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Difficult conversations with dying people and their families
- Author:
- MARIE CURIE CANCER CARE
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2014
- Pagination:
- 36
- Place of publication:
- London
The voices of terminally ill people and current and bereaved carers are often missing from discussions about experiences of end of life care. Terminally ill people are suffering unnecessarily due to poor access to pain relief at home. This report of a survey is based on 26 conversations with 8 terminally ill people, 4 current carers and 14 bereaved carers. The idea of a “good death” – which is pain-free, peaceful, and calm; respects dignity and emotional needs; and having control over the process and where it takes place – was not familiar to most participants. Also discussed are “the system” and its lack of any central coordination of information about available services; and the “difficult conversations” about death and dying. Unmet needs cover all aspects end of life care and support: the absence of a “road map”; lack of signposting, coordination, and consistency of contact; adopting a whole family approach; supporting greater communication; greater access to hospice care and services; better access to support for people with non-cancer diagnoses; pain management; 24/7 services; better support for carers; and emotional and bereavement support. The report includes extracts from these conversations, from which these key themes emerge: death is a journey, not a moment in time; care and support must be built around the needs and wishes of terminally ill people and their families, given the many unmet needs. This study concludes that it is only through understanding their experiences that we can begin to improve experiences for other terminally ill people and their families (Edited publisher abstract)
Palliative and end of life care for Black, Asian and Ethnic Minority groups in the UK: demographic profile and the current state of palliative and end of life care provision
- Authors:
- CALANZANI Natalia, KOFFMAN Jonathan, HIGGINSON Irene J.
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2013
- Pagination:
- 79
- Place of publication:
- London
The End of Life Care Strategy highlights that inequalities still exist in the care that different groups of people receive at the end of life. This report draws on an analysis of statistical data and the findings from a systematic review to understand the profile of Black, Asian and Minority Ethnic (BAME) populations living in the UK, and their unmet needs regarding palliative and end of life care. First, the characteristics of BAME groups in the UK (ethnic groups by age and geographical region, religion, language and characteristics of the foreign born population) are described using data from 2001 and 2011 Census. Figures are provided separately for England, Wales, Scotland and Northern Ireland. The report then examines to what extent the BAME populations are expected to increase and grow older in the next few decades according to the most recent population projections. The second part of the report draws on a review of the current literature on the state of palliative and end of life care provision for BAME groups. The reviews primary focus on access to, and receipt of care. They also recognise the importance of social inequalities when analysing unmet needs. Recommendations for policy, practice and research from the literature are then presented. Lastly, based on these two sources of information the report presents further recommendations with the aim to improve care for BAME populations in the UK. Tables are included throughout. (Edited publisher abstract)
Death and dying: understanding the data
- Author:
- MARIE CURIE CANCER CARE
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2013
- Pagination:
- 32
- Place of publication:
- London
End of life care in England is currently provided by a range of organisations, including hospitals, hospices, nursing services, families, carers and volunteers. This diversity brings many benefits; providing services which meet the different needs and preferences of people in the last year of life. It also means that people using these services and in different parts of the country will have very different experiences. This report has been designed to help commissioners, health and social care providers, policy makers and the public across the UK to identify gaps in end of life care in their areas. The report provides headline analysis of the key end of life care data, enabling comparisons for different localities and different health care settings. Sections include demographics; variation in experiences; variation in spending on end of life care; variation in the recognition of palliative care and end of life care needs; variation in hospital use prior to death; conclusions; what does this mean for policy and practice?
Young people with life-limiting conditions: transition to adulthood: executive summary of phase 1 report
- Authors:
- MARSH Sheila, et al
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2011
- Pagination:
- 9p.
- Place of publication:
- London
Children with life-limiting conditions are living longer and thus requiring support into adulthood. Carried out between January and March 2011, the first phase of the Young People and Transition programme focused on identifying the key issues and experiences of young people with life-limiting conditions making the transition into adulthood. This executive summary of the phase 1 report sets out the findings and recommendations from evidence gathering and analysis. The aim was to better understand the end-of-life care needs of this group of young people in order to design and implement effective ways of providing support. Group and individual interviews were conducted with young people and their parents, practitioners, researchers, and with stakeholders in other organisations. The findings show that young people overwhelmingly have a poor experience of transition, both in terms of services and in terms of having the level of autonomy and control they desire. Much more needs to be done to improve the system so that young people and families have a better experience and the system delivers equity and effectiveness. Recommendations are provided for stakeholders and to inform the design of phase 2 of the programme.
Young people with life-limiting conditions: further evidence gathering: BME/faith issues
- Author:
- MARIE CURIE CANCER CARE
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2011
- Pagination:
- 10p.
- Place of publication:
- London
Marie Curie Cancer Care’s Young People and Transition programme aims to improve services for young people with life-limiting conditions as they move into adulthood. One important finding from the evidence gathering phase of this research programme was the relative absence of perspectives informed by ethnicity or faith. The aim of this paper is to summarise the findings of a brief study about the experiences of young people with life-limiting conditions from black and minority ethnic (BME) and faith communities which was conducted to find out if there are any problems that need further exploration. The study focused on 2 groups: Muslim people of Pakistani and Bangladeshi origin; and Jewish people in North London. The findings show some evidence that there is low usage of palliative care services due to cultural beliefs about health and an expectation that these services will provide a culturally inappropriate service. Hospices need to ensure that their staff are responsive, and their services are culturally adaptive and that they better understand their communities. Suggestions are provided regarding: provision of culturally appropriate services by hospices; establishing contact with the Muslim communities; and involving Jewish people and agencies.
