Supporting adult carers

Why the committee made the recommendations

The committee used themes in the qualitative evidence to build on statutory guidance about the key principles of providing information and support to carers. Under the Care Act 2014, local authorities must establish and maintain a service for providing people with information and advice relating to support for carers. However, many carers are unaware of the advice and services available, or they may not have time to search for them. The committee wanted to emphasise the importance of signposting carers to useful local services and up-to-date sources of information and that health and social care practitioners should pass this information to carers whenever they get the chance.

How the recommendations might affect practice

Information provision varies, so in some areas additional training and review of current information provision may be needed. Providing information is a statutory requirement, and giving carers the right information, advice and support at the right time can help them continue caring while managing other aspects of their lives. Any costs would be outweighed by the benefits of helping to avoid crisis situations such as unplanned hospital admissions and carer health problems.

Full details of the evidence and the committee's discussion are in evidence review B: providing information and advice about caring to carers in the UK.

Return to recommendations

Why the committee made the recommendations

There was good quality evidence from carers about how information sharing could be improved. This evidence guided recommendations about the way in which information should be delivered, including its format, style and timing of delivery and how to tailor it to what each carer needs and prefers.

One strong theme suggested that carers often receive information from multiple sources around the same time, emphasising the importance of professionals in different services working together to make sure they are giving consistent advice.

There was some limited evidence that primary care practitioners would like to promote care services to carers and are interested in formalising ways to do it. However only 1 example was identified for how this might be done within GP surgeries. The committee discussed this and reached the consensus that developing partnerships with other carer-related services and using carer 'champions' within teams are 2 ways they could do this.

How the recommendations might affect practice

Following these recommendations would make information easier for carers to understand and retain, improve their experience and wellbeing, and their ability to give effective care. They may call for refinements to existing practice but do not imply any costly changes or radical new provision.

Details of the evidence and the committee's discussion are in evidence review B: providing information and advice about caring to carers in the UK and evidence review D: work, education and training. Other supporting evidence and discussion can be found in evidence review A: identifying carers as defined by the Care Act 2014 and evidence review F: providing practical support for adult carers.

Return to recommendations

Why the committee made the recommendations

There was evidence that carers value being recognised and respected as core members of the team around the person they care for and that carers have valuable information to contribute to care planning and assessment. They are often key to understanding the person's needs and preferences, so these recommendations were made to promote their involvement. This approach should be incorporated in formal policies and processes to ensure it is consistent across organisations.

The evidence showed that to provide effective care, carers need sufficient information about the person they are caring for. However, in many cases this can clash with the person's right to confidentiality. The committee made a recommendation to address this issue and balance the different concerns.

There was strong evidence that carers value being kept up to date, even with difficult news about the condition of the person they care for. However, the evidence suggested that professionals are sometimes vague, euphemistic or evasive with difficult news, which carers don't find helpful. They prefer to have time to process and understand any new information, and to properly prepare for possible changes to their caring role in the future.

How the recommendations might affect practice

The committee acknowledged that a little additional time may be needed for practitioners to keep carers up to date and well informed. However, the benefits include ensuring that care planning is based on accurate and detailed information, encouraging the carer in their role and respecting them as a core team member to help sustain the caring arrangement.

Details of the evidence and the committee's discussion are in evidence review A: identifying carers as defined by the Care Act 2014 and evidence review B: providing information and advice about caring to carers in the UK.

Return to the recommendations

Why the committee made the recommendations

It is a requirement of the Care Act 2014 for local authorities to have due regard to the importance of identifying carers who may have support needs and explain the advice and support available to them. The quality of the evidence was fairly low but it found specific barriers to identifying carers, so the committee drew on these along with their own experience to recommend how to improve identification of carers. This included setting out a range of potential opportunities for practitioners to identify carers and record details about them – providing the carer gives consent.

In the committee's experience, there are many reasons why people may not identify as a carer and, even if people recognise they are in a caring role, they are still more likely to see their primary role in relation to that person as a family member or friend. Practitioners should take this into account in the way they communicate and work with carers.

