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A “gloriously ordinary life’’: spotlight on adult social care Contents

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Chapter 7: Unpaid carers: “We need support, we need recognition”

362.Unpaid carers keep the adult social care service going. They are a national but neglected source of expertise, skills and knowledge. In the previous chapter we set out how enabling independent living through co-production in policy and practice, wherever possible, will transform the prospects for unpaid carers. This final chapter looks at what needs to change now to support and strengthen the position of carers so that they are more resilient, respected and supported. This starts with improving ways to identify carers appropriately.

363.It is also about ensuring that carers get the support they are entitled to, and that the system is a help and not a hindrance. One priority is therefore to invest in and streamline the navigation process along with recommendations about overdue improvements designed to take carers off the precarious margins of poverty and keep them in work, if that is what they want. The challenge is to local authorities, the Government and employers. But fundamentally, unpaid carers need fairer benefits, not least because they are more likely to face additional costs. They should also be entitled to more short breaks, paid Carer’s Leave and effective support to stay in work if that is their choice.

364.On the broader canvas, we look at the obstacles which marginalise carers and diminish their knowledge and skills and how that can be changed, along with the curriculum for social work training itself.

Who are the unpaid carers? The paradox of disclosure

365.As we have seen, and as the Family Resources Survey indicates, 4.2 million people, 6% of the UK population, provided unpaid care in 2020/21.571 Reflecting both the unevenness of data and the difficulty of identifying carers, other estimates are higher. The Joseph Rowntree Foundations estimates that 1 in 12 adults (4.4 million) are unpaid carers, with nearly 6 in 10 living in families where someone is disabled.572 Based on data from the 2011 Census, Carers UK puts this higher, at 6.5 million total unpaid carers.573 More recently, based on polling of 3,500 people, Carers UK has estimated that the figure is now closer to 10.6 million unpaid carers in the UK.574

366.The range of these assessments reflects the scale of the problem, while at the same time underestimating it because of the chronic problem of partial data. Many unpaid carers do not wish to identify themselves as such. They find it demeaning or intrusive and likely to compromise their relationships and self-esteem.

367.At a fundamental level, many carers do not even recognise the term ‘carer’ as reflective of their relationship with, for example, the parent, child, friend or neighbour that they provide care for.575 Almost three-quarters of carers (71%) state that seeing themselves primarily as a family member or a friend is a barrier to identifying themselves as a carer.576 Some carers do not want to be labelled as carers due to concerns it may impact, for example, job opportunities.577 They may also be worried about the repercussions of identification: will they be asked to take on more care; will there be a risk that the person they provide care for will be taken away from them? Fatima-Khan-Shah, Associate Director, Long Term Conditions and Personalisation at West Yorkshire Health and Care Partnership, said that she could not “emphasise enough the toll and concern that comes with the disclosure that you are somebody who might be referred to as an unpaid carer.”578 Because unpaid carers do not always provide practical, hands-on intimate care, as opposed to emotional or financial care, they do not always identify.579 Moreover, being a carer can be an all-encompassing role; carers must manage competing demands; often they feel unable to look after their own needs on top of those of the person they provide care for.580

368.There is also a cultural dimension, in that expectations around caring roles in familial relationships in some BAME communities mean that carers go unidentified, and social stigma around accessing help prevents some from accessing support.581 In some languages such as Gujarati, there is not even a word for carer. Some communities may see it purely as a family affair, where external support is not required.582 However, this can be a self-fulfilling prophecy—if services are not culturally appropriate (because there is an assumption that some communities ‘look after their own’), then those communities have no choice but to look after their own, thereby reinforcing the view that services don’t need to be more culturally appropriate.

