Many people with arthritis cannot work, socialise, run their homes or play with their children, according to a recent Irish study. One in two people with arthritis can no longer participate in social activities they used to enjoy, and one in three are worried about how the condition has affected their appearance. Depression and anxiety are major issues for thousands of people with the condition.
The effect arthritis has on the lives of so many is almost unquantifiable. The substandard and under-resourced rheumatology services in Ireland impact significantly on the physical wellbeing of people with arthritis, and as a consequence, emotional wellbeing is affected in a major way.
Arthritis care in Ireland leaves a lot to be desired. Ireland has the lowest rate of specialists per head of population in both the EU and all of Europe. We have one consultant for every 400,000 people in the country. The World Health Organization (WHO) recommends one for every 80,000.
The numbers are pitiful when you consider that one in every six Irish people suffer from some sort of arthritis. Waiting lists for initial hospital appointments can take years and depend very much on the area of the country in which you live.
The new study, which was conducted by Arthritis Ireland, was the first nationwide study to focus on the wellbeing and relationships of people with arthritis. It showed the debilitating effects arthritis can have on people’s everyday lives.
“Prior to the survey,we certainly knew there was an issue through feedback from our volunteers in the local branches and calls to our arthritis helpline. But we certainly didn’t expect the issue to be as grave as emerged in the survey,” said John Church, chief executive of Arthritis Ireland.
“The physical pain and fatigue and disability side of arthritis has been reasonably well-documented. The impact of that is the social isolation that people feel,” he said.
According to Mr Church, arthritis is not curable, so Arthritis Ireland is there to help people self-manage, get their lives back, cope with the condition, and ultimately, extend their lives.
The survey found that the emotional wellbeing of people with arthritis is a major concern. One in three respondents said they were sad and depressed, while two in five admitted that it is sometimes hard to keep going and that their arthritis is a constant worry for them.
“I feel like arthritis has changed me from a normally positive, healthy person to a depressed, lonely, fed-up, irritable person finding it hard to keep it together,” said one respondent.
As many as half of all respondents who were separated, divorced or living apart believed that arthritis was a contributing factor in their marriage break-up.
Forty percent said that arthritis had a negative impact on intimacy with their spouse or partner, with some saying that they no longer had an active sex life.
Mr Church said that the results were released internally prior to being made public, enabling Arthritis Ireland to respond to them and expand their services accordingly. They looked at their own self-management programme and updated it. The arthritis helpline was set up and a booklet, Coping with Emotions, was launched.
“Some 95% of calls to the helpline have been emotionally-related fear issues. It has gone a long way to helping people. The booklet we launched is hitting the streets now and is in all the clinics and GP surgeries,” he said.
Mr Church hopes the changes will influence health professionals, especially GPs and consultants, and make them aware of these issues.
He feels that the biggest obstacle for people with arthritis is the lack of consultants.
“Better care would mean better emotional wellbeing. Our hypothesis internally is that some of the emotional issues are exacerbated by the lack of services – the four or five hour travel that people have to do, the waiting for years on waiting lists,” he said.
“The reaction of people with arthritis who are trying to cope with these emotional issues has been amazing. It’s almost as if they feel people can finally hear them. These are exactly the issues I’ve been trying to deal with, that a health professional doesn’t understand or care, to be honest,” he added.
The helpline, in particular, has been a huge factor in helping people deal with the emotional side of having arthritis. It has proved very popular.
“We’re getting about four times the number of calls they are getting in the UK. As soon as we released the number and opened the line, they didn’t stop coming. I think it’s because there was nowhere else for them to turn to. Our survey showed that people trust and respect their GP, but there’s only so far a GP can go. You’ve got your family and friends, but there’s only so much you can rely on them. You’re talking to people who have arthritis, who have been through the issues, and that helps,” he said.
Stressing that we are five times below having the number of consultants that the WHO has recommended, Mr Church says that the positive impact is palpable when even one new consultant is appointed to an area.
“A second rheumatologist was appointed in the Galway area two years ago. Already you can see a massive dent and impact on the waiting list in the west of Ireland. The service immediately improved,” he said.
At the moment, the waiting time to see a consultant is from 15 months to four years, depending on where you live. Consultants prioritise those who are deemed more in need, but that can sometimes mean that those with osteoarthritis or wear and tear on the joints have to wait the longest.
Why are the arthritis services so poor in a country where arthritis is so common? According to Mr Church, the whole area has been subject to successive years of neglect. However, it is hoped that that situation will change soon. The HSE has formed a working group and is due to publish a report on arthritis services in Ireland soon.
Arthritis Ireland continues to stress that arthritis is ideal for being treated in the community. If arthritis services were available in the community, hospital beds would be freed, money would be saved and time would not be wasted driving four or five hours to hospitals.
“Rheumatology is perfect for community solutions, and that’s what the HSE is all about. We don’t need extra beds. We need nurse specialists, physiotherapists, occupational therapists, all of which can be done in the community. Arthritis is not an expensive disease to get right. It is very expensive when you get it wrong though.”
For more information, see Arthritis Ireland's website at http://www.arthritisireland.ie. To ring their helpline, dial 1890 252 846.
Additional information on rheumatoid arthritis is also available on the Irishhealth.com RA Clinic.
Discussions on this topic are now closed.