Family Matters Survey

Published: 1 May 2012

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 580,000 people in England, which suggests that over 690,000 adults in the UK live with the condition. 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
household income

• 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 NRASsaid “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
this survey.”

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 NRAS on 0845 458 3969 or 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.

For a full hard copy of the report, and for more information contact: Clare Jacklin: clare@nras.org.uk