The sad case of Alice Atkins – a true story
Reproduced from Issue 109 of Arthritis Today
Peter Bradburn
Researcher Peter Bradburn, of the Epidemiology Unit in Manchester, argues that lessons must learnt from this disturbing, yet all-too common story.
Alice Atkins (not her real name) is a 57-year-old woman, who, for the last ten years, has suffered from severe rheumatoid arthritis. She has never been referred to a consultant rheumatologist, nor received equivalent treatment from her GP. Yet she believes that she has had the best possible medical treatment and nothing further could have been done. Had she received optimal management including disease modifying drugs, then much of the pain, stiffness and swelling of the joints that she endured during those years could have been prevented, and the damage to her joints reduced.
Mrs Atkins lives with her husband, a former manual labourer, in a three-bedroom ground floor flat in an impoverished area of central London.
Her arthritis came on suddenly. Waking up one day she noticed that her fingers were stiff and remained so all morning. This continued to happen, and she visited her GP who advised her to move the fingers, and the stiffness would go away. She was told that if the stiffness persisted for a few months she would be treated. The stiffness in the fingers did not go away and gradually other joints became stiff and painful, most marked in the morning but occasionally persisting all day. A year later she had a fall and both knees became very sore and swollen. Over the next several years the joints gradually deteriorated with increasing pain, stiffness, and swelling.
Looking
back, Mrs Atkins cannot recall exactly when she was prescribed medication
for arthritis, though she was prescribed the non-steroidal anti-inflammatory
drug diclofenac which, because it caused stomach pain, she stopped
taking. Subsequently her only treatment for joint pain has been
paracetamol.
After several years, by which time her hands were grossly deformed, she remembers the GP suggesting that her symptoms were not due to rheumatoid arthritis because her 'fingers have always been like that, haven't they'.
I came across Mrs Atkins as a consequence of a media based recruitment campaign seeking individuals with rheumatoid arthritis to volunteer for a research study. During the interview, I found Mrs Atkins to be a thin, quietly spoken lady, with gaunt features who looked older than her 57 years. On the day of my visit, she described to me her stiff, painful joints. She said that she often felt tired and sometimes did not feel like eating, and that the simplest tasks required a lot of effort. She did not complain of depression and gave the impression of passively accepting her condition.
An examination of the joints revealed some serious deformities caused by rheumatoid arthritis. In particular, the hands were affected, and joint damage to both wrists caused limited mobility. Nor was she able to fully straighten her left elbow, and her shoulders were painful on movement. She could not straighten her knees, and the ankles were swollen and tender. The loss of mobility due to joint swelling and deformity had led to muscle wastage in all of her limbs.
Mrs Atkins' husband helps her with most activities. He is able to get her in and out of the bath, helps her with dressing and does the housework, the cooking and cuts up her food. Mrs Atkins has a wheelchair and with her husband pushing, is able to venture outside and go shopping. They are able to maintain their independence through the use of aids that have been provided by the local hospital. She receives the Disability Living Allowance.
Although there is no cure for rheumatoid arthritis, there is an arsenal of disease modifying drugs that have been shown to be effective in reducing the pain, stiffness and swelling of the joints. Furthermore, the medication is able to slow down the damage to the joints and limit long term deformity.
Clinical trials have shown that for the drugs to be most effective, then they need to be taken within the first few months of starting with the disease. Studies also show that the earlier the medication is given, then the more likely it will be tolerated. It is vital that people with the classic signs of early rheumatoid arthritis are referred quickly to a rheumatologist.
Even at this late stage, it is obvious that Mrs Atkins would benefit from being referred to the hospital, because in addition to the rheumatologist, there are many other health services that could help. Surgery to replace her badly affected left knee joint, coupled with physiotherapy to strengthen the surrounding muscles, would greatly improve the function of that leg. Physiotherapy alone could result in the right leg regaining full extension. With such treatment her mobility would be greatly improved and she would be less reliant on the use of a wheelchair. An occupational therapist could provide her with more aids to living, and a podiatrist could provide her with specially built shoes that have support for fallen arches. The rheumatology nurse specialist could help monitor the patient, tell her what help is available, make her aware of potential problems with medication and give emotional support.
Although Mrs Atkins is the worst example of untreated arthritis in this study that I have seen, she is by no means unique, and I have met others. These examples beg an important question, that is, how many more people are there with rheumatoid arthritis that are not being referred by their GPs to see a rheumatologist?
It is interesting to speculate on the reasons why prompt proper treatment is not offered to people with rheumatoid arthritis. In the case of Mrs Atkins, it appears that her doctor did not recognise the condition. Other doctors are very slow to refer patients to a rheumatologist, doing so only when the patient has complained of debilitating symptoms for a considerable period of time. A few patients, such as Mrs Atkins, are not aware that they can be referred to see a hospital specialist.
Other people are certainly reluctant to seek help from a doctor, perhaps because of their fears concerning the side effects of the medication or because they do not realise that there is effective treatment for arthritis.
We need to encourage people to be treated quickly. The general public should be informed about the early symptoms of inflammatory joint disease. They should know that there are specialists who can give them medication to control the disease and that they will be well-monitored in rheumatology clinics.
Rheumatologists can be more active in educating general practitioners, so that they refer patients with rheumatoid disease more quickly, and some hospitals could speed up waiting times.
The public and all health workers need to know that there is effective treatment for inflammatory joint disease, that the earlier drug therapy is started then the better the outcome is, and that this treatment is provided in all rheumatology clinics.
