Carers often still unaware of their rights despite new duties for local authorities under the Care Act 2014
12 November 2014
Only a small proportion of carers receive any type of social care support and just 1% of the social care workforce is estimated to be working exclusively with carers, according to a study carried out researchers within the Social Care Workforce Research Unit at King’s College London. The study also found many carers were still unaware of their rights to an assessment. The findings have implications for the implementation of the Care Act 2014, which has created new rights for carers in terms of rights to support and aims to place them on an equal footing with those for whom they care.
Researchers found that many people caring for family members or friends with disabilities still do not identify themselves as carers. Those that do sometimes think the process of applying for, and receiving, a carer’s assessment will be too cumbersome in relation to the amount of support that they can expect to receive. And feelings of stigma or guilt can still be barriers to asking for help.
The study investigated carers’ experiences of assessment; how carers access information about social care support; and what support is provided by carers’ workers whose tasks involve providing specific support to family carers. It found that few carers find out about their rights to an assessment themselves so carers’ centres and other carers’ organisations play a vital role in helping carers recognise their rights. When carer assessments do take place, they are mostly (excluding the self-assessments) incorporated into assessments of the person cared for and it is not always clear whether support is being provided on the basis of the needs of the carer or the person cared for. In many instances, this may not matter but carers whose own needs for support are greater than those of the person for whom they care may lose out under this system. It also disadvantages those caring for someone who is not eligible for, or who refuses, social care support from their local authority.
Under the new Act, the duties of local councils include assessing and meeting the needs of eligible carers and providing information and advice to carers about the available support. Many family carers described difficulties in accessing information but neither did they want ‘information overload’. They wanted information that is timely, relevant, and personalised to their specific circumstances. They did not want to be given too much irrelevant information at a time when they feel too stressed to absorb it. Carers’ workers drew a strong distinction between information delivery and information processing; they argued that carers are often given information in a scattergun way and that other professionals do not spend enough time going through it.
Carers were positive about the help provided by carers’ workers with a specific remit to provide them with support. Carers appreciated the range of support that carers’ workers offer, particularly the value of regular support from a ‘known’ person was emphasised strongly. Activities by carers’ workers are varied and include outreach work, information provision, counselling, advocacy and ongoing support.
As well as the 1% of social care workers working exclusively as carers’ workers, around 13% have subsidiary roles in supporting carers. These are mainly home care workers helping carers deliver personal care. Carers and carers’ organisations highlighted the importance of their work in giving carers a regular break or providing a ‘listening ear’.
There were mixed views on the impact of personalisation, particularly direct payments. On the plus side, these could provide carers with more tailored and practical support (driving lessons, bus passes and a day’s respite break at a spa were cited as examples). However, managing a personal budget could also represent an additional burden and those who were caring for someone very frail or with severe needs would prefer a regular and reliable break from caring instead of a direct payment.
Jo Moriarty and Jill Manthorpe, who led the study, identified a number of implications for practice from their findings, including the need for outreach information strategies to reach vulnerable groups of carers: individuals with literacy problems, people who do not use computers, carers who do not recognise themselves as carers, and those who feel unwilling to ask for help because of stigma or guilt. In addition, councils need to examine how effectively social care helplines and access teams are in providing preventive social care support to carers most at risk of experiencing difficulties in their caring role – and then offer acceptable and appropriate support. More attention should also be given to carers’ needs for emotional support.
The study, funded by the NIHR School for Social Care Research, drew on in-depth interviews with 24 family carers, 8 commissioners, 16 representatives of voluntary organisations and 38 carers’ workers in four parts of England; 80 responses to an email/postal survey sent to all local authorities with responsibilities for adult social care (50% response rate); a web audit of 50 local authority websites; and secondary analysis of the National Minimum Data Set for Social Care (NMDS-SC) data on carers’ workers. Further details of the findings are available here.
