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A charter for MS services: the voice of people affected by MS: full version
- Author:
- RIDLEY Joanna
- Publisher:
- Multiple Sclerosis Society
- Publication year:
- 2004
- Pagination:
- 25p.
- Place of publication:
- London
People affected by MS should have services: that recognise their personal dignity; that seek to maximise their personal potential;. that enable them to be fully involved in and to influence decisions about service provision; and that take account of the full range of physical, cognitive, emotional, economic and social implications of having MS; that meet agreed standards; that are subject to continual improvement; that are accessible to them when and how they need them; and that are delivered by appropriately skilled and experienced professionals; and that are provided equitably.
Multiple sclerosis: the questions you have the answers you need
- Author:
- KALB Rosalind
- Publisher:
- Demos Medical Publishing
- Publication year:
- 2004
- Pagination:
- 657p.
- Place of publication:
- New York
- Edition:
- 3rd
This book, developed under the auspices of the Consortium of Multiple Sclerosis Centers in the US represents an interdisciplinary approach to the disease. Its goal is to help those with MS and their families formulate questions to ask their healthcare providers so they can manage life with MS. Chapters cover topics ranging from neurology and treatment to emotional, sexual, and employment issues. Introductory material is followed by a series of questions most often asked of the authors in their work with MS, as well as questions received by the Information Center at the National Multiple Sclerosis Society. Chapters conclude with a list of recommended readings and other available resources. Appendixes include information sheets about drugs commonly used to treat and manage MS, as well as a comprehensive glossary of terms.
Getting the best from social services
- Author:
- MULTIPLE SCLEROSIS SOCIETY
- Publisher:
- Multiple Sclerosis Society
- Publication year:
- 2004
- Pagination:
- 19p.
- Place of publication:
- London
This guide will helps MS suffers find their way around social care assessments and services to get the social care they need. It goes through the most common steps and offers advice on what they are entitled to and what you need to know. If affected by MS to the extent that it affects daily life, sufferers are entitled to have their social care needs assessed. This is an entitlement – not a favour. Any informal carer (partner, family member or friend who provides you with care and practical support) is also entitled to a Carer’s Assessment.
A qualitative study comparing the experiences of tilt-in-space wheelchair use and conventional wheelchair use by clients severely disabled with multiple sclerosis
- Authors:
- DEWEY Ann, RICE-OXLEY Margaret, DEAN Taraneh
- Journal article citation:
- British Journal of Occupational Therapy, 67(2), February 2004, pp.65-74.
- Publisher:
- Sage
Explores and compares the experiences of tilt-in-space wheelchair use and conventional wheelchair use in severely disabled clients with multiple sclerosis and significant spasticity. The research design was a descriptive qualitative approach, using in-depth audio-taped interviews in clients' homes carried out over a 9-month period. A total of 23 clients (7 tilt-in-space wheelchair users and 16 conventional wheelchair users) were recruited from three adjacent district wheelchair services in South-East England. The majority of tilt-in-space wheelchair users (6 out of 7) reported that their chairs were comfortable compared with only half of those in conventional wheelchairs (8 out of 16). The positive aspects of tilt-in-space wheelchair provision included comfort, improved postural support, enhanced seating stability, relief of pressure and being able to rest sitting out of bed for prolonged periods, often for more than 6 hours a day. The negative aspects of tilt-in-space wheelchairs included their bulky size and lack of manoeuvrability compared with conventional wheelchairs. All the wheelchair users had experienced difficulty with transport and many had relied on family and friends to help with the purchase of expensive adapted vehicles.
What is MS?: a guide to multiple sclerosis
- Author:
- MULTIPLE SCLEROSIS SOCIETY
- Publisher:
- Multiple Sclerosis Society
- Publication year:
- 2004
- Pagination:
- 28p.
- Place of publication:
- London
Multiple sclerosis (MS) is a condition of the central nervous system. It is the most common disabling neurological disease among young adults and affects around 85,000 people in the UK. MS is most often diagnosed in people between the ages of 20 and 40 (though it can be earlier or later). Women are almost twice as likely as men to develop MS, and in rare cases it affects children. Some people feel relief after diagnosis because they finally understand their symptoms and have a name for their condition. However, shock, fear, grief or anger are also perfectly natural reactions and it can often take several months before these feelings settle down. Adapting to life with MS can take some time, but with a generally positive attitude and appropriate health and social care, most people manage their condition well.
The politics of regulation within the 'modernized' NHS: the case of beta interferon and the 'cost-effective' treatment of multiple sclerosis
- Author:
- CRINSON Iain
- Journal article citation:
- Critical Social Policy, 24(1), February 2004, pp.30-49.
- Publisher:
- Sage
A case study is presented which examines the political and organizational processes associated with the attempt by the Department of Health, through its appraisal body NICE, to regulate the introduction of a new drug treatment (beta interferon) for patients with multiple sclerosis on 'cost-effectiveness' grounds. Underpinning this case is a concern to engage critically with the claim that one is witnessing the emergence of a de-regulated contractual form of health care provision within 'postmodernity'. A general assertion of this paper is that New Labour's NHS modernization programme has produced more rather than less central regulation over the activities of health trusts and the work of health care professionals. However, in this case study the Department of Health is shown to have ultimately failed in achieving its goal of regulating the introduction of beta interferon precisely because it involved social and economic factors beyond its direct control. These factors included the clinical needs of patients, the prescribing activities of doctors and the refusal of the pharmaceutical companies to reduce their profit margins.