There may be more than 1 person involved in a person's care and support, and the committee agreed that it is important that health and social care practitioners seek to identify all carers and to understand the context of their caring situation. This enables advice, support and assessments to be more likely to meet each carer's needs.

The committee agreed that recording information about carers as part of routine assessments can help to identify carers, especially when this information is shared with other health and social care practitioners, and there was evidence to support this.

The evidence also suggested that carers value discussions with practitioners where their caring is recognised and they are offered support. However, it can be challenging to have open conversations with carers about their own needs, especially with the person receiving the support present.

Carers may also have care needs of their own due to long-term health conditions or disability. Where this is the case, an assessment of both their own care and support needs and their carer support needs should take place in line with the requirements of the Care Act 2014.

Finally, the committee agreed that not all carers would want or need a formal statutory carers assessment, for example if they were managing well at that time, so it was important to give those carers information about how and where to access carer support services if they need them.

How the recommendations might affect practice

The recommendations should have limited cost implications because they involve using existing opportunities to help identify carers. There may be some costs associated with improving how information about carers is recorded and used to improve identification and support. The committee recognised that as more people identify as carers and seek information and support, local authorities, together with partner organisations in health and social care, will need to consider how resources are best used to benefit as many carers as possible, as well as those most in need.

Full details of the evidence and the committee's discussion are in evidence review A: identifying carers as defined by the Care Act 2014. Other supporting evidence and discussion is in evidence review H: support needs of adult carers who are caring for people at the end of life and evidence review I: supporting carers during changes to the caring rolev.

Return to recommendations

Why the committee made the recommendations

The committee agreed that health and social care organisations need to be proactive about promoting carers' roles and rights to help more people to self-identify as carers and seek support – this would help them meet Care Act 2014 requirements. There was little evidence to support the recommendations, but in the committee's own experience, people would be more likely to identify as carers if they are presented with images and language that are directly relatable to their changing perceptions of themselves and their own needs as carers.

Qualitative evidence showed that practitioners welcomed both informal and formal systems and processes to help them better identify and subsequently support carers and the committee agreed that carers were likely to benefit from these initiatives.

Practitioners coming into contact with carers need to have good knowledge of their responsibilities under the Care Act 2014 in relation to identifying carers. By consensus, the committee agreed that one possible way to achieve this was for organisations to consider nominating 'carer champions' within their workforce to help other staff understand their responsibilities in this area.

How the recommendations might affect practice

The recommendations could result in more carers seeking advice and support, which could lead to a higher demand for carers' support services. But they may also improve coordination between local authorities and other health and social care organisations in identifying carers and giving them support, leading to better care in turn for the person they care for.

Full details of the evidence and the committee's discussion are in evidence review A: identifying carers as defined by the Care Act 2014.

Return to recommendations

Why the committee made the recommendations

Recommendations were drafted to complement the Care Act 2014, other associated care and support statutory guidance, and the Children and Families Act 2014. These set out legal duties for local authorities, or social care organisations delegated by local authorities, to arrange and carry out carers' assessments.

The evidence that underpinned the recommendations was of variable quality but it found that:

The evidence was most limited on collaborative working and on carers' assessments as a therapeutic intervention, so for these recommendations the committee supplemented the evidence with their own experience and expertise.

The committee thought it was important that carers feel that they have co-produced the assessment and that it reflects what is most important to them. They also agreed it was important that practitioners carrying out carers' assessments should have access to specialist advice, for example about particular aspects of care and treatment of the person they care for, because this might influence the support needs of the carer.

There was no evidence on whether using the lead professional approach or the whole family approach can make collaborative working easier and more effective. The committee agreed to make a research recommendation on the whole family approach to carers' assessments (see research recommendation 1).

How the recommendations might affect practice

The impact of the recommendations is likely to vary depending on how much local services already collaborate with each other and train their staff to take the initiative with assessments. Additional training or reviewing of service coordination may be needed in some areas, but because such assessments are statutory requirements, they should not introduce additional financial implications.

