can easily understand themselves, or with support, so they can communicate effectively with health and social care 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 it should 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.

Coordinated care

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life receive care that is coordinated between health and social care practitioners within and across different services and organisations.

Rationale

Adults approaching the end of their life are likely to receive planned and emergency care from a range of services and in a number of settings. Coordination of these services is necessary to ensure that there is a shared understanding of the person’s holistic needs and that the person receives end of life care that meets their specific needs and personal preferences. Coordination also leads to care being provided more quickly, as it is needed.
Information sharing across organisations will help to ensure that adults approaching the end of their life do not have to repeatedly provide information that can be shared between services. Coordination will help to ensure that people are not over-burdened with appointments and home visits. Appointments can be reviewed and optimised if possible, for example, coordinating appointments to avoid multiple visits.

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 of local processes to coordinate end of life care.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from service specifications and joint working agreements between health and social care. This could include processes to ensure appointments with different specialities are on the same day to avoid the person making repeated visits.
b) Evidence of local arrangements for relevant information about adults approaching the end of their life to be shared with the members of the multipractitioner team involved in their care.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local information-sharing protocols and electronic information-sharing systems.
Process
a) Proportion of adults approaching the end of their life whose advance care plan is shared with the practitioners involved in their care.
Numerator – the number in the denominator whose advance care plan is shared with the practitioners involved in their care.
Denominator – the number of adults approaching the end of their life who have an advance care plan.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records.
b) Proportion of adults approaching the end of their life whose care is coordinated through the multipractitioner team.
Numerator – the number in the denominator whose care is coordinated through the multipractitioner team.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records and of multipractitioner team and multidisciplinary team meetings.
Outcome
a) Proportion of adults approaching the end of their life who are cared for in their preferred place.
Numerator: the number in the denominator who are cared for in their preferred place.
Denominator: the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through face-to-face discussions with adults approaching the end of their life and their carers, local patient and carer experience surveys and bereavement surveys.
b) Proportion of adults who were identified as approaching the end of their life who had an unplanned admission to hospital.
Numerator: the number in the denominator who had an unplanned admission to hospital.
Denominator: the number of adults identified as approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through local audit of hospital admissions data and patient records, local patient and carer experience surveys and bereavement surveys.
c) Proportion of adults who were identified as approaching the end of their life who died in their preferred place.
Numerator: the number in the denominator who died in their preferred place.
Denominator: the number of adults identified as approaching the end of their life who have died.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audit of patient records, local carer experience surveys and bereavement surveys. The National Audit of Care at the End of Life measures the number of people who have a documented preferred place of death on their final admission.

What the quality statement means for different audiences

Service providers (such as care homes, hospices, ambulance services, mental health care, social care, community care, primary care, secondary care and tertiary care) ensure that electronic information-sharing systems are in place so that all practitioners providing care can access up-to-date records and advance care plans. They also ensure that systems are in place so that the multipractitioner team can coordinate care, including coordinating appointments, for people who are approaching the end of their life.
Health and social care practitioners (such as care home staff, social workers, mental health clinicians, occupational therapists, pharmacists, paramedics, GPs, specialists and nurses) work with other members of the multipractitioner team to coordinate the care of adults who are approaching the end of their life. They ensure that all relevant information is added to the person’s record and advance care plan so that it can be accessed by other practitioners involved in the person’s care when needed.
Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that the services they commission have electronic information-sharing systems in place to allow all practitioners providing care to access the records of adults approaching the end of their life. This can be done, for example, by enabling existing IT systems or by introducing a specific system such as the electronic palliative care coordination system (EPaCCS). They also ensure that the services provide multipractitioner team care and care coordination for adults approaching the end of their life.
Adults approaching the end of their life are cared for by a team of health and social care practitioners who work together to coordinate their care and make sure that important information is passed on. This means that the person does not need to keep providing the same information to different people caring for them or attend several appointments on different days that could take place in one visit.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition
  • life-threatening acute conditions caused by sudden catastrophic events.
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]
Multipractitioner team
A multipractitioner team is a group of practitioners from different clinical professions, disciplines, organisations and agencies who together make decisions on the recommended treatment for individual patients. [NICE’s guideline on end of life care for adults, terms used in this guideline]

Out-of-hours care

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Adults approaching the end of their life and their carers have access to support 24 hours a day, 7 days a week.

Rationale

Adults approaching the end of their life may need support from healthcare services at any time. Being able to access support, including specialist palliative care, as soon as the need arises can help to prevent unnecessary distress to the person approaching the end of their life and their carers by preventing unnecessary visits to accident and emergency departments and hospital admissions. It is also beneficial and supportive for carers to know that they can obtain advice at any time of day or night, and this can help to reduce their concerns and anxieties.

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 of local arrangements to ensure that adults approaching the end of their life have access to support 24 hours a day, 7 days a week.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local service specifications for end of life care and staff rotas.
Process
a) Proportion of adults approaching the end of their life who have access to a healthcare professional 24 hours a day, 7 days a week.
Numerator – the number in the denominator who have access to a healthcare professional 24 hours a day, 7 days a week.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
b) Proportion of adults approaching the end of their life who have access to an out-of-hours end of life care advice line.
Numerator – the number in the denominator who have access to an out-of-hours end of life care advice line.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
c) Proportion of adults approaching the end of their life who have access to an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
Numerator – the number in the denominator who have access to an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
Denominator – the number of adults approaching the end of their life.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records, local patient and carer experience surveys and bereavement surveys.
Outcome
a) Emergency hospital admissions in the 3 months before death.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local audits of patient records and Public Health England’s Palliative and end of life care data.
b) Satisfaction of the person approaching the end of their life, and their carers if appropriate, with the support available.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local patient and carer experience surveys, bereavement surveys and NHS Digital’s Personal social services survey of adult carers.

