Support for older carers of older people: the impact of the 2014 Care Act
Published Jan 2019
Published Jan 2019
The 2014 Care Act gave carers new rights but questions were raised early on about implementation. Local Authorities (LAs) understood the value of unpaid care but were concerned about unknown additional costs arising from carers’ new rights. Previously, LA adult social services teams were said to have overlooked carers’ needs in favour of those of service users. The new legislation offered a chance to put this right.
Unpaid carers are people who look after, or give help or support to family members, friends, neighbours or others because of either long-term physical or mental ill-health/disability, or problems related to old age. There are more than half a million older people in England who are live-in carers for their partners (spouses, civil partners and others).
This study focused on older co-resident carers, who are increasing in number and play an important part in the social care system, but who have distinctive needs, and aimed to examine the impact of the 2014 Care Act on local authority support for them.
Specific objectives for the study were to:
The Act:
REVIEW OF WEBSITES
The review of 150 websites demonstrated that most LAs had updated their websites in order to comply with the 2014 Care Act and provide clear, accurate information for carers. However, a significant minority had not and many websites were not user-friendly.
BETTER KNOWLEDGE OF CARERS
Senior staff in all four case study sites described the strenuous efforts made after the Care Act to reach out to ‘hidden carers’ and improve their understanding of the local carer population. Interviews revealed that some local authority data systems do not recognise that an individual can be both a carer and a service user – a common occurrence in later life. To enable them to have a package of care
in their own right, LAs would register individuals as service users.
Consequently, their carer role would be unrecorded and unrecognised with implications for the LA’s understanding of their local carer population.
ORGANISATIONAL CHANGE
Following the Care Act, Sites 1 and 3 had outsourced assessments to a local third sector organisation (TSO), with the aim of raising the profile of carer support, completing more assessments and keeping costs down. The process of change was complicated but feedback suggests that these sites had made progress in meeting their aims.
Both developed new mechanisms for data sharing between the TSOs and adult social care (ASC) teams, when the service user needed support. Data from interviews suggest that when assessors in a specialist team refer a case to an ASC team, they often do not know what happens subsequently, which raises questions about whether their specialist knowledge is fully utilised.
In Site 4, with the aim of raising the profile of carer support, the LA had opened a new Carers’ Centre. Assessments remained with integrated ASC teams.
PREVENTION
Carer strategies in all sites emphasised prevention, which, in the context of austerity budgets, could mean reducing demand for LA services as well as intervening early to prevent a carer’s circumstances from worsening.
In all sites, prevention was associated with the LA’s ‘universal’ offer. Guidance to the Care Act describes universal services as those provided to all people in the local population, not only those whose needs are being assessed, such as befriending groups, community transport and advice on finances.
The case study LAs looked to other organisations, including health services and community groups in order to diversify support for carers. There was a strong focus on boosting carers’ resilience and skills, encouraging them to look after their health, ensuring they know about cash benefits and helping them obtain support from their families.
PARTNERSHIPS WITH HEALTH
Partnerships with health organisations varied between and within the four sites. In the region where Site 4 was situated, for example, strategic partnerships between LAs, Clinical Commissioning Groups (CCGs) and NHS Trusts were well developed, and the LA had responsibility for managing the Better Care Fund. More basic examples of work with health included ensuring carers had registered as carers with GPs and spreading information about carer support through leaflets in GP surgeries.
Where CCGs and Health Trusts were not involved in service-development at an early stage, interviewees told of subsequent difficulties in the day-today running of the services.
The review of websites and the four case studies showed wide variation in partnerships between LAs, CCGs, GPs and Health Trusts. Positive outcomes were identified for carers where partnerships were stronger.
ASSESSMENTS OF CARERS’ NEEDS
Assessments were the core business of the carer support workers. In the TSOs, some raised concerns that their changed relationship with the LA would compromise their reputation for person-centred work.
Levels of training, qualification and experience of assessors varied. In Site 1, none of the TSO staff had experience of statutory assessments and needed rapid training. In Site 2 the assessors were already specialist and experienced. In Site 4, training and qualifications were higher than in the other sites and front-line workers had a wider repertoire of skills – including in Occupational Therapy and Care Management. The research team observed the benefit of this in their observations.
