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The European voice for informal carers

UNITED KINGDOM

Towards carer-friendly societies
Demographic background

The UK’s population is growing, largely due to comparatively high fertility rates and net immigration. This will have a moderating effect on the ageing of society.

In the period 2019-2050 the share of people aged 65+ in the British population is expected to grow from 18.4% to 23.7%, compared to 20% to 28.5% for the EU-28), with most of the growth happening before 2030. The share of 85+ is expected to increase from 2.4% to 4.9% (EU-28: from 2.7% to 6.1%). Life expectancy for men and women at age 65 is projected to rise from 18.8/21.1 years respectively (EU-28: 18.1/21.4) in 2017 to 22.8/25.7 years (EU-28: 22.4/25.6) in 2060.

Over the same period, the old-age dependency ratio measured as 65+ as percentage of the 15-64-year olds will rise from 28.6% (EU-28: 30.5%) to 47.5% (EU-28: 55.3%).

Under an assumption of no policy change the Ageing Report scenario suggests that public expenditure as share of GDP would rise from 1.5% to 2.8% (EU-27: 1.6%-3.1%) by 2070. The impact of a progressive shift from the informal to the formal care sector in the UK would entail an estimated increase by 132% in the share of GDP devoted to public expenditure on long-term care (128% on average for the EU27).

Current Long-term care provision

The UK does not have a universal national system of social care, as the policy is devolved to the constituent nations. Having said that, long-term care in the UK usually focuses on providing assistance with personal ADL care tasks (such as dressing and bathing), help with domestic IADL tasks (e.g. shopping and preparing meals) and nursing care. An increasing number of older persons are now receiving cash instead of services in the form of direct payments or individual budgets.

Formal services are provided by a range of agencies, including local authority social services, community health services and independent (for- and non-profit) sector residential care homes, nursing homes, home care and day-care services. Long-term care services are financed by the National Health Service (NHS), local authorities, charities and by older persons themselves.

While health care services are free at the point of use and access is uniquely based on needs, most formal long-term care is considered social care and access takes place through an assessment of needs (coordinated by local authorities) as well as a means test. This leads to a great variability within a national framework of eligibility criteria as only individuals with income and assets below the means-tested level receive publicly-funded social care. The system also directs services towards those who live alone and do not receive informal care. This has been exacerbated by the austerity measures put in place after the 2008 economic crisis and social care budgets have been cut by 20 percent by local authorities since 2010 (Association of Directors of Adult Social Services 2013). A non-means-tested benefit for older disabled persons with personal care needs and a benefit for carers also exist.

The philosophy of the system places the primary responsibility for the non-health care components of long-term care with individuals and their informal carers (relatives, neighbours and friends).

The British LTC system can therefore be categorised as a ‘safety-net’ type of scheme that concentrates on supporting those with very severe needs, who are unable to meet the costs of their care. The philosophy of the system places the primary responsibility for the non-health care components of long-term care with individuals and their informal carers (relatives, neighbours and friends).

Overall, shifts towards greater private provision and funding can be observed. Of the approximately 480,000 places in residential and nursing care homes 92 percent are provided through private and voluntary service providers. Independent providers delivered about 170 million hours of home care, whereas local authority provision has dropped below 25 million hours in 2012. Approximately 43 percent of older and physically disabled residents of independent care homes fund the entire cost of their care; the percentage is significantly higher for residents of nursing care homes (49 percent) than for residents in residential care homes (39 percent)[1].

[1] Laing/Buisson 2013 as referenced by Humphries 2013

Carer-friendly policy environment

Number of carers

Informal carers in the UK provide the lion’s share of the support to people with long-term care needs. The 2011 Census found that 6.5 million people in the UK were providing unpaid care. This represents 10.3% of the UK population. UK-wide, the number of carers in absolute terms increased by 11% between 2001 and 2011[1], while in relative terms the proportion of the population involved in caregiving has not changed since the 2001 Census. The prevalence of carers varies across the UK. Wales and Northern Ireland (NI) have higher levels of unpaid carers (12% of people in Wales and NI provide unpaid care) than England (10%) and Scotland (9%). This also fluctuates regionally within each country with levels of care associated with rural areas, socio-economically deprived areas, those with a higher concentration of older people, and areas with a higher prevalence of poor health.

