Background: This article presents an analysis of policies on young carers in England, considering both the design but also the lived experience of policy subjects. Method: Drawing on affect theory we can increase understanding of the reach of these policies into family life and the nature of English policy‐making focussed on this group. This analytic framework presents the opportunity to draw on the use of affect theory developed in other disciplines but less so in the discipline of social policy. Findings: The article argues, firstly, that normative messages through policy design are conveyed to families through affects. Secondly, it argues that hierarchies of subject positions established within policy design are reaching and impacting on young carers and their families through affective pressures. Conclusion: This article demonstrates that affect theory contributes to the analysis of social policies on young carers and also illuminates the impacts of policies in the context of limited formal implementation.
Increased longevity means that an increasing proportion of people living with a learning disability are aged 45 and over and are transitioning into older age/retirement. It also means that ageing family members are increasingly playing an extended caregiving role into later life. A small scale study was carried out in the New Forest, Hampshire during 2018-19. Twenty-one older carers (5 were male) were interviewed about their experiences of caring for their older adult family members with learning disabilities and/or autism. The average age of the carers was 75 though 20% of the sample were over 80 years old.
Older carers are struggling to continue to care for their loved ones. Four main themes described their struggles:
1. Transition to retirement was felt to be a misnomer in the face of continuing responsibilities and duties to care and/or manage care. Little respite was available to take a break, take stock, or just do the things that most other ‘retired people’ do.
2. The Care Act 2014, despite its laudable goals, is yet to be applied sufficiently well to make a difference to the lives of people with learning disabilities and/or autism or their carers who took part in this study.
3. Challenges with social service provision including lack of continuity of social worker input, variable and declining levels of expertise, and pejorative attitudes towards carers appears to be worsening. That said, carers are understanding of the pressures on health and social care and are willing to work with them to improve the situation.
4. Carers’ fears for the future as they contemplate who will care for their loved one once they are no longer able to care for them.
There is a need for age-appropriate housing, weekend activities for people with learning disabilities, and respite for carers. Transformational change which includes trust-building and co-production between health and social services and carers is needed to improve relationships between the parties. Meaningful partnerships between social workers and carers will reduce the problem of the frequent need of carers to urge social services to provide adequate care and support. Information on options for people with learning disabilities transitioning into old age as well as practical support will help reduce the risk of crisis situations happening when older carers can no longer care.
Darling et al discusses the UK's Children and Families Act 2014, Section 96 which defines a young carer as a person under 18 who provides or intends to provide care for another person. A survey in 2018 asking 925 children in England to outline if they provide care, and to describe the care provided and to whom, reveals the extent of caring by children is much higher than previous estimates. If results of the research reflect the country as a whole, then there are thousands of secondary school children (aged 11 to 16 years) in England caring for an individual at home, and that approximately 7% of young people have a significant caring role in the home for an ill or disabled relative.
The Care Act 2014 amended legislation relating to government responsibilities for adults with care needs. It set out new statutory responsibilities for the support of family or informal carers. As part of a study investigating the impact of the Care Act 2014 on family carers in England, we undertook a contextual literature review, focusing on parliamentary debates available online from Hansard. We describe the content of debates seeking to amend the law relating to carers and aspirations for the proposed reforms. We highlight the role of parliamentary carer champions, as well as carer-related themes and the lack of controversy over this subject.
Summary: The policy of personalisation in English adult social care prioritises choice and control by service users over the support they receive. Carers also have rights to assessments and support, but these rights have developed separately, so interdependencies between carers and service users may be overlooked. Moreover, it may be difficult to reconcile these divergent policies in routine practice. This article reports findings from a study examining the roles played by carers in England in the processes of assessment, support planning and management of personal budgets for disabled and older people. The study was conducted between January 2011 and February 2013. It involved a survey of 16 adult social care departments across 2 English regions, and interviews with personalisation and carers lead officers in three local authorities. The Framework approach was used to manage the data, and analysis was done thematically. Findings: Practice was fragmented and inconsistent. Carers were reported to be involved in service users' assessments, and also asked about their willingness and ability to continue caring, but not necessarily about their own needs. Separate carers' assessments were reported to be usually offered, but take-up was low and lead officers' opinions about their value varied. Any help given by carers reduced the level of service users' personal budgets, but there was no evidence that carers' own needs (as identified in carers' assessments) were taken into account. Applications: Greater clarity and consistency is needed, especially the linking of service users' and carers' assessments and finding appropriate ways to meet both. These changes will become increasingly urgent with the implementation of the 2014 Care Act.
