Supporting adult carers

Local authorities should provide information to carers to support them in their caring role. Information provision must meet the requirements of the Care Act 2014.

Practitioners in health and social care (including healthcare professionals in primary and secondary care, social care practitioners, care and support workers and personal assistants) should use every opportunity to tell carers they have a right to information and support and how to get it (see section 1.2).

Information for carers should be up to date and cover:

• the range of support and advice recommended in this guideline

• how to access social and community support for carers (see section 1.5)

• useful further sources of information and support such as carer groups and forums.

Discuss information with carers as well as giving them written materials. When providing information:

• ensure it is plainly worded, clearly presented and free of jargon

• be aware that smaller, more manageable chunks of information are easier to remember, and that visual aids or pictures can be useful

• encourage the carer to ask questions

• ensure that information is consistent.

Make information available in a range of formats to meet carers' needs and preferences, for example written leaflets, links to online and digital resources (including local and national websites and forums and social media) and information in accessible formats or different languages. For more about accessible communication see NHS England's Accessible Information Standard.

Take into account that carers' information needs will change over time and whenever their circumstances or caring role change. Provide information and advice that addresses the carer's individual needs at the time when they need it and that helps them plan and prepare.

Offer to revisit discussions or provide the same information several times if needed, for example if there is a lot of complicated information to digest or the carer is experiencing emotional stress.

Practitioners responsible for providing and discussing information with carers should have the knowledge, time and communication skills to do so.

Primary care providers and primary care networks should explore ways of offering and promoting services to carers, including through partnership working (for example, working with local carer support services or nominating carer champions).

Health and social care organisations should promote ways of working with carers that acknowledge them as expert partners in care and value their skills and knowledge about the person they care for. These approaches should be incorporated into formal policies and processes.

Health and social care practitioners should work in partnership with carers and treat them as a valued member of the care team around the person being cared for, with the person's consent. This should include involving carers in decision making and care planning and keeping them up to date.

During discussions with carers about the person they are caring for:

• take into account the mental capacity of the person being cared for and their wishes around confidentiality (see NICE's guideline on decision making and mental capacity)

• share with carers the information they need to provide care effectively and safely while respecting confidentiality (explain to them the constraints of confidentiality).

Be open and honest with carers about the health condition, disability or needs of the person they care for (with the person's consent), including when information is difficult or upsetting. Explain how it is likely to progress so that carers understand how their caring role might change in the future.

Actively seek to identify carers (in line with the requirements of the Care Act 2014) and ensure 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.

Use every opportunity to identify carers, including GP appointments, flu jab appointments, home visits, outpatient appointments, social care and other needs assessments, including admission and discharge assessments and planning meetings. Record details about carers you have identified (with the carer's consent).

Take into account 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.

When identifying carers, be aware that 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.

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.

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. 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.

Practitioners involved in transferring people to and from hospital should seek to identify carers and refer them to appropriate services.

• Follow recommendations on support for families, parents and carers throughout admission in NICE's guideline on transition between inpatient mental health settings and community or care home settings and

• Follow recommendations on discharge from hospital in NICE's guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.

Offer carers the opportunity to have confidential conversations about their own needs as carers separately from the person they are supporting.

If a person who has care and support needs is also identified as having caring responsibilities, their care and support needs assessment should take account of this. They should also be offered a carer's assessment to identify their needs as a carer. Assessments must meet the requirements of the Care Act 2014.

Ensure that carers who don't want or need a statutory carer's assessment are still offered information about how to access support.

Health and social care organisations should encourage people to recognise their role and rights as carers 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.
  
  Use descriptions that carers will relate to and include details of where to find further information and advice.

Consider nominating a carer champion to help implement the recommendations in this guideline and Care Act 2014 requirements in relation to identifying carers.

Health and social care organisations should ensure their policies and systems encourage the identification of carers, including by developing formal processes to help them do so.

Ensure that all staff likely to come into contact with carers understand their responsibilities under the Care Act 2014 in relation to identifying carers.

Local authorities, and social care organisations delegated by local authorities to carry out carers' assessments, should make arrangements for and carry out assessments in cooperation with other relevant health and social care organisations (in accordance with the Care Act 2014 and associated Care and support statutory guidance and the Children and Families Act 2014).

Practitioners from health and social care carrying out or contributing to carers' assessments should work together to ensure that:

• the assessment covers all relevant aspects of health, wellbeing and social care needs and

• details of the assessment are shared with other practitioners and organisations who are involved in the assessment.

Health and social care organisations should ensure that practitioners who carry out or contribute to carers' assessments have training and skills in that role and access to specialist advice.

The carer's assessment should be jointly produced with the carer and reflect what matters most to the carer and what might help them achieve this.

Be aware that a well-conducted carer's assessment may in itself be a therapeutic intervention or a means of preventing future problems.

Arrange the timing of the carer's assessment according to the carer's preferences and the urgency of their need for support. For example, take into account:

• whether the person they care for is near the end of life

• the level of stress the carer is experiencing

• the timing of hospital discharge

• changes to the caring role

• any negative impact of delays on the health and wellbeing of the carer.

