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 survey¹ (A Life in Limbo) was completed in collaboration with international healthcare charity Picker, and results come at a time of heightened awareness of carers experiences, with Carers Rights Day taking place last week (25 November), which calls on 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 roles².
- 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%)³.
- 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 the carers’ of people living with myeloma, as well as to build a picture of how widespread these experiences are for different groups of people. 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. 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 in the UK.”
Carer’s can find advice and information on the support services available to them in the Myeloma UK publication, An infopack for carers of myeloma patients, available at www.myeloma.org.uk.
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Notes to Editors
¹ The survey involved 374 carers between May and June 2016.
² The Care Act 2014 aimed to make Carer’s Assessments more widely available to people in caring roles. Carer’s Assessments offer local council support to those who provide care and support to an adult friend or family member.
³ figure from Carers UK. http://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures
Myeloma, also known as multiple myeloma, is a cancer caused by abnormal cells in the bone marrow.
There is currently no cure for myeloma but there are many very effective treatments and recently published statistics show that many patients live with myeloma for years, thanks to collaboration between industry, the NHS and organisations like Myeloma UK.
- Myeloma is the third most common form of bone marrow cancer. It represents 2% of all cancers
- There are 5,500 new cases of myeloma diagnosed in the UK every year – that’s 15 people every day
- In 2013, 4,703 cases were diagnosed in England, 391 in Scotland, 285 in Wales and 118 in Northern Ireland
- 72% of people diagnosed with myeloma are aged 65 years or over
- Myeloma has been identified as having one of the highest rates of delay in diagnosis. Currently, 1 in 5 myeloma patients die within 60 days of diagnosis
- Approximately 70% of myeloma patients survive for one year or more after diagnosis
- A third (33%) of myeloma patients will live for at least 10 years
About Myeloma UK
Myeloma UK is the only organisation in the UK dealing exclusively with myeloma, a cancer for which there is no cure. The charity provides information and support to patients and their family and friends, and aims to improve standards of treatment and care through research, education, campaigning and raising awareness. The organisation receives no government funding and relies almost entirely on voluntary donations and fundraising activities.
Picker are a leading charity, dedicated to health and social care improvement and using people’s experiences effectively, as a tool to support care quality and patient experience improvement. For further information about Picker visit http://www.picker.org/
or contact Lanisha Butterfield, Senior Communications Manager on 01865 208166 or Lanisha.firstname.lastname@example.org