Women represent 51% of the population but make up 58% of carers. Interestingly, in the 85+ population, 12% of men and 5% of women provide unpaid care. Most carers are in the 50–64 age group, even though growing numbers of carers are themselves elderly; 20.5% of people in the 65+ age group are carers. Older carers are also amongst those most likely to provide very high levels of care, especially those aged 80+ caring for co-resident partners.

Most carers provide between 1 and 19 hours of unpaid care per week. Research commissioned by Carers UK and published in November 2015 estimated that 1.4 million people (more than 20% of carers) were providing more than 50 hours of care per week. 15% of carers provide 20–49 hours per week.

In the long run, there is significant concern regarding the future availability of informal carers and society’s ability to rely on them. Assuming no changes in the prevalence of disability among older people and constant prevalence of unpaid care across the population, a shortfall of 2.3 million carers by 2035 has been projected (Brimblecombe et al., 2016).

[1] Carers UK (2014) Facts about Carers: Policy Briefing, Carers UK London downloaded 8 June 2015.

Identification of carers and assessment of their needs

While policy strategies and legislation are at various degrees of development and implementation across the UK, the identification and assessment of carers needs is an important transversal policy issue. Local authorities play a crucial role in this task.

One the 4 priorities in the English Carers’ Strategy indeed concerns the need to ‘support people with caring responsibilities to identify themselves as carers so they can access the information, advice and support that is available’ (hM government, 2008, 2010, 2014b). The Care Act 2014 notes that Councils’ duties to provide prevention should include approaches to identifying carers’ and that authorities should consider working with different partners (e.g. NHS) to achieve this goal. Furthermore, the Care Act 2014 imposed a legal obligation on local authorities to undertake cares’ assessments replacing earlier laws, and removing prior requirement that the carer had to provide a substantial amount of care on a regular basis to be eligible for assessment.

The Carers (Scotland) Act 2016 introduced:

  • A duty for local authorities in Scotland to provide support to carers, based on the carer’s identified needs which meet the local eligibility criteria;
  • A specific adult carer support plan and young carer statement to identify carers’ needs and personal outcomes; and
  • A requirement for local authorities to have a service for carers which provides information and advice on, amongst other things, emergency and future care planning, advocacy, income maximisation and carers’ rights.

The Social Services & Well-being (Wales) Act 2014 (came into force in April 2016) is a wide-ranging Act bringing together the duties and functions of local authorities with the aim of improving the well-being of people who need care and support, and their carers.

A key principle is ‘well-being’ and it places a general duty on local authorities to promote the well-being of people ‘in need’ and their carers. Assessments of carers must include:

  • The carers willingness and ability to provide care;
  • Outcomes the carer wants for day-to-day life; and
  • Whether the carer works, or wishes to work, and to participate in education, training or recreation.

A national eligibility framework will operate to determine when individuals and carers have an enforceable right to support from the local authority. The Act also places a duty on local authorities to promote the development of social enterprises/co-ops/third sector organisations to provide ‘co-produced’ services.

The most recent specific legislation in Northern Ireland was the Carers and Direct Payments Act (Northern Ireland) 2002, which gave carers the right to an assessment and to be considered for services to meet their assessed needs. It placed a duty on Health and Social Care Trusts to inform carers of their right to a care assessment and the right to provide personal social services to support carers directly. However, Trusts retain discretion to decide whether or not to provide service(s) to meet a carer’s identified needs.

The Northen Irish Department of Health is currently taking forward a project to Reform Adult Care and Support. In December 2016 former Health Minister, Michelle O’Neill, appointed an Expert Advisory Panel tasked with identifying a range of proposals for change. On 11th December 2017 its Report was published, ‘Power to People: proposals to reboot adult care and support in NI’ designed to be considered alongside the wider Departmental reform programme ‘Health and Wellbeing 2026: Delivering Together’.

A key proposal is that the rights of family carers in Northern Ireland are put on a legal footing and that a strategy to bring them into the heart of transformation of adult care and support is adopted.