Provide flexibility in how, when and where carers' assessments are carried out, taking into account individual preferences and accommodating their caring responsibilities, working patterns and other circumstances.

Ensure that the assessment process is accessible, easy to navigate and complete, and tailored to individual needs, with information provided in a format that carers can understand.

Before a carer's assessment takes place, share information with the carer that helps them prepare.

Discuss caring in the context of the carer's own family and support networks, for example whether they share caring responsibilities with other people and whether they care for more than 1 person.

Discuss with carers the option to combine or link their assessment with the assessment of the person they care for, if they both choose to do this.

Do not make assumptions about the willingness and the ability of carers to carry out caring tasks when completing assessments for the carer or the person they care for.

If a carer's needs have been identified during a hospital-based assessment:

• inform the local authority (and/or any delegated care organisation) that a carer's needs have been identified

• ensure an effective process is in place to link the hospital-based carer's assessment with the community-based statutory assessment, to avoid duplication and so that meaningful support for carers is provided during transfer from hospital (including during a crisis).

Ensure that replacement care is discussed as part of carers' assessments, including planning for any emergency replacement care that might be needed, for example if the carer becomes suddenly unwell.

Discuss education, training and employment with carers during their carer's assessment. Explore the options and the support they need to remain in, start or return to work, training or education. This could include providing replacement care at home.

Ensure that practitioners carrying out carers' assessments have the necessary skills, knowledge and understanding of potential opportunities for returning to, or remaining in work, education and training.

Give carers tailored information about community services and support that could help them remain in, start or return to work.

Ensure there are clearly identified outcomes for the carer after their assessment.

After an assessment:

• ensure the carer understands the actions that have been agreed and what the next steps will be and

• share information (as appropriate) with other practitioners and organisations involved with the carer and the person they care for.

If a carer support plan is developed as a result of a carer's assessment, ensure it is monitored and reviewed regularly.

Local authorities should ensure carers have access to tailored advice about balancing work, education or training with caring, including associated benefits and welfare advice.

Services providing welfare rights advice or back-to-work or education training should develop a good understanding of carer needs, for example by appointing a named carer champion who can provide knowledgeable, expert advice and train other practitioners in the service.

Services providing welfare rights advice or back-to-work or education training should help carers recognise that the skills they have gained through caring are transferable, and support them to describe their skills in a way that will appeal to employers.

Workplaces should make information available to their staff about ways in which they can support employees who need to balance caring responsibilities with work. See NICE's guideline on workplace health.

Practitioners should encourage carers to discuss supportive working arrangements with their employers, including adjustments to make caring possible. Examples might include flexible hours, fixed hours or shifts, carers' leave, permission to use a mobile phone, technology to allow flexible working, or providing a private space to take personal phone calls.

Workplaces should offer flexible working arrangements to enable staff to balance caring responsibilities with work, and other initiatives that support mental wellbeing for carers in line with the NICE guidelines on workplace health and mental wellbeing at work.

Workplaces should ensure that staff with caring responsibilities have equal access to career development. At a minimum, workplaces must meet the requirements set out in the Equality Act 2010 in relation to people with caring responsibilities.

Health and social care organisations should offer flexibility when arranging appointments for working carers and the person they care for. Examples include workplace surgeries, carer appointments outside of office hours, digital access and telephone appointments.

Carer support services should work closely with employers and employee assistance programmes to make advice and information for carers available within the workplace.

Commissioners should be aware of the benefits of replacement care for supporting carers to stay in, enter or return to work, education and training when designing and delivering support services for carers.

Commissioners should ensure that replacement care services are available locally for carers who need to access them to stay in, enter or return to work, education or training, including for those who fund their own support.

Ensure that replacement care is flexible and provides a choice of options to meet all levels of carer need, including for those who care for more than 1 person or who care for over 20 hours a week.

Review replacement care often enough to respond to changes in people's working patterns and career development.

Local authorities should ensure carers are kept regularly informed about available community services and other sources of support and advice and how to access them, for example:

• local carer support services

• self-help groups

• community and faith groups

• specialist benefits, financial and legal advice

• financial support

• advice about self-care

• where to find reliable information about the health condition of the person they are caring for.

Health and social care practitioners should regularly discuss with carers the value of having a break from their caring role and explain the options available.

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).

Tell carers about peer support and how to access it locally. Explain that peer support can help reduce a sense of isolation, provide empathy and social and emotional support, and enable them to share information.

Consider extending support services for people when their caring role is finished, including through peer support groups.

Local authorities should provide information to carers about how to access advocacy support services. Access to advocacy services should meet the requirements of the Care Act 2014 and the Mental Capacity Act 2005.

If carers choose to have an advocate or representative to support them, health and social care practitioners should recognise this person's contribution and include them in discussions.

