Carers Trust response to the Carers Strategy, August 2016 Contact: Laura Bennett, Policy and Public Affairs Manager [email protected] 020 7922 7745 / 07966 696 840 Carers Trust Key Recommendations for the national Carers Strategy Our vision is of a world where the role and contribution of unpaid carers is recognised and valued; and where carers have access to the trusted quality support and services they need to live their own lives. We therefore ask the government to commit to the following to make a genuine and long-lasting difference to carers and the local services that support them: 1. A nationally led, locally supported campaign to help identify and raise the profile of carers. This should promote carer friendly communities, employers, schools, colleges and universities, and should signpost carers to local services across England. 2. New legal rights for all carers introduced under the Care Act and Children and Families Act need to be fully delivered in all areas. National and local government, together with the NHS, should prioritise investment in this area to improve the lives of carers. 3. A major improvement in care coordination between health and social services is needed so that carers do not become burdened navigating the health and care systems on behalf of those they care for. 4. Policies which identify carers should be a requirement for all NHS services, facilitated by new integrated health and social care IT systems. 5. The weekly Carer's Allowance needs to be raised to reflect the contribution carers make. Charging carers for local services is an added hardship to carers. We believe it is against the spirit of the Care Act and should cease. Priority groups 6. Carers of people with dementia need to be identified as early as possible and provided with the information, advice and support they need to prepare for their caring journey in their own right. (see separate response) 7. It should be a requirement for mental health services to sign up to and implement the Triangle of Care or equivalent programme to identify, involve and support carers across all their services. (see separate response) 8. We urge the government to extend the Pupil Premium to all young carers. Young carers and young adult carers must be identified and supported to remain in and succeed in education, training, further and higher education, and work. (see separate response) © Carers Trust Full response Carers A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. Young carers are children and young people under 18 years old who provide unpaid care 1. (see separate submission) Young adult carers are young people aged 16-25 with unpaid caring responsibilities who are transitioning into adulthood. (see separate submission) Unpaid carers are the largest source of care and support to older people, disabled people and others with care and support needs in the UK. Carers provide care for people who would otherwise need NHS healthcare and local authority social care; or who would simply have to go without support entirely, leading to their needs getting worse and needing more expensive, crisis healthcare and packages of support. We have identified priority groups of carers based on what we hear from carers, and our Network Partners, and our policy and practice expertise. These groups are young carers, young adult carers, older carers, carers of people with dementia, and carers of people with mental health issues. Carers’ time is worth an estimated £132bn per year 2. Caring affects all of us. We are highly likely to either be a carer, or to become a carer, especially as we grow older. There are currently over 5 million carers in England 3 and three in five people will be a carer at some point in their life 4 . The 2011 Census in England identified 166,363 young carers aged under 18 years old and 292,820 young adult carers aged between 16 and 25 years old. These figures are likely to be an under representation as many young carers remain hidden. Research from the BBC in 2010 found that as many as 1 in 12 secondary school pupils have a moderate or high levels of caring responsibility, indicating there could be 700,000 young carers in the UK. The number of carers is fluid and can only ever be an estimate for the following reasons: People can become a carer at any time, outside of Census returns, for example. People can become a carer for a shorter period of time to support someone following an accident, support someone at the end of their life or support someone during an illness, for example. People do not always identify themselves as a carer, people see themselves as a “mother”, “husband” or “daughter”, and do not necessarily recognise their own needs as a carer separate from the person or people they care for. 2 Some people shy away from having a label attached to them, or are reluctant to approach services for assessment and support. Many services are poor at identifying carers and asking about their own needs, rather than the person they are caring for. Carers are unpaid. Carers are not, however, “cost-free”. They require care and support in their own right to enable them to care without risking their work, health and wellbeing. Adult social care funding and the impact on carers The number of adults in need of care is rising every year: it is expected to increase 30% by 2026.5 This comes at the same time as funding for social care has witnessed an 8.7% real-terms cuts between 2010/11 and 2014/156, this funding gap is estimated to continue to rise at £700m per year7 and, even if all councils use the new 2% precept, is expected to reach between £2.8bn and £3.5bn by 2020.8 This has severely affected the quality and quantity of support services local authorities are able to provide to those in need, with the result being that the number of people accessing social care services fell 25% over the course of the last parliament.9 Carers’ health and wellbeing Carers are reaching breaking point, and their health and wellbeing is adversely affected by their caring role. The adult social care funding gap is having a significant impact on the wellbeing of carers. 