Search results for ‘Subject term:"motor neurone disease"’ Sort:
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Caring for carers of people with MND: how Government can help
- Author:
- MOTOR NEURONE DISEASE ASSOCIATION
- Publisher:
- Motor Neurone Disease Association
- Publication year:
- 2016
- Pagination:
- 45
- Place of publication:
- Northampton
This report presents the views of carers of people with motor neurone disease (MND), MND Association staff and volunteers on how support for carers needs to be improved. It describes what it is like to care for someone with MND and looks at carers’ experiences of support, the financial challenges they face and the extent to which they feel valued and respected for the role they perform. Caring for someone with MND can be an extremely intense, exhausting and lonely experience. Over half of carers of people with MND provide over 100 hours of care per week. By comparison, 38 per cent of carers overall provide that level of care. The report highlights the common issues carers experience, both in receiving support to meet their own needs and getting help to arrange care for the person they are caring for: some carers go without support; carers aren’t getting carers assessments at the right time; support and services don’t match needs; there are real problems with respite care; children and young people affected by MND need specific support; there is very little support for carers after bereavement; problems in arranging care for people with MND has a significant negative impact on carers; caring for someone with MND can have a significant impact on earnings, savings and future financial security; work is very important to some carers, but employers are not always aware of what it means to be a carer. The report presents a range of recommendations around practical support, financial support and valuing carers, calling for the creation of a universal offer of free, non-means tested support for carers while performing their caring role and after bereavement; the creation of a system of financial and employment support that ensures carers do not experience hardship or poverty as a result of their caring role; and working towards a society where recognising, valuing and supporting carers is everyone’s responsibility. (Edited publisher abstract)
Models of care in motor neurone disease: final report to the Motor Neurone Disease Association
- Author:
- WILSON Myles
- Publisher:
- Office for Public Management
- Publication year:
- 2016
- Pagination:
- 79
- Place of publication:
- London
This research, commissioned by the Motor Neurone Disease Association, aimed to identify different models of care for people with motor neurone disease (MND) which could be used by the Association to plan, commission and deliver quality multidisciplinary services. The term ‘model of care’ is used to refer to the way health and social care services are delivered and set up to provide care for people with MND. The project looked the types of activities and services delivered to provide care and support; the location and setting of services; how health, social care and other services work together; and the how teams and professionals involved interact. It also examines the benefits of different models of care and how they are commissioned, and delivered. Research methods included a rapid evidence review on models of care for people with MND; a call for evidence, both targeted to MND Care Centres and Care Networks and to health and social care professionals working with people with MND; and twenty follow-up interviews. Based on the interviews five models of care were identified: MND Care Centres, MND Care Networks; Non-MND Association specialist clinics, community-based teams with a specialist care coordinator, and mixed teams without a coordinator role. Factors contributing to an effective model of care for MND included: multidisciplinary teams to help professionals keep up-to-date, inform them of newly diagnosed people, and identify issues that need to be addressed; MND-specific clinics to provide a one stop shop; local community services that provide sufficient care at home; and good care coordination. The role of a care coordinator was particularly valued both for providing support to people with MND and their families, and as a source of contact and advice for professionals. (Edited publisher abstract)
Motor neurone disease: quality standard: QS126
- Author:
- NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE
- Publisher:
- National Institute for Health and Care Excellence
- Publication year:
- 2016
- Place of publication:
- London
This quality standard covering the assessment and management of motor neurone disease. It sets out five quality statements which draw on existing guidance. The five quality statements cover: information and support at diagnosis, respiratory assessment and non-invasive ventilation, provision of equipment and adaptations based on multidisciplinary team assessment, continuity of care, and planning for end of life care. For each statement, the standard includes quality measures that can be used to assess improvement and outlines what it means for service providers, health professionals, commissioners, patients, service users and their families. The standard aims to contribute to improvements in a person's quality of life, functional ability, satisfaction with care and support provided, and survival from onset of symptoms. (Edited publisher abstract)
Caring and MND: support for you
- Author:
- MOTOR NEURONE DISEASE ASSOCIATION
- Publisher:
- Motor Neurone Disease Association
- Publication year:
- 2016
- Pagination:
- 150
- Place of publication:
- Northampton
A guide providing information and advice for carers supporting people with Motor Neurone Disease (MND). The guide covers practical support, emotional and personal support and details about where carers can seek further help. The first part of the guide looks at the caring role and includes information on carer's rights, getting a carer's assessment, and the support and services that are available for carers. Part two covers emotional and personal support and explores the varied reactions carers may experience and how to manage them. It also covers supporting children and young people who are close to the person with Motor Neurone Disease or are involved in caring and adjusting to life after the caring role has ended. The final parts of the guide provide additional information about services, publications and useful organisations. Notes pages are also included to help carers record important information and plan for the future. Quotations from carers who have been supporting someone with Motor Neurone Disease are included throughout. The guide will be useful for both unpaid carers and professionals looking to support them in their caring role. (Edited publisher abstract)