369.Even the term ‘carer’ is a barrier to identification. As put by Professor Nan Greenwood, Centre for Health and Social Care Research, Kingston University London, as “much as ‘Clap for carers’ was wonderful, what a carer is was very confusing for the public”.583 There is a fundamental confusion around paid carers versus unpaid carers. We heard that there is therefore a need for the language around caring to be both accurate and culturally appropriate. Professor Greenwood said that “we must not force everybody to call themselves a carer, because some people really do not want it. They feel that it is a really negative thing for them.”584 Once they have passed the first hurdle of accessing care, they are often more willing to self-identify.585

370. But crucially, unless they are identified formally as a carer they may not receive the support they are entitled to.586 Indeed, 91% of carers said they missed out on financial or practical support as a result of not identifying as a carer.587

371.As well as limiting the support that carers can receive, a failure to identify limits the data available for analysis and evidence-based interventions which might benefit the sector. For example, NHS Digital currently undertakes a formal Survey of Adult Carers in England (SACE), which explores the extent to which unpaid carers consider that they have a balanced life alongside their caring duties.588 This survey is only based on feedback provided by unpaid carers who have been identified by the local authority, meaning that a huge proportion of carers are not represented. Again, this reduces the visibility of unpaid carers, discussed in Chapter 2.

No wrong door: Identifying and respecting carers

372.Self-identification is not working. But neither are the formal systems set out in the Care Act 2014, which already require that local authorities and health bodies in England must work together to identify carers and that any carer who appears, or is likely to have, needs for support must be identified and offered a Carer’s Assessment.589 There are similar requirements in other pieces of legislation applying to Scotland, Wales and Northern Ireland.590 This requirement is not reflected in the outcomes revealed in the statistics, which also suggested that there is a missing link in the process—the health professionals themselves.

373. A survey of 2,100 carers showed that between 71% and 85% of carers came into contact with health professionals including GPs, doctors and nursing staff. However, health professionals identify only one in 10 carers and GPs just 7%.591 While existing pressures in the system mean that it can be extremely challenging for GPs to know the circumstances surrounding patients, this suggests a new link could be made by all health professionals without much additional bureaucracy. Caring Together, for example, suggested that the CQC should play a role in ensuring that GP surgeries are registering carers and making effective use of their carers registerers. They also suggested that hospitals should play a role in ensuring carers know where to find support.592

374.Other ways of identifying carers in order to support them effectively are also within reach. For instance, employers can help to identify the people who work for them and who also have a caring role. They could play a much more proactive role in guiding employees to support. This is already beginning to happen. Carers UK’s employer forum, Employers for Carers (EfC), brings together over 110 businesses to make the case for supporting carers in the workplace. Among other benefits, membership of EfC provides organisations with information, advice, toolkits and workplace sessions for line managers including guidance on identifying and supporting carers at work.593

375.For young carers, who are particularly vulnerable, schools could be a more effective way of identifying who needs appropriate help and support. The Children and Families Act 2014 introduced the right to a young carers assessment.594 However, many young people who provide care to someone, offering physical or emotional support, do not want to be known as carers, considering their caring tasks to be a ‘normal’ part of family life.595

376.Box 9 describes examples of best practice in identification of carers.

Box 9: Identification: examples of best practice

Liverpool Liverpool Council has been developing a ‘no wrong door’ approach to carer identification. This means that carers should be identified, assessed and their families supported regardless of which service is contacted in the first place. This accelerated during the pandemic and the Council was more ready to implement the vaccination rollout as a result. This approach makes it less likely that carers have to repeat information, ensures that public services can alert carers to preventative services and provides a more integrated service to carers.596 Leeds Meanwhile, in Leeds, Carers Leeds works with GP practices to identify carers. As well as referring carers to the service, GP surgeries are encouraged to put in place their own additional support for carers by offering things such as annual health checks and flexible appointments. The initiative has led to an increasing number of referrals from local practices. As of 2018, every GP practice in Leeds—over 100 of them—now have access to the scheme. Between them they are responsible for referring over 500 carers a year into the Leeds service, making them one of the core referrers.597 Coventry Young Carers Service Coventry works closely with schools to support young carers. It has a dedicated schools worker and runs an awards scheme, while the council has funded an online training course that is promoted to staff. There are an estimated 5,000 children and young people under the age of 25 with caring responsibilities in Coventry. Schools are the major route of referrals, although some do also come in from council staff such as social workers, other professionals and some via self-referrals. As of 2018, the service has around 1,500 children and young people registered.598

377.There should be a ‘no wrong door’ approach to unpaid carers in public services, meaning that carers can find a route to identification and signposting regardless of the professional they are speaking to. Priority should be given to making this the norm in health and social care settings, with which carers are highly likely to come into contact, and where, with their consent, their caring status can be formally included in a patient record.

