Partners in care?: views and experiences of carers from a cohort study of the early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003

Carers are seen as legitimate stakeholders in wider policy processes and increasingly as ‘co‐producers’ and key providers of care. Mental health carers, however, especially those caring for relatives subject to compulsory care and treatment, often feel overlooked and marginalised, caring in complex circumstances with little or no professional support. The Mental Health (Care & Treatment) (Scotland) Act 2003 (MHCT Act) implemented in 2005 aspired to change this for the better. This article focuses specifically on findings from seven focus groups and 10 individual interviews with 33 carers from three Health Board areas and the State Hospital in Scotland. Interviews were conducted at two stages during 2007 and 2008 as part of a wider study. Participating carers were supporting relatives who were under different compulsory measures and so had experience of new procedures under the MHCT Act. The data were gathered as part of a cohort study exploring service users’, carers’ and professionals’ early experiences of the Act’s implementation. A topic guide was used to explore the impact of compulsion on carers; the ‘Named Person’ role; Mental Health Tribunals; the principles underpinning the MHCT Act; and suggestions for improving the law. The study found that new provisions, in particular the Named Person role and Mental Health Tribunals, had resulted in positive change. However, many carers still felt isolated and unsupported. They remained critical of the lack of consultation and involvement at both individual and collective levels. Few were aware of their right to a carer’s assessment and many were sceptical that this would make any difference. Acknowledging the study’s limitations, we discuss the implications for practice in light of broader policy agendas of personalisation, recovery, recognition for carers and promotion of more community‐based mental health services.     

Subjective experiences of compulsory treatment from a qualitative study of early implementation of the Mental Health (Care & Treatment) (Scotland) Act 2003

Compulsory psychiatric treatment is highly contested, and little research has focused specifically on direct experiences. The Mental Health (Care & Treatment) (Scotland) Act, 2003 introduced new roles and provisions including community treatment orders, and was designed to increase participation, ensure treatment was beneficial and was the ‘least restrictive’ alternative. This article draws on findings from semi‐structured interviews with 49 individuals, who had experienced compulsion under this new legislation during 2007–2008, that were part of a broader cohort study. Interviews with service users were conducted at two stages with 80% agreeing to be interviewed twice. The sample included people on a variety of compulsory orders from four Health Board areas, some of whom had been detained for the first time, while others reported ‘revolving door’ experiences. Peer researchers who were mental health service users carried out the interviews in partnership with professional researchers. The findings suggest that legislation had a limited impact on participation in the process of compulsion. Consensus was that although service users felt there was increased opportunity for their voices to be heard, this was not matched by having increased influence over professional decision‐making, especially in relation to drug treatments. According to people's direct experiences, the passing of the legislation in itself had done little to change the dominant psychiatric paradigm. While providing a foundation for improving the process of compulsion, the findings suggest that as well as legislative reform, fundamental shifts in practice are needed both in terms of the nature of therapeutic relationships, and in embracing more holistic and recovery perspectives.     

Social policy for people with dementia in England: promoting human rights?

This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy – notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy – in facilitating their human rights to liberty and self‐determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self‐determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights.     

Best Interests and Treatment for Mental Disorder

This paper considers the role of the concept of best interests in the treatment of mental disorder. It considers the Mental Capacity Act 2005 where treatment of an incapacitated person's mental disorder is authorized if treatment is in the patient's own best interests. It also examines the Mental Health Act 1983 as amended by the Mental Health Act 2007 where treatment without consent of a detained patient is allowed where necessary for the patient's health or safety or for the protection of others. Under both statutory regimes treatment must be in the best interests of the patient. This paper argues that 'best interests' is open to interpretation to include treatment interventions carried out primarily to protect other people.     

Legal dilemmas for clinicians involved in the care and treatment of children and young people with mental disorder

Background The 2008 revised Mental Health Act Code of Practice describes the legal framework governing the admission to hospital and treatment of children and young people for mental disorders as complex. Clinicians are required to be conversant with common law principles as well as the Mental Health Act (MHA), Children Act, Mental Capacity Act (MCA), Family Law Reform Act, Human Rights Act, and the United Nations Convention on the Rights of the Child. Professionals working with the MHA and the MCA have a legal duty to have regard to the respective Codes of Practice (MHA Code and MCA Code). In addition there is a need to keep up‐to‐date with developments in case law. The recent guidance from the National Institute for Mental Health in England, ‘The Legal Aspects of the Care and Treatment of Children and Young People with Mental Disorder’ draws all of the legal regimes together and suggests pointers on the most appropriate course of action when the regimes overlap. Discussion This paper will aim to highlight legal dilemmas relating to the care and treatment of under 18‐year‐olds for mental disorder and to discuss the impact of these on clinical practice. The new legal framework will be discussed with reference to hypothetical cases. Key issues include age and maturity, capacity, deprivation of liberty and the zone of parental control (ZPC). Conclusions It is essential that clinicians are aware of their responsibilities within the new legal framework in order to avoid becoming a target for litigation. This paper is aimed at meeting the recommendation for clinicians to be aware of their responsibilities and engage in appropriate training.     

