Refractory asthma in the UK: cross-sectional findings from a UK multicentre registry

Introduction: Refractory asthma represents a significant unmet clinical need where the evidence base for the assessment and therapeutic management is limited. The British Thoracic Society (BTS) Difficult Asthma Network has established an online National Registry to standardise specialist UK difficult asthma services and to facilitate research into the assessment and clinical management of difficult asthma.
Methods: Data from 382 well characterised patients, who fulfilled the American Thoracic Society definition for refractory asthma attending four specialist UK centres—Royal Brompton Hospital, London, Glenfield Hospital, Leicester, University Hospital of South Manchester and Belfast City Hospital—were used to compare patient demographics, disease characteristics and healthcare utilisation.
Results: Many demographic variables including gender, ethnicity and smoking prevalence were similar in UK centres and consistent with other published cohorts of refractory asthma. However, multiple demographic factors such as employment, family history, atopy prevalence, lung function, rates of hospital admission/unscheduled healthcare visits and medication usage were different from published data and significantly different between UK centres. General linear modelling with unscheduled healthcare visits, rescue oral steroids and hospital admissions as dependent variables all identified a significant association with clinical centre; different associations were identified when centre was not included as a factor.
Conclusion: Whilst there are similarities in UK patients with refractory asthma consistent with other comparable published cohorts, there are also differences, which may reflect different patient populations. These differences in important population characteristics were also identified within different UK specialist centres. Pooling multicentre data on subjects with refractory asthma may miss important differences and potentially confound attempts to phenotype this population.

‘Stakeholders’ views of legal and advice services for people admitted to psychiatric hospital’

This paper describes a study that used a mixed method approach to elicit the views of a range of stakeholders about experiences of compulsory admission to psychiatric hospital, and the use of the Mental Health Review Tribunal (MHRT). The paper begins with an introduction to the background of the study, one that took place in Northern Ireland, a region in the UK with its own mental health legislation and policy. A review of literature is then presented. This highlights some of the disadvantages that service users and carers face when dealing with professionals during and following compulsory admission to hospital. This section concludes with an overview of literature on the MHRT in the UK. A range of methods was used to gather data from the following stakeholders: five service user and carer focus group interviews (n = 44); interviews with four lawyers experienced in Tribunal work; an interview with a legal member of the Tribunal; a survey of solicitors who identified themselves as equipped to carry out Tribunal work; interviews with three managers of organisations that provided patient advocacy services; letters to hospital managers requesting information provided to patients and carers. The findings reveal a number of themes associated with these experiences of compulsory admission to hospital and subsequent use of the Tribunal. Service users and carers generally found it difficult to access relevant information about rights, information provided by hospital managers was uneven and lawyers were often not familiar with processes associated with compulsory admission. There was a range of views about the Tribunal. Most respondents felt that the Tribunal was necessary and mostly satisfactory in the way it carried out its functions, but stakeholders raised a number of issues. Carers in particular felt that they should be more involved in decision-making processes, whereas lawyers tended to be focused on more technical, legal issues. Problems of regrading prior to the Tribunal and in examining medical evidence were highlighted by lawyers. There was an appeal for better information and advice by service users and carers, and recognition of the need for better training and education for lawyers. The paper concludes with a brief discussion about current mental health law in the UK, arguing that, in this context, professionals should more proactively use information and advice that can enable service users and carers to defend their rights. Keywords: compulsory mental health; law; legal and advice services

Dealing with post-traumatic stress disorder: The psychological sequelae of bloody Sunday and the response of state services

Objective: This article describes the political context of health and social care services in Northern Ireland at a the of intense social conflict. Method: Concepts from post-traumatic stress disorder (PTSD) and other relevant international psychological literature are then used to study the experience of the Bloody Sunday families, victims of a traumatic event that happened in Derry in January 1972. Results: High levels of psychological morbidity within this population are reported, alongside some evidence that families had not received services that may have helped resolve the trauma. Conclusions: The authors noted that new services planned as a result of the current peace process may offer social workers and other professionals new ways to address the unmet needs of people traumatized by the Troubles.

The policy context of leaving care services: A case study of Northern Ireland

The transition of foster youth from state care to independent living has received increased research, practice, and policy attention in the United States and in many other countries. Most contributions to this literature have focused on documenting poor outcomes across various dimensions of need in the young people's lives whereas little attention has been given to the policy context in which the responses to those needs are being developed. In this article, we argue that there is a pressing need for better understanding of how the policy context can both promote and impede the development of appropriate services. To illustrate our argument, we use Northern Ireland as a policy case study both because of recent initiatives underway there in regard to youth transitions from state care and because of the heightened political sensibilities associated with it as a society. We draw attention to the socio-political historical context, a number of intersecting social policies, and the place of social work as a key occupation involved in delivering service improvements. We conclude by suggesting that this case study not only highlights the need to address similar aspects of the policy on youth transition frorn state care in the United States but also demonstrates the benefits of reflecting on policy development and implementation elsewhere in the world.

‘Making Older People Equal: Reforming the Law on Access to Education and Other Services’

Age-based discrimination in the supply of goods and services (including educational services) has only very recently been outlawed in the United Kingdom by the Equality Act 2010, the relevant sections of which have not yet been brought into force. This paper critically considers the Act and its implications, as well as the current proposal for an EU Directive on Goods and Services.The greatest immediate potential of the Equality Act lies in the general prohibition against age discrimination and the scope of the exceptions to it. The paper argues that exceptions permitting service providers to discriminate against older people (i.e. negative exceptions) should be very specifically set out in the reforming legislation.There should be no general defence to a claim of age discrimination based around the concept of ‘reasonableness’, which would not be consistently interpreted by courts and tribunals in a way that steers clear of traditional ageist assumptions and stereotyping.The paper argues that service providers should be permitted to discriminate in favour of older people (i.e. make positive exceptions) if the reason for doing do so satisfi es legislative criteria which are designed, amongst other things, to meet the particular needs of older persons or to promote social inclusion. Under this proposal, preferential treatment such as age-related concessionary fees for adult education courses and programmes would be lawful.

User perspective on palliative care services: experiences of middle-aged partners bereaved through cancer known to social work services in Northern Ireland

This qualitative research study explores experiences of partners bereaved through cancer, who were resident in an urban area of Northern Ireland and who had been service users of the social work services. Data were collected in 2004 from 10 individuals who participated in semi-structured interviews. Emergent themes were identified using thematic content analysis and findings analysed under four categories: cancer journey; impact of bereavement; process of adjustment and change; and experience of support services. Opportunities to facilitate communication were not always maximised, often resulting in poor bereavement outcomes. Although hospices undertook bereavement risk assessment, participants were unaware of its use and queried its accuracy without service user involvement. The most cited informal support was family and friends, although such help was time-limited. Service user feedback regarding social workers was generally positive; however, there was a lack of knowledge about their role in palliative care. Post-bereavement adjustment was influenced by the quality of social networks, the responsibilities of lone parenthood, and challenges to life values and core beliefs. A framework for palliative care social work has been recommended based on research findings.