Full details of the evidence and the committee's discussion are in evidence review C: assessment of carers as defined by the Care Act 2014.

Return to recommendations

Why the committee made the recommendations

The quality of the evidence was mixed, so the committee supplemented the evidence with their own knowledge and experience.

Qualitative evidence reported that some carers found the assessment process difficult to follow. Some carers also struggled to understand what being 'entitled to an assessment' actually meant. The committee agreed that practitioners need to give carers a clear explanation of what a carer's assessment involves and provide information in advance so that carers are better prepared and have time to reflect on their needs as carers. The committee also used the themes reported in the evidence to suggest ways of making assessments more positive for carers by making them more accessible and person-centred.

Expert testimony suggested the context in which caring takes place may be complicated, for example someone may be caring for more than 1 person or may be sharing their care responsibilities with other people, and so the committee agreed assessors should take account of this.

According to the evidence, carers' assessments are sometimes carried out in conjunction with those of the person they care for, which in some cases can mean the carer's own needs are not separately assessed. This was also supported by expert testimony. The committee agreed on the importance of making sure the carer's needs are considered independently, while providing an option to link with the cared-for person's assessments.

The Care Act 2014 states that carers' assessments must include an assessment of the ability and willingness of the carer to provide care, so assessors must not make assumptions about how willing or able a carer is to perform any given caring tasks.

If an assessment is done in hospital, it needs to be forward-looking and connected to the completion of a statutory assessment by community staff. This helps to ensure meaningful support for carers during transfer from hospital, because the evidence showed that assessments by different services can be fragmented.

The evidence suggested that the provision of replacement care enables carers to return to or remain in work. Therefore, the committee agreed that replacement care should always be discussed during assessments.

How the recommendations might affect practice

Carers' assessments are already statutory, so the implementation of these recommendations may only involve minor changes to existing practice. Some costs may be associated with retraining, or with implementing more flexible and individualised assessments, but the committee agreed these were implicit to what is an adequate assessment as required by the Care Act 2014. The committee considered that sharing information with carers in advance of the assessment so that they are prepared would not have significant complications. It could be facilitated by the creation of a frequently asked questions resource, for example.

Full details of the evidence and the committee's discussion are in evidence review C: assessment of carers as defined by the Care Act 2014 and evidence review D: work, education and training.

Return to recommendations

Why the committee made the recommendations

Although there was no high-quality evidence, the committee was able to make recommendations in areas where the lower-quality evidence aligned with their own experience. Some qualitative evidence showed that carers valued being offered services, practical support and financial support to stay in work, education and training. Evidence also suggested there may not be enough opportunities presented during carers' assessments to encourage their use and uptake. This chimed with the committee's concern that practitioners carrying out assessments often overlook carers' wishes about work, education and training.

The committee agreed that it was important for assessing practitioners to have good local knowledge about these types of opportunities for carers, as well as the community support options available (such as replacement care) to help carers take up these opportunities if they wish.

How the recommendations might affect practice

The recommendations might involve some changes to existing training and practice for practitioners carrying out assessments to make sure that work, education and training is covered routinely. They could also lead to changes in the levels of support needed by carers, and greater demand for services like replacement care. However, access to this support is a statutory right under the Care Act 2014, and any costs would be offset by the economic benefits to carers and wider society.

Full details of the evidence and the committee's discussion are in evidence review D: work, education and training.

Return to recommendations

Why the committee made the recommendations

There was some evidence that after an assessment, carers don't always feel that they have received helpful information or advice. Although this evidence was low in quality, having mostly come from survey studies with uncontrolled and potentially biased participant samples, it was supported by the combined experience of the committee. They agreed that practitioners should always make sure an assessment leads to clear outcomes and practical benefits for the carer. This means ensuring good communication with other practitioners and organisations and carrying out any agreed actions.