378.The Government and NHS England should create incentives for secondary and primary care to identify unpaid carers, and to ensure that their unpaid caring status is included in their patient record with their permission. On identification, there should be mechanisms to provide carers with information, self-care and digital resources to support them.

379.Carers UK has argued that one universal way of improving the identification and support of carers would be to make caring the tenth protected characteristic under the Equality Act 2010. This would increase awareness of carers, as well as improve equalities monitoring and establish a clear public sector duty to support carers.599 With unpaid carers more visible and valued, identification would inevitably happen earlier. Carers UK also stressed that this would likely result in more carer-friendly employment practices and workplaces, as employers would adopt inclusion policies that would encompass carers.600 We do not express any view on the proposal as we have received no further evidence but feel it should be explored further. Other initiatives to improve employer practices towards carers are explored further in this chapter.

Finding solutions: keeping unpaid carers out of poverty and in work

380.The fundamental question is: what are the most effective actions that can be done to bring greater understanding of what unpaid carers do and need, in such a way that relationships are harmonised and supportive?

381.As mentioned in Chapter 3, unpaid carers often live in or on the margins of poverty. The Joseph Rowntree Foundation estimate that more than one million carers are in poverty.601 This has been made worse by the cost of living crisis. This has resulted in unpaid carers feeling “absolutely abandoned by society”.602

382.We heard categorically that Carer’s Allowance “is simply not fit for purpose”.603 We would describe the benefit as an anomaly. At a minimum of 35 hours per week, the caring hours threshold to access Carer’s Allowance is extremely high, while the earnings limit, at £132 per week, acts as a disincentive for carers to remain in any form of paid work. As noted by Carers UK, the earnings limit does not rise in line with rises to the National Living Wage, which further undermines carers’ ability to remain employed.604 This must change.

383.Proposed reforms included making Carer’s Allowance “more reflective of a wage”, increasing it to match the minimum wage605 or the minimum living wage,606 and reforming the threshold for Carer’s Allowance to ensure that people working a reasonable amount less than 35 hours per week or earning more than £132 per week are eligible.607

384.Other witnesses proposed the extension of carers’ benefits to cover the additional costs that come with being an unpaid carer. Unpaid carers are excluded from any provision of statutory sick pay, holiday entitlement, pension arrangements—other than that based on national insurance contributions—or any help with healthcare costs.608 Unpaid carers in England are at a multiple disadvantage too because many fall outside the exemption from paying for prescriptions based on age and benefit entitlement, which are free for everyone in Scotland, Wales and Northern Ireland.609

385.Unpaid carers are also presented with a whole range of expenses above those of people who do not provide care. Caring costs could include extra:

• Transport costs travelling to and from the disabled adult or older person’s home, taking them to appointments, day centres, activities, or visits. Costs including taxi and bus fares, fuel and wear and tear on the carer’s car.
• Equipment costs that allow for daily living like hoists, wheelchairs, standing aids etc. and the associated higher energy bills linked to these.
• Home adaptations costs that cannot be met by local authority grants.
• Clothing costs due to wear and tear, or being damaged by the person who draws on care.
• Laundry costs from the need for washing clothes, sheets, blankets etc from incontinence and increased electricity and water costs.
• Household product costs: cleaning products, laundry products, sanitiser, gloves, aprons etc.
• Food costs to maintain a particular dietary requirement, additional cost of nutritional supplements and shakes.
• Furniture cost: having to buy specialist beds, recliners, or replace items that are damaged more frequently due to unintentional damage.
• Incontinence needs: bed pads, incontinence pads, specialist wipes, creams to avoid sores, gloves etc.
• Costs on the long-term financial health due to low income and opportunity costs.610

386.Nadia Taylor, Chair of the Board of Trustees, Carers Network, suggested that unpaid carers should be given the same rights and provisions as other benefit recipients who are entitled, among other things, to free prescriptions, eye and dental care and subsidised travelcards.611

387.The current situation is a false economy. As noted by Valentina Zigante, Research Officer, Care and Policy Evaluation Centre, LSE, the economic evidence is “in favour of the importance of keeping carers healthy and in a good mental state and supporting their physical and mental well-being.”612 Ms Zigante also linked poverty and carer strain, noting the abundance of research on how financial strain “feeds into the overall perception of strain in the caring relationship.”613

388.It is urgent to reform Carer’s Allowance so that it ceases to discourage carers from remaining in paid work. Access to the benefit should therefore be granted even to those who are caring for fewer hours, leaving more time for paid work, and earning more income. In addition, there should be national recognition that, as the lowest benefit of its kind, Carer’s Allowance is not reflective of the contribution of unpaid carers. It must therefore be reviewed and increased to pay carers a fairer amount.

