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Journal article

A brief history of disability

Author:
HAWKING S.
Journal article citation:
Community Care, 6.4.89, 1989, pp.14-15.
Publisher:
Reed Business Information

The author of "A Brief History of Time", who has motor neurone disease, describes how his disease has not prevented him from becoming a prize-winning physicist, author and father.

Book Full text available online for free

Joined up thinking, joined up care...report of the Scottish Partnership for Palliative Care Big Lottery Fund project: ‘Increasing access to palliative care for people with life-threatening conditions other than cancer’

Author:
SCOTTISH PARTNERSHP FOR PALLIATIVE CARE
Publisher:
Scottish Partnership for Palliative Care
Publication year:
2006
Pagination:
138p.
Place of publication:
Edinburgh

The project focussed on the experiences of people with ten specific progressive, life-threatening conditions and those caring for them. These were: cystic fibrosis, dementia, heart failure, HIV/AIDS, motor neurone disease, multiple sclerosis, muscular dystrophy, Parkinson’s disease, renal failure and respiratory failure. Specific objectives of the project were to identify some of the common palliative care needs of people with specific non-malignant progressive conditions and to promote wider recognition of these, to understand some of the barriers involved in the difficulty often experienced by these groups in accessing appropriate palliative care, and to begin to identify possible ways of overcoming the barriers and meeting the needs identified. To attempt to meet these objectives a Scotland-wide consultation process was carried out. Questions were asked of people with conditions other than cancer and informal carers about their palliative care and information needs, professional carers about their educational support needs, and NHS Boards, local authorities and voluntary organisations about their needs assessments and planned palliative care strategies.

Journal article

Quality of life for people with motor neurone disease: a consideration for occupational therapists

Author:
FOLEY Geraldine
Journal article citation:
British Journal of Occupational Therapy, 67(12), December 2004, pp.551-553.
Publisher:
College of Occupational Therapists

Motor neurone disease (MND) is a rapidly progressive neurological disease of unknown cause resulting in relentless loss of function and high levels of disability. There has been a significant increase in quality of life (QoL) literature in recent years and the philosophy of the occupational therapy process may be considered consistent with the QoL construct. However, little is documented in occupational therapy literature that promotes consideration of the QoL construct in practice. This may be explained by the profession's adherence to the medical model of health care intervention. Expectations and desires continually shift for people with MND and individual-perceived QoL is determined by a continuous process of adjustment to increasing disability. To promote wellbeing, occupational therapists must identify what people with MND consider important in their lives.

Journal article

A lesson from the dying

Author:
McMILLAN S.
Journal article citation:
Social Work Today, 27.10.88, 1988, pp.16-17.
Publisher:
British Association of Social Workers

How sufferers from Motor Neurone Disease are supported by the Royal Victoria Hospital in Belfast.

Book Full text available online for free

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)

Book

Cognition and MND for health and social care professionals

Author:
MOTOR NEURONE DISEASE ASSOCIATION
Publisher:
Motor Neurone Disease Association
Publication year:
2010
Pagination:
16p.
Place of publication:
Northampton

Motor neurone disease (MND) was initially believed to affect only the motor system of patients. It is not uncommon to read or hear statements such as ‘the intellect is spared in MND’ or ‘don’t worry, the mind is intact, just the body is affected’. However, recent advances have revealed changes in the frontal and temporal areas of the brain that affect thinking and behaviour in MND. It is evident that patients, and particularly carers, would like more information regarding these changes. This A4 booklet aims to help health and social care professionals to support people affected by MND, and their families and carers, should changes to thinking and behaviour occur during the course of the disease.

Book Full text available online for free

Summary of guidelines for respiratory management in MND/ALS

Author:
MOTOR NEURONE DISEASE ASSOCIATION
Publisher:
Motor Neurone Disease Association
Publication year:
2005
Pagination:
7p.
Place of publication:
Northampton

Motor Neurone Disease (MND) is a rapidly progressive neuro-degenerative disease which leads to the loss of the power of movement in all voluntary muscles. This leaflet lists a number of clinical guidelines relating to respiratory management which aim to ensure that people with MND get the best possible care available. Each guideline was systematically developed from the evidence base. Two multi-professional groups, supported by staff from the MND Association, developed the recommendations. The guidelines are listed for the following issues: detection of early respiratory insufficiency; recommended procedures for monitoring respiratory function; management of respiratory insufficiency; patients’ and carers’ views on managing difficulties with respiratory function; non-invasive ventilation and respiratory insufficiency; invasive ventilation and respiratory insufficiency; and optimal methods of withdrawing both non-invasive and invasive ventilation. The guidelines are aimed at all those involved in caring for people with MND, including commissioning organisations, service providers, and health and social care professionals, and also people affected by MND.

Book Full text available online for free

Rethinking palliative care: an opportunity to explore new challenges: report of a conference of the Scottish Partnership for Palliative Care, 6 November 2002

Author:
RETHINKING PALLLIATIVE CARE
Publisher:
Scottish Partnership for Palliative Care
Publication year:
2002
Pagination:
20p.
Place of publication:
Edinburgh

Moves to replace the terms “terminal care”, and “hospice care” with “palliative care” have been part of a continuing evolution. Now there is a new movement to introduce the term “supportive care”, and to suggest that palliative care is part of supportive care. Instead, of course, supportive care has always been an integral part of what we do in palliative care. There are in fact almost 100 definitions of palliative care, yet there is no single definition that is really satisfactory. During its evolution, palliative care has moved from focussing exclusively on cancer to caring for those with motor neurone disease, HIV and AIDS and more recently, anyone with far advanced disease.

Book Full text available online for free

Filling the void: how real life health information builds better services

Author:
SUE RYDER CARE
Publisher:
Sue Ryder Care
Publication year:
2007
Pagination:
12p.
Place of publication:
London

The report has revealed a ‘hidden population’ of people living with conditions including multiple sclerosis, Huntington’s disease, Motor Neurone disease and stroke who are unknown to health bodies. Crucially a lack of data is creating a very real barrier to ensuring they receive appropriate, effective and cost-efficient care.

Journal article

Living with motor neurone disease: lives, experiences of services and suggestions for change

Authors:
HUGHES Rhidian A., et al
Journal article citation:
Health and Social Care in the Community, 13(1), January 2005, pp.64-74.
Publisher:
Wiley-Blackwell

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in understanding of these people's lives, experiences of services and their suggestions for change. This study addressed the questions: What are the lived experiences of people living with MND?; What are people's experiences of services?; and Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in 3 London boroughs. People living with MND and professionals were drawn from a database at King's College Hospital and through 'snowball' sampling. Nine people with MND, 5 carers/family members and 15 professionals took part in interviews, taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. Findings are presented within 3 substantive groups: the impact of MND on people's lives (physical impacts including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including coping methods); experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and suggestions for service change (better information and communication, including information on service entitlements; improved knowledge among professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. Concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.

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