Family Matters Survey
UK-wide survey sheds new light on the impact on the families of people living with Rheumatoid Arthritis
NRAS launched the findings of a major survey – FAMILY MATTERS on 1st May 2012. While there is a growing body of research on the effect of RA on the person who has the disease, there has been relatively little information available about its impact on family life. This research aims to provide information that will begin to address that gap and will help health professionals to understand the importance of including the family in the treatment and healthcare of people with Rheumatoid Arthritis.
Rheumatoid arthritis (RA) is a chronic, progressive and disabling auto-immune disease, affecting more than 400,000 people in the UK. It is a painful condition, can cause severe disability (this varies between individuals and depends on how severe/aggressive the disease is) and ultimately affects a person’s ability to carry out everyday tasks. The disease can progress very rapidly causing swelling and damaging cartilage and bone around the joints. Any joint may be affected but it is commonly the hands, feet and wrists. It is a systemic disease which means that it can affect the whole body and internal organs (although this is not the case for everyone with RA) such as the lungs, heart and eyes. It affects approximately 3 times more women than men and onset is generally between 40 - 60 years of age although it can occur at any age.
Key Findings of the Report:
• Financial impacts: 57% reported a negative or very negative effect on their
• Impacts on domestic life: 92% reported changes in their responsibilities
for household tasks, with 46% reporting significant changes. 82% managed
these without paid help or help from family and friends
• Impacts on their social life: 60% agreed that their social life was restricted
because of their partner’s RA
• Impacts on their mood and mental wellbeing: 93% reported that their
partner’s RA affected their own mood or mental wellbeing, including 22%
who said this was often and 13% who said it was most of the time
• Impacts on their relationship: 41% said that they had had difficulties in
their relationship as a result of RA, and 67% reported that their sex life had
been negatively affected. However, 32% felt that their partner having RA
had brought them closer.
• 68% of respondents with children were concerned about the impacts on their
children. 63% thought there were negative effects, while 18% also considered
there were positive effects.
Clare Jacklin, Director of External Affairs at NRAS said “It has been humbling and a real privilege for NRAS, that so many have shared very intimate and personal thoughts with us by participating in
Dr. Chris Deighton, President, British Society for Rheumatologycommented “This report is an invaluable wake up call to those of us who try to provide high quality services for people with RA. We cannot consider people with RA in isolation, and need to give thought to those around them. The carers have become a lost and hidden tribe. We need to bring them out into the open, and support them, just as we do the person with RA.”
For more information about rheumatoid arthritis or coping with every day life living with this disease contact the helpline on 0800 298 7650.
The survey was supported by UCB Pharma through an educational grant. UCB had no editorial control on the contents.
NRAS provides support, information and advocacy for people with Rheumatoid Arthritis and Juvenile Idiopathic Arthritis, their families, friends and carers. We are also a resource for health professionals with an interest in rheumatology and work closely with rheumatology teams across the UK.
Our goal is ‘a better life for people living with rheumatoid arthritis’ and we seek to achieve this by:
• Providing information, education, support and advocacy
• Raising public and government awareness of RA
• Campaigning for equity of access to best treatment and care
• Facilitating the networking of people with RA and encouraging self-help