Place and provision: mapping mental health advocacy services in London

The National Health Service (NHS) Executive for London carried out an investigation in 2002 as part of their wider mental health strategy to establish whether existing mental health advocacy provision in the city was meeting need. The project took a two-part approach, with an emphasis on, (a) mapping the provision of advocacy services and, (b) cartographic mapping of service location and catchments. Data were collected through a detailed questionnaire with service providers in collaboration with the Greater London Mental Health Advocacy Network (GLMHAN) and additional health and government sources. The service mapping identified some key statistics on funding, caseloads and models of service provision with an additional emphasis on coverage, capacity, and funding stability. The questionnaire was augmented by interviews and focus groups with commissioners, service providers and service users and identified differing perspectives and problems, which informed the different perspectives of each of these groups. The cartographic mapping exercise demonstrated a spatially-even provision of mental health advocacy services across the city with each borough being served by at least one local service as well as by London wide specialist schemes. However, at local level, no one borough had the full range of specialist provision to match local demographic need. Ultimately the research assisted the Advisory Group in providing commissioning agencies with clear information on the current status of city-wide mental health advocacy services, and on gaps in existing advocacy provision alongside previously unconsidered geographical and service dimensions of that provision.     

National health insurance proposals: their effect on family planning and other preventive health services

The Nixon Administration Comprehensive Health Insurance Act of 1974 (H.R.12684, S.2970), Kennedy-Griffiths Health Security Act of 1973, (H.R.22, S.3), the Long-Ribicoff-Waggonner Catastrophic Health Insurance and Medical Reform Act (H.R. 14079, S.2513) and the Mills-Kennedy Comprehensive National Health Insurance Act of 1974 (H.R. 13870, 3286) are compared with respect to general concept, coverage of population, benefit structure, financing, cost sharing, administration, provider standards and the effect on existing programs. Family planning services and well-child care are not included in the group of services which are regarded as essential under the Mills-Kennedy or administration proposals. Both bills exempt these services from a general provision which limits coverage to curative care and services. The Long-Ribicoff bill mandates the provision of family planning counseling, services and supplies for the low income population as defined in the bill but limits coverage to other persons to catastrophe-related care. The "model policy" of the bill does not mention family planning or well-child services.     

The role of the People's Health Movement in putting the social determinants of health on the global agenda

The People's Health Movement (PHM) is a global network of people oriented health professionals and activists, academcis and researchers, campaigners and people organizations that have actively promoted the reendorsement of the ‘Health for All’ principles of the Alma Ata Declaration and the importance of social determinants of health and health care. The paper outlines a series of ongoing advocacy initiatives through a PHM – WHO advocacy circle that has consistently since 2001 nudged WHO to reaffirm the Alma Ata principles and focus on the social determinants of health. This has led to an evolving dialogue with PHM and the setting up of the WHO commission on social determiants of health, in which the PHM, is actively engaged.     

Primary health care for older people: progress towards an integrated strategy?

The importance of providing integrated, holistic and cohesive primary care for older people has been increasingly emphasized in recent policy initiatives and directives in the UK. These have sometimes proved to be elusive goals, however, as an ageing population and rapidly changing health care environment have increased the pressures on the primary care team to keep pace with the growing level of need. As primary care faces a new set of challenges presented by the development of Primary Care Groups (PCGs), opportunities may be found to address older people's health needs in a more coordinated way. In South Buckinghamshire, a multi-agency group, Health for All (HFA), has been keen to develop collaborative and inter-agency working in older peoples' services and commissioned an evaluation to inform their work. This paper focuses on some of the key findings from the evaluation with reference to primary care. The purpose of the evaluation was to provide a snapshot of service provision for older people, identifying the level of access, availability of services and areas of unmet need. Twelve user groups were consulted and interviews held with 58 service representatives from health and social services agencies in the statutory and voluntary sectors. Primary care was considered in the wider context of service provision and key issues from the perspectives of providers and users were identified. A number of problems specific to primary care were identified which echo experiences in other parts of the country. However, also identified were common issues across a wide range of service provision, suggesting the need for coordinated strategies and more effective user participation. The HFA group is using the recommendations of the evaluation to assist in a priority setting exercise, which will inform the development of a strategy for older people in South Buckinghamshire.     

