Search results for ‘Subject term:"motor neurone disease"’ Sort:
Results 1 - 10 of 10
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.
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.
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.
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
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.
Managing medical crises: the experiences of people affected by Motor Neurone Disease and their carers
- Authors:
- HILL Jacqueline, WILSON Eleanor
- Journal article citation:
- Journal of Care Services Management, 5(4), October 2011, pp.190-199.
- Publisher:
- Taylor and Francis
People living with motor neurone disease (MND) can suffer from a range of acute medical emergencies throughout the course of their illness. The majority of people are cared for at home and during an acute incident need to access crisis intervention services. However, there is limited knowledge on the experiences of patients and carers of using these services. This qualitative study explored the experiences of people with MND and their family carers who had accessed a crisis intervention service during a medical emergency. Semi-structured interviews were conducted with 7 people with MND; 5 family carers, and 2 bereaved family carers. Findings revealed that the majority of participants were satisfied with the service they received. Issues relating to negative experiences included a lack of clear information about when services were available, a lack of understanding of how the ambulance service works, and poor communication within and between services. Implications for improvements in services to this group of users are discussed.
Summary of guidelines for nutritional management
- 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 in the area of nutrition 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: evaluation of nutritional status; nutritional maintenance; determining the fluid and caloric requirements; management of constipation and other intestinal problems; evaluation of dysphagia; management of dysphagia; interventions to ease difficulties with swallowing; enteral feeding; and alternative feedings to percutaneous endoscopic gastrostomy (PEG). 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. Gaps where further research is needed to understand the best way of providing care are highlighted.
Triggers for palliative care: improving access to care for people with diseases other than cancer
- Author:
- JONES Simon
- Publisher:
- Marie Curie
- Publication year:
- 2015
- Pagination:
- 41
- Place of publication:
- London
This report explores the evidence around access to palliative care for people with terminal illnesses other than cancer. It also uses existing evidence to identify factors which trigger palliative care referrals for people with these conditions. Research shows that 12 per cent of people accessing specialist in-patient services in hospices or hospitals in England, Wales and Northern Ireland have a diagnosis other than cancer but more than two-thirds of deaths in England and Wales are due to illnesses other than cancer. People who are living with a terminal illness will often have a number of conditions to manage at the same time, such as cancer, chronic heart disease, stroke and dementia, especially if they are older. The increased research focus on end of life care needs of people with dementia, however, has not necessarily translated yet into national strategic approaches to dementia care across the UK. Fewer than one in 10 people with dementia at the end of life on acute medical wards are referred to a palliative care specialist, compared to one in four people who do not have cognitive problems. The report explores what needs to change to make timely access to appropriate care a reality for people regardless of their condition, based on the available research, and sets out specific recommendations for governments and health and social care professionals and organisations. (Edited publisher abstract)
What are the care needs for people with motor neurone disease and how can occupational therapists respond to meet these needs?
- Author:
- FOLEY Geraldine
- Journal article citation:
- British Journal of Occupational Therapy, 70(1), January 2007, pp.32-34.
- Publisher:
- Sage
Motor neurone disease is a fatal neurodegenerative disorder and from disease onset health care intervention is palliative in nature. Numerous studies on wellbeing in motor neurone disease are consistent with the palliative care literature, where the values assigned to non-physical life domains increase with disease progression. Occupational therapists should consider all components of wellbeing for people with motor neurone disease and not physical disability alone. It is argued that a better understanding of motor neurone disease and an awareness of the service needs important to this client group are necessary to improve the quality of care and to assist occupational therapists in meeting care needs.
Palliative and end of life care for older people: best practice guide
- Author:
- BRITISH GERIATRICS SOCIETY
- Publisher:
- British Geriatrics Society
- Publication year:
- 2009
- Pagination:
- 4p.
- Place of publication:
- London
- Edition:
- Rev. ed.
Good end of life care is an important component in the care of older people. Palliative care seeks to influence improvement in the quality of life of patients with incurable disease by advocating a holistic, problem-orientated approach, including symptom control. Cancer patients are traditionally viewed as the primary recipients of palliative care, but it is increasingly recognised that good palliative care is important in the management of patients with any incurable disease, whatever the diagnosis (e.g. dementia, chronic chest disease, chronic heart failure, motor neurone disease, Parkinson's disease). Since the majority of people die at an older age, this is particularly relevant to those caring for older people.
Too ill to talk: user involvement and palliative care
- Authors:
- SMALL Neil, RHODES Penny
- Publisher:
- Routledge
- Publication year:
- 2000
- Pagination:
- 263p.,bibliog.
- Place of publication:
- London
Debates the concept of user involvement in the context of people with serious illness. Reviews the literature on user involvement, describes user involvement in palliative care, and reviews the experiences of people with multiple sclerosis, motor neurone disease, and cystic fibrosis.