Social inclusion of carers, access to education and employment

Combining care and employment

There is widespread policy interest in the employment outcomes linked to caregiving. Employment rates of working age unpaid carers in England are below the national average. According to the 2011 Census, 55% of female and 45% of male adult carers respectively reported that they were economically active. Moreover, only 12% of female and 9.3% of male unpaid carers were working full-time (Office for National Statistics, 2013). Carers have been reported to struggle financially because reducing working hours, and giving up employment to care often leads to a sharp decrease in income, and sometimes to double loss of income if they are caring for a partner who also left employment due to illness. Such a decrease in income is often coupled with an increase in costs of caring and disability (Carers UK, 2015, 2016).

It has also been estimated that supporting carers into paid work could result in substantial welfare savings, for example, the UK public finances could gain £1 billion per annum in additional tax revenues from carers returning to employment, and it would save at least £300 million if it did not need to pay benefits that carers who are not working are likely to claim (Pickard et al., 2012). Given the potential benefits of improving employment outcomes for carers, there has been a prominent policy emphasis on enabling carers to combine care with paid work.

The priorities for carers’ employment have been reflected in a series of Carers Strategies. The 2008 Carers’ Strategy, for instance, emphasised the importance of flexible working conditions to enable carers to juggle caring responsibilities with paid work and family life (hM government, 2008, 2010, 2014b, Pickard et al., 2015). More recently, there has been increased policy interest on replacement care, which represents a distinct change from earlier policies, as former governments had rejected the idea of replacing unpaid care with paid services (Pickard et al., 2016). The 2008 Carers’ Strategy first articulated a commitment to fund replacement care to help carers to re-enter the labour market, to participate in approved training, and to allow carers to attend hospital appointments and screenings (hM government, 2008). The 2010 Carers’ Strategy asked Councils to develop and stimulate social care markets partly to provide good quality and affordable replacement care to support carers paid work (hM government, 2010).

The Carers Strategy 2014 noted how local authorities and other local partners should ‘explore ways in which people can be supported to combine work and care, and the market for care and support services can be stimulated to grow to encompass their needs’ (hM government, 2014b). The Act further noted that carer’s assessment must have regard to whether the carer works or wants to work, and the implementation guidance point out that carers’ needs may be met by providing replacement care to allow carers to look after their own wellbeing, to participate in recreational activities, or to combine care with employment or educational activities (Department of health, 2014). The document also makes it clear that carers will not be charged for replacement care, and that any charges would need to be met by the adult needing care in line with existing means-testing arrangements.

The replacement care rhetoric echoes a growing recognition of the necessity to overall provide better services for people with LTC needs as a means of supporting or replacing carers (Pickard et al., 2015). In practice, however, there is strong evidence that formal care packages provided by local authorities are significantly reduced when unpaid carers are available, other things equal, and therefore that the extent to which “replacement care” has been funded is at best limited. In 2013, the government committed to investigating the use of assistive technology fund to support carers in employment, and to help the development of a care market for self-funders. The government also developed a wide-ranging ‘back to work’ support package including a Work Programme[1], which encouraged self-employment and piloted a number of new initiatives for unemployed individuals, including carers. The recent focus on employment opportunities for people over 50 has also the potential to support older carers.

Despite numerous policy efforts to help individuals reconcile unpaid care with paid employment, many carers still feel these are incompatible. The Carers UK surveys reported that many carers of working age gave up employment to care because there were no suitable care services, the services needed were too expensive, the leave available from work was inadequate to combine care with employment, or they were unable to negotiate suitable working hours (Carers UK, 2014, 2015, 2016).

 

Carer’s leave

There are currently no rights for carers in the UK to take leave from paid work during a period of caregiving, other than for an emergency. The right to request flexible working was introduced in 2003 for parents of young and disabled children; extended in 2007 to carers of working age disabled adults and older people; and further extended to all employees in June 2014, in an attempt to destigmatise requests arising specifically from care-giving. Currently:

  • All employees with a minimum of 26 weeks employment with the employer can request flexible working.
  • Employers must deal with requests in a reasonable manner and consider whether the request can be accommodated on business grounds.
  • Flexible working can include changes to hours of work, times or place of work[2].

Time off in emergencies: Since 1996 all employees have had the right to a ‘reasonable’ amount of time off work to deal with an emergency involving a dependant, whether in the same household or in a separate household but dependent on the employee. Emergencies may include a breakdown in normal care arrangements, death or illness. There is no specified length of time that can be taken off, nor number of times emergency leave can be taken; both must be negotiated with the employer. Whether time off is paid or not is also at the employer’s discretion.