Misunderstanding persists over the power and conditions of Community Treatment Orders (CTOs)
6 November 2014
There is a “worrying” level of misunderstanding about the powers of CTOs but service users and their relatives nevertheless say that orders provide a “reassuring” legal recognition of a person’s need for care and improve their level of contact with services.
The findings come from from a recent SSCR-funded study of 199 CTOs, led by Dr Julia Stroud from the University of Brighton. The majority of the study participants were diagnosed with schizophrenia and had a history of non-compliance with medication.
The study points to a number of specific ways in which CTOs could be better aligned with ethical practice and ‘person centred’ care. It found CTOs were perceived as most appropriate for those service users who had previously been resistant to treatment and often lacked ‘insight’ into their mental health needs.
CTOs illustrate the tension between a policy of promoting choice among service users and their role in enforcing compulsion and control. The study recommended that assessments for CTOs should not be rushed and should involve the service user in decision making as much as possible.
Satisfaction with social care services among South Asian and White British groups
13 October 2014
People from Black and Minority Ethnic (BME) groups have generally reported lower levels of satisfaction with social care services when compared with white people. An SSCR-commissioned study explored satisfaction with people from South Asian groups and interviewed a White British comparison group to see how similar or different their experiences were.
The research team, led by Dr Ros Willis from the University of Southampton, found that people from minority ethnic groups have had difficulty finding out about services due to language barriers and cultural differences, and many people struggled to find out how to access social care services in the first place. There were both differences (e.g. language issues) and similarities (e.g. the importance of care staff having a kind manner) between South Asian and White British service users and family carers. More White British than South Asian people had a good understanding of the social care system: people with a good understanding of the social care system were more in control of their care; people with a poor understanding were uncertain about how to access further care, or why a service had been refused or withdrawn.
Main recommendations from the study include: thorough assessments, language needs being met, accessible named social care staff and better communication to service users and family carers throughout the whole social care process.
Men with long-term conditions demand better social care
9 September 2014
The social care sector needs to focus on gender-specific social and sexual needs when looking after men with debilitating long-term health conditions, an SSCR-funded study has found.
Researchers at the University of Bristol looked at the views of 20 men, aged from 21 to 33, who have Duchenne muscular dystrophy – a life-limiting neuromuscular disease which gradually causes the muscles to weaken.
The study is being presented at the Disability Studies Conference in Lancaster today and reveals that men sometimes found that social care took no account of their male gender and they wanted more support with social activities and sexual relationships.
Professor David Abbott, from the Norah Fry Research Centre at the University of Bristol, said: “The men we spoke to wanted to be treated like men, despite their increasing reliance on physical support. A headline message for the social care sector is to think about gender and the whole range of social and sexual needs men living with long-term conditions may have.”
Watch a short film based on the findings.
SSCR-funded studies present findings at two key conferences this week
1 September 2014
Several SSCR-funded studies are to be highlighted at both the 43rd British Society of Gerontology Annual Conference and the International Long-term Care Policy Network's 3rd International Conference this week.
BSG conference, 1-3 September 2014
Today, a paper from the project “Shared Lives: the potential of family-based care and support for older adults” will be presented. Tomorrow will see eight projects presented in the parallel sessions, including: “Decisions to use social care services among South Asian groups”, “Care home managers – shadow and substance”, and “Do Direct Payments improve outcomes for older people who have a personal budget? Differences in outcome between people aged 75+ who have a managed personal budget or direct payment”. On 3 September, “What do occupational therapists do? The design and implementation of a new schedule to measure time-use in OT services” and “Differences in satisfaction with social care among South Asian and White British service users and carers” will also be presented.
ILPN conference, 31 August - 3 September 2014
Eight SSCR-funded projects will present findings at this conference. Speakers include Michael Clark, Diane Fox, Katherine Graham, Derek King, Jo Moriarty, Caroine Norrie, Nick Smith and Martin Stevens, covering areas such as intergrated care, adult safeguarding, unpaid care, the Adult Social Care Outcomes Toolkit (ASCOT), and care models in long-term care.