Cities across England will see a growing number of informal carers as the population ages, many of whom do not begin this role equipped with the knowledge they need to access social care services and supports. One of the more significant changes brought by passage of the Care Act of 2014 is local governments’ increased responsibility to improve the provision of information and advice on social care to informal carers, long recognized as a policy priority. To better understand where improvements can be made on a local level in order to achieve the goals laid out in the Care Act, this study considers carers’ experiences accessing information and advice on social care services and supports in a city with a population of over 250,000 in the south of England. This was done through the collection of semi-structure qualitative interviews with 11 carers to people aged 65 and older from April 2015 to July 2015. Thematic analysis of interviews revealed a tension between carers’ varying levels of knowledge and experience with the social care system and information services’ one-size-fits-all approach to providing information. Findings suggest local governments should focus on creating information services that more actively reach out to carers, provide greater guidance to those carers who need it, and work to flexibly meet informal carers information needs, acknowledging that some carers will be less familiar than others with aspects of the social care system.
Many of us may be able to remember the general air of excitement that surrounded the writing and publishing of “No Secrets” (Department of Health, 2000) and “In Safe Hands”(Welsh Assembly Government, 2000), although we might wish we were young enough not to! At the time, the documents generated mixed feelings amongst service users/customers and carers as well as professionals/practitioners. To some they were a major step forward on the road to raise the status of “vulnerable adult protection” (as it was then known) closer to that already enjoyed by child protection and domestic violence to others it was a missed opportunity to go even further along that road and to a small number it was a step too far when the perception was that existing legislation provided sufficient protection and any increased powers amounted to state intrusion into the private lives of adults.The constitutional situation across the four countries of the UK meant that England and Wales had slightly different structures put in place to respond to situations of abuse and neglect, while Scotland and Northern Ireland were responsible for their own processes and took different approaches.Even within England and Wales, “No Secrets” and “In Safe Hands” were issued as guidance to Local Authorities under existing legislation and, as such, did not place any requirements on any other agencies or organisations to cooperate with the Local Authority. In fact, it could be argued that Local Authorities did not have to act in accordance with guidance if they could see good reason why not. Indicative of the anomalous position of the guidance is the situation in England regarding the requirement of Local Authorities to produce multi-agency policies and procedures to protect vulnerable adults – it is interesting to note how they had to produce multi-agency policies and procedures, but no other agency was required to work with them to do so!
The Care Act aims to make the care and support system clearer and fairer for those who need it. It includes provision for a national minimum eligibility threshold, gives carers a legal right to assessment, and reforms the way that care is paid for. The Act also makes provision about care standards, establishes and make provision about Health Education England, to establish and makes provision about the Health Research Authority. The Act was passed on 14 May 2014 and comes into force in April 2015.
Direct payments are crucial to achieving the Government's aim to increase independence, choice and control for service users and their carers through allowing them the opportunity to arrange their own personalised care. The Health and Social Care Act 2008 extends the availability of direct payments to those people who lack the capacity to consent to their receipt. In addition, the government is also reviewing the current exclusions to receiving direct payments for those people who are subject to various provisions of mental health legislation in light of the modernisation of mental health law brought about by the Mental Health Act 2007. The Government is now consulting on regulations relating to these two changes.
Information on what the changes introduced by the Care Act will mean for carers and the cared for. The resource provides an explanation of care and support in England and outlines key elements of the act, including: deferred payment agreements; needs and eligibility; support for carers; and cap on care costs.
A short guide providing the key points for practitioners to consider when recommending a supported self-assessment for an adult requiring care, or for their carers with support needs under the Care Act 2014. It looks at delivering a supported self-assessment and at how local authorities can ensure that the supported self-assessment is an accurate and complete reflection of an individuals needs and outcomes. It then covers what needs to be done after the supported self-assessment and assurance process has been completed. Lists the benefits and challenges of supported-assessment and provides a check-list of core duties. The guide should be read in conjunction with the Care and Support (Assessment) Regulations 2014 and Chapter 6 of the statutory guidance.