In some assessments, long, detailed forms were used, which could help less-qualified staff feel more confident and ensure that essential data were gathered but could also prevent carers from expressing their needs in their own way. In Sites 1, 2 and 3, assessments by telephone, rather than face-to-face, were encouraged as part of the cost-saving strategy.
In all sites, assessors said that face-to-face assessments enabled a ‘more personable’ interaction, which was especially important for older carers who might not be as ‘savvy’ as others in obtaining support. They pointed to the therapeutic value of assessment, particularly important where the service user was approaching the end of life.
Joint assessments of carer and service user together were rare, with particular implications for older carers, potentially missing interrelated needs. The integrated multi-disciplinary teams in Site 4 were well-placed to focus on the needs of both service users and carers and develop holistic care plans.
Assessors expressed concern that the word ‘assessment’ was off-putting to an older carer who might think it referred to the carer’s abilities not their needs. The research team observed assessors’ strenuous efforts to reassure carers that this was not the case.
PRESSURES ON SUPPORT SERVICES
Documentary and interview data revealed that expected outcomes of carers’ assessments varied, dependent on whether these would be via assessment of eligible needs or through universal services. Support included the direct provision of breaks (respite), practical support (such as help with housework) and ‘replacement care’ for the service user – at home, in a day centre or residential setting.
Older couples sometimes wanted to take a break together and only Site 4 had arrangements in place for this. Austerity budgets in all four sites had placed support services under immense pressure, raising questions among participants about the purpose of assessments that ‘led nowhere’.
The shortage of resources also led to more inflexible support being offered to carers, with less opportunity for innovative solutions to individual problems.
Closures of independent organisations led to longer waiting lists for home-based personal care and a shortage of skilled staff in dementia care. Vouchers and periodic direct payments of around £300 enabled older carers to obtain practical help in the home and were popular but eligibility criteria had become tighter and fewer carers were obtaining them. Assessors expressed concerns about the potential effect of refusals on older carers’ health and risk of isolation, because they are less likely to re-apply, even when their situation
worsens.
SUPPORT FOR WHOM?
The question of whether a service is for the service user or for the carer emerged during observations and interviews. There were evident ‘grey areas’ concerning which individual qualified for a service.
‘Sitting’ services, for example, might be considered a break for the carer and organised by the carer teams at no cost or as replacement care for the service user, organised by LA adult care teams and charged for.
Different rules applied concerning what a sitter can do, how frequently or regularly. A sitter providing a carer’s break might give occasional help to a service user with continence problems, for example, but if a service user needs such help regularly, the LA would reclassify the carer’s break as replacement care for the service user and impose a charge.
Charges to service users for replacement (respite) care also affect older co-resident carers directly. According to frontline staff, the cost can deter carers from asking for support, with long-term implications for the care relationship.
Carers are disproportionately impacted by cuts to public funding, as both service users in their own right and as services reduce for the people they care for. As a result there is an increased responsibility and expectation on them to provide more care in order to pick up the deficit in the ‘system’.
In addition Local Authorities are requiring organisations such as ours to do more for less. This is at the time when demands on our services are increasing, due to carers presenting with increased complexity and in crisis.
This research highlights some of the difficulties carers face, and the need for local authorities to both provide and signpost to practical and accessible information and support, whilst recognising the valuable contribution they make as “expert partners in care”.
Carers Support Centre Bristol and South Gloucestershire (CSC) is a network partner of Carers Trust
Lloyd L, Jessiman T (2017) Support for Older Carers of Older People: The Impact of the 2014 Care Act. Phase 1. Review of Information on Support for Carers on Local Authority Websites in England, University of Bristol, Bristol.
Ailsa Cameron
Leona McCalla
Randall Smith
University of Bristol
School for Policy Studies
University of Bristol
8 Priory Road
Clifton
Bristol
BS8 1TZ
The research team from the University of Bristol were: Professor Liz Lloyd, Tricia Jessiman, Ailsa Cameron, Professor Randall Smith and Dr Agnes Bezzina.
An advisory group was present throughout the case study work.