Call for Research Proposals Launched
16 July 2014
The NIHR School for Social Care Research's mission includes commissioning high-quality research to improve the evidence base for adult social care practice in England.
Our first Call for Research Proposals is now live with a deadline of 29 September 2014. We are looking for innovative and high-quality research proposals addressing the big questions for adult social care practice for the next 5 to 10 years. A number of key themes have been identified for this Call. The School has £2 million available for this Call, and expects to commission a range of projects (around 8 in total) in terms of size and budget, with a maximum budget of £1m for any individual project.
SSCR welcomes proposals led by academic researchers, practice researchers, professionals, people who use services and/or carers.
Latest research findings: ‘Swimming in treacle’ – Research highlights the difficulties for services providing home care for people with dementia and what could improve it
10 June 2014
A new evidence-based tool funded by the NIHR School for Social Care Research has been developed by researchers at the University of Nottingham to assist care managers to self-assess the quality of home care for people with dementia, focusing attention on how services might be improved in a setting where providing good care can be challenging.
Overall, the 42-question tool assesses the elements regarded as central to the delivery of good home based services for people with dementia: person-centred care, effective planning and coordination with other services, consistent delivery by sufficient numbers of well trained and supported staff who are empowered to work in a flexible and responsive way, and involvement of the principal carer. Led by Associate Professor Rob Jones, the tool was tested with 32 managers of home care for people with dementia and then, using a similar questionnaire, with care staff, principal carers and professionals. The tool thus allows services to compare the manager’s perceptions with those of key stakeholders.
Findings from this SSCR-funded study suggest that managers were broadly positive about the care they provided, the most noticeable exception relating to the flexibility of provision, where under half of managers indicated that their care workers would ‘always’ or ‘usually’ be able to use their time with the client flexibly.
Positive responses from principal carers’ were generally much lower across a range of questions, dipping to around 23% ‘Agreeing’ or ‘Strongly agreeing’ that ‘someone from the service talked to them about their own care needs’. Similarly, only 41% of principal carers found care workers to be knowledgeable about the care needs of people with dementia, compared with 76% of the care workers themselves.
Semi-structured interviews were also conducted with service managers to understand how they had used the tool and the context within which it had been completed. The University of Nottingham research team found service managers worked pragmatically and hard to ensure the best possible service and outcomes for their clients, but that managing homecare could be complex and challenging. “Unless you work in the business, you don’t understand the constraints, the financial constraints, the regulations we have to work by. It’s hard work, you are swimming in treacle, basically,” (manager from a medium size private sector organisation).
A significant finding suggested that different health and social care providers do not operate in a ‘joined-up’ manner; for example, there were several references to poor relationships between home care and district nursing staff, leading to occasional operational issues for care staff, such as being delayed between calls. “We find a lot of aggression from the NHS, not so much from the NHS as a Trust, but from the district nurses … They really, really don’t like us for some reason …” (private sector provider). Of equal significance and consistency were issues of communication and collaboration when clients required in-patient care: “They’re sending them home [from hospital] and then assuming that we will be going, but we don’t even know that they’ve gone home” (large private sector provider). These factors placed additional pressures upon clients and stakeholders, leading to inefficient and possibly unsafe service delivery. This area would benefit from further research.
Structural factors, over which the service could exercise little control, were consistent themes of the interviews, for example, the manager’s ability to recruit and retain a suitable workforce: “I take on eight care workers and lose four – each month”. Some attributed such problems to salary, where pay levels may be fixed for years by tendering arrangements. “It’s all paid for by the electronic monitoring, so it’s not a case of [service users] actually choosing the kind of care” (medium size private sector provider).
Read the full findings summary here.
NIHR Health Services and Delivery Research Programme are recruiting
2 June 2014
The HS&DR Programme is recruiting for a Programme Director and Deputy Programme Director. Professor Ray Fitzpatrick and Professor Kieran Walshe are coming to the end of their tenures as HS&DR Programme Director and Associate Director respectively. We are now recruiting for their successors. Closing date for applications is 4 July 2014.