82% of carers who responded to a recent survey said that their caring role was having a negative impact on their health.10 If carers’ health continues to deteriorate it will not only have a distressing impact on their wellbeing, and also on the wellbeing and safety of the person or people they care for. There will be an impact on the NHS too, and over-stretched local authorities called upon to pick up caring responsibilities in a crisis. It is for this reason that a recent report from the King’s Fund concluded that increased investment in social care must be a priority for the 2015 Spending Review. 11 Young carers health is also adversely affected by their caring, please see separate young carers submission for more details. Cost to the economy and carers in employment The cost to the economy of carers’ withdrawal from the labour market is estimated to be £1.3 billion; the potential gain of supporting carers to work has been estimated to be £5.3 billion per annum 12. Carers who gave up work, retired early or reduced working hours said they did so because of the stress of juggling work and care (65%), because there were no suitable care services (30%) and because care services were too expensive (22%). Other carers said that their annual leave was not enough to manage caring with work (15%) and others were unable to negotiate suitable working hours (18%) 13. 3 Good practice in supporting carers in employment is not widespread enough, and would support carers to remain in work. Although parenting is different from caring, as a society we need to move towards workplaces who support carers in the same way we now consider it routine to support parents. As an employer, Carers Trust mentions that we support carers in our job adverts, offers the carers it employs up to five days paid carer leave (on top of annual leave), flexible working arrangements, and a carers staff group are involved in consultations by senior management about changes to the organisation and how these might affect carers working in the organisation. For more information about young adult carers and employment, please see separate young carers submission. Charges for carer support services Charging carers for their own social care support is a false economy. Statutory Guidance issued under the Care Act 2014 strongly suggests that charging carers for their own support is both a false economy and inefficient: 8.50 “Local authorities are not required to charge a carer for support and indeed in many cases it would be a false economy to do so.”, and 8.51 “While charging carers may be appropriate in some circumstances, it is very unlikely to be efficient to systematically charge carers for meeting their eligible needs.” 14 Carers Trust research A Charge on Caring (2015) 15 showed that nearly 5% of carers in England live in authorities where they face potentially being charged if they are assessed as needing support from the local authority. Eight of the 132 councils that responded currently imposed a charge, and another 23 were considering charging in the next 12 months. Costs ranged from £3 per week to £16.98 per week per carer. Carers are very often on a fixed or low income. While some of these amounts may not seem large, if carers are not able to take up support they are assessed as needing because they cannot afford it, this means that carers’ needs are not being met, leading to carers’ needs worsening, as well as that of the people they care for. We estimated that there are 247,539 unpaid carers living in the eight authorities which were charging in 2015. Adding to this, our Care Act for carers: One year on research (2016) 16 showed that while only 7% of carers who responded said they were being charged, the impact of this was “increased pressure” for 31% of these carers. Failing to support carers means failing to protect and secure the longevity of our health and social care systems. Carers Trust believes charging carers for their own support should stop. 4 Carers breaks, and the Better Care Fund One of the main things carers tell Carers Trust and our Network Partners is their need for a break and/or respite. This could include: A break from caring for a carer – a short or long time away from the person with care needs A break as a couple or family to go on holiday together, perhaps with support from workers so that a carer does not have to care while on holiday. In 2015, we analysed 45 plans 17 developed by Health and Wellbeing Boards for how they will spend the money allocated to them by the Fund. Our report The Better Care Fund: Better Care for Carers? raised serious concerns: Just 1 in 4 plans gave specific