389.Access to Carer’s Allowance must immediately be made easier by lowering the threshold of caring hours and ensuring that the earnings limit is uprated, in law, in line with rises to the National Living Wage.

390.The Department for Work and Pensions must review Carer’s Allowance, reporting to Parliament within 12 months, and recognising that, as the lowest benefit of its kind, it is not reflective of the value of unpaid carers’ work. The review should also cover the high threshold of caring hours, and the low and inflexible earnings limit, which are both significant barriers to accessing Carer’s Allowance.

Combining work and care

391.Many problems could be solved if more carers had the right support to stay in work. The economic case for carers to be able to stay in work if they so choose is certain. The loss to the Exchequer is estimated to be £2.9 billion a year in relation to carers’ benefits and lost tax revenues.614

392.However, some carers, because of the complexity of their caring situation, the extent of their caring, or because support arrangements collapse, are required to care full-time. Staying in work should be a choice, not only for financial reasons, but because of the therapeutic effect of working in a context which can so easily bring on anxiety, poor mental health and feelings of low self-esteem.615

393.Unpaid carers face different challenges in balancing their work alongside caring. Employment prospects vary greatly, depending on the nature of care offered. Almost half of unpaid carers, for example, provide care to an older person; this typically arises mid-to late-career, tending to be a relatively shorter period of caring. Around a quarter provide care to a spouse or partner. This is often longer term and it is often important for the carer to remain in paid work.616

394.The challenges for unpaid carers of children or adults of working age who are disabled from birth are for a lifetime. About one eighth of carers provide care to a son or daughter, starting early in their career and continuing for most of its remainder.617 We heard from Professor Yeandle that this group is not well served by the current arrangements.618 Professor Yeandle praised the UK’s lead on flexible working, which is helpful to carers, but she pointed out that the UK still does not have compensated carer’s leave.619 She stressed the importance of carer’s leave being compensated, as otherwise the poorest carers would not be able to take advantage.620

395.However, the Government’s Employment Bill, proposed in the 2019 (but not the 2021) Queen’s Speech and yet to be introduced in Parliament, would only provide for five days of unpaid leave and a ‘day one’ right to request flexible working.621 The Carer’s Leave Bill (a Private Member’s Bill) was introduced in Parliament in September 2022. This would amend the Employment Rights Act 1996 and make provisions for at least a week of unpaid leave every 12 months for employees with caring responsibilities.622 While the Bill is still before Parliament, Germany offers an example of a system that already has such an arrangement (see Box 10). We heard that the UK “lags behind established practice in other comparable economies on this issue”, with at least seven other developed countries offering more generous leave than the UK Government has proposed. Most of these other countries also compensate the employee via employment insurance or welfare benefits.623

Box 10: International example: Germany

The government of Germany recognised the costs of reduced labour market participation to individuals, employers and the state. As such they introduced legislative reforms to improve carers’ employment flexibility and job security: Short-term absence from work (Pflegezeit; Nursing Care Time): Since 2008, employees have been entitled to a maximum of 10 days’ emergency leave to organise care for a relative when there is a sudden need. Employees can also be released from full-time work completely or partially for up to six months. In 2015, a carers’ grant was introduced which allows for up to 10 days of emergency leave, set at 90% of the employee’s wage, funded through the LTCI (long-term insurance) of the person in need of care. Family caregiver leave (Familienpflegezeit): Since 2012, an employee has held the statutory right to reduce their working hours to no less than 15 hours per week for up to two years. In 2015, a government interest-free loan has been available to employees which allows them to reduce their hours while retaining a proportion of their salary. The loan must be repaid upon returning to work full time. However, uptake of these is low, estimated at 6,750 people in 2018. This is due to low awareness among employees and resistance among employers.