The full advertisements, including details on how to apply, are below:
How health and social care workers can help people with mental health problems to develop and maintain relationships
11 April 2014
Mental health problems often impact on an individual’s social relationships – due for example to stigma or the effect of the mental health problem on the individual – so it is important that health and social care workers support people to maintain and develop their social connections. This in turn can promote recovery and reduce the risk of compulsory admission to hospital. However, there are no practice guidelines to assist workers in this area and it is not often given a high priority. In this context, the Connecting People study has published a model and guidance drawing together the components and processes which are likely to be involved in supporting people with mental health problems to develop and maintain new social relationships.
The study explored good practice in six health and social care agencies in England, with 84 workers and 63 service users. It focused on workers who were skilled at assisting people to develop and maintain relationships, and had a particular interest in the experience of people with a diagnosis of psychosis. Observations, interviews and focus groups were used to look at practice in NHS mental health teams, a housing support agency and third sector agencies. The main findings were:
Key themes emerged as important in supporting people to develop and maintain their social connections. These included the attitude of the worker – being flexible, positive and enthusiastic – plus ‘soft’ skills such as use of body language, communication skills and patience. A person-centred approach was most effective, whereby workers listened and responded appropriately to individuals, to design life goals according to what the person wanted rather than conforming to agency or sector standard approaches. These goals needed to be clear and set out in achievable stages.
Health and social care agencies can provide a point for individuals to meet new people with similar interests, as well as the resources to link individuals with organisations and opportunities to allow them to create connections with local communities, communities of interest and individuals. Clear guidelines about the role of the agency in this process appear to be helpful, particularly around role boundaries and the extent to which workers can respond flexibly or creatively to an individual’s goals. Although difficult to achieve in practice, it appeared to be important for there to be greater equality between the worker and the individual. This could be manifested by empathy and shared experiences on the worker’s side, and a mutual respect and trust.
Health and social care agencies can provide a point for individuals to meet new people with similar interests, as well as the resources to link individuals with organisations and local communities. Workers can expose an individual to new ideas by learning about an individual’s existing or previous interests and by suggesting new ones to them, and can assist in building new networks and relationships by introducing them to new people and groups with similar interests and through engagement in new activities. Workers needed to continually refresh their knowledge in order to provide up to date contacts and suggestions to individuals.
It appeared important that individuals took responsibility for developing their social connections. A worker could help to foster hope and motivation but it was the individual’s responsibility to make it happen. Self-awareness was important, as well as the positive feedback gained from taking responsibility and trying new things.
One of the most prominent themes arising from the study was barriers to connecting people, which could be either contextual or attitudinal. Attitudinal barriers included those from individuals themselves such as a lack of confidence, not wanting to try new things, and self-stigma, as well as external barriers such as stigma from other people. Contextual barriers applied to both workers and individuals and included a lack of resources (e.g. time or money) as well as geographical factors, external relationships and physical health complications. It was important that these barriers were identified and addressed.
The effectiveness of the Connecting People Intervention (CPI) model is being evaluated in a large pilot study in sites across England, funded by the NIHR School for Social Care Research.
The full findings summary is available here.
Further information including the latest version of the practice guidance, an interactive version of the CPI model and training videos are available at www.connectingpeoplestudy.net.
Care homes often slow to make applications for Deprivation of Liberty Safeguards
4 April 2014
Care homes often have to be ‘nudged’ by other professionals to make a Deprivation of Liberty Safeguards (DOLS) application and the information needed for the assessment is not always readily available from care home staff, according to a newly published study. More positively, evidence suggests that DOLS processes lead to changes to the relevant person’s care, with several people receiving less restrictive care following the assessments.
The study, by Joan Langan, Marcus Jepson and colleagues at the School for Policy Studies, University of Bristol, examined the implementation of DOLS in England and their impact on care practice. The DOLS procedures were introduced in 2009 to protect people who ‘for their own safety and in their own best interests’ need care and treatment that may deprive them of their liberty, but who lack the capacity to consent to this. In such cases care home staff must formally apply to the local authority for an authorisation to detain them and an assessment is carried out to determine whether deprivation of liberty is occurring and, if so, whether it is in the individual’s best interests or whether care can be provided in a less restrictive manner.