details on how they will have provided carer-specific support Carers will only receive an average of £24 each to help them pay for a break from their caring responsibilities Only 9 plans provided details on how they will use the Fund to support carers when the person they care for is discharged from hospital. To make sure the wellbeing of carers is placed at the heart of their plans, we made a number of recommendations to Health and Wellbeing Boards including: Future Better Care Fund plans must require Health and Wellbeing Boards to be more specific about what support they will provide to carers. Health and Wellbeing Boards must detail in subsequent plans how they will give support for carers after the person they care for is discharged from hospital. To make sure the issues affecting carers are properly tackled by the Fund, Health and Wellbeing Boards must do more to include carers in the development of their plans. We remain concerned that money for carers’ breaks is not being used to support carers, but swallowed up in general funds. The last Carers Strategy provided money for carers breaks, and there is support from amongst Network Partners for a similar measure to be included in the strategy this time. 5 Local carers services and funding pressures Carers Trust supports 115 Network Partners in England, who are the largest providers of quality assured, independent, local carers support in England (UK-wide figures are available). Each Network Partner decides which services to provide, based on a variety of criteria including local need, partnerships, commissioned services and other sources of funding. Examples of support Network Partners provide are: Emotional and practical support for carers including providing care in the home to enable carers to take a break. Carers emergency services, offering help in a crisis. Outreach work in GP surgeries, hospital wards and schools to reach carers who haven’t come forward for support. Information and advice on issues such as benefits, grants and other help available. Giving carers a voice so that they are listened to by local decision makers. Helping carers to share experiences though group support and social activities. Access to education, training and employment. Supporting young carers through preventative, whole family work and clubs, activities and mentoring in schools. In 2014-15 these services in England (UK-wide figures are available): Reached more than 418,000 carers Including 19,245 young carers And 16,871 young adult carers Employed 4,848 staff Involved 4,904 volunteers As a result of a piece of work completed with Baker Tilly we are able to say that the value of services provided by carers centres is calculated to be £814m a year.18 Over 50 Network Partners offer regulated care services which means they provide the special quality of care that gives carers the peace of mind to let someone else care for their family member or friend. By providing flexible, tailored services to people of all ages and with a range of disabilities and health conditions, Network Partner staff build long and trusted relationships with the carer and person they care for. In 2013/14 they provided just under 5.14 million hours of breaks. Regulated care providers offer care in the home to enable carers to take a break. The needs of both the carer and the person they care for are assessed and regularly reviewed to ensure the service is tailored to both their needs. Carers Trust also helps thousands more carers directly, through our free online services Carers Space (space.carers.org), Babble for young carers under 18 babble.carers.org and Matter for young adult carers 16-25 matter.carers.org. 6 Many local services however are experiencing significant pressures, including destabilising tendering processes which create uncertainty across this strategically important sector. Local authorities can have a stronger impact on both local carers support services, and the carers they support, through stronger commissioning and by judiciously utilising tendering as one of a range of approaches to transforming services. Where tendering is used, strong engagement with carers and longer contracts can help create stability. Central government has a role to play in this by encouraging this kind of robust commissioning practices. Examples of good practice we are aware of include: Coventry City Council and Carers Trust Heart of England In partnership with Carers Trust Heart of England, Coventry City Council provide a service at Coventry Central Library to ensure more carers are identified and supported in their caring role. This site was identified as analysis showed the central library was the council building with the highest footfall in the local authority’s area. This means that carers can be identified who were not previously in touch with the local authority, promotes collaborative working with the third sector, as well as the non-stigmatising location to talk to carers. London Borough of Hillingdon and Hillingdon Carers and Carers Trust Thames In the London Borough of Hillingdon support for carers is provided by a collective of third sector organisations. The Hillingdon Carers Partnership is led by Hillingdon Carers and supported by Carers Trust Thames – both Network Partners of Carers Trust – and they are working with a range of other specialist voluntary organisations. This model