Source: Nuffield Trust, What can England learn from the long-term care system in Germany? (September 2019), pp 54–55: https://www.nuffieldtrust.org.uk/files/2019–09/1568207938_ltci-germany-br1924-web.pdf [accessed 21 November 2022]

396.The Government must honour its commitment and establish the entitlement to unpaid Carer’s Leave at the earliest opportunity, supporting the speedy passage of the Carer’s Leave Bill.

397.The Government should commission a review with the longer-term objective of legislating for compensated Carer’s Leave.

398.Employers, as well as the Government, can help unpaid carers who are also employees. The advantage to employers is evident: carers represent one in seven of the entire workforce, with a peak caring age of 50 to 64, when many employees will have gained valuable skills and experience.624 It is in employers’ best interest, therefore, to retain their employees who have caring responsibilities. Childcare has largely become normalised and supported in the workplace, and parents are often given the flexibility to care for their children. The same must now happen in relation to other forms of unpaid care.

399.We heard that employers should become ‘carer-friendly’ ensuring that HR systems and processes consistently help to identify carers, just as they capture other demographic and equalities information. It should be standard practice that employers and managers are aware of the role that carers play and the challenges that they face. As one carer put it, “Line managers and HR need to be aware that a little bit of compassion and flexibility goes a long way.”625 The Employers for Carers scheme identified “five Ps” in good employer support:

• Preparation. This is about identifying carers in the workforce and enabling them to identify and recognise themselves.
• Policies. Behind preparation and identification should be carer support policies and transparency of support.
• Practical provisions and arrangements that support working carers, such as signposting to external wellbeing services.
• Peer support. Employers should engage and connect carers in the workplace.
• Promotion. Employers should raise awareness and make caring visible in the workplace, ensuring that carers feel confident in coming forward for support.626

400.Councils in the West Midlands provide examples of best practice for employers (Box 11).

Box 11: Employment example of best practice: West Midlands

Councils in the West Midlands are working to encourage employers to support carers. An employment guide has been produced and now councils are changing their own practices as well as encouraging others to do so. West Midlands Association of Directors of Adult Social Services represents 14 local authorities. It has a Carers Leads Network. Last year the network produced a guide to encourage employer friendly practices. The 14 local authorities have signed up to making themselves carer-friendly. All are at different stages, but steps being taken include identifying carers in the workforce, changing HR protocols, appointing carers champions and setting up carers groups so they can offer each other support and represent carers in the workplace.

Source: Local Government Association, Supporting carers: guidance and case studies (December 2018) p 31: https://www.local.gov.uk/sites/default/files/documents/22.31 Carers publication_05.pdf [accessed 22 November 2022]

401.In Scotland, employers are encouraged to identify and support their employees who have caring duties thanks to the Carer Positive employer recognition scheme, which is sponsored by the Scottish Government and operated by Carers Scotland.627 The scheme awards employers in Scotland who have a working environment where carers are valued and supported. In England, Employers for Carers has developed a similar Carer Confident benchmarking scheme, which assists employers to build a supportive and inclusive workplace for staff who are carers. The scheme recognises employers who do this thanks to a certificate of achievement.628

402.The Government should ensure the wider uptake of the Employers for Carers’ Carer Confident Scheme to raise awareness of unpaid carers in the workplace and encourage employers to support unpaid carers who work for them.

A service that cares for them: accessing short breaks

403.As discussed in Chapter 3, despite facing significant physical and emotional challenges, unpaid carers have great difficulty accessing short breaks, with many witnesses telling us that they hadn’t been able to take a break from caring in many years. Recent polling by Age UK showed that 59% of carers felt tired because of the care and support they provide, while 48% felt anxious and 29% felt overwhelmed. The need for short breaks among carers is increasing, wrote the organisation, and yet availability continues to be an issue.629

404.Short breaks are key to provide unpaid carers with time and space to rest, see their friends and family, and to tend to their own medical needs. Respondents to a survey carried out by Alzheimer’s Society said that short breaks were a key mechanism to the maintenance of their wellbeing.630 The organisation therefore called for greater capacity in services that provide short breaks, such as day services, sitting services as well as longer respite breaks.631 Similarly, the Carers Support Centre said that a key priority in supporting carers should be to create a duty to provide short breaks and respite for carers.632

405.The 2021 White Paper addresses the need for greater respite care and breaks and has pledged to dedicate some of the £25 million investment in support for unpaid carers to exploring the different models of respite, how respite services are accessed, and any barriers to accessing these services.633 If the funding is made available, this commitment will be welcome. Stakeholders have argued, however, that the progress in this space is too slow, and that support will come too late to those who are already struggling, which risks increasing pressure on a system that is already strained.634

406.The Government should dedicate ring-fenced funding to increase the availability and capacity of services that provide flexible short breaks for unpaid carers.