Responsibility for deciding whether to apply for a DOLS authorisation lies with the care home or hospital where the person lives but this study found it was often the professionals connected to the relevant person who encouraged the care home to make a DOLS application. Generally, a key indicator that someone was being deprived of their liberty was the person attempting to leave where they are, or repeatedly saying that they wanted to leave. The use of medication to reduce agitation and anxiety could also be seen as having a restraining function.
A number of assessments – including mental capacity and “best interests” – are required for the DOLs process and views of the assessment process were mixed. Some assessors felt that the limited time allowed to complete their assessments (in particular, the Mental Capacity Assessment) was detrimental to good practice. In general, assessors had confidence in their ability to complete assessments, feeling they had received comprehensive training for their role but some care home staff reported inconsistencies in assessors’ decision making.
As part of an online survey, Best Interests Assessors (BIAs) commented on the impact the DOLS had made on the human rights of people subject to the safeguards. Most of the 62 respondents said that the DOLS had had either a little (n=26) or a great deal (n=33) of impact. Most were positive about the legislation’s potential for improving service users’ human rights. The legislation was said to have produced a more robust system, with greater scrutiny of decisions, more people involved in decisions, better capability of resolving conflicts and enabling practitioners to explain or defend their decisions more clearly. That said, several made references to these being ‘early days’ following the introduction of DOLS; they described procedural problems, including the cumbersome and bureaucratic systems involved with appeals. Others referred to the inconsistent and patchy implementation of DOLS, which was seen to have a different impact on client groups or practice settings.
Professor Jill Manthorpe, SSCR Associate Director, said: "This is a unique study of the workings of the Deprivation of Liberty Safeguards that has already influenced Parliamentary scrutiny of the Mental Capacity Act 2005. For practitioners there are helpful messages about how the potential to emphasise Safeguarding rather than Deprivation should be a key pointer for practice. Drawing on interviews with a wide circle of participants, this work offers much to current practitioners. It is a lasting legacy to the work of the late Dr Joan Langan - the originator and inspiration of this research."
The study took place in four local authority areas in England and used nine ‘live’ DOLS case studies, interviews with a range of the professionals involved and family members, and a factorial survey using case vignettes.
The full findings summary is available here.
Wider use of evidence-based employment support for disabled people would result in more people in new or retained jobs at a lower cost
27 March 2014
Existing investment in employment support for disabled people could be used to deliver much higher numbers of new or retained jobs at significantly lower average costs than is presently being achieved. This could be brought about through greater use of evidence-based interventions in place of other less effective models of employment support.
These findings from a new study, by researchers at the National Development Team for Inclusion (NDTi) led by Rob Grieg, identified significant variability in the cost of employment support services and costs per job that could not be explained by factors such as the complexity of people’s disability or size of service. The study also found that the capacity of local authority and NHS commissioners to apply the ‘right’ support model in the ‘right’ conditions is significantly being undermined by commissioners not having and/or using the necessary data and by a lack of understanding of the evidence about what works in employment support.
The study focused on people with learning disabilities or mental health problems, and on local authority and NHS funded services (Department for Work and Pensions funded programmes were excluded). There was good evidence Individual Placement and Support (IPS) (in mental health services) and supported employment (in learning disability services) are the most effective ways of supporting people to achieve paid work outcomes. There was little or no evidence to support other service models currently being used by commissioners.
Only around one third of current employment-related spend is currently being committed to evidence-based models. Commissioners and providers have little systematic data or knowledge about how best to target funding to generate positive job outcomes (i.e. jobs gained or jobs retained). Basic information to calculate cost-effectiveness exists locally, but is generally not being used to determine local value for money or compare costs to available information on best practice. As a result, existing investment is not producing the level of outcomes that would be possible if evidence-based models were more widely in use.