is not unique and other ‘combined’ carers services contracts are appearing across Greater London; however, what is unique in Hillingdon is the relationship between the providers and the council and this is reflected in the fact the council has awarded a 5 (+1+1) year contract to the partnership. This stability for the partnership is designed to allow the organisations to find new ways of working, draw down resources from other sources, share their own resources across the partnership and to work closely with statutory services to find collective solutions to the multiple challenges we all face. Carers benefit from this stability in multiple ways, most notably because staff in the partnership are focusing their energies on creating capacity in the system and finding innovative ways to improve and expand support for carers, rather than being caught in a circle of funding applications and redundancy management. Leeds Carers Services An example of good practice is in Leeds where their Health and Wellbeing Boards have made a commitment to carers. Support for carers is part of the local performance dashboard, and carers are written into the Joint Health and Wellbeing Board strategy – launched in April 2015. A joint post sits across the local authority and CCGs, and both work closely in partnership with Carers Leeds – a Carers Trust Network Partner. Social workers are located in Carers Leeds’ building in the city centre. Some carers will not want or need a statutory assessment, some carers’ assessed needs will not be eligible 7 for support, whatever the carer’s situation Carers Leeds staff will work with them: “We have always worked on the basis of having a conversation in the first instance with carers… we try to make things as uncomplicated as we can for the carer. We explain what our service can offer, in terms of scope, and the co-working we do with adult social care. No matter what the outcome of a statutory assessment may be, we ensure there is something Carers Leeds can offer to support a carer”. There is a planned microcommissioning site where carers can enter their details and needs, and see what support is available; social workers will have access to this too. The impact of the National Living Wage (NLW) on providers Even if all councils choose to use their new power to raise council tax by 2%, the returns will not come in fast enough to ensure that care providers can pay the new National Living Wage (from April 2016). The UK Homecare Association has estimated that councils will need an additional £753 million to ensure that their care providers can pay their staff the new wage level (UKHCA, 2015). Even if they choose to implement the new 2% precept, there is no guarantee that councils will use it to help providers pay the new wage level and it certainly will not raise funds quickly enough to meet the April 2016 deadline. Without that additional funding, however, already stretched care providers will not be able to meet the new wage requirement and will be forced to choose between heavily scaling back the support they provide or consider closing down completely. A survey of Carers Trust’s Network Partners found that six out of seven predicted they will have to reduce the levels of service they provide in order to pay their staff the NLW, if funding for social care is not increased. Five out of seven feared for the viability of their entire organisation. 2% council tax precept Although the 2% council tax precept is welcome, it is not enough for local authorities to cover the full cost of implementing the NLW, amongst other social care funding pressures. A recent report from the National Audit Office highlighted that, despite the recognised importance of ring-fencing social care from the effects of budget cuts, the financial pressures facing local authorities is increasingly forcing them to cut-back on social care spending: adult social care accounted for 15% of total savings made by local authorities from 2010-2011 to 2011-2012 but made up 40% of savings between 2013-14 and 201415.19 Similarly, the Local Government Association (LGA) has recently issued a warning that councils are increasingly scaling back the support they offer to young people: money spent on youth services has fallen 45% since 2010.20 With new local authority responsibilities and duties being introduced by both the Care Act and the Children and Families Act, this continued slide simply won’t be sustainable. 8 The LGA representatives told our Care Act for carers: One year on Commission that Better Care Fund money needed to be brought forward for social care to support implementation of the Care Act. Cllr Izzi Seccombe, representing the LGA, said: “Councils have had to deal with a £5 billion funding gap since the 2010 Spending Review. They have been successful in doing so but only by making savings and services worth £2.5 billion from within adult social care (with a similar amount made from other council services beyond what would have been projected). The Care Act therefore came into force on unstable foundations. The 2015 Spending Review (government spending plans to 2019/20) and the 2016/17 Local Government Finance Settlement (total, confirmed local government funding for 2016/17) set out a scenario in which the amount available in 2019/20 will be broadly similar to what it is today. However, new responsibilities – such as