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Gaps in support for carers of bone marrow cancer patients

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Emotional, mental and physical factors, combined with a lack of support and awareness of support services available, cause a detrimental impact on the lives of carers, according to a survey.

Half of carers feel they are not able to speak to healthcare professionals on their own about their worries but would like to, suggested the charity research.

“Over 40% of those surveyed said they felt they weren’t given enough information at diagnosis”

Jayne Galinsky

In addition, of the carers who were surveyed, 42% felt they were not given enough information at diagnosis about how myeloma may affect them.

Cancer charity Myeloma UK has undertaken a first of its kind survey aimed at developing a better understanding of the issues facing those who care for myeloma patients in the UK.

It estimates that every year 5,500 people in the UK are diagnosed with myeloma and that around 25,000 friends and family members across the country are providing care and support to them.

The survey – A Life in Limbo – canvassed the views of 374 carers between May and June this year.

It comes at a time of heightened awareness of carers experiences, with Carers Rights Day taking place on 25 November, which calls on all carers to get more support.

The results of the Myeloma UK carer survey, completed in collaboration with the Picker Institute, suggest that one third of carers do not access any support at all.

“An evidence-based understanding of their needs is key to improving carers’ experiences”

Bridget Hopwood

Half of all participants had never heard of a carer’s assessment for local council support, and only 6% have had one – despite the Care Act 2014 aiming to make such assessments more widely available.

The survey also found that 58% of carers often felt like they have nobody to talk to, with 84% suggesting that the emotional impact of being a carer had a substantial effect on their life.

In addition, 50% of carers said they had been unable to work or had to retire early to care for a person with myeloma – a figure substantially higher than the UK average of 20%.

A number of carers interviewed suggested the loss of work or income had a knock on effect on other areas of their lives, increasing the likelihood of feelings of social isolation, stress and anxiety.

Dr Jayne Galinsky, Myeloma UK health services researcher, said: “The results of this survey are extremely important because they help us to identify what carers need and where there are gaps in support services.

“Importantly, over 40% of those surveyed said they felt they weren’t given enough information at diagnosis about how myeloma may affect their lives, and this figure seems to have a knock on effect with one third of carers suggesting that they do not access any support at all,” she said.

Bridget Hopwood, director of health experiences at Picker, added: ““Assessing carers’ experiences is crucial to forming an understanding of the impact of a long-term carer role on an individual’s wellbeing.

“It also supports awareness of the knock-on effects of carers’ own wellbeing on the quality of care they are able to provide,” she said. “An evidence-based understanding of their needs is key to improving carers’ experiences, support for carers and in turn the quality of care for people living with myeloma.”

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