Service development

Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants.

Background: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development.

This is the report of a study undertaken by the University of Leeds and commissioned by the Department of Health that aimed to get a better understanding of how local authorities in England spent their Carers' Grant allocations between 2005 and 2007 and how it enabled them to improve support for carers in their area. First introduced in April 1999, the Carers' Grant is provided to all councils with responsibility for social services in recognition of the support carers need for breaks and other services. [DH website abstract]

I describe the development of a group in North London that aimed to increase the involvement of carers in the development and monitoring of mental health services across the borough. I enabled the carers to evaluate their experiences of the group using a participatory action research model. The evaluation was divided into two phases. Phase 1 focused on how the carers developed effective processes to facilitate the individuals in the group to represent not only their experiences but those of the collective.

This guide sets out key principles to ensure that patient, carer and public voices are included in governance frameworks for commissioning and service development in the NHS and health care services. It also includes practical steps to put these principles in place and contains links to supporting material. The guide is based on a review of research, best practice reports and the views of stakeholders. It aims to support clinical commissioning groups and others to plan and deliver good patient and public participation. One of four guides developed by NHS England with their partners.

Dementia of the Alzheimer type and related disorders greatly impact not only on the lives of sufferers but also on their unpaid informal carers, who usually are spouses or children. Carers are more likely to suffer from stress, take prescribed medication and visit their physicians compared with non-carers (Burns and Rabins, 2000). Social isolation that can occur in caregiving may mean that carers may only come to the attention of formal support services when a crisis occurs and informal care arrangements break down (Wenger, 1994).

In the first of two articles about developing dementia services in India, Diana Kerr presents an overview of the country and describes two specific projects.

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programmes for older carers occupied a unique place within the service system.

Having been diagnosed with dementia at the age of 70, Brian and his wife June now actively participate in planning dementia care services in Gloucestershire. The film illustrates the range of activities they are involved in - developing a 'Living Well Handbook', giving talks and helping shape training tools. It also highlights how commissioners, support organisations and carers all have a role to play in enabling the person with dementia to share their knowledge and experience for the benefit of others.

NAViGO, a community interest company formed by service users and carers in partnership with mental health workers, has take over the running of all mental health services in northeast Lincolnshire. This article investigates this innovative example of service user and carer involvement in designing and delivering mental health services. The introduction of RESPECT training, which trains mental health workers to defuse difficult situations without using control and restraint techniques, is also discussed.