The committee agreed that if a carer's support plan is prepared as a result of an assessment, it should be monitored and reviewed regularly to ensure it achieves outcomes that are important to the carer.

How the recommendations might affect practice

The cost of implementing the actions identified as part of assessment will vary from case to case and will be informed by local eligibility requirements for funded support and on local arrangements for sharing information about carers' support requirements as well as monitoring and review. They should not have large cost implications and do not represent a significant change in practice.

Full details of the evidence and the committee's discussion are in evidence review C: assessment of carers as defined by the Care Act 2014 and evidence review D: work, education and training.

Return to recommendations

Why the committee made the recommendations

The Care Act 2014 mandates providing information for carers on work, education and training, and the committee used a combination of evidence and expert consensus to build on that legal requirement. There was some evidence that a lack of information and advice, combined with the fragmented nature of local support services, often acted as barriers to carers remaining in, returning to or entering work, education and training. The committee agreed it was important to make widely available person-centred advice and information specifically for carers. This was supported by evidence that carers welcomed advice and information from practitioners who understood the particular challenges they face in combining work and caring, including associated benefits and welfare advice. One way that the committee proposed services may do this is by designating a 'carer champion' to offer expert advice when needed and to assist in training other practitioners working in the service about carers' needs and rights under the Care Act 2014.

There was some limited evidence showing the disadvantages experienced by young adult carers striving to balance work or education with caring. The committee also noted the difficulties often experienced by older carers wishing to retain or return to employment after the end of their caring roles. They agreed that carers may lack confidence about finding work, especially if they have spent years caring at the expense of education or training. They agreed by consensus that it was relevant for all carers to be encouraged to recognise their value to employers using the skills they have built up during caring.

There was a lack of evidence about the effectiveness of particular tools or approaches for supporting carers to return to work, education or training. Supported by expert testimony, the committee agreed that there was potential in further exploring whether the use of personal budgets, either for the person being cared for or the carer in their own right, might have positive outcomes for the carer. So the committee agreed to make a research recommendation about the effectiveness of personal health and social care budgets in supporting carers to return to work, education or training (see research recommendation 2).

How the recommendations might affect practice

These recommendations reinforce legislation and should help to improve consistency of best practice. Changes needed to current practice will depend on the availability of carers' work-related support services in each area. Providing tailored advice of this kind may require some additional local investment, but this would be offset by substantial benefits for carers from being supported to continue working or learning alongside caring, leading to cost savings in the long term.

Full details of the evidence and the committee's discussion are in evidence review D: work, education and training. Other supporting evidence and discussion can be found in evidence review A: identifying carers as defined by the Care Act 2014.

Return to recommendations

Why the committee made the recommendations

There was evidence that even small adjustments to working practices can have positive benefits for carers balancing paid work with caring responsibilities. Carers also reported that they often avoid discussing caring-related problems with employers for fear of negative attitudes from managers, feeling a burden, or being excluded from opportunities to develop their careers.

It is a requirement of the Equality Act 2010 for employers to actively promote a positive culture towards people with caring responsibilities. The committee agreed that this could include promoting opportunities for flexible working practices and use of employee assistance programmes that can provide advice and support for working carers, as well as ensuring that staff with caring responsibilities have equal access to career development opportunities.

Using expert witness testimony, the committee incorporated some specific examples of adjustments in the workplace that would benefit carers.

How the recommendations might affect practice

The recommendations reinforce carers' statutory rights and best current practice. Changes needed to current practice will depend on the availability of carers' work-related support services in each area.

Providing flexibility for working carers may incur additional costs for employers (for example, if it's not possible to reorganise work among other staff) and for policymakers and commissioners (for example, costs of enforcing legislation). However, the committee also recognised that flexible working could assist with staff retention, bringing potentially large cost savings.

Full details of the evidence and the committee's discussion are in evidence review D: work, education and training.