Finding a way through the care system

407.Apart from having the lowest of benefits and challenging work situations, the most frustrating aspects of the adult social care service that we were told about, time and again, was the bewildering difficulties that carers face in finding out and accessing the support to which they and the person they provide care for are entitled. A range of evidence demonstrated the difficulties of navigating the system, often without help, and being left to themselves to figure out where to look and what to look for. Carers UK argued that “the current system is … difficult to access for many unpaid carers”, partly due to a lack of information and understanding about what support is on offer.635 Some commentators have compared the system to a “drunken walk”, where the patient “staggers from door to door, from specialist to specialist, seeking bespoke advice and support, only to miss the very door that would lead to some assistance.”636

408.It is hardly surprising that it is so challenging to find out who can help, what help is available, and how to make sure it is the right help. Unpaid carers have to deal with a baffling range of organisations with responsibility for the support needed by the older or disabled person, such as NHS hospitals and primary care services, local authority social services, independent care agencies, personal assistants, pharmacists, occupational therapists, district nurses, podiatry services, mental health services, dentists, providers of assistive technology and mobility aids to say nothing of circular and complex bureaucracy. This coordination is often time-consuming and stressful for carers, who are also likely to be managing the personal administration of the older adult or disabled person.637

409.The Government recognised this difficulty: Ms Keegan told us that “the challenge we have is knowing who they are, or them being able to access us… information is key.”638 The Government has legislated to require provision of information to carers. Under section 4 of the Care Act 2014, councils have a duty to “establish and maintain a service for providing people in its area with information and advice relating to care and support”.639 Under the legislation’s statutory guidance, councils are “expected to understand, coordinate and make effective use of other high quality statutory, voluntary and/or private sector information and advice resources available to people within their areas”.640 In its social care White Paper, the Government has also committed to creating a new national website to explain upcoming social care changes and £5 million to pilot new ways to help people understand and access the care and support available.641

410.However, we heard from the LGA that these responsibilities under the Care Act 2014 cannot be delivered because funding pressures have not allowed it, and they questioned whether the Government’s pledge of £5 million is an adequate response to the scale of the problem, and indeed whether a three-year timeframe is commensurate with the urgency of the need to improve navigation for unpaid carers.642 It has also been pointed out that cuts to services and loss of funding for voluntary providers mean that people risk being signposted to nowhere, being passed round a circle of referrals to non-existent help.643

411.We were also advised that frontline professionals, particularly in primary care, community settings and hospitals, should themselves have the knowledge, skills and training to signpost unpaid carers to the best and clearest pathways to resources and support. Too often they did not. Supporting carers involves multidisciplinary input from the health and social care services and the voluntary sector,644 and the support of primary healthcare professionals can make a significant difference to carers’ health and wellbeing.645

412.Another proposed solution was the creation of a care manager “at the heart of the system”,646 responsible for designing, monitoring and overseeing care plans.647 Care managers are central to social care in Japan.648 Creating a role that is consistent across the country would help to offer support and clarity about expectations to those navigating the system and to health and care providers.649

413.The Care Policy and Evaluation Centre at LSE found that easily accessible information and advice (on available services, including council, voluntary, support groups, transport and short breaks) all in one place was the top priority for unpaid carers they interviewed.650 The Association of British Insurers noted the importance of integrating financial information as part of this.651

414.The idea of such a ‘one-stop-shop’ or single point of contact, which should not only give information and signpost to other services but offer help and support where possible was popular but it was stressed that it should not supplant the locally tailored information currently available. For instance, Carers UK has comprehensive detailed and expert information on carers’ rights which local organisations such as Care for the Carers East Sussex and others link to, as well as providing more locally sourced information about discretionary services.652 But there are very few services to which carers have a direct right, and many rights are complex to understand—for example carers council tax discount. While effective websites and tailored information were seen to make for an effective combination, these often need to be backed up locally by a more detailed service because of the complexity of situations and support needed.653

415.Overall, the care system is a labyrinth: carers face bewildering difficulties in finding out and accessing the support to which they and the person they provide care to are entitled. National action is needed to coherently resolve these significant navigation challenges. It must be complemented, however, by advice and information that is tailored to the personal and local nature of social care.