 

Cash benefits

In addition to support into employment, unpaid carers in the UK are eligible to claim cash benefits such as Carers Allowance. The Carer’s Allowance is paid at £66.15 per week. The amount paid is reviewed each year but is not necessarily increased.

Not every carer can get this benefit. To be eligible for this support measure, the carer should look after someone who gets a qualifying disability benefit and this, for at least 35 hours a week; be aged 16 or over, not be in full-time education, not earn over £123 a week (after deductions) and satisfy UK presence and residence conditions.

Although the allowance is not based on National Insurance records and it is not means-tested, eligibility depends on a number of criteria, including a demand that the carer provides at least 35 hours of care per week, and cannot earn more than threshold amount of £123 per week. Carer’s Allowance can affect other benefits that the carer and the person cared for receive. Individuals receiving Carer’s Allowance automatically get National Insurance credits which can help towards building state pension credit. Those who care for someone at least 20 hours a week are also eligible to Carer’s Credit-a National Insurance credits to build towards their state pension (available at www.gov.uk/carers-allowance).

Recent reforms to the state pension may impact negatively unpaid carers’ financial situation. In 2016, the number of years of National Insurance contributions required to quality for full state pension increased from 30 to 35 years, with those with between 10 and 35 years of contribution receiving a pro-rata amount (hM government 2015a). Although economically inactive carers may build up pension credits based on Carers Allowance, they are typically missing out on occupational and private pension schemes[3]. Increases in state pension age may further change unpaid carers’ position in the labour market[4].

Young carers: In 2011, there were 177,918 young unpaid carers (5 to 17 years-old) in England and Wales. This is an increase of almost 19% since 2001. Young carers tend to have lower levels of educational attainment than non-carers, and attainment decreases as more hours of care are provided. The think tank, the New Policy Institute, found that in 2013/14, 70% of working-age people caring for 20 hours or more per week did not have qualifications higher than GCSE level compared to 48% of non-carers. Just over half (55%) of parents of young carers (aged 5–17 years) reported their child had been absent from school at least a few times in the previous year compared to one-third of parents of non-young carers. 68% of young carers report being bullied at school, compared with 48% of all children and young people.

[1] The Work Programme was introduced in 2011 to create a single initiative to help the long-term unemployed, disabled or people with health conditions into work regardless of age (Department for Work and Pensions, 2012). In this fee-for-performance programme local providers are free to identify the most effective way of helping people into sustained work.

[2] Carers UK (2014a) Supporting Working Carers: A Guide to Requesting Flexible Working, http://www.carersuk.org/help-and-advice/work-and-career/your-right-to-flexible-working. Downloaded 5th September 2014.

[3] The Pensions Act 2008 set up an automatic enrolment for occupational pensions for those in employment to be phased in between 2012 and 2018 (Department for Work and Pensions, 2013). Any contribution made under occupational/private pension scheme will be available to an individual upon retirement, however the precise retirement options will depend on the years of service and the size of pension pot an individual accrued.

[4] Until 2010, men over the age of 65 and women over the age of 60 were entitled to claim state pensions. Following The Pensions Act 2007, the retirement age for women is being harmonised to match that of men by 2020. Moreover, the increase in retirement ages for both women and men to 68 will be implemented between 2024 and 2046, and The Pensions Act 2014 provides for a regular review of the state pension age at least once every five years (hM government, 2014c). The next review will take place in May 2017 and may bring further changes to pension system impacting unpaid carers.

Recognition and definition of carers

England – the four Carers Strategies published since 2008 have proven to be key policy documents to highlight plans and approaches to supporting carers. The document ‘Carers at the Heart of 21st-century Families and Communities’ set out the strategic vision and outcomes for carers in 2008. The updated priorities for the strategy were subsequently published in 2010, 2012 and 2014[1] by the Coalition government[2].

The Care Act 2014 was a landmark statute for carers as it introduced a duty on local authorities to provide carers’ assessment and support. Furthermore, voluntary organisations play a vital role in supporting carers in England as local and national charities provide services and support to carers which sometimes are unavailable elsewhere. Furthermore, local authorities often act in partnership with the voluntary sector and, after assessing carers’ needs, may refer or signpost carers to a voluntary organisation for support. A 2016 review by the Carers Trust revealed that while some carers were receiving good support, more could be done to raise carers’ awareness of their rights and ensure a consistently high standard of assessments.