Return to recommendations

Why the committee made the recommendations

Some limited evidence showed that carers valued being able to use replacement care locally so they could work or take part in education or training, and the committee's own experience supported this. Furthermore, economic evidence suggested that the gains from increased labour market participation could outweigh the costs of replacement care. Those gains would come in the form of generating increased taxation, reducing social welfare payments and increasing economic output.

The recommendations are consistent with the Care Act 2014, which includes a duty for local authorities to promote individual wellbeing, including through participation in work or education.

The committee agreed that replacement care should be responsive and flexible and provide a choice of options. Providing choice would benefit the person being cared for as well as the carer themselves. This was supported by evidence suggesting that the attitude of the person being cared for could sometimes discourage carers from pursuing opportunities for work and education because of concerns about the quality of their replacement care, especially when their care and support needs were complex.

How the recommendations might affect practice

The recommendations reinforce carers' statutory rights and best current practice. Changes needed to practice will depend on whether replacement care services are available in each area. The recommendations should encourage commissioners to develop local markets so that replacement care is available to purchase, through either local authority or self-funding.

Providing working carers with replacement care will help them to remain in work, so the additional costs of replacement care would be offset by the benefits of keeping carers in the workforce.

Full details of the evidence and the committee's discussion are in evidence review D: work, education and training.

Return to recommendations

Why the committee made the recommendation

The committee used the evidence along with their own experience to complement the legal requirements of the Care Act 2014 about providing information on community services to carers. They noted that the exact provision may vary by region and not all services will be available to everybody, so carers should be made aware of what is available to them and the ways in which they can access different types of support.

The committee suggested the kinds of information that carers would find useful, based on the evidence. They also wanted to emphasise that information giving should be ongoing to meet the changing circumstances of carers. This echoes recommendations elsewhere that carers' information and support needs should be revisited frequently (see the section on sharing information with carers about providing tailored information for carers).

How the recommendation might affect practice

Providing information to carers is mandated by the Care Act 2014 so this recommendation should not have a significant impact on practice, other than to improve the consistency of implementation of legislative requirements.

Full details of the evidence and the committee's discussion are in evidence review F: providing practical support for adult carers.

Return to recommendations

Why the committee made the recommendations

There was a lack of evidence on effectiveness or cost effectiveness to support a recommendation about the circumstances in which carers' breaks should or shouldn't be offered. Instead, the committee based their recommendations on qualitative evidence showing that many carers struggle to maintain their own wellbeing and often overlook their own needs because of their caring responsibilities. This makes it important for practitioners to remind them regularly of the value of taking a break, including a break from their usual routines associated with caring.

The evidence showed that carers' breaks were often limited in nature, availability, quality and flexibility. This can cause stress to the carer that undermines the benefits when they are offered. The committee drafted recommendations to improve how breaks are provided when they are offered or accessed by carers.

No evidence was found about carers' passports as a means of improving support for carers, so the committee made a research recommendation to establish their effectiveness and to understand people's views and experiences of them (see research recommendation 4).

How the recommendations might affect practice

The committee did not anticipate that these recommendations would have a significant impact on practice or resource implications. However, it is not consistent practice for practitioners to discuss carers' breaks with carers so this recommendation could have a positive effect and may represent a change to the quality of discussions between practitioners and carers.

Full details of the evidence and the committee's discussion are in evidence review F: providing practical support for adult carers.

Return to recommendations

Why the committee made the recommendations

There was some evidence suggesting the benefits of peer support for carers, either through individual befriending arrangements or support groups. These include reducing social isolation and providing empathy and mutual emotional support. The benefits described in the studies resonated with the committee's own experiences, so they used this evidence to recommend encouraging carers to use peer support and explaining why it can be helpful.

Low quality evidence from 1 study suggested some perceived benefits of support for former carers (for example, reducing social isolation). Given the limitations of this evidence, the committee could only recommend considering the possibility of extending support services to people after their caring role had ended (in place of a stronger recommendation).

The committee agreed that signposting and social prescribing could potentially promote better access to peer support for carers, but there was no evidence so they could not recommend them. Evidence is emerging about the effectiveness of social prescribing more generally, so the committee made a research recommendation about its effectiveness and acceptability specifically for carers (see research recommendation 5).