inflation, demography, and the National Living Wage – will create significant cost pressures that will have to be offset by equally significant further savings. It is inevitable that adult social care will have to contribute its share of savings to this process, which will impact further on services.” Turning to the precept and councils’ confidence to implement their duties, Sarah Mitchell, Director of Social Care Improvement, LGA also told our Commission: “144 out of 152 councils have used the social care council tax precept, raising an additional £382 million for social care and support. The worry is that this is not sufficient to deal with the multitude of pressures councils are facing. For some councils, the additional funding raised by the precept is not enough to cover the full cost of the National Living Wage, let alone all other pressures. For many others the National Living Wage will swallow up the bulk of the precept, again leaving numerous other pressures exposed. That is why we are calling for £700 million of the additional money for social care via the Better Care Fund (i.e. the proportion of the £1.5 billion by 2019/20 that is not dependent on savings) to be brought forward to help deal with immediate funding challenges.’’ 9 The Care Act, Children and Families Act, and carers Carers Trust welcomed the Care Act and Children and Families Act, which brought important new rights to both adult carers, and young carers in transition. Young carers and parent carers have particular rights under both the Children and Families Act and Care Act. Young adult carers are not defined in these laws, although it is clear to see that implementing the transition rights for young carers under the Care Act would support young adult carers to make a successful entry into adult life. We believe the Care Act has the potential to transform carers’ lives, however the Care Act will only fully realise its potential if the social care system in England is given a secure financial grounding. Our Care Act for carers: One year on report 21 (which we are also submitting as evidence) demonstrated clearly that councils are not able to fulfil their obligations to carers under the new legislation, in large part due to funding. Spend on prevention and early intervention is in retreat. Our top three key recommendations in that report: National and local government, together with the NHS, urgently invest in the support needed to ensure that the new legal rights for carers are fully introduced in all areas, so that carers receive an assessment, support and breaks they need to be able to choose how and when they care. We believe it is essential that local authorities ensure that all social workers and assessors are appropriately trained, and are able to reflect the wellbeing principle in assessment and care and support planning. Local authorities, with the Local Government Association (LGA) and the Association of Directors of Adult Social Services (ADASS), should review their systems for monitoring progress in implementing the Act. The Short- and LongTerm (SALT) return should be reviewed, so that it captures all assessment and support activity for carers, including prevention. For our full recommendations please see page 22 of the report. Carers responding to the report were mixed in their feedback, for some it was clear that the Care Act was beginning to work; for too many, it was clear that the Care Act was not. Councils giving evidence to the report acknowledged that they were unsure what they needed to do to meet their prevention duties to carers. Carers generally did not feel they had noticed a difference in terms of prevention. Individual social workers who responded (albeit in small numbers) also acknowledged that this was a difficult area for them. This echoes Carers Trust’s earlier research Prevent, Reduce, Delay (2015) 22 into the prevention duty under the Care Act, which showed that: 10 Councils are still developing their approach to prevention. Just 27 councils (20% of respondents) mentioned a “Prevention Strategy” or “Prevention Approach” in their FOI responses. Of those, 13 are still developing their strategies. Prevention strategies are not targeted at carers. Of the 27 councils that mentioned a “Prevention Strategy” or “Prevention Approach”, 11 (40%) made no reference to carers. Prevention policies lack a strategic approach. Although councils were able to list a range of support services, it was difficult to distinguish from the FOI responses we received a clear overarching prevention strategy that can target and support carers depending on their level of need. Prevention policies are not carer-specific: Only 7% of councils mentioned a “Carers Strategy” and throughout it was difficult to distinguish between the services being provided by councils to support the population in general from those designed specifically for carers. Councils are not proactively identifying carers. Only 13% of councils mentioned that they are doing work to identify carers Carers Trust believe the Care Act has the potential to have a positive impact on carers. Councils, working with the NHS, need to prioritise investment in full preventing carer breakdown to avoid even greater cost to social services and the NHS. Local carers services are well placed to support local authorities to deliver their Care Act duties in identifying, assessing and