While there is increased recognition of the role of family carers in supporting adults with social care needs, some groups of carers are overlooked or hidden from professional view. Carers of people with substance misuse problems may be among this group since they are at risk of feeling guilty and stigmatised; targeting and eligibility criteria may concentrate professionals’ activities on people with high levels of need for practical support and there may be complex family dynamics where the role of carer does not fit traditional models. This article draws on a study of carers’ workers (professionals whose role entailed a specific remit to work with carers, such as carers support workers) and family carers undertaken in four areas of England. A total of 86 interviews were conducted (late 2011–2012), of which, just over a quarter (26%) involved some discussion of substance misuse. The findings were analysed thematically. The findings from the study were later reported to a focus group of practitioners and carers with experience of drug-and-alcohol support for validation in 2014. Key themes in relation to social work practice with carers of people with alcohol and other drug problems were those of insecure funding of voluntary sector carer services; balancing generic support for family carers and specific support for certain groups of carers; and feelings among carers that the drug-and-alcohol problems experienced by the person they were supporting contributed to them feeling excluded from general carers’ support. The article concludes that drug and alcohol social workers should be alert to the implications of the Care Act 2014 and its provision for carers, and that carers’ workers should be confident in being able to refer carers to appropriate support in either general or specific settings or raise this as an unmet need if such provision is not adequate locally. Social work trainers and educators should ensure they are working within evidence-based interventions to enhance professional capacity and capability.
The purpose of this guidance is to secure the implementation of the Adult Autism Strategy “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England” 2010 as updated by Think Autism (2014) by giving guidance to Local Authorities, NHS Foundation Trusts and NHS bodies. The guidance focuses on the areas which section 2 of the Autism Act 20097 requires to be addressed, in each case identifying what Local Authorities, Foundation Trusts and NHS bodies are already under a duty to do under legislation, what they are expected to do under other existing guidance, and what they should do under this guidance. Local Authorities, NHS bodies and Foundation Trusts should already be doing much of what is expected of them in complying with this guidance as they should have followed the 2010 statutory guidance (which this guidance builds on and replaces).
This chapter explores working partnerships with carers of older people and particularly carers in full or part-time employment who may have many stresses and conflicting demands in their lives. The legal and social context of caring is traced from The NHS and Community Care Act (DH, 1990) and subsequent care in the community initiatives. Another milestone was The National Strategy for Carers (DH, 1999a), though there has only recently been a government commitment to partnership with carers against very patchy previous provision. Six reasons are advanced for the relative powerlessness of carers compared to service providers. There are 5.2m carers in England and Wales and 1m of these providing over 50 hours of care weekly. There is a brief outline of the caring experience and three individual case studies. The National Strategy for Carers identified four rights for carers in maintaining their own health and lifestyles and how partnerships with service providers might operate, in addition to support services. [...]
Social workers have made a significant contribution to the development and delivery of palliative care. Both palliative care and social work are rapidly evolving but, given their changing contexts and increasing workloads, can they sustain compatibility? Advances in treatment of life-threatening illness mean that people live longer in a period of palliative care. Social work has undergone radical change in the wake of the 1990 NHS and Community Care Act and subsequent local-authority modernizations, with social workers now given the role of care managers, rather than the more traditional ‘casework’ or therapeutic role. This paper aims to explore the current and potential role of the social worker in palliative care for people with cancer and other prolonged life-threatening illness. It draws upon evidence from a prospective qualitative, patient-centred research study, which detailed the experiences of forty people with lung cancer and advanced cardiac failure, and their personal and professional carers (Murray et al., 2002). A total of two hundred and nineteen qualitative interviews were carried out.
We found that social workers were conspicuous by their absence from the lives of these forty vulnerable adults, who were living and dying in the community with many unmet needs which, potentially, could be met by social-work input. The study highlights six areas of concern in which social-work assessment and intervention could have impacted on dying patients’ quality of life and that of their carers: loss and dependency, family-centred issues, carers’ needs, practical tasks, emotional and spiritual struggles, and finally, support needs of staff. These areas are outlined to explore the territory which a social worker might inhabit if resources and policies permitted.
The article examines how the Care Act 2014 is changing social care provision in Great Britain. Topics discussed are the concept of a person's well-being, the safeguarding duties of local authorities under the law, the physical, mental and emotional well-being needs of carers, the national eligibility criteria for social care services, the changes to the way care social services are paid for, and the transition arrangements from the old to the revised law.