How the recommendations might affect practice

Peer support for carers is available but may be configured differently in different places. There may be an increased demand for and uptake of peer support locally, which may affect coordination and training costs for voluntary services.

The committee did not think that continuing to offer support to former carers would have resource implications because for most carers this support would only be needed for a short time after their caring role ended.

Full details of the evidence and the committee's discussion are in evidence review F: providing practical support for adult carers.

Return to recommendations

Why the committee made the recommendations

There was no evidence in this area, but there is a legal responsibility on local authorities to provide access to independent advocacy, in line with the Care Act 2014 and the Mental Capacity Act 2005. The committee agreed by consensus that it was important to inform carers about their right to support from advocacy services and the circumstances in which they would apply. To build on this and ensure that advocates (or other representatives) can give meaningful support to carers, the committee agreed that practitioners should recognise the voice and role of advocates. In the committee's view this does not always happen in practice.

The committee also noted the important role of advocacy as set out in the Mental Capacity Act 2005.

How the recommendations might affect practice

These recommendations underline existing legal requirements and should not impact on practice.

Full details of the evidence and the committee's discussion are in evidence review F: providing practical support for adult carers.

Return to recommendations

Why the committee made the recommendations

Qualitative evidence suggested that carers often lacked confidence or felt overwhelmed in their caring role. There was also a wide range of evidence suggesting that training containing a variety of components can improve carers' skills and confidence in caring, and their understanding of the health condition, disability or needs of the person they care for, so the committee recommended carer-specific training programmes.

The committee used the evidence to pinpoint the common features of effective, cost-effective and acceptable carer training programmes. Tailoring programmes means their exact content would depend on the training needs of different carers but, based on the evidence, the committee recommended some core components to include. Those elements related to psychological and emotional wellbeing are included in the psychological and emotional support section of this guideline.

By consensus, the committee also agreed to add some additional components in recommendation 1.6.6 that they felt were valuable, based on their knowledge and experience, but which did not have specific support from the evidence.

Qualitative evidence suggested that some carers have insufficient information about medication management and the use and maintenance of equipment to administer medication. Therefore, the committee recommended that training programmes could include managing medicines. For guidance on managing medicines in the community, see NICE's guideline on managing medicines for adults receiving social care in the community.

The committee agreed by consensus that training could be delivered in a number of ways, in groups or one-to-one, and that it was important to acknowledge the range of skills and specific expertise needed by trainers. The committee also agreed that trainers should seek input directly from people who have been carers when designing and delivering carer training so that training programmes are based on real and recent lived experiences of caring.

From the evidence it was clear that many carers value the chance during training to meet other carers with similar experiences or circumstances, as well as the opportunity to have a break from caring. Moderate quality evidence suggested that training programmes reduced carers' sense of isolation, helped them interact with each other, discuss and resolve issues they are facing, and provide informal emotional support. Based on this evidence and their own expertise, the committee agreed that training programmes should provide a balance between learning and social and emotional support, and opportunities to explore different ways of continuing to offer support and advice to each other (peer support).

Evidence showed positive feedback from minority groups (in this case lesbian, gay, bisexual and transgender carers) that training groups which are inclusive or specific to them were valued and allowed them to meet others from that community. Therefore, the committee agreed to make a recommendation to ensure that training programmes are designed with a particular focus on being inclusive and supporting diverse groups.

There was no evidence on the impact of training for carers on caring-related accidents or incidents (involving either the carer or the person they care for), including failure to take prescribed medicine and falls. The committee therefore made a research recommendation to identify what training, support or other interventions aimed at carers help to reduce caring-related accidents or incidents (see research recommendation 3). The committee noted that it would be helpful if any new research were able to identify the association between increased accidents and specific factors such as the carer's age and their physical and mental health.

How the recommendations might affect practice

The recommendations reinforce best practice. The way services deliver carer training programmes varies across the UK, so the recommendations will help to improve consistency.