supporting carers. Many Carers Trust Network Partners are already carrying out devolved statutory duties, such as carers’ assessments and support planning, as well as a range of other holistic services. As detailed above, this has difficulties connected to funding. Queries and further information Please contact Laura Bennett, Policy and Public Affairs Manager, [email protected] 020 7922 7745 / 07966 696 840 About Carers Trust Carers Trust is a major charity for, with and about carers. We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. We do this with a UK wide network of quality assured independent partners, through our unique online services and through the provision of grants to help carers get the extra 11 help they need to live their own lives. With these locally based Network Partners we are able to support carers in the community with information, advice, emotional support, hands on practical help and access to much needed breaks. We offer specialist services for carers of people of all ages and conditions and a range of individually tailored support and group activities. Our vision is of a world where the role and contribution of unpaid carers is recognised and they have access to the trusted quality support and services they need to live their own lives. 12 ADASS, ADCS and The Children’s Society (2012), Memorandum of Understanding (ADASS, ADCS and The Children’s Society) 2 Carers UK, (2015), “Valuing Carers”. Available online: http://www.carersuk.org/forprofessionals/policy/policy-library/valuing-carers-2015 3 UK Census 2011. Source: Office for National Statistics licensed under the Open Government Licence v.1.0. The number we have used is our estimate of the number of carers across the UK based on the Census figures. The number of carers is fluid and can only ever be an estimate for the following reasons: People can become a carer at any time. People can become a carer for a short period of time to support someone following an accident, at the end of their life or during an illness, for example. People do not always see themselves as a carer and do not necessarily recognise their own needs. Some people shy away from having a label attached to them. 4 Carers UK (2001), ‘It Could Be You – A Report on the Chances of Becoming a Carer’. Carers UK. 5 Future Demand for Social Care, 2005 to 2041: Projections of demand for social care for older people in England, PSSRU 2008; and Future Demand for Social Care, 2005 to 2041: Projections of demand for social care and disability benefits for younger adults in England, PSSRU, 2008. 6 The Kings Fund (July 2015), “The Budget: Health and Social Care Briefing”. Available online: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Budget%20briefing%20July%202015% 20final_0.pdf 7 Association of Directors of Adult Social Services (ADASS), (2015), “Association of Directors of Adult Social Care (2015), Spending Review 2015: a representation from across the care and support sector. Available online: https://www.adass.org.uk/uploadedFiles/adass_content/news/press_2015/Spending%20Review%20Repr esentation%20from%20Care%20and%20Support%20Sector.pdf 8 King’s Fund (2016), The Spending Review: What does it mean for health and social care? Available online: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Spending-Review-NuffieldHealth-Kings-Fund-December-2015_0.pdf 9 The Kings Fund (July 2015), “The Budget: Health and Social Care Briefing”. Available online: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Budget%20briefing%20July%202015% 20final_0.pdf 10 Carers UK (May 2015), “State of caring, 2015”. Available online: www.carersuk.org/forprofessionals/policy/policy-library/state-of-caring-2015 11 The Kings Fund (July 2015), “The Budget: Health and Social Care Briefing”. Available online: http://www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Budget%20briefing%20July%202015% 20final_0.pdf 12 Age UK and Carers UK (2016), Walking the Tightrope https://www.carersuk.org/forprofessionals/policy/policy-library/walking-the-tightrope-the-challenges-of-combining-work-and-care-inlater-life 13 Carers UK (2015) State of Caring 2015, Carers UK 14 https://www.gov.uk/guidance/care-and-support-statutory-guidance/charging-and-financial-assessment 15 Carers Trust (2015), A Charge on Caring https://carers.org/use-and-impact-charges-support-carers 16 Carers Trust (2016), Care Act: One year on https://carers.org/care-act-carers-one-year-commission 17 Carers Trust (2015), The Better Care Fund: Better Care for Carers? https://carers.org/better-care-fund 18 Clifford, J, Theobald, C, Mason S (2011), ‘The Princess Royal Trust for Carers: Social Impact Evaluation using Social Return on Investment’. The Princess Royal Trust for Carers. 19 National Audit Office (June 2015), “Care Act first-phase reforms”. Available online: http://www.nao.org.uk/wp-content/uploads/2015/06/Care-Act-first-phase-reforms.pdf 20 Local Government Association, “The LGA’s Budget 2015 Submission”. Available online: http://www.local.gov.uk/documents/10180/6869714/LGA+Budget+2015+Submission/9b42205c-e32a4515-8861-dba24fba247e 21 Carers Trust (2016), Care Act: One year on https://carers.org/care-act-carers-one-year-commission 22 Carers Trust (2015), Prevent, Reduce, Delay https://carers.org/carers-trust-report-how-are-councilsimplementing-new-care-act 1 13
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