416.The Department of Health and Social Care and the Department for Work and Pensions must join forces to look at carers’ journeys to find better information and advice combining trusted national sources of information (such as gov.uk or Carers UK) with locally trusted information, advice and support for carers, recognising that they are best placed to advise locally.

Navigating transitions

417.Navigation is especially difficult during transitions, for example during hospital discharge, when transitioning from children’s services to adult social care or when moving houses between different local authorities. These are particular crisis points that can often lead to total frustration. The charity Caring Together carried out an experiment whereby a young adult sought to find out how they could access a transitions assessment by contacting 19 local councils and looking on their websites. Out of these, only eight were able to provide information on how to access an assessment.654

418.Sense UK argued that expectations are set too low during transitions, in particular when transitioning from childcare to adult social care. This is partly because there is an assumption by service providers and assessors that young adults will remain at home and that parents will provide unpaid care and support—even though once they leave education, their care needs become even greater. As parents age, they are often forced to leave employment to cover the additional hours. Reflective of this is the fact that only one in 10 parents of children with complex disabilities felt that their child would be able to access the specialist support they would need to fulfil their aspirations as an adult.655 They therefore suggested expanded information on potential employment to those who desire it; interagency teams working between children’s and adult’s services; and exploration of childrens’/young adults’ aspirations.656

419.The first transition is possibly the hardest one: the unpreparedness of unpaid carers who suddenly find themselves providing care and support after a member of their family or a friend develop a care need, suddenly, and sometimes overnight. There is a need, therefore, to develop better navigation mechanisms for unpaid carers from day one. We heard of the importance that Government and the sector “increase awareness, drive up the take-up of guidance and advice and increase early engagement.”657 It is important that this awareness is maintained along the “care journey”. The Association of British Insurers suggested that this should take the form of a national awareness campaign.658

420.Another pinch point, as described in Chapter 3, are the conspicuous challenges around hospital discharge which frequently came up as a crucial transition point in the caring process where the relationship between the person, the unpaid carer and formal care services could become particularly problematic for the person who draws on care. We heard that “good practice in involving carers in hospital discharge is not widespread enough”.659 Poor communication around discharge can lead to the deterioration of the older adult or disabled person’s health.660 One unpaid carer said that it would be helpful for hospitals to provide information about the condition of the older adult or disabled person, such as discharge letters.661 Improving hospital discharge requires staff to speak to the person first and, with permission, to the unpaid carer, without making assumptions about who might do what. If and once it is established that the person wishes to involve an unpaid carer, there needs to be appropriate recognition of the role that the unpaid carer can play in ensuring the positive outcome of discharge.662

421.Discharge from hospital should come with better signposting, advice and information for unpaid carers, who often find themselves having to provide care and support with no preparation or training. We heard that it is important to ensure that the statutory right for carers to be consulted prior to hospital discharge, established in the Health and Care Act 2022 and the accompanying guidance, is being met in practice.663 Carers have had the right to be consulted prior to discharge since the Community Care (Delayed Discharges etc.) Act 2003,664 and we were told by Ms Keegan that recent changes to discharge have included “making sure that the person who was caring at home, if that was the situation they were going into, was also part of the conversation and part of the discussion.”665 This, however, seems to be at odds with the reality on the ground, which we heard from carers themselves, who described that they are not communicated with prior to hospital discharge.666

422.The statutory right of carers to be consulted prior to discharge must be enforced. One example of good practice in discharge referred to the Committee is the Kent community hospital accreditation, where there were voluntary discharge champions, who will support community hospitals with the discharge process.667 Similarly, the Surrey County Council has commissioned the charity Action for Carers, which deploys ‘Hospital Advisors’ to five hospitals in the county to identify carers and support them while the person they provide care for is in the hospital. The Advisors are tasked with identifying carers and approaching them to bridge communication gaps with the hospital, offer advice and information and emotional support. They can also help carers with the discharge process, by signposting them to other organisations. The work of Advisors was described to us as “invaluable” to the carers in helping them “navigate the complexities of the care system.”668

Recognising the role and value of unpaid carers in the caring relationship: an unrecognised asset

423.The adult social care system could not survive without the contribution of unpaid carers.669 Improving ways of appropriately identifying the unpaid carer in the community is closely linked to the respect and recognition they receive.

