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This paper’s objective is to develop a model for the appropriate and equitable use of disease‐modifying treatments in multiple sclerosis. The prevalence and incidence of multiple sclerosis was established in Leeds. A specialist multiple sclerosis team with two consultant neurologists and a multiple sclerosis support nurse was based at one centre. The team co‐operated with purchasers to develop a model of care. This included a referral protocol, strict prescribing criteria, counselling and education of patients, the use of patient‐centred outcome measures and training and feedback to other neurologists. A total of 217 people with multiple sclerosis were assessed from April 1997 to March 2000. Our experience suggests that a centralised multi‐district clinic developed by close collaboration between clinicians and health purchasers and operating under agreed rules is a feasible and effective model for the managed introduction of new treatments to the NHS.

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with such a condition is likely to have emotional and psychological consequences. We carried out semi‐structured interviews with nine partners and analysed the interview transcripts using grounded theory (Strauss & Corbin, 1998), the phase presented in this article formed part of a larger overall study that explored the impact of living with MS for partners and a family. Our analysis in this phase highlights two core themes centred on identity issues faced by the participants: ‘playing detective’ in order to acquire information and manage the situation; and ‘reshaping identities’ in a shifting context, which reflected the participants' difficulties in reconfiguring important identities (at work and at home). Although previous research has addressed how carers cope, there is a dearth of qualitative literature relating to whether or not partners' identities are affected by taking a central role in caring, including how previous identities are maintained and new ones acquired.

The purpose of this paper is to increase awareness and compliance of The National Institute for Health and Care Excellence (NICE) Guidance regarding cognitive impairment in multiple sclerosis (MS).

Assessments were offered routinely to consecutive inpatients with MS and to 20 per cent of outpatients. Once consent was gained, a cognitive assessment and subjective measure of cognition was completed with the patient, as well as a disability scale completed by the Medical Consultant. Individually targeted cognitive rehabilitation advice was provided using a bespoke advice leaflet. Afterwards, those who completed the assessment were asked to provide feedback on their experience.

The percentage that were classed as below average cognitively and the pattern of impairment was comparable to previous findings. Memory was rated the most affected by the largest number of MS individuals and a strong relationship was found between objective and subjective measures of attention. The average functional disability level was rated at 6.99. Evaluations for the service provided were positive; over half of the sample was unaware of NICE Guidance on this issue but 100 per cent would recommend this service and provided optimistic quotes.

This evaluation has enabled greater numbers to receive the recommended services and provided a useful baseline assessment of cognitive impairment and of patient attitudes towards this service. Resulting from this process, a new service framework has been proposed and presented at a local level. The advice leaflet developed for this process has been well received by patients and colleagues resulting in its submission to become an official NHS leaflet.

Developed clinical governance of NHS services to patients with MS in offering improved assessment and management of cognitive problems. This is in contrast to the national trend showing little improvement of MS care and the lack of NICE implementation by the MS Trust and Royal College of Physicians audit. Furthermore, the bespoke advice leaflet developed for patients and carers of MS demonstrates originality of information provided.

Multiple sclerosis (MS) relapses are unpredictable in onset, severity, type of symptoms, and duration. They can have a profound effect on a person's daily activities, employment, relationships with friends and family, and social life. Individual budgets may be a means of providing personalised, timely, and flexible support to people with MS in preparation for, and during, a relapse. This paper aims to report on a pilot scheme that aimed to help people with MS to prepare for future relapse.

The paper provides an evaluation of a one year pilot scheme conducted in East Sussex, UK, that aimed to help people with MS to prepare for future relapse by a process of tailored relapse support planning, in combination with the provision of an individual grant of £750.

An independent, mixed methods evaluation (n=12) was conducted incorporating telephone and face‐to‐face interviews, focus groups, and self‐reported questionnaires. The evaluation indicated that the service was valued by participants and that, overall, they reported feeling more in control of managing a relapse or worsening of symptoms.

The results will inform the development and expansion of the service, with larger scale research projects required to further establish the evidence base.

Multiple sclerosis (MS) is a neurological disorder which affects many of the working population. People who have it may be successful workers for a full lifetime. Others are forced to give up work. Counselling can not only help people who themselves are struggling with the unpredictable and disturbing symptoms of MS, but also their colleagues and families. The article addresses issues for employees with MS and issues raised for a counsellor in the workplace. These include symptoms; issues of control; emotional reactions of people with MS and those around them; questions of behaviour; work anxieties; concealment of MS; the symbolism of MS and of losing work; practical issues and further resources.

Multiple sclerosis (MS) is a chronic condition with variable physical, cognitive, and quality of life impacts. Little research has investigated how MS outcomes vary by social identity (race, gender, disability, age, sexual orientation, and nationality) and social location (place within systems of power and privilege). However, emerging evidence points to racial and ethnic group disparities in MS outcomes. This chapter integrates core concepts from the life course perspective and an intersectional feminist disability framework to interrogate the role of diagnosis pathways in determining differential MS outcomes. MS diagnosis pathways (the time from symptom onset to the point of diagnosis) are a logical place to begin this work given the varying nature of symptom onset and the importance of a quick diagnosis for optimal MS outcomes. Whereas the life course perspective provides a framework for understanding disability transitions and pathways across the life span, an intersectional feminist disability framework centers disability within an axis of overlapping social identities and locations. The combination of both frameworks provides an approach capable of examining how MS disparities and inequities emerge in different contexts over time. The chapter begins with an overview of MS and current knowledge on disparities (mainly racial) in MS prevalence, diagnosis, and outcomes. The chapter proceeds to describe the utility of key concepts of both the life course perspective and intersectional frameworks when researching health disparities. Finally, the chapter ends with a theoretical application of an intersectional feminist disability life course perspective to investigate disparities in MS diagnosis pathways.

The purpose of this study was to survey parents who have Multiple Sclerosis (MS) and examine issues surrounding their parenting.

Qualitative surveys were used to collect data.

Findings from the study include three themes: (a) They needed to know; (b) Involving children with treatment; and (c) I can’t do this alone. Discussion of findings and conclusions and recommendations for parents, physicians, and future studies are presented.

Data for the study was collected through self-reports and limited demographic data was collected.

Continued research on MS is needed, especially in the area involving children in at-home treatments and children as caregivers. Children can be a challenging population to investigate, yet as evidenced in this study, children are being involved in MS treatments of their parents. A greater, more in-depth look at the role of a child as caregiver is warranted.

Multiple sclerosis, otherwise known as disseminated sclerosis syndrome or MS for short, is so‐called because it involves a multiple scarring, or ‘sclerosis’, of the central nervous system. The onset of the disease is often difficult to identify because it begins with intermittent episodes of attacks which may be quite mild. There are also periods of remission so that attacks may be forgotten and not related to the disease. MS is more prevalent in females and initial episodes usually occur between the ages of twenty and forty years of age.