80% of rheumatoid arthritis patients in Scotland say fatigue is biggest barrier to employment: NRAS survey reveals

The largest ever survey of rheumatoid arthritis (RA) patients of working age in Scotland has revealed that the severe fatigue caused by the disease is the largest barrier to people staying in employment, with over 80% citing it as a factor.

The findings are the result of several years work by the National Rheumatoid Arthritis Society (NRAS) to establish the extent that RA prevents people with RA from staying in work. Following the findings of the 2007 UK-wide survey, NRAS decided to run the survey again in Scotland to identify the specific barriers that are preventing RA patients there staying in work.

57% of those not employed said that their RA forced them to give up work prematurely. Of those, 56% reported that they stopped working within one year of diagnosis and 80% stopped working within 6 years of diagnosis. This is considerably higher than the 59% figure revealed by the 2007 UK Survey. A comparison of the two studies reveals that significantly more people with RA in Scotland lose their jobs at an early stage in their disease.

In contrast to the 2007 survey that went to NRAS members, the 2010 questionnaire was distributed through outpatient clinics by health professionals.

Speaking about the findings, NRAS Chief Executive and RA sufferer, Ailsa Bosworth said:

“This survey reveals the severe impact of fatigue suffered by people with RA in Scotland and the detrimental effect it has on their working lives. Misunderstandings about the disease by employers is damaging to the career progression of RA sufferers. Over 30% of patients in Scotland said that their employers had limited or no understanding of RA which makes coping with flare ups, hospital visits and the pain and fatigue of living with the disease so much harder and this impacts deeply on patients’ families. The cost of people with RA being out of work is much greater than that of treating them, as demonstrated by our recent study, ‘The Economic Burden of RA’.”

The findings have been published in the ‘RA and Work’ report that is being launched today ahead of the British Society for Rheumatology Conference (21st- 23rd April 2010). The Report also makes recommendations for how RA patients can be better supported to stay in work.

NRAS would like to see a more integrated and proactive government approach towards helping people with RA remain in work. 62% of respondents in employment and over 50% not in employment said it would be useful to receive more information about the support available to them. Health professionals should sign post people to organizations like NRAS who can help at an early stage. Pre-existing schemes also need to be better advertised, as it is clear there is a real need for practical support. Access to rapid access clinics to help manage flares and ultimately reduce time off was cited as the most valuable support mechanism to RA sufferers.

David Marshall, Consultant Rheumatologist at Inverclyde Royal Hospital in Glasgow said:

“The high number of people retiring within one year of diagnosis with RA demonstrates how important it is that patients are diagnosed and referred for treatment as swiftly as possible. Scotland has fewer rheumatologists per head of the population than the rest of the UK which is delaying the early diagnosis of RA and is preventing people from getting the right treatment and support for them to stay active and stay in work.”

Former primary school teacher, Susan Dixon from Edinburgh, had to retire from the job she loved following her diagnosis with RA at the age of 44. She said:

“I was surprised that so many people in the survey found fatigue the largest barrier to work but sadly this is the common experience of people with RA in Scotland. I could cope with the pain of living with RA but the draining fatigue took all my energy and I was left unable to teach. RA patients need to know that they are not alone and that they can seek help. The NRAS’s booklets 'I Want to Work' and 'When an Employee has RA' are really useful guides. It is really important that employers are aware of the impact that RA has on people’s ability to work so that they can support patients properly.”

Key Survey Findings:

• 32.8% of respondents believed that RA had been detrimental to their career progression, with nearly one fifth saying they had to abandon their current career for another.
• Over 50% stating that the problems they experienced at work had a major impact on their personal financial situation.
• 80% of respondents said that the problems experienced at work had a major impact on their social lives, over 50% on their relationships.
• Over half of those unemployed stated they would like to return to work if they found a suitable job that accommodated their RA.
• 30% of patients stated that their employers had limited or no understanding of RA at all.
• Of those patients no longer in work, only 4 stated that their former employer had offered support to help them make changes to working conditions to make their work easier.

ENDS

NOTES TO EDITORS

1. CASE STUDIES - Edinburgh RA patient and former primary school teacher, Susan Dixon, is available for interviews on request. Please click here to read her case study. For further information please contact Louise Abbott on 0207 824 1868 or 07812 576831 or louise@insightpa.com.
2. EMPLOYMENT AND RHEUMATOID ARTHRITIS IN SCOTLAND - The NRAS Work Survey 2010 ‘RA and Work: Employment and Rheumatoid Arthritis in Scotland. A national picture’ is available from the NRAS website www.nras.org.uk. The findings of the report will be presented at the British Society for Rheumatologist Conference in Birmingham, 21st-23rd April 2010. The survey and report are supported by an educational grant from Abbott. Abbott has had no control over the survey design or content of this report.
3. ABOUT NRAS - The National Rheumatoid Arthritis Society (NRAS) was launched in October 2001 and is now established as the campaigning voice in the UK for people with Rheumatoid Arthritis. NRAS provides a total one-stop-shop with support, information and advocacy for all people in the UK with RA, their carers and families. NRAS has a national volunteer network, a group of people with the disease who provide peer to peer support and provide additional resource to help NRAS in many different ways. For more information about NRAS and details on how to contact the NRAS volunteer network please go to www.nras.org.uk