424.Our recommendations so far focus on better identification, on the need to improve carers’ benefits and work/care balance and on navigating the system, particularly at the disruptive points of transition where most help is needed. There is, however, a systemic change which would fundamentally make each of these recommendations stick, and that is for a closer and more confident relationship between the service itself (the frontline paid care worker) and the unpaid carer.

425.Following from an increased role for GPs and health professionals as the first step towards identification, there is a natural progression towards those same professionals being more proactive in recognising the role of the unpaid carer.

426.At the moment, that does not appear to happen. Indeed, unpaid carers told us that they often feel invisible because they are not seen as important by health and care professionals despite the fact that they have expert knowledge that can only be an asset to getting the care pathway right—a fact that should be recognised as a priceless asset by professionals.

427.But the greatest impact could be made if the paid and unpaid carer were enabled to work more closely together. We heard, for example that “the job is neither valued nor respected because most people (including professionals) do not understand that it involves far more than just being present and doing tasks.”670 Also, that “they must not be seen as an alternative to paid workers but an adjunct who should be recognised and supported.”671

428.The failure to recognise that unpaid carers are equal partners in care and to value their expertise impacts on relationships between unpaid carers and paid carers and social workers, which can become compromised and sometimes even hostile. Many unpaid carers told us that, far from seen as a partner in the care journey, they are seen and treated as a “nuisance”.672 One unpaid carer said they were “treated like criminals” and “ignored” by professionals, and that there was “no communication”.673 This was covered in more detail in Chapter 3.

429.There seems therefore to be an embedded culture in care settings that is not conducive to the recognition of the role and expertise of carers. As put by one unpaid carer, “we are the experts in our own field”.674 Another described how carers are “challenged by staff almost every time they ask a question in their role as carers, are questioned as to whether they are really a carer or even asked to explain what their role is.”675

430. It is in everyone’s interests that the relationship between the carer and the rest of the social care service should be as positive, productive and as respectful as possible if there are to be right and sustainable outcomes for everyone. That means that the carer must not only be a central and valued member of the team, but that their expert knowledge and skills in providing care for the person involved must be audited, accommodated and reinforced.

431.At its worst, the failure to value the role of the carer does not simply mean that a resource is lost to the service; it also can mean negative and sometimes dangerous consequences for older adults and disabled people.

432.That failure of the process is often most acutely seen in the assessment process. The relationship that flows from that is a key part of making carers feel valued. As witnesses told us, assessments should therefore take into account all the resources the carer brings and needs: their mental and physical health, their ability and willingness to care and their relationships with others.676

433.One way to achieve this would be to give health and care staff professional training as part of the curriculum to embed a carer-aware and carer-friendly culture throughout their organisations, and to establish better communication with carers. The charity Caring Together, for instance, already provides carer awareness training to health and social care staff in Norfolk.677 We heard from other organisations that this is a good way to improve recognition of carers.678 To be most effective, this training should be co-produced with carers, who are best placed to know what best practice should look like.

434.Ms Chapman proposed that carers are consistently involved in the ‘Triangle of Care’ between the care worker, the person who draws on care and the unpaid carer, saying that “there needs to be a culture shift of consistently engaging carers with common-sense confidentiality practices, and Triangle of Care addresses this”.679 The Triangle of Care was originally conceived in 2010 to highlight the need for better involvement of carers and families in the care planning and treatment of people with mental ill-health,680 although could equally be applied to adult social care. This requires “time, commitment and senior leadership buy-in to build the relationships and understanding between carers and professionals and service users or patients”.681 Dan Gower-Smith, Group Director of Operations, Avenues Group, also emphasised the importance of cultural change, saying: “It should be a culture within the organisation that paid and unpaid carers are fundamental to delivering good support and recognising those individuals.”682

435.The Government should require that carer awareness training becomes a workforce requirement in health and social care settings, and that this training is co-produced with unpaid carers.

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