Aims. This study aimed to provide an in-depth understanding of the process of hospital discharge experienced by the carers of patients ‘at risk’ of unsuccessful discharge from medical wards in three hospitals in the North of England.
Background. The Community Care Act and the Carers Recognition and Services Act placed responsibility on service providers to ensure the smooth discharge of patients from hospital making sure that appropriate community services are in place to support the patient and their informal carer following discharge from hospital. The study, from which this paper is taken, identified patients at risk of unsuccessful discharge and tracked the experiences of the patient and their carer through the discharge process. For the purpose of the study unsuccessful discharge is defined as unplanned readmission within 6 weeks of discharge or extended length of stay.
Design. The study combined qualitative and quantitative methods to identify factors leading to unsuccessful discharge. Logistic regression was used retrospectively with the records of 1500 patients to identify factors predicting unsuccessful discharge. A sample of medical patients predicted to be at risk of unsuccessful discharge, their formal and informal carers, were followed through the discharge process using qualitative techniques to look at decision-making and outcomes related to discharge.
Findings. This paper presents findings relating to patient/carer experiences of the discharge process. It explores the obligate moral climate in which the role of carer is negotiated between professionals, patients, family members, friends and neighbours and the differing assumptions about duty associated with caring roles in hospital and in family and community settings.
Conclusion. The discussion adopts a critical theory perspective to examine the contradictions confronting practitioners, patients and carers arising from hospital policies which promote cost-effective and efficient use of expensive technical resources while simultaneously seeking to identify and meet the needs of patients and carers for care.
The Care Act has been widely welcomed. Implementation of the Act however, is far from complete. 69% of carers responding to our survey noticed no difference since its introduction and many expressed frustration and anger at the lack of support they received in their caring role.
This e-learning training module aims to support re-orientation and re-skilling of staff directly involved in decision-making using Fair access to care services (FACS) and eligibility criteria, their supervisors and line managers, and those monitoring and reporting on the operations of the system. Sections cover the implications for practice of the revised FACS guidance; what FACS says about assessment, support planning, reviews and transitions; supporting carers; and the financial implications of FACS 2010, including resource allocation systems, personal budgets, and self-funding and charging. The module also includes a series of cases to test your assessment skills. [NB As of April 1 2015, this course has been de-listed and is no longer available. Fair access to care has now been wholly replaced by new practice and guidance described in the Care Act 2014].
This report considers if the Department of Health is carrying out phase 1 of the Care Act in a way that is likely to achieve the government’s objectives and be value for money. It focuses on the new duties to provide assessments and services to carers, and help for self-funders, examining: the policy, financial and demographic contexts within which the changes are being implemented (Part One); the Department’s arrangements to carry out the Care Act, and local authorities preparation for 2015-16 (Part Two); and funding which the Department has provided to introduce the Care Act in 2015-16 (Part Three). The report estimates that phase 1 of the Act will cost £2.5bn to carry out from 2013-14 to 2019-20, more than half of which is for carers’ assessments and services – a new entitlement and the largest single cost. The report acknowledges that the Department consulted carefully on the Act, to understand the main risks and respond to sector concerns, and that there is wide support for the Act.
The Health and Social Care Act 2012 introduced significant amendments to the NHS Act 2006. This guidance supports two legal duties, requiring clinical commissioning groups (CCGs) and commissioners in NHS England to enable patients and carers to participate in planning, managing and making decisions about their care and treatment through the services they commission; and to enable effective public participation in the commissioning process, so that services provided reflect the needs of local people. It highlights ways in which NHS commissioners can fulfil their statutory responsibilities, and thereby deliver personalised and responsive care to all. The document is in interactive pdf format, including as it does a wide range of tools, resources and case studies.
This is a guide to what co-production is and how to develop co-productive approaches to working with people who use services and carers. It is aimed at managers and commissioners, frontline practitioners and people who use services and carers.The first section looks at what co-production is and the principles on which co-productive approaches should be based. It also outlines the policy context, including how co-production relates to the Care Act 2014 and personalisation, the economic impact of co-production. The second section provides guidance on how to put co-production approaches in organisations and projects into action. It makes recommendations on the key changes that organisations need to make to develop co-production approaches structured around a jigsaw model of the management of change. This brings together four important areas of change: culture, structure, practice and review. The guide is based on three sources of evidence: a review of the evidence from 15 studies of co-production that were published in peer-reviewed journals; additional literature identified by SCIE staff and the Project Advisory Group.