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MS family and friends 2019 survey findings
- Authors:
- GRANT Rachael, CAVANDER-ATTWOOD Fredi
- Publisher:
- MS Society
- Publication year:
- 2020
- Pagination:
- 20
- Place of publication:
- London
This survey highlights the challenges facing family members and friends providing care and support to people with MS (Multiple Sclerosis). A total of 549 people completed the survey, which was conducted by the MS Society. Areas covered included; the hours of support carers provide; the impact of caring on their employment and financial security; and health and wellbeing. The survey found that half of respondents did not receive the practical, emotional or financial support they need; one in three (34%) have given up work as a result of supporting people with MS, and nearly all respondents to the survey (90%) said their health and wellbeing had been negatively impacted. Changes carers felt would make the most difference to them were: the availability of appropriate care and support services for the person with MS; respect and recognition of their role from health and care professionals; and improved information and advice. (Edited publisher abstract)
Social care and the MS community in England
- Authors:
- WALLACE Laura, CAVANDER-ATTWOOD Fredi, REDFERN-TOFTS Diane
- Publisher:
- Multiple Sclerosis Society
- Publication year:
- 2017
- Pagination:
- 15
- Place of publication:
- London
Using information from a survey of over 9,000 people with Multiple Sclerosis in England, this report examines the type of social care needs and support people receive, how it is funded and who provides it. The analysis covers: level of need; relationship between need and age; types of care and support; sources of support, how support is funded; and care plans. The survey analysis found that 1 in 3 people with MS who need help with essential everyday activities like washing, dressing and eating aren’t getting the support they need. It also found that, compared to the results of a 2013 survey, higher proportions of people are now paying for care and relying on family and friends to care for them. The report makes recommendations for national government and local authorities, which include that social care assessors are supported to better understand the impact of MS and that care plans are truly co-produced with the person with Multiple Sclerosis Society (MS). (Edited publisher abstract)
End the care crisis: stories from people affected by MS in England
- Author:
- CAVANDER-ATTWOOD Fredi
- Publisher:
- Multiple Sclerosis Society
- Publication year:
- 2017
- Pagination:
- 36
- Place of publication:
- London
In this report, eight people affected by Multiple sclerosis (MS) share what social care really means to them and their families. The report is based on interviews, capturing the experiences of people with MS and their carers aged 30-72 in England. The interviews covered individuals’ and carers’ care and support needs, experience of services over time and the impact of receiving or not receiving social care on their lives. Their stories cover three themes: missed opportunities to prevent, reduce and delay needs developing that are more costly to individuals and the state; variable quality of care; and lack of availability and choice of care due to a fragile care market. The stories highlight the problems of an underfunded social care system in crisis and also outline the economic and social returns investing in social care could bring. It makes a series of recommendations for Government, for local authorities and health care professionals and for people affected by MS. The recommendations include for Government to commit to a long-term funding settlement for social care, based on regular, independent forecasts of need. (Edited publisher abstract)