Providing multicomponent training programmes may involve initial additional costs. First, there may be an increase in the number of requests for training. Training may also be needed for practitioners to deliver the training. However, the components in recommendation 1.6.5 were based on the elements of the START (Strategies for Relatives) training programme. The economic evidence suggested that START was cost effective for carers of people with dementia and the committee agreed that it was reasonable to extrapolate this to all carers. Therefore, any additional costs of providing the programmes would be worth the benefits in carers' wellbeing and quality of life.

Full details of the evidence and the committee's discussion are in evidence review E: providing training for carers to provide practical support.

Return to recommendations

Why the committee made the recommendations

The quality of evidence was mixed but, based on both the evidence and their own expertise, the committee agreed that involving people's carers when they are having needs assessments for equipment and adaptations would help the carer understand the options available and how they can help the person they care for. To address challenges in using equipment that were reported in the qualitative evidence, carers should also be offered advice, guidance and training in using it safely and confidently.

No evidence was identified about the effectiveness and acceptability of training for carers in moving and handling. However, the committee agreed this was an important area for carers' own safety and wellbeing as well as for the person they care for. This is in line with current NHS and social care practice.

How the recommendations might affect practice

The recommendations reinforce legislation and should improve consistency of best practice. The way services support carers with moving and handling is variable, and changes to practice will depend on the availability of services in each area. Providing advice and guidance for carers in using equipment and adaptations and in moving and handling could involve additional costs. There may be an increase in the number of carers seeking this advice or guidance, and training may be needed for the practitioners who are delivering it.

Full details of the evidence and the committee's discussion are in evidence review E: providing training for carers to provide practical support.

Return to recommendations

Why the committee made the recommendations

The evidence suggested that psychosocial and psychoeducational support was important to carers, and helped improve their knowledge, skills and confidence about caring as well as improving emotional support, mental wellbeing and stress management. Overall, the quality of the quantitative evidence was low so the committee agreed that psychosocial and psychoeducational support should only be considered as an option for carers rather than be offered routinely. They used the qualitative evidence and their own expertise to agree the important elements that should be included as part of this support. Some of the components included in recommendation 1.6.5 (training and skills for carers) are derived from the same evidence and also contribute to mental wellbeing and stress management. They are considered as complementary to the components here.

The evidence for group interventions was more convincing than for one-to-one interventions. Group-based opportunities, where people had a chance to meet other carers and share experiences, were particularly valuable in building self-esteem, understanding and expectations of the caring role.

There was some qualitative evidence suggesting that carers see the timing of the support being offered as important. They believed psychological support would be most helpful at the earlier stages of becoming a carer, or soon after any times when the caring situation had changed or escalated. The committee agreed it was important to check regularly whether carers' needs and circumstances have changed and they need psychological support.

The committee also considered the timing of support in terms of carers' other commitments and responsibilities and drafted a recommendation to be mindful of their schedule and weekly circumstances.

The committee agreed by consensus that it was also important for practitioners to think about the way in which such support was provided. This might determine whether carers choose (or are able) to take up this intervention. They made a recommendation about other factors to consider, including location and accessibility, health and support needs of the carer, cultural factors and the availability of replacement care while they are away.

How the recommendations might affect practice

There is considerable regional variation in the psychosocial and psychoeducational support available for carers, so these recommendations may lead to an increase in demand from carers. In most cases, funding for support of this kind would only be considered as part of an assessment of the carer's needs by the local authority.

These programmes are likely to help reduce mental health problems in the carer that could otherwise significantly impact on the person's ability to continue caring and on the health and wellbeing of the person being cared for, as well as on demand for mental health services.

Full details of the evidence and the committee's discussion are in evidence review G: providing psychological and emotional support to adult carers.

Return to recommendations

Why the committee made the recommendation

The evidence on the effectiveness of psychotherapy and counselling was conflicting and was limited to cognitive behavioural therapy for carers of people living with dementia. There was not enough evidence to recommend these interventions for carers generally but the committee agreed on the importance of providing psychotherapy and counselling interventions for carers with mental health problems, in line with existing NICE guidance on mental health and behavioural conditions.