What the quality statement means for different audiences

Service providers (such as hospices, community care, primary care, secondary care and tertiary care) ensure that services are in place to support adults approaching the end of their life and their carers 24 hours a day, 7 days a week. This includes ensuring that a healthcare professional who can access the person’s records and advance care plan is available, and that they have access to equipment out of hours, for example, specialist beds and oxygen. It also includes providing an advice line and an out-of-hours pharmacy service with access to end of life care medications.
Health and social care practitioners (such as social workers, mental health clinicians, pharmacists, GPs, specialists and nurses) ensure that adults approaching the end of their life and their carers know about the services that are available to them 24 hours a day, 7 days a week and know how to contact them. They ensure that adults approaching the end of their life and their carers understand how these services can support them. Practitioners can also access the support services to assist adults approaching the end of their life and their carers.
Commissioners (such as clinical commissioning groups and NHS England) ensure that they commission services that are available 24 hours a day, 7 days a week for adults approaching the end of their life and their carers, including an advice line and access to healthcare professionals and pharmacy services.
Adults approaching the end of their life and their carers can access support when they need it. They have access to an advice line, healthcare professionals and a pharmacy service that has medicines to manage their symptoms at any time of the day or night.

Source guidance

Definitions of terms used in this quality statement

Adults approaching the end of life
Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.
This includes people with:
  • advanced, progressive, incurable conditions
  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition
  • life-threatening acute conditions caused by sudden catastrophic events.
Access to out-of-hours support
This includes:
  • a healthcare professional available 24 hours a day, 7 days a week, who can access the person's records and advance care plan, and make informed decisions about changes to care
  • an out-of-hours end of life care advice line
  • an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.
[Adapted from NICE’s guideline on end of life care for adults, recommendation 1.12.1]

Equality and diversity considerations

Adults approaching the end of their life and their carers should be provided with information about the services available to them in a format that they can easily understand themselves, or with support, so they can communicate effectively with health and social care practitioners. The information should be in a format that suits their needs and preferences. The information and the services should be accessible to people who do not speak or read English, and it should be culturally appropriate 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.

Support for carers

This quality statement is taken from the end of life care for adults quality standard. The quality standard defines clinical best practice for end of life care for adults and should be read in full.

Quality statement

Carers providing end of life care to people at home are supported to access local services that can provide assistance.

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:
  • replacement care (care that replaces the care normally given by a regular carer)
  • palliative home care
  • practical support, for example, to use equipment and adaptations
  • additional help in the home
  • support if the person they care for is admitted to hospital
  • emotional support.
[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.

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

NICE has produced resources to help implement its guidance on:

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

Carers' assessments

Anyone who is an unpaid carer for a family member or friend has the right to discuss their own needs with their local authority, separate to the needs of the person they care for. This is a statutory requirement under the Care Act 2014. Carers can discuss anything they think would help with their own health and wellbeing or with managing other aspects of their life, including their caring role. The local authority uses this information to decide what help it can offer.

Carer's assessment

Anyone who is an unpaid carer for a family member or friend has the right to discuss their own needs with their local authority, separate to the needs of the person they care for. This is a statutory requirement under the Care Act 2014. Carers can discuss anything they think would help with their own health and wellbeing or with managing other aspects of their life, including their caring role. The local authority uses this information to decide what help it can offer.

Carers' breaks

These services, which would include respite care, give carers a break by providing short-term care for the person with care needs in their own home or in a residential setting. This can mean a few hours during the day or evening, overnight, or a longer-term break. Carers' breaks may be one-off or more regular arrangements. They can also benefit the person with care needs by giving them the chance to try new activities and meet new people.

Carer champion

A designated member of staff (for example in a GP surgery, hospital, workplace, leisure or similar setting) who is given the task of supporting and speaking up for carers. They can act as a key contact for carer information and advice in that setting, providing knowledgeable, expert advice as well as training other practitioners working within the service.

Carer champions

A designated member of staff (for example in a GP surgery, hospital, workplace, leisure or similar setting) who is given the task of supporting and speaking up for carers. They can act as a key contact for carer information and advice in that setting, providing knowledgeable, expert advice as well as training other practitioners working within the service.

Carer support plan

If a carer is identified as having eligible needs following an assessment under the Care Act 2014, the local authority must provide a support plan that sets out how those needs will be met. The support plan must be developed in partnership with the carer and should set out the outcomes the carer hopes to achieve, including their wishes around providing care and accessing work, education and leisure. The support plan must be regularly reviewed.

Peer support

Peer support involves carers sharing experiences, practical advice and emotional support and improving their understanding of the options available to them and the person they care for. Peer support can take a number of different forms, including one-to-one friendships and support based on lived experience and contact through third sector organisations, support groups or online networks. Peer support is often but not always provided by volunteers, for example volunteer befrienders.

Replacement care

Care that replaces the care normally given by a regular carer. It may be needed either on a planned basis or in an emergency. Replacement care may be offered by the local authority, if the person needing care has had an assessment and is entitled to care and support services, or if the carer is entitled to help. Otherwise, people may have to pay for it.

Glossary

(a carer is an adult (aged 18 or over) who provides unpaid care and support to a family member, partner or friend (aged 16 or over) because of a disability, health condition, frailty, mental health problem, addiction or other health or social care need)
(a carer is an adult (aged 18 or over) who provides unpaid care and support to a family member, partner or friend (aged 16 or over) because of a disability, health condition, frailty, mental health problem, addiction or other health or social care need)

Paths in this pathway

Pathway created: January 2020 Last updated: September 2021

© NICE 2021. All rights reserved. Subject to Notice of rights.

Recently viewed