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Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

Thu, 07/20/2017 - 15:22

Principles of person centred care: part 2

Designed exclusively for those providing care within the care home, this two part title introduces carers to the values that underpin person-centred care. It assists them to develop their understanding of how principles of care should be reflected in their day-to-day practices by exploring the values of individuality, rights, choice, privacy, independence, dignity, respect and partnership. It goes on to look at the right service users have to take risks in their lives and how the care plan and risk assessment can assist to protect individuals from harm

Thu, 07/20/2017 - 15:21

User involvement in social work education: Macedonian perspective

Involving service users and carers in the education and training of social workers is higher on the agenda in developed countries than ever before. Higher education institutions that run these programmes are required to involve service users and carers at all levels of the design and delivery of the programmes. The experiences of user involvement in social work education in the countries of transition, such as Macedonia, are however lacking.

Thu, 07/20/2017 - 15:21

Equal but different

Users, carers and the wider public are just as important to the real picture of long-term care provision and funding as local authority and NHS commissioners. So co-ordination is about more than agency structures.

Thu, 07/20/2017 - 15:21

Care Act: assessment and eligibility: supported self-assessment

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.

Thu, 07/20/2017 - 15:21

People not processes: the future of personalisation and independent living

This report summarises findings from two seminars which aimed to bring together a range of perspectives on personalisation and its future. Participants included service users, carers, social care practitioners (including a personal assistant, support worker and a care home manager) and policy makers. The report looks at what personalisation meant those attending and presents some key characteristics.

Thu, 07/20/2017 - 15:20

The Choices Method: helping people take control of their mental health

Helping people to understand what mental illness is and means to people who are affected by it can be difficult, but a set of resources has been developed by a person with bipolar disorder to help address the problem. The 'Choices Method' consists of a series of boards covering a range of mental health conditions which are designed to promote a free exchange of feelings and information between those experiencing mental illness and those supporting them.

Thu, 07/20/2017 - 15:20

Service user and carer involvement in mental health education, training and research - a literature review

As part of an evaluation of service users’ and carers’ experience of involvement in mental health education, training and research, an extended literature review was undertaken. The purpose of this was to review policy underpinning service user and carer involvement in those areas, identify the extent and range of involvement, the processes involved, and the extent to which the effectiveness and impact of involvement had been evaluated. The review found that there was a range of different ways in which people were involved.

Thu, 07/20/2017 - 15:20

Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent’s level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS).

Thu, 07/20/2017 - 15:19

Copying letters to service users with learning disabilities: opinions of service users, carers and professionals working within learning disability services

The NHS Plan, Department of Health (2000) made a commitment that patients should be able to receive copies of clinicians’ letters about them as a right in order to improve communication and enable patients to participate in their care. In South Gloucestershire, the opinions of local service users with learning disabilities, their carers, and professionals working within learning disability services about this issue were sought using questionnaires and focus groups in order to identify and then develop good practice.

Thu, 07/20/2017 - 15:19