Access to and use of clinical services and disease-modifying therapies by people with progressive multiple sclerosis in the United Kingdom

Background: According to current UK guidelines everyone with progressive MS should have access to an MS Specialist but levels of access and use of clinical services is unknown. Our objective was to investigate access to MS Specialists, use of clinical services and disease-modifying therapies (DMTs) by people with progressive MS in the United Kingdom. Methods: A UK wide, online survey was conducted via the UK MS Register. Inclusion criteria: age over 18 years, primary or secondary progressive MS and a member of the UK MS Register. Participants were asked about access to MS Specialists; recent clinical service use; receipt of regular review and current and previous DMT use. Participant demographics; quality of life and disease impact measures were supplied from the UK MS Register. Results: In total 1298 participants responded: 5% were currently taking DMT; 23% had previously taken DMT; and 95% reported access to an MS Specialist. Most utilised services were: MS Doctor/Nurse (50%), General Practitioner (45%), and Physiotherapist (40%). Seventy-four percent received a regular review although 37% received theirs less than annually. Current DMT use was associated with better quality of life but past DMT use was associated with poorer quality of life and higher impact of disease. Conclusions: Access to, and use of, MS Specialists was high. However a gap in service provision was highlighted in both receiving and frequency of regular reviews

What kind of mixed race/ethnicity data is needed for the 2020/21 global population census round: the cases of the UK, USA, and Canada

In western countries the mixed race/ethnicity population is experiencing a rapid increase in numbers and growing diversity, raising challenges for its capture in censuses and surveys. Methods include exact combinations of interest, multi-ticking, and open response, as exemplified by the censuses of England and Wales, the USA and Canada, and Scotland and Northern Ireland, respectively. However, investigations of question face validity, reproducibility of findings, and efficacy of capture reveal quality problems with all three approaches. The low reporting reliability of this population urgently requires research and testing to identify optimal strategies. While there is clearly no one gold standard method of capture and current approaches have developed within national contexts, it is timely to review these methods across the three countries and to make recommendations for the upcoming 2020/21 censuses

Heatwave planning: the role of the community in co-producing resilience

Drawing on a thematic analysis of relevant policy documents, the aim of this paper is to comment on an apparent disconnect between two associated contemporary UK policy areas: planning for heatwaves and community resilience. Regional and national policy documents that plan for heatwaves in the UK tend to focus on institutional emergency responses and infrastructure development. In these documents, although communities are mentioned, they are understood as passive recipients of resilience that is provided by active institutions. Meanwhile, contemporary discussion about community resilience highlights the potential for involving communities in planning for and responding to emergencies (although the concept is also the subject of critique). Within this context, the paper proposes that – through engagement with the ‘community resilience’ policy agenda and its critique – effort should be made to articulate and realise greater participation by individuals, and voluntary and community sector groups in heatwave preparation, planning and response

Exclusionary employment in Britain’s broken labour market

There is growing evidence of the problematic nature of the UK’s ‘flexible labour market’ with rising levels of in-work poverty and insecurity. Yet successive Governments have stressed that paid work is the route to inclusion, focussing attention on the divide between employed and unemployed. Past efforts to measure social exclusion have tended to make the same distinction. The aim of this paper is to apply Levitas et al’s (2007) framework to assess levels of exclusionary employment, i.e. exclusion arising directly from an individual’s labour market situation. Using data from the Poverty and Social Exclusion UK survey, results show that one in three adults in paid work is in poverty, or in insecure or poor quality employment. One third of this group have not seen any progression in their labour market situation in the last five years. The policy focus needs to shift from ‘Broken Britain’ to Britain’s broken labour market

Towards an evidence‐base for student wellbeing and mental health : definitions, developmental transitions and data sets

Against a background of huge changes in the world of university and college students since the turn of the millennium, together with a multitude of reports on student mental health/wellbeing, this article argues that the field of student mental health is hampered by the imprecise use of terms, a rush to action by universities in the absence of a robust evidence‐base, and a lack of overall coordination and collaboration in the collection and use of data. In response, we argue for clearer and more consistent use of definitions of, as well as differentiations between, student wellbeing and mental health, for a longitudinal approach to the student body that captures their developmental transitions to and through university, and a strategic and systematic approach to the use of bona fide measures in the collection of data on wellbeing and on the process of outcomes in embedded university counselling services. Such a coordinated approach will provide the necessary evidence‐base upon which to develop and deliver appropriate support and interventions to underpin and enhance the quality of students’ lives and learning while at university or college

The impact on welfare and public finances of job loss in industrial Britain

It is important to take a long view of many economic problems. This paper explains how the large-scale loss of industrial jobs in parts of Britain during the 1980s and 1990s still inflates the contemporary budget deficit in the UK. Drawing on the findings of several empirical studies by the authors, it shows that although there has been progress in regeneration the consequences of job loss in Britain’s older industrial areas have been near-permanently higher levels of worklessness, especially on incapacity benefits, low pay, and a major claim on present-day public finances to pay for both in-work and out-of-work benefits. Furthermore, as the UK government implements reductions in welfare spending the poorest places are being hit hardest. In effect, communities in older industrial Britain now face punishment in the form of welfare cuts for the destruction previously wrought to their industrial base

The impact on welfare and public finances of job loss in industrial Britain

It is important to take a long view of many economic problems. This paper explains how the large-scale loss of industrial jobs in parts of Britain during the 1980s and 1990s still inflates the contemporary budget deficit in the UK. Drawing on the findings of several empirical studies by the authors, it shows that although there has been progress in regeneration the consequences of job loss in Britain’s older industrial areas have been near-permanently higher levels of worklessness, especially on incapacity benefits, low pay, and a major claim on present-day public finances to pay for both in-work and out-of-work benefits. Furthermore, as the UK government implements reductions in welfare spending the poorest places are being hit hardest. In effect, communities in older industrial Britain now face punishment in the form of welfare cuts for the destruction previously wrought to their industrial base

A systematic review of methods to immobilise breast tissue during adjuvant breast irradiation

Greater use of 3D conformal, Intensity Modulated Radiotherapy (IMRT) and external beam partial breast irradiation following local excision (LE) for breast cancer has necessitated a review of the effectiveness of immobilisation methods to stabilise breast tissue. To identify the suitability of currently available breast (rather than thorax) immobilisation techniques an appraisal of the literature was undertaken. The aim was to identify and evaluate the benefit of additional or novel immobilisation approaches (beyond the standard supine, single arm abducted and angled breast board technique adopted in most radiotherapy departments). A database search was supplemented with an individual search of key radiotherapy peer-reviewed journals, author searching, and searching of the grey literature. A total of 27 articles met the inclusion criteria. The review identified good reproducibility of the thorax using the standard supine arm-pole technique. Reproducibility with the prone technique appears inferior to supine methods (based on data from existing randomised controlled trials). Assessing the effectiveness of additional breast support devices (such as rings or thermoplastic material) is hampered by small sample sizes and a lack of randomised data for comparison. Attention to breast immobilisation is recommended, as well as agreement on how breast stability should be measured using volumetric imaging. Keywords: Breast, immobilisation, positioning, reproducibility, review.</p