The human side of rheumatoid arthritis
Published on 04 August 2014
The development of biological therapies has had an enormous impact on reducing the physical side of inflammatory arthritis for millions of people around the world. But acknowledging and treating the psychological and emotional impact of these potentially devastating conditions, lags way behind. Jane Tadman reports.
Novelist Alice Peterson, diagnosed with rheumatoid arthritis 22 years ago at the age of 18, remembers clearly when her doctor asked her how she was. Not how her hip or knee was, but how she was actually feeling.
She remembers it well because it was the only time in those 22 years that anyone in the medical profession has asked her that question.
“It was in my second year at Bristol University and I was away from home, 18 months after diagnosis, and I was surrounded by students who were doing all the things that I wanted to do, and used to take so for granted,” recalls Alice. “Sport, partying: being a normal, carefree teenager.”
“The pain, both emotional and physical, began to make me feel anxious and depressed. My doctor asked me how I was and I said that my hip hurt; everything hurt. And he said: ‘How are you up here? pointing to my head. That was the first and last time that anyone has talked to me about the human side.
There is more to rheumatoid than treating a swollen knee
“He suggested I went on a regular course of steroid injections to get me though university, believing that while there are side-effects with any steroid treatment, for me there would also be side-effects going home and being nursed by my parents aged 18. ‘Your independence and sense of well-being is important,’ he said. He could see that there was more to rheumatoid arthritis than just treating a swollen knee. Looking back now, not all doctors see that.”
Alice is now 40, and has been on a number of biological therapies over the years, latterly the anti-TNF drug Cimzia (certolizumab pegol), which keeps the disease largely under control, although she still suffers regular flare-ups.
She believes there is a still a massive gap in the way that the human side of rheumatoid arthritis is handled by the NHS. “It worries me that over the 20 years that I have had rheumatoid arthritis that’s the only time I have been asked that question. You’re trying so hard to get the pain under control that the emotional and psychological side is often overlooked, but it needs to be understood and addressed. I am fortunate enough to have friends and family who are supportive and have seen me through some dark periods, but what if you don’t?”
Alice now has a professional as well as a personal interest in this aspect of rheumatoid arthritis. She was invited to be a research patient partner in an Arthritis Research UK scoping study carried out by senior research fellow at the University of the West of England in Bristol Dr Emma Dures, who wants to find out how much support patients with rheumatoid arthritis actually get in the course of their disease, and what type of services they would like to be able to access.
A high demand from patients for help in coping
The results of the study, presented at a conference in Liverpool in May, back up Alice’s own experience in finding a high demand among patients for help to cope with the social and emotional implications of the condition. Effectively, it found that people need more support than they are currently offered to deal with the impact of long-term disease, such as depression, fatigue, anxiety and distress.
The research surveyed 1,200 patients’ opinions on the support currently available and their preferences for the type of services they would like to see in the future.
The findings suggested a need for psychological support from diagnosis onwards, with almost every patient wanting support (97%) and suggesting they would use psychological support services (96%). Despite this, less than a quarter (23%) had been asked about social and emotional issues by a rheumatology professional, suggesting there is a gap between the support provided and the support patients need. Only a small minority (6%) felt that social and emotional issues were irrelevant to their condition.
Explains Dr Dures: “I was surprised by the strength of feeling in the patient survey. Two thirds of patients said that if it was available they would be interested in attending self-management or coping clinics. Other services that patients would use to help them cope with their condition included peer support groups, pain management and patient education.
“Patients also said they needed more support for practical aspects, such as the effects of their arthritis on work, leisure and relationships. Many people with these conditions are of working age and could get back to work with help from health professionals in the rheumatology team.”
Interestingly, it is not just patients who think there is insufficient psychological support and provision. In a related study, to be published shortly, Dr Dures also surveyed specialist rheumatology nurses – often the healthcare professionals who spend the most time with rheumatoid arthritis patients. Nurses from 73 out of 143 rheumatology units in acute trusts responded.
The nurses did not hold back in their views. Overall, 73% rated their unit’s psychological support as ‘inadequate’ and only 4% rated it as ‘good’. Only 8% of the nurses who responded had a psychologist in their team, and most units (68%) did not routinely screen patients to identify psychological difficulties.
The main reasons for the lack of psychological support were a lack of clinical time and available training (86% and 74%) and the costs of delivering the provision (74%).
Need for a big shake-up in the system
As a result of the findings of both studies, Dr Dures says there now needs to be a big shake-up in the system to address the training needs of clinicians and their teams, and to understand the needs of patients.
Dr Dures undertook the research because she was aware of a number of European and US guidelines, as well as guidelines from the National Institute of Care Excellence (NICE) and the British Society of Rheumatology, which state that people with rheumatoid arthritis should have access to services including relaxation, stress-management and cognitive coping skills to help them adjust to living with their condition. As with many well-meaning guidelines, they are clearly more aspirational than actual and are neither being adhered to nor enforced.
However, Dr Dures says that things are changing – from both top down and bottom up.
A coalition of charities working on behalf of people with long-term conditions, including Arthritis Research UK, is now urging national policy-makers and clinical commissioning groups to provide access to services such as counselling and self-management. As inflammatory arthritis is still largely treated and managed in hospital, the rheumatology team is best placed to provide such support.
“The recognition that service provision has to change is becoming something of a movement, and it’s an NHS priority across a number of long-term conditions,” she adds.
“There’s a lot of work going on to identify what the barriers are, and how to do something about it, including my own work. Part of our role is to bring attention to the issue and to build an evidence base, and our research is the first step in matching recommendations to practice. We’ll now focus on supporting teams to acquire the skills and resources need to provide the sort of support patients have told us they need.”
Doctors need to be alert to the signs that a patient is struggling
Alice Peterson welcomes what she describes as a ‘fantastic’ research project by Emma Dures. “I used to dismiss stress and anxiety as having an impact on rheumatoid arthritis but it’s so evident that it does,” she says.
“While it’s up to us as individuals to deal with that side of the condition as much as we can, doctors need to be alert to the signs that a patient is struggling. Some people would be happy to talk to a nurse when they have their hospital appointments; others need more focused support, initially on a regular basis. I had counselling for many years during and after Bristol and it helped me very much.”
Over the years one of the ways Alice has coped with her condition has been through her writing. Her first book, A Will To Win, was about how she was diagnosed and finally came to terms with the condition that put an end to a promising career as a talented teenage tennis player. Reissued a few years later as Another Alice in 2009, it allowed her to put down in words her anger, pain and grief, and the positive reaction to the book from fellow sufferers gave her enormous comfort and reassurance that she was not alone.
A professional writer with a string of bestsellers behind her (one of her novels, Monday to Friday Man, knocked Fifty Shades of Grey off the top of the Kindle charts), Alice adds: “Writing gives me a sense of identity outside of rheumatoid arthritis, and gives me a sense of achievement. My first book was like writing a diary. I passionately wanted to raise awareness of how rheumatoid arthritis isn’t just an ache and odd pain; it turns lives upside down. It was painful at times, but I loved the creative side and I also gained huge strength reliving my tennis days, which I’ve come to realise gave me the determination to fight. I’ve moved on, but writing is still a source of support for me.”