This paper examines the use of focus groups as a methodological approach when undertaking research with people with learning disabilities. This is presented within the context of an ongoing research project that has principally adopted a participatory research approach and that is seeking to understand how people with learning disabilities conceptualise and understand their mental health. As such this paper may be seen as a critical case study of the ongoing methodological challenges of using focus groups, as well as exploring some of the thornier practical issues such as recruitment, attendance, data collection, ethical issues and matters of consent, facilitation, venue and payment in adopting this approach when undertaking research with people with learning disabilities. The paper concludes that the focus group approach is a legitimate methodological approach within the research process in the field of learning disabilities.

This article describes a unique empirical study where critical incidents were obtained from learning disability nurses to understand how they attempt to meet the spiritual needs of the people for whom they care. Following analysis, the nurses' approaches to meeting spiritual needs were categorized as 'personal' and 'procedural', and each of these is described in turn. There then follows a discussion on the effects of these nurses' interventions on both clients and their families, and nurses themselves. The findings of the study illuminate how these learning disability nurses attempted to meet the spiritual needs of people with learning disabilities in their care. The findings may help nurses ensure that spiritual needs are identified in the construction of the personal care plans of people with learning disabilities.

Accessible Summary This article is about learning disability liaison nurses, and whether they help people with learning disabilities to have a better experience when they are in hospital. We talked to people with learning disabilities, their carers and hospital staff to find out what they thought about learning disability liaison nurses in acute hospitals. Everybody thought that these nurses were very important, and that they helped patients and hospital staff to talk to each other and understand each other better. This work shows that learning disability liaison nurses working in an acute hospital can help people with learning disabilities to receive a better service. Summary It has been well documented that people with learning disabilities receive poor care in acute settings. Over the last few years, a number of learning disability liaison nurse services have developed in the United Kingdom as a response to this, but there has been a failure to systematically gather evidence as to their effectiveness. This article reports on a service evaluation that sought to establish whether implementing a learning disability liaison nurse service improved hospital experiences for patients with learning disabilities, and their carers, whilst in an acute hospital setting. Quantitative data were collected on all patients with learning disabilities referred to this service over a six‐month period, and this included numbers referred (elective and emergency), length of time for referral, presenting conditions and age profile, as well as activities of the liaison nurses. These data suggest an incremental rise in referral of patients with learning disabilities to this service over time, relatively few inappropriate referrals, referrals from hospital staff and community services were similar, and these nurses found that some patients with learning disabilities were not referred to the service. Concerning activities of these nurses, these were dominated by discharge planning, assisting in making reasonable adjustments, liaison work and assisting with mental capacity issues. In addition, patients with learning disabilities, their carers and hospital staff who had experience of this learning disability nursing liaison service were interviewed. It was found from these interviews that all participants understood the role of the liaison nurse and articulated that they improved communication as well as promoting holistic care. Those interviewed highlighted the importance of such a role and the need for it to continue. This service evaluation makes an important contribution to an ongoing gap in learning disability literature concerning the importance of such a service.

BackgroundEpilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy.Methods/DesignWe will use a two-arm, single-centre randomized controlled feasibility design, over a 20-month period, across five epilepsy clinics in Hertfordshire, United Kingdom. We will recruit 40 eligible adults with learning disabilities and a confirmed diagnosis of epilepsy and will randomize them to use either the Books Beyond Words booklet plus usual care (intervention group) or to receive routine information and services (control group). We will collect quantitative data about the number of eligible participants, number of recruited participants, demographic data, discontinuation rates, variability of the primary outcome measure (quality of life: Epilepsy and Learning Disabilities Quality of Life scale), seizure severity, seizure control, intervention’s patterns of use, use of other epilepsy-related information, resource use and the EQ-5D-5L health questionnaire. We will also gather qualitative data about the feasibility and acceptability of the study procedures and the Books Beyond Words booklet. Ethical approval for this study was granted on 28 April 2014, by the Wales Research Ethics Committee 5. Recruitment began on 1 July 2014.DiscussionThe outcomes of this feasibility study will be used to inform the design and methodology of a definitive study, adequately powered to determine the impact of the Books Beyond Words intervention to improve the management of epilepsy in people with learning disabilities.Trial registrationhttp://ISRCTN80067039 (Date of ISRCTN assignation: 23 April 2014).

A well-educated and trained workforce is undoubtedly crucial to the development of quality care for people with learning disabilities. Notwithstanding this, and unsure as to the need to continue to commission educational programmes for one part of this workforce-pre-registration learning disability nursing-South Central Strategic Health Authority commissioned the Valued People Project to undertake a detailed strategic review of educational commissioning, along with a review of the specialist learning disability health workforce more generally. This project has recently been completed, and provides a unique evidence-based expert evaluation of the future strategic direction of education commissioning and leadership for workforce issues in specialist learning disability services, as well as the wider NHS workforce. This is the first in a series of articles that reports on one aspect of the project: the focus group work undertaken with parents and relatives of people with learning disabilities, and people with learning disabilities themselves, as to the need and type of health workforce needed to support them in the future. The article concludes by identifying the key messages of importance from parents and people with learning disabilities concerning the future specialist and wider NHS workforce.