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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.
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.
Developing collective advocacy for people who have long-term contact with health or social services: final report
- Authors:
- SCOTTISH HUMAN SERVICES TRUST,., SCOTTISH DEVELOPMENT CENTRE FOR MENTAL HEALTH
- Publisher:
- Scottish Human Services Trust
- Publication year:
- 2003
- Pagination:
- 66p.
- Place of publication:
- Edinburgh
This report is a result of a research project commissioned by the Scottish Human Services Trust that studies collective advocacy for people who have long-term contact with health or social care services. The purpose of the study was to map, in two geographical areas, the range of groups whose role includes, or potentially includes, collective advocacy. Also, to identify the issues currently faced by groups in promoting the interests of members and achieving involvement and influence, and to highlight key areas for development that would be required to enhance capacity for collective advocacy. Five different illnesses and health conditions were selected for the study: cancer, heart disease, multiple sclerosis, diabetes and motor neurone disease.
Service use and needs of people with motor neurone disease and their carers in Scotland
- Authors:
- van TEIJLINGEN Edwin R., FRIEND Elizabeth, KAMAL Ayesha D.
- Journal article citation:
- Health and Social Care in the Community, 9(6), November 2001, pp.397-403.
- Publisher:
- Wiley
Reports on a national study of patients with motor neurone disease (MND) and their carers which was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated. Results found health services did not meet the needs of respondents of 19% of the cases and social services failed to do so according to 24% of respondents. Eighty percent of patients with MND had an identified carer. Nearly four of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, difference were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met.