Offer carer training programmes that are:

• designed to improve carers' knowledge and coping skills

• accessible and available in a variety of formats, including printed or online materials or face to face

• tailored to the needs of carers

• delivered by practitioners with relevant knowledge and skills.

Training programmes for carers should include the following components, as relevant:

• general education about the health condition, disability or needs of the person they care for

• skills training to help them provide care, including how to understand and respond to changes in mood and behaviour

• principles of self-care

• training in communication skills to improve interactions with the person they care for

• advice on planning enjoyable and meaningful activities with the person they care for

• information about relevant services and how to access them

• future planning, including preparing for transitions.

Consider including the following in carer training programmes, as relevant:

• managing medicines

• managing diet and nutrition

• maintaining personal hygiene

• managing behaviour that challenges

• use of digital and assistive technology

• specific information that carers need to enable them to remain safe in their caring role.

Ensure that training programmes for carers are inclusive and address the needs and preferences of diverse groups, such as lesbian, gay, bisexual and transgender carers, and carers from diverse ethnic, religious and cultural backgrounds.

Training programmes for carers should provide a balance between learning, enjoyment, a chance to meet other carers and opportunities for peer support.

Encourage carers to keep in touch with each other after they have attended a training programme and suggest ways they could do this.

Health and social care practitioners should involve carers during assessments for equipment and adaptations.

Health and social care practitioners should ensure carers have access to advice, guidance and training about appropriate use of equipment and adaptations, and safe moving and handling techniques.

Consider providing carers with psychosocial and psychoeducational support, which should include:

• developing personalised strategies and building carer skills

• advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing

• information about emotional support services and psychological therapies for carers and how to access them.

Ensure that the range of psychosocial and psychoeducational support offered to carers includes group-based options.

Recognise that psychosocial and psychoeducational support may be needed at different stages of the caring experience and ask carers regularly whether they feel they would benefit from it.

Arrange the timing of psychosocial or psychoeducational support to suit carers' circumstances, taking into account other commitments such as work or other caring and family responsibilities.

When providing psychosocial or psychoeducational support to carers, take into account:

• the carer's preferred location

• whether they need support to attend (for example a practitioner to go with them)

• physical accessibility (such as help needed with transport)

• if replacement care is needed

• the carer's preferred format

• the cultural appropriateness of the intervention

• what follow-up will be needed.

If a carer has an identified mental health problem, consider:

• psychotherapy and counselling interventions in line with existing NICE guidance (see NICE's topic page for mental health and behavioural conditions) or

• referral to a GP or mental health professional who can provide interventions in line with existing NICE guidance.

Offer carers frequent opportunities for discussion and help them to understand information about the diagnosis and prognosis of the person they care for (with the person's consent). Use a sensitive manner during these discussions and avoid jargon.

Health and social care practitioners involved in providing end of life care should be competent to have conversations with carers about death and dying.

Practitioners should establish early contact with carers involved in providing end of life care. Discuss with carers how best to support them, taking into account that unsatisfactory early contact with health and social care services can have a long-lasting negative impact on carers involved in providing end of life care.

Health and social care practitioners, including home care workers, should recognise that carers can find it hard to accept help at home when they are providing end of life care and can find it invasive.

Provide continuity during end of life care with the same professional care staff wherever possible, so that the carer and the person they care for can build a relationship with the staff supporting them.

Encourage carers who are caring for someone near the end of their life to think about ways they can get support from their family, friends, employer and wider social network.

Involve carers in advance care planning if the person being cared for consents to this. For recommendations about involving carers in advance care plans for people who may lack mental capacity, see NICE's guideline on decision making and mental capacity.

When making an advance care plan that includes responsibilities for carers, consider the wishes of any current or future carers who have been named in the plan.

Ensure the carer has a clear understanding of their role as part of the advance care plan. Share advance care plans in a clear and simple format with everyone involved in the person's care.

When managing medication and other care at the end of life, follow the principles of involving carers and the dying person described in NICE's guideline on care of dying adults in the last days of life.

During a structured medication review, as described in recommendations on medication review in NICE's guideline on medicines optimisation, take into account:

• the person's, and their family members' or carers' where appropriate, views and understanding about their medicines

• the person's, and their family members' or carers' where appropriate, concerns, questions or problems with the medicines.

Help carers who are providing end of life care at home to access local services that could support them, including from local hospices. This could include:

• replacement care

• palliative home care

• practical support, for example to use equipment and adaptations

• additional help in the home.

Provide privacy and dignity for people dying in hospital and their carers. This could include offering them a private room or, if this is not possible, alternatives such as:

• private space

• space to keep personal possessions from home

• flexible visiting times and tailored arrangements for carers

• comfortable seating for the carer

• access to refreshments.

Give carers of people at the end of life up-to-date and accurate information and advice about financial, legal and logistical issues they need to address when preparing for or following the death of the person they care for.

Take account of the changing information and support needs of carers in planning for their own future when the person they care for dies. This should include discussing with carers how to address their own support needs after the death of a mutual carer.