In June 2018, the Government published an action plan entitled “Supporting carers today” and setting out a 2-year programme of work to support carers, ahead of the forthcoming social care Green Paper . The measures include: a new scheme to improve employment support for carers, a new Carer Innovations Fund to promote creative and innovative ways to support carers, and funding for a review of best practice in identifying young carers and access to support. Better practical support for families and carers is expected to be one of “the seven key principles” underpinning the forthcoming Green Paper on social care for older people.

Scotland:
The Carers (Scotland) Act 2016, which entered into force on the 1st April 2018, is designed to support carers’ health and wellbeing and help make caring more sustainable. The Act sets out a range of measures intended to improve the support given to carers, starting with the development an individual support plan that identifies their needs and provides them with information about support available, and puts a duty on local authorities to support carers whose identified needs meet local eligibility criteria. Local authorities and health boards are required to jointly prepare a local carers strategy.

Wales:
The 2016 Social Services and Well-being (Wales) Act introduced new rights and entitlements for carers and placed stronger duties on local authorities to identify, assess and support carers. In 2017, the organisation responsible for regulating the social care workforce in Wales, Social Care Wales, acknowledged that more could be done to support informal carers. Three national priorities have therefore been defined: supporting carers to access reasonable breaks from their caring role; improving carer’s recognition of their role and ensure their access to the necessary support; and ensuring that carers receive appropriate information and advice where and when they need it.

Northern Ireland:
Northern Ireland is lagging behind the rest of the UK in addressing carers’ issues, in terms of both strategy and legislative development. Caring for Carers (2006) is the most recent Northern Irish strategy. The most recent legislation was the 2002 Carers and Direct Payments Act (Northern Ireland). This gave carers the right to an assessment and to be considered for services to meet their assessed needs. The Government is currently taking forward a priority area in the Reform of Adult Care and Support project to recognise the contribution of carers and support them in their caring role .

[1] Recognised, Valued and Supported: Next Steps for the Carers Strategy; Caring for our future: Reforming Care and Support and Carers Strategy: Second National Action Plan 2014–2016 were published subsequently in 2010, 2012 and 2014 by the Coalition government.

[2] The Conservative-Liberal Democrat coalition government was established in 2010 and was in power until 2015.

Multisectoral care partnerships

Scotland:
Integration of health and social care is the Scottish Government’s ambitious programme of reform to instigate transformational change to the provision of health and social care services, ensuring that services work together to achieve better outcomes for Scotland’s communities. When it comes to long-term care, the aim is to:

  • shift the balance of care from institutional to community-based provision;
  • maximise the number of individuals able to live and be cared for in their own homes;
  • encourage better joint working between the NHS, Scottish Local Authorities, carers and the voluntary sector; and
  • reshape Care for Older People in response to a growing elderly population.

Identification of carers and assessment of their needs

Municipalities are mainly responsible for the support for informal caregivers. The budget for this task is EUR 100 million per year.19 Municipalities offer many forms of support from this budget. Types of support may differ from one municipality to another; unfortunately, there is no overview of what municipalities supply in general, or of the main differences between municipalities. Types of support may include, for example:

  • Information and advice on benefits to carers and assessment of carers’ needs (most municipalities have a support function for informal caregivers to help them with any questions regarding care and support);
  • Emotional support/counselling by both professionals and volunteers, and through opportunities to meet other informal carers;
  • Courses on aspects of care, on diseases and on network formation;
  • Practical help for the person being cared for (e.g. domestic help and meal services) and for the carer (administrative help and mediation in employment issues);
  • Material help for the person being cared for, such as home adjustments, or a parking permit for the carer;
  • Respite support, such as day care, short-term residential care, crisis care or holiday care;
  • An active role in stimulating professional caregivers to cooperate with informal carers (Radar 2015).

Access to information and advice

Access to information and advice, including information about the support available for carers, forms part of the in-kind benefits that are available to carers in the UK. These are the responsibility of local authorities and their type, coverage and value vary considerably between local authorities, both within and between the constituent countries of the UK. Within any local authority, different arrangements may apply to parents of disabled children and carers of disabled adults or older people.