Cost per job outcome – defined by the numbers gaining or actively retaining a job or becoming self-employed – in individual services ranged from £208 to £57,640 and averaged £8,217. The average proportion of people supported who secured a job outcome was 38%. Sites working to evidence-based models of employment support typically delivered the most cost-effective outcomes, with an average cost per job outcome of £2,818 and a job outcome rate of 43%. One important caveat is that the data did not identify the type of job outcome secured so the findings may not be comparing like jobs between ‘sectors’.
In the context of the current tight financial climate, overall levels of spend on employment support have levelled off and are beginning to decline after a period of growth in recent years. Commissioners acknowledged that this makes it particularly important that limited funds are spent in the most cost-effective way.
There was no strong indication that it costs more to secure a new job than retain an existing job. While evidenced-based sites achieved good outcomes by focusing equally on retention and new jobs, non-evidence based sites that were achieving higher numbers generally did so by focusing more on retention.
Organisational features most likely to be found in successful and cost-effective services, particularly in sites working to evidence-based models, included: shifting the culture and prioritising employment; defining what is meant by employment; agreeing a strategic plan to deliver employment for people with disabilities; using knowledge of best practice to develop the market; and establishing systems for measuring performance.
Researchers collected national data on investment in employment support and a breakdown of type of support purchased and the outcomes generated using an electronic questionnaire from 99 services in 83 local authority areas in 2012. Further local in-depth data were collected from 70 services in 43 LA areas, followed by fieldwork visits to 6 sites in 2013.
Rob Greig, Chief Executive of NDTi, said: “For the first time we know how much commissioners are investing in what kinds of support for disabled people to get or keep work. Unfortunately, only a third of money is currently invested in approaches we know will make an effective difference. At the same time, it looks like commissioners are starting to disinvest in employment support because of the financial pressures they’re under. Far from being a reason to continue to disinvest, though, our findings show that far better employment outcomes can be achieved for disabled people if money is used wisely. Not only this, but supporting disabled people to work also results in an overall positive effect on the public purse because of a reduced reliance on care services. We encourage everyone with a stake in good employment outcomes for disabled people to look at the research and use its practical findings to make things better in their local area."
The research was funded by the NIHR School for Social Care Research. The full findings summary is available here.
Detailed information on both the phase 1 data and the full research is available on the NDTI website.
Professor Martin Knapp re-appointed as Director
3 February 2014
LSE's Professor Martin Knapp has been reappointed Director of the School for Social Care Research, which has been awarded a second, five-year term following a £15 million funding injection from the National Institute for Health Research (NIHR). Martin Knapp, Professor of Social Policy and Director of the Personal Social Services Research Unit at LSE, will lead the new phase of SSCR from 2014-2019, working with colleagues from the Universities of Bristol, Kent, Manchester and York.
The SSCR was established in May 2009 to conduct world-class research to improve adult social care practices in England. Since its establishment it has commissioned over 56 research studies involving more than 192 Fellows and engaged with a vast number of organisations in the social care sector.
The renewed funding, which takes effect from May 2014, will allow the consortium to develop a new business plan and research programme, according to Professor Knapp.
He said: "Around 2 million people in England with social care needs are supported each year by local authorities, and many others fund their own care.
"The social care sector contributes significantly to the nation's wellbeing and health. With major changes expected following the implementation of the Care Act later this year, sustained emphasis on the integration of health and social care, growing numbers of older people, and public spending cuts, there has never been a more pressing need for a strong evidence base.
"Decision makers want robust evidence on what people need and want, what works, how it can best be provided and what it costs," Professor Knapp said. "I am delighted that the NIHR continues to recognise the importance of adult social care research and continues to support SSCR. We will continue to work closely with people who use services, people who provide unpaid care, practitioners and managers as we identify research topics and carry them out."
The School will showcase its work at its next annual conference at LSE on 8 April 2014.
For older news items, please see the News Archive.