How the recommendation might affect practice

Because the provision of psychotherapy and counselling interventions to people with mental health problems is in line with existing NICE guidelines, the recommendation should not have a marked impact on practice except to highlight the importance of providing this support to adult carers.

Full details of the evidence and the committee's discussion are in evidence review G: providing psychological and emotional support to adult carers.

Return to recommendations

Why the committee made the recommendations

Although there was no strong evidence in this area, the committee was able to use their own experience to support studies in some areas and make recommendations by consensus in other areas that they felt were too important to be overlooked.

The evidence was specific to transitions to a care home, but the committee agreed to highlight other changes carers might find difficult that mean they need support, for example, when a cared-for person experiences major changes in their health, becomes terminally ill or moves out of their home. The committee also recognised that significant emotional and practical support would be needed if the person being cared for dies unexpectedly. By consensus, the committee also highlighted times when support might be needed when the carer's own life changes.

The committee used evidence from the information and advice section of the guideline to support recommending that carers need information and support when their needs and circumstances evolve, as they do at times of transition.

How the recommendations might affect practice

Some services and practitioners will need to adjust their practice to improve their information and consideration of carers during times of transition, but any changes would fit into existing routines of providing care so should not have any significant cost implications.

Full details of the evidence and the committee's discussion are in evidence review I: supporting carers during changes to the caring rolev.

Return to recommendations

Why the committee made the recommendations

The quality of the evidence varied, but the evidence helped the committee to identify the information needs that carers have when they are caring for someone near the end of life. This included the need to be kept informed about the person's developing condition, and to be given information to meet their own practical and emotional needs.

The committee agreed with the finding that all practitioners (including non-specialist staff) need to know how to communicate sensitively with carers. Failing to do this can add to the carer's distress and may even put them off from seeking support from services in future.

There was good evidence that carers can find it very difficult to accept help at home and may rearrange their lives to avoid this. The committee agreed that practitioners going into carers' homes need to know that carers might find outside help invasive so they can incorporate this into their approach to working with the carer.

A small amount of evidence found that carers of people who may lack capacity believe advanced care planning is important but can find the process uncomfortable. The committee referred to existing NICE guidance on this topic and also agreed to emphasise the importance of involving any current or potential future carers during advance care planning.

Evidence suggested that carers often had worries about care at the end of life, especially medication, including pain relief and its potential side effects. To help address these, the committee referred to NICE's guidelines about medication optimisation and the care of dying adults.

The committee drew on the evidence to suggest important considerations for practitioners supporting carers who are caring for someone at home at the end of life, as well as how to improve carers' experiences in hospitals, hospices or care units. There was strong qualitative evidence that carers value good quality care and support when they're providing end of life care at home, so the committee suggested examples of the support that would benefit them. For people dying in hospital, the committee recognised that some hospitals might struggle to always provide private rooms, so added some alternative considerations to give carers and the person dying as much dignity, privacy and personal space as possible.

The committee used some limited evidence together with their own expert knowledge to recommend support, information, advice and signposting in preparation for and after the person dies. Practitioners especially need to consider the specific issues for mutual carers when one of them dies.

How the recommendations might affect practice

The recommendations on information provision and communication will help to improve consistency of best practice and should not have significant implications for training or cost. The way that care at home is provided, and the amount of resources allocated to make it accessible, varies from region to region. Recommendation 1.9.12 was intended to improve the consistency of good support for people who are caring from someone at home so that they know about and can use local services.

The recommendation on dignity and privacy for people dying in hospitals or care units and their carers should promote and reinforce good practice without adding any significant resource impact. The committee provided a range of suggestions to improve patients' and carers' experiences even if space or resources are scarce.

Full details of the evidence and the committee's discussion are in evidence review H: support needs of adult carers who are caring for people at the end of life.

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