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Experiences and views of carers of people living with MND: findings of the MND Association Carers Survey 2015
- Author:
- FITZGERALD Sarah
- Publisher:
- Motor Neurone Disease Association
- Publication year:
- 2015
- Pagination:
- 28
- Place of publication:
- Northampton
Reports on the findings of a survey of carers of people living with Motor Neuron Disease (MND) in order to better understand what it's like to be a carer for people living with MND and to highlight carers' concerns. A questionnaire was sent to 1,544 people on the MND Association database and an online questionnaire was also posted on the MND Association website during March and April 2015. The report is based on questionnaires from 452 respondents, 336 received by post and 116 submitted online. Findings are discussed in the following areas: being a carer; support from health and social care services; MND Association services; and about you, which captured key demographic data about the respondents. Findings include: that over half of carers who responded spent more than 100 hours per week caring; 19% are not in work because of their caring role; almost two thirds of carers don’t receive any benefits or allowances; and more than a third of carers were unaware of their right to a Carer Assessment under the Care Act. The main concern carers had about their role was what would happen if they fall ill and about their ongoing ability to cope. A comparison of the results with MND National Carers’ Survey data published in 2013 is included. (Edited publisher abstract)
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)