Leadership/citizen participation: perceived impact of advocacy activities by people with physical disabilities on access to health care,attendant care and social services

Increasingly, the climate of shrinking health care resources will impact access to health care for the people most vulnerable-those with disabilities. This study looked at the perceived impact of leadership and participation by people with physical disabilities and at their ability to gain increased access to health care, attendant care and social services. Respondents were randomly selected from Canada and the United States, from a pool of participants with physical disabilities serving in leadership roles within disability organizations in either country. Responses from a mail-out survey questionnaire were tabulated using logistic regression procedures to identify the perceived impact of advocacy activity on improved access to health care, attendant care and social ser- vices. Findings suggest that those who participated in advocacy activities were significantly more likely to feel that their action improved access to health care resources, attendant care resources and social services. Advocates also perceived the impact of access for their family, local organizations, and at a regional/national level. This study highlights the value of consumer/citizen participation, and the vital role this action can play in collaboration with social work professionals for system changes, health resource planning and policy development.     

Supporting and resourcing treatment decision‐making: some policy considerations

This paper considers some of the policy implications of issues raised during a conference about treatment decision‐making in the clinical encounter held in Hamilton, Ontario in May 1999. Policies promoting patient participation in treatment decision‐making need to be flexible enough to ensure that they are appropriate across the range of contexts in which health care decisions are made and acceptable to people with diverse preferences and abilities. They should also be formulated in consideration of other health policies and of available resources. Policies of informing people and involving them in decisions about their care are unlikely to be simple to implement. Various strategies might be needed to support them. These include the development of appropriate skills among health professionals and in the general population, the use of interventions to encourage people to play more active roles in decisions about their health care, the provision of decision aids for people facing specific decisions and the provision and accreditation of more general information resources and services. If information and other facilitators of patient participation in decision‐making are seen as integral to good quality health care, then funding should be made available for them. This will, however, have opportunity costs. Policy makers’ decisions about how much health care funding should be invested in which strategies should be underpinned by good research evidence about the effects that different types of intervention have on a range of outcomes for individuals, health care systems and populations. The knowledge on which current policies are based is limited. The development of future policies will be enhanced if policy makers invest in critical conceptual thinking, reflective practice, imaginative development work and good quality evaluative research.     

Keeping the focus on children: the challenges of safeguarding children affected by domestic abuse

Safeguarding children affected by domestic abuse is a key responsibility for all professionals working with children and families, but can be difficult to achieve in practice. Despite a policy emphasis on early intervention and child‐centred work, limited attention has been paid to how professionals in universal and additional support services address this important area of work. This paper reports findings from qualitative research undertaken in one local authority area in the north of England during 2011 which examines the challenges facing professionals in safeguarding children affected by domestic abuse. Six mixed professional focus groups were held, attended by a total of 23 participants. Discussion focused upon participants’ awareness of domestic abuse, how they assessed and met children and young peoples’ needs, and their views about service provision and safeguarding processes. Data were transcribed and thematic analysis undertaken. The themes presented in this paper – embodied recognition, someone else's job, service gaps, skills deficits, and focusing upon children and young people – illustrate the scope and limitations of professionals’ work with children and young people affected by domestic abuse. Areas for practice improvement are discussed.     

Improving the nutritional status of older residents in care – new national minimum standards

Summary On 1st April 2002, national minimum standards for care homes for older people came into force in England and Wales ( Department of Health 2002 ). These were published in accordance with the Care Standards Act 2000 and replaced the Registered Homes Act of 1984. The Care Standards Act also created the National Care Standards Commission (NCSC), an independent non-governmental public body to regulate social and health care services (previously regulated by local councils and health authorities). Meeting the new standards is a core requirement for all care homes providing accommodation and nursing or personal care for older people and will form the basis on which the new NCSC will determine whether homes for older people meet the needs and secure the welfare and social inclusion of those who live in them. Several of the key topics highlighted in the Act relate explicitly to food and food provision (including health and personal care, daily life and social activities and staffing). For example, specifications are made about the type of food that is acceptable, when it should be eaten, the appropriate number of meals per day and their distribution throughout the day. This article outlines the main nutrition related issues in the new standards and highlights some available resources that may help care home owners to meet them.     

Evaluation of an integrated service delivering post diagnostic care and support for people living with dementia and their families

Greater integration of health and social care services is considered vital to ensure sustainable long‐term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14‐month pilot period. The self‐referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined‐up working across health and social care.     

