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Press Release 89% of people with rheumatoid arthritis experience chronic fatigue, an invisible symptom with a severe impact

National survey from National Rheumatoid Arthritis Society and 2020health explores full impact of chronic fatigue on rheumatoid arthritis.

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The National Rheumatoid Arthritis Society (NRAS) in collaboration with 2020health, a leading health social enterprise think tank, today announces the results from Invisible Disease: RA and Chronic Fatigue 2014, a survey of 1,954 people, assessing the impact of chronic fatigue on capability for work, their emotional and mental health and assessing the experience of chronic fatigue due to the autoimmune disease, rheumatoid arthritis (RA). These results mark the launch of RA Awareness Week (16th-22nd June) that aims to raise awareness of the invisible symptoms of the disease.

There are nearly 690,000 people across the United Kingdom with RA. Many of these people experience chronic pain, inflammation, stiffness, reduced joint function and chronic fatigue. Chronic fatigue, in particular, is an invisible symptom of the disease that can severely impact upon a person’s quality of life and ability to work.

Of concern are the survey’s findings, which show that there is a significant lack of awareness of fatigue amongst the public. A staggering 83% of respondents felt that the public is not at all aware of the impact chronic fatigue has.

Whilst medical guidelines for RA highlight annual reviews and self-management education to manage chronic fatigue, the survey findings suggest this is not reflected in patient experience. 79% (four out of five respondents) said that their healthcare professional has never tried to measure their levels of fatigue and just under half (47%) never speak to their specialist nurse or rheumatologist about it.

Ailsa Bosworth, Chief Executive of the National Rheumatoid Arthritis Society, says “The results from the survey are eye-opening. It is abundantly clear from the report that references to the management of chronic fatigue need to be strengthened within the relevant RA clinical guidelines and that further resources urgently need to be put in place to help healthcare professionals deliver improved care.”

Chronic fatigue also has a significant impact on capability for work, the survey finds. 50% of respondents of working age said that they were unemployed. 71% of working age unemployed respondents said fatigue had contributed to their inability to work.

Julia Manning, Chief Executive of 2020health, says “Hidden from our sight, this debilitating disease leads many people into worklessness, isolation and depression. These findings are shocking. A quarter of respondents experienced job loss within a year and 50% of sufferers stopped work within six years. The fact that so many people end up dependent on benefits through this disease is, itself, a call to action”.

Further results show that:
• 90% of people said fatigue caused them to feel depressed during the last seven days
• 54% reported that fatigue negatively affected their sex life
• 8%, over 150 people, attributed the loss of a relationship to fatigue

Based on these findings, our report recommends the governments of England, Scotland, Wales and Northern Ireland to urgently initiate public awareness campaigns. The outstanding work of NRAS, which leads the way in providing support and advocacy for people with RA, is needed now more than ever. Do find out how you can support us at www.nras.org.uk

For further information please contact:

Daniela Boyd-Waters                                     Yasmin Ghariani 
daniela@nras.org.uk                                        yghariani@thisispegasus.co.uk
01628 823524                                                  01273 712000 


Notes to Editors
The Survey - 2,029 respondents answered the survey, with 75 respondents stating that they had ‘never had fatigue’. This means a total of 1,954 respondents completed the survey all the way to the end. The questions in the survey were developed by NRAS in order to explore the range of impacts on chronic fatigue and to provide insight for RA awareness week 2014. 

•Rheumatoid arthritis can affect people of any age. Around three quarters of people with rheumatoid arthritis are first diagnosed when of working age and women are three times as likely as men to have the disease.
•690,000 people in the UK (1%) have rheumatoid arthritis costing the NHS approximately £560 million per year. The National Audit Office estimate that the total cost of RA to the UK economy is £4.8 billion per year.
•The mission of the National Rheumatoid Arthritis Society (NRAS) is ‘working for a better life for people living with rheumatoid arthritis’ and this is sought by providing information, education, support and advocacy; raising public and government awareness of rheumatoid arthritis; campaigning for equity of access to best treatment and care; and facilitating the networking of people with rheumatoid arthritis and encouraging self-help.
•NRAS provides support, information and advocacy for people with rheumatoid arthritis and their families, friends and carers. NRAS provides a resource for health professionals and works closely with rheumatology health care professionals across the UK.

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read on Toll of work time lost to arthritis: Patients take six times as much time off as their healthy colleagues

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