Myeloma UK carer survey findings suggest that 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.
Leading 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.
The survey. (A Life in Limbo) was completed in collaboration with international research charity Picker. With Carers Rights Day only last week (25 November), results come at a time of heightened awareness of Carers experiences, with the event calling for all carers to get the support they’re entitled to, when they need it.
Key findings suggest that 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.
The Myeloma UK carer survey results showed that:
• One third of carers surveyed said that they did not access any support at all.
• Half of all carers in our research had never heard of a Carer’s Assessment, and only 6% have had an assessment – the Care Act 2014 aimed to make Carer’s Assessments more widely available to people in caring roles..
• Of those surveyed 42% felt that they were not given enough information at diagnosis about how myeloma may affect them, and half of carers feel that they are not able to speak to healthcare professionals on their own about their worries but would like to.
• 50% of carers say they have been unable to work or had to retire early to care for a person with myeloma. This figure is substantially higher than the UK average of 1 in 5 (20%).. o In addition, a number of carers interviewed suggested that the loss of work or income has a knock on effect on other areas of their lives increasing the likelihood of feelings of social isolation, stress and anxiety.
• 84% of carers always put the needs of their relative or friend with myeloma before their own, with some carers suggesting that putting their or other family members’ needs on hold could cause tension and stress in the family, particularly where the lives of dependent children were affected.
• 58% of carers stated that they often feel like they have nobody to talk to, with 84% suggesting that the emotional impact of being a carer has a substantial effect on their life.
Myeloma UK Health Services Researcher Dr Jayne Galinsky 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.
“It’s imperative that relatives and friends of myeloma patients have the best information and support they need to deal with the impact of myeloma on their lives, and Myeloma UK is working to make sure this happens.”
Every year 5,500 people in the UK are diagnosed with myeloma. It is estimated that approximately 25,000 friends and family members across the UK are providing care and support to these patients.
On the impact this research could potentially have on improving carer support and services, Bridget Hopwood, Director of Health Experiences at Picker observed: ““By combining in-depth interviews with a survey, it was possible to reveal detailed and personal accounts of the experiences and needs
of thecarers’ of people living with myeloma, as well as to build apicture ofhow widespread theseexperiences are for different groups ofpeople.Assessing carers’experiencesiscrucialto forming an understanding ofthe impactofa long termcarerrole on an individual’swellbeing.Italso supports
awarenessofthe knock-oneffectsofcarers’own wellbeing on the qualityofcare theyare able to provide.An evidence-based understanding oftheirneedsiskeyto improving carers’experiences,supportforcarersand in turn the qualityofcare forpeople living with myeloma inthe UK.”
Carer’scan find advice and information on the supportservicesavailable to themin the Myeloma UKpublication,An infopackforcarersofmyeloma patients,available atwww.myeloma.org.uk.