According to a recent survey carried out on behalf of the Arthritis Research Campaign (arc), 50 percent of people with arthritis questioned found that pain was the worst aspect of their condition.
Despite the raft of painkillers, non-steroidals, TENS machines and steroid injections available to them, many people with arthritis or more ill-defined forms of chronic joint disorders are still unable to find relief from pain, which can range from tingling to dull aching to full-on throbbing agony.
Until fairly recently, these people have had to grit their teeth and bear their pain, and traditionally received fairly short shrift from the medical profession. They become known as “heart sink” patients by GPs who have suggested everything from physiotherapy to strong drugs and even surgery but to no avail, and simply don’t know what to offer them next.
One of the big problems with pain is that it is now recognized to have a strong psychological as well as physical element. Chronic pain can persist even when the original cause of the problem has long cleared up. Fibromyalgia, for example, has no identified physiological origin at all, yet sufferers’ pain is as real and valid as that of someone with a broken leg. The pain may be generated from abnormal signals in the nervous system and the brain. But vast swathes of the medical profession still don’t see it that way.
“Doctors can cause patients unnecessary stress by taking this old-fashioned view,” says Toby Newton-John, clinical psychologist at the COPE pain management program, part of the University College London’s chronic pain management clinic, in Queen’s Square in central London.
“If you are really hurting, and someone tells you are making it up, enormous damage can be done. The medical profession is mainly male, and most chronic pain patients are female so they may be treated in a very patronizing manner, as though they are attention seekers.”
Over the past few years pain has begun to be taken more seriously by the medical profession. There are more than 70 pain clinics in the UK, varying enormously from single anesthetist carrying out nerve blocks and other injections to full-scale multi-disciplinary teams including a clinical psychologist, a physiotherapist, nurse, and occupational therapist, carrying out pain management programs. Among the most high profile are the Input unit at St Thomas’s Hospital in London and the centre at Hope Hospital in Salford.
The chronic pain management clinic at UCL was the second clinic of its type to be set up after Input about ten years ago. Consultant rheumatologist Dr Mike Shipley and consultant in pain management, Dr Andrew Baranowski head up the clinic, which is on two central London sites, and takes three very different types of approach to chronic pain.
“One of the aims is to try to stop what otherwise becomes an endless round of different departments for patients, having more and more tests and getting more and more frustrated and angry,” explains Dr Shipley.
“We take patients from London and the south east region, some of whom are labeled ‘difficult’ for whom it is thought nothing can be done,” adds colleague Dr Anisur Rahman. Typically, patients will have back pain, fibromyalgia, RSI (chronic work-related pain), complex regional pain syndrome or joint hypermobility.
Patients are assessed and treated with a range of therapies including drugs and injections. Dr Rahman says that the clinic can be a harrowing place. “A lot of our patients have a lot of problems, including social problems which we can’t really help them with. Sometimes I want to give people a new life. We can’t cure them but sometimes we can make them feel a bit better.”
In some patients, the pain can be localized to a particular nerve root or part of the spine. These patients can be referred on to anesthetists in Queen Square, who treat patients with nerve blocks, epidurals and opiates. Patients who are not suitable for those forms of treatment, or who do not respond to them, may be referred to the COPE pain management program run by Kate Ridout, Toby Newton-John and colleagues.
Getting onto this program requires a specific type of pro-active person and a particular mindset. By going on a pain management program the patient has to accept that their pain is not going to be cured, but that they will be offered help and support to manage it more effectively and to improve their quality of life.
“When I refer people to the program I have to tell them that it is not medical, but is about dealing with the pain psychologically and through self-reliance,” says Dr Rahman. “They sometimes find this hard to deal with, since they feel that others will infer that their pain is not serious, or that it’s “all in their mind”. We have to reassure them that we are not handing them over to the psychologists because they are mad, but that pain has psychological aspects as well as physical.”
“The average length of time that people have had pain before they get onto the program is eight or nine years, so by then the pain has become a dominant part of their life,” adds Toby Newton-John. ” We spend a lot of time reassuring patients that we believe in the reality of their pain and that they aren’t mad. ”
During the eight-week outpatient program patients work in a group on a variety of activities. They learn how to stretch and move their bodies properly – getting over the fear that exercise and activity will damage their joints and muscles – and undergo physiotherapy. They have one education session about pain with Dr Rahman, and also learn to pace themselves and their activities without overdoing it. The psychologists deal with the emotional side of chronic pain, and how to deal with negative emotions. They are also encouraged to take fewer painkillers.
They return after three, six and 12 months for assessment, and after 12 months around 50 percent of patients will have made what Toby Newton-John describes as a significant improvement. Unsurprisingly those who have adhered most rigorously to the program do the best, irrespective or age or level of pain. “The success of the program is very much down to individual perseverance, with the support of the clinical team and the individual’s relatives and carers to give them the right boosts,” adds Toby.
Celia Cockburn is one of the patients who persevered with the program, and got results. Celia, a former self-confessed workaholic and full-time disabilities coordinator at King’s College London, has suffered from severe repetitive strain injury since 1992.
After a particularly busy time at work she developed acute pains in both her forearms. Celia describes her pain thus: “It’s the sort of pain that wakes you up at night, it feel like electric shocks up your arms. Most of the time it’s like dull toothache, but it’s there all time.”
Her GP diagnosed RSI immediately, but despite various types of treatment from steroid injections to physiotherapy, acupuncture and having months off work, the agonizing pain continued to dominate her life.
Finally she was referred to Dr Rahman, who recommended that she tried the pain management program. The program, she says, surpassed her expectations. Her group gelled straight away; she learned to pace her activities; and to confront her inability to say no to people’s demands.
“I’m still a workaholic, but a workaholic who enjoys having two days off a week,” she says. “The program has made a huge difference. It wouldn’t work for everyone because you have to be willing to work for it, and it’s not easy.” She still has pain, but it’s manageable. “I know I will never be pain-free, and I’ve accepted that. It’s not so much that the pain has changed, but I have changed,” she adds.
Toby Newton John and his colleagues have little doubt of the value of pain clinics and pain management programs. “They ’re very cost-effective and don’t involve lots of high-tech equipment, and at the end of the day they prevent the need for people going to their GP, ending up at A and E and taking vast amounts of medication,” says Toby. “Patients are happier, the NHS is happier, and it’s just common sense.”
“All doctors find chronic pain difficult to treat,” adds Anisur Rahman. “But we’re fortunate enough to have a range of treatment options available to us, and to work with colleagues who have experience with chronic pain – and this is what makes out service worthwhile.”