Voluntary organisations are often the major providers of information and advice. Indirect benefits for carers may be obtained from the day care, home help and home care services, respite care and social work/counselling services for the person receiving care. A ‘Digital Resource for Carers’ was developed by Carers UK to offer carers the best digital products and online resources (such as the ‘Jointly’ app) hosted on a single webpage, creating a comprehensive support resource for carers. The Digital Resource can support prevention and help carers before they reach crisis point by offering them two e-learning courses, targeted information, the opportunity to build networks of support and to understand the financial support available, develop coping strategies for physical and emotional pressures, improve personal resilience and manage care more effectively.

Carers’ mental and physical health

The legal obligations imposed on Councils by the English Care Act 2014 include preventing, reducing or delaying carers’ needs for support and promoting carers’ wellbeing. This duty relates not only to people who are already carers but also people who may be about to take on a caring role or individuals who do not presently have any needs for support. The implementation guidance gives examples of interventions that may support carers such as assistive technology, access to information and advice, knowledge and skills to care effectively, avoiding falls and training in performing basic health care tasks. The document also mentions that prevention could include interventions helping carers to ‘have a life of their own alongside caring’, to have breaks from caring, develop mechanisms to cope with stress linked to caring and awareness of their own needs (Department of health, 2014). Despite the new prevention duties towards carers, an early report on how local authorities implement their Care Act duties found that carers were most often provided with information and advice services, and that many Councils were focusing their preventative work on people with care needs, rather than carers (Carers Trust, 2015).

The health and Wellbeing of informal carers are also captured in the existing – and planned – measures targeted at carers in Scotland, Wales and Northern Ireland.

Access to respite care

Services or funding to allow a regular break (e.g. monthly, annual) from caregiving are also among the in-kind services available to carers in the UK. Since 2001 carers have been able to receive funding for breaks in the form of a cash payment or personal budget of their own (separately from, and often in addition to, the services or PB received by a disabled person). Personal budgets have the potential to offer carers’ greater choice and flexibility over the form and timing of breaks. In 2010, £400m additional funding over four years was pledged by the British government for carers’ breaks, but this has not been repeated.

In England, Scotland and Wales, the local council will have a social services’ department responsible for arranging services to help support carers. In Northern Ireland, it is the local Health and Social Care Trust’s services department that will deal with that for carers. Access to these services takes place following the carer’s and care recipient’s needs assessed.

Training and recognition of carers’ skills

There are no UK-wide training, counselling or psychological support services for carers, although local voluntary organisations, websites and telephone help lines are highly significant.

TheCaring with Confidence training programme (England, 2008-2011) was designed as a free and innovative training programme aiming to help carers make a ‘positive change in their life and that of the person they care for’. Out-of-reach carers (including carers from ethnic minorities and socially disadvantages communities) were also targeted. The programme aimed to reach up to 37,000 carers in England, with a budget of £15.2m over three years. It offered high quality, standardised training through flexible, modular programmes delivered by facilitators based in local training provider organisations. The programme comprised a range of modules designed to help carers with various support needs (e.g. finance, practical care management, taking a break, accessing support and services). It was based on an empowerment approach. The path to accreditation was explored but not implemented due to challenges related to the cost attached to certification, and the difficulty to fit into a national system of qualification.

Participants of the programme were very positive and reported benefits included increased confidence about caregiving; new skills; improved health and well-being; better knowledge of support services; and indirect benefits for those receiving care. Many carers reported taking up new social, leisure or health activities, starting new training courses or finding paid work. Benefits were reported to continue after participation in the programme had ended[1].

[1] Yeandle and Wigfield, 2011a

References
  • The 2018 Ageing Report, Economic and Budgetary Projections for the EU Member States (2016-2070), EC, 2018
  • Houses of Parliament, Parliamentary Office of Science and Technology, Briefing on Unpaid care, 2018.
  • Quality and cost-effectiveness in long-term care and dependency prevention, The English policy landscape, J.Marczak et al., 2017
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, UK, 2016
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, EC, 2016
  • Adequate social protection for long-term care needs in an ageing society, European Commission, 2014
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