Home care as reablement or enabling arrangements? An exploration of the precarious dependencies in living with functional decline

The threat to welfare societies posed by population ageing has urged high‐income countries to rethink the provision of social and healthcare services for the ageing population. One widely implemented policy solution is ‘reablement’: short‐term home‐based training programmes focusing on re‐enabling older people to carry out activities of daily living independently. Drawing on empirical material from multisited ethnographic fieldwork of reablement practices in a Danish municipality we explore how the assumptions about independence embedded in the concept's linguistic parts – ‘re’, ‘able’ and ‘ment’ – map onto lives characterised by functional decline. We find that home care applicants: (i) are often too deeply dependent on the capacities of others in order to have their independence restored; (ii) negotiate individual meanings of independence to maintain their identity as able human beings; and (iii) might possibly gain new capacities through reablement, yet these are not individual and stable achievements, but rather temporary effects of the care relations with eldercare professionals. Rather than reablement we, therefore, suggest the term ‘enabling arrangements’ as more appropriate for capturing independence as a distributed, negotiated and continuous accomplishment. Finally, we discuss the practical and ethical implications of this term.     

Exploring the influence of service user involvement on health and social care services for cancer

Background Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. Aims and objectives The aim of this study was to explore the influence of the cancer network partnership groups’ service user involvement activities on cancer care. Design This was a qualitative study involving documentary analysis and in‐depth case studies of a sample of partnership groups. Setting and participants Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. Results and conclusions The evidence from this study suggests that cancer network partnership groups are at their most influential at ‘grass roots’ level – contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups’ aim is to influence strategic changes, for example in cancer care commissioning or macro‐level policy decision‐making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.     

Young adults' (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study

Managing the multiple demands of a chronic condition whilst negotiating the developmental tasks of adolescence and young adulthood is a process that is neither well described nor understood, particularly in relation to providing developmentally appropriate health care for young people. The importance of this issue is starting to be reflected within the literature, and although research into models of service delivery is emerging, a lack of user involvement in service development is apparent. This qualitative, user involvement study aimed to describe and understand the considered opinions of 19 young adults with diabetes who were receiving secondary care services about the provision of diabetes services for young people. The findings, gathered using semistructured interview and focus group methods, have potentially wide-reaching implications across primary and secondary health care, and across agencies providing services to children and young people, in terms of facilitating a person's transition through adolescence and into young adult life. Participants suggested key issues to address when developing services for young people, including staff consistency, civility, clinic structures which help a person navigate the health care system, provision of age-specific information, and support in relation to a range of health, emotional, social and developmental needs. Health care professionals can help young people to meet the expectations upon them as autonomous service users by modelling appropriate relationships, helping them to acquire skills and knowledge, and overcome barriers to them becoming active participants in their health care and achieving social participation in a fuller sense. It is somewhat arbitrary to delineate between adolescence and young adulthood in terms of age alone, but in this paper, 'adolescence' refers to the period between 11 and 15 years of age, and 'young adulthood' between 16 and 25 years of age. The phrase 'young people' will also be used to refer to people between 11 and 25 years.     

A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi‐structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help‐seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person‐centredness. PwMS and professionals identified that MS‐related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient‐centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.     

Domains of importance for parents,medical professionals and youth with cerebral palsy considering treatment outcomes

Background The aim of this study was to assess the domains of importance in therapeutic intervention for cerebral palsy (CP) using categories of the International Classification of Functioning, Disability, and Health – Children and Youth Version (ICF‐CY). Methods A total of 17 youth, 19 parents and 39 medical professionals responded to the open‐ended query: ‘What are the things you find most important to consider when you evaluate the effects of an intervention for yourself/your child/your patient with cerebral palsy?’ Surveys were either mailed or conducted on‐line. Responses were coded by two reviewers using the ICF‐CY and discrepancies were resolved. Results Responses were distributed across the ICF‐CY domains of Body Functions and Structures, Activities and Participation, and Environmental Factors, as well as non‐ICF‐CY concepts including quality of life. The most common responses overall were pain, motor function, mobility, community life and public services. Youth identified strength, gait pattern, hand/arm use and use of assistive technologies as priorities whereas parents were concerned with motor function, communication, mobility and provision of public services. Medical professionals listed pain, function, mobility, community life and participation most often. Conclusions All surveyed groups indicate a desire to see changes in body functions and structures (pain, mental function, strength, movement), activities and participation (communication, hand/arm use, walking, school, recreation/community life) and quality of life following therapeutic interventions for CP. These results demonstrate the multiple, varied concerns regarding CP across the spectrum of functioning and health.