Young people with life-limiting conditions: transition to adulthood: phase 1 report
- Authors:
- MARSH Sheila, et al
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2011
- Pagination:
- 73p.
- Place of publication:
- London
Children with life-limiting conditions are living longer and thus requiring support into adulthood. There is growing evidence of unmet needs as these young people make the transition from children’s palliative care to adult services. This report summarises the findings of evidence gathering and analysis on the situation, needs and aspirations of young people (aged 13-25 years) with life-limiting conditions. The aim was to better understand the end-of-life care needs of this group of young people in order to design and implement effective ways of providing support. Interviews were conducted with young people and their parents, practitioners, researchers, and with stakeholders in other organisations. The findings show that young people overwhelmingly have a poor experience of transition, both in terms of services and in terms of having the level of autonomy and control they desire. Much more needs to be done to improve the system so that young people and families have a better experience and the system delivers equity and effectiveness. The following elements are required for a sustainable programme of change: a broader support system, taking on the social issues raised by young people; a continuing clear clinical lead role; cross-system networks; young person-centred ethos; and joint training and development. Recommendations are provided to take the work forward.
Transition issues in education affecting young people with life limiting conditions: year 9 to leaving school
- Authors:
- CROSS Pauline, STONE Jud
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2011
- Pagination:
- 12p.
- Place of publication:
- London
Marie Curie Cancer Care’s Young People and Transition programme aims to improve services for young people with life-limiting conditions as they move into adulthood. The work described in this paper forms a part of this larger project. This research aimed to identify, from the perspective of education, the issues and opportunities for young people with life limiting conditions, and for their families/carers, in managing their own best transition to becoming young adults. The methods comprised some initial scoping desk research and interviews with 13 key stakeholders. The paper discusses: the identified areas of good practice; and the gaps and issues in services. A visual representation of the possible education routes taken by young people with life limiting conditions is provided. The findings show that, although there is a formal process that has been designed to deal effectively with transition of young people with special education needs that should, in principle, apply to young people with life-limiting conditions, this process does not appear to be applied in a consistent way. Variation occurs across medical conditions, and across authorities and boroughs in London. Recommendations are provided for the Marie Curie Transitions programme and for the education service.
Don't let me down: ensuring a good transition for young people with palliative care needs
- Author:
- MARIE CURIE CANCER CARE
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2012
- Pagination:
- 24p.
- Place of publication:
- London
Adult services are increasingly being required to provide services for young people who previously would not have been expected to live into adulthood. The point at which young people move from children’s to adult services represents a particular challenge, particularly at a time of reduced budgets and growing demand. This report focuses on the part played by adult agencies in making transition work for young people needing palliative care. The research draws heavily on the experiences and views of young people with palliative care needs, their families and their carers. The findings show that many young people and their families find transition daunting. On leaving the comprehensive care offered by children’s services, they often have to deal with and establish important relationships with a range of agencies and professionals. The result can be gaps in services or fewer or less appropriate services. Young people want services which enable them to lead ordinary lives, and to have a feeling of freedom at the same time as being offered appropriate support. The report provides a number of recommendations for change at local and national level.
Committed to carers: supporting carers of people at the end of life
- Author:
- MARIE CURIE CANCER CARE
- Publisher:
- Marie Curie Cancer Care
- Publication year:
- 2012
- Pagination:
- 23p.
- Place of publication:
- London
Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved. The research was designed to explore how people experience caring for someone with a terminal illness in the context of their family, work and social lives. Some of the patients used hospice or hospital in-patient care, others remained at home. The separate chapters consider: the impact of caring for someone at the end of life; access to information and support; the place of care and place of death; and bereavement. It concludes with recommendations designed to ensure that more carers of someone at the end of life receive the support they need to keep caring.
Living and dying with dementia in England: barriers to care
- Authors:
- MARIE CURIE CANCER CARE, ALZHEIMER'S SOCIETY
- Publishers:
- Marie Curie Cancer Care, Alzheimer's Society
- Publication year:
- 2014
- Pagination:
- 24
- Place of publication:
- London
This report assesses access to appropriate high quality care in the final stage of dementia – a progressive, terminal illness. It highlights that dementia is often not recognised as a terminal diagnosis, and this can lead to poor access to care, inconsistent quality of care and inadequate pain management. The report draws on research from across the UK and particularly from University College London, as well as findings from health and social care services. The paper examines the three main barriers that prevent many people from accessing appropriate high-quality care at the end of their lives. These are: poor identification and planning, including poor recognition of dementia as a terminal illness and a cause of death and lack of appropriate/timely diagnosis and care planning; inequality of access to palliative care, hospice care and funding and discrimination; and inconsistency in care standards and inappropriate hospital admissions. The report aims to bring together NHS organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to explore how to address the barriers and develop an action plan that each organisation can to sign up to. (Edited publisher abstract)