I can’t remember a time when people working in health were told ‘Go and spend as much as you like to help people get well’ – in fact, in over 20 years I can only recall being told ‘there is less money in the kitty, we need to look for efficiencies, tighten your belts’!
So it’s no surprise to me that once again, no matter where you look in the world, health professionals are being told to look at ways to be more efficient. I don’t have a problem with this – if I’m a patient I want to know I can be treated quickly and effectively so I can get back to being a person and not a patient. What I do have a problem with is when, in the urgency to save money, problems in health care are given a quick fix solution without taking a look at the systems in which the services are being delivered.
With a chronic health problem, the main problem is that patients don’t get cured. This means that once a person has been seen for treatment, it’s highly likely they’ll return – so along with new referrals to a service, there is a steady stream of people being re-referred, and what isn’t entirely clear is why they might need to be seen again.
Let’s take a look at why people are referred initially to pain management – and what they expect. Allcock, Elkan & Williams explored, using focus groups, the beliefs, expectations and priorities of a group of patients referred for pain management. Like my brief study a couple of days ago, they found that the majority of patients were looking for a firm diagnosis and a cure. The patients they talked with believed there ‘must’ be a cause that could be found, that people around them wouldn’t believe that they had ‘real’ pain without being able to give a diagnosis, and that while they wanted pain killers at the same time they felt ‘just’ getting pain relief was ‘fobbing’ them off. People didn’t know what to expect from coming to a pain management centre, and their focus was on reducing their pain – even if they felt just getting pain relief wasn’t enough.
Looking at this from a ‘stages of change’ model, my guess is that most people are in a precontemplative stage with respect to accepting that their pain is chronic, and that self management is a good option. No wonder some people leave a centre feeling bitterly disappointed that the ’cause’ of their pain isn’t clear, and don’t fully accept the idea that self management is a positive option.
While the underlying pathology of chronic pain may change slightly over time, despite some advances in pharmacology, we don’t have an awful lot of medication options for many chronic pain conditions. Options for something like fibromyalgia are really limited. But ask someone with chronic pain if they ever stop hoping for ‘something, anything to reduce the pain’ and you’ll probably hear them say no!
Along with the hope for relief, there is a good deal of evidence in the literature that people who don’t feel they have a clear diagnosis, who are distressed or anxious about having pain, who expect that doctors ‘should’ be able to fix their pain, and many of those ‘yellow flags’ or psychosocial factors – these people tend to visit doctors more often than those who are more accepting of their pain.
Faced with a distressed and sometimes angry patient, a GP may well bow to pressure and want to start the process of referring for more investigations, another specialist opinion and yet another referral to pain management centre.
In one pain management centre I know quite well, up to 60% of the referrals received over a five month period were re-referrals of patients who had already been seen in the centre. What that means is that only 40% of the referrals were for new patients – and given a waiting list cap of six months, it’s inevitable that some people will be turned away.
Now for some hard questions.
Why are people being re-referred? Well, I actually don’t know in the case of this centre, information isn’t available. Maybe this group of patients are more distressed, more depressed, more anxious than the average patient – at least, that’s what the literature suggests. Maybe their health care providers are also more worried about pain, perhaps less confident to deal with people who are distressed. Maybe their health care providers believe, like their patients, that there ‘must’ be a cause and therefore a cure for the pain.
If these patients have been to pain management before, why haven’t they adopted the self management model? Maybe this is because they weren’t ready for it, or maybe the services they received weren’t effective (pain management lite, or low intensity pain management of less than 100 hours has been shown to have less effect than an intensive programme with an interdisciplinary team – according to Assoc. Prof. Mike Nicholas).
What is a tragedy is that many will be seen again and given another round of medications, perhaps they’ll get some more pain management – but without measuring the outcomes, we won’t know whether this is effective. And they may well be re-referred in another 12 months because (1) they haven’t developed a sense of their own ability to manage their pain (2) their GP isn’t confident to support their self management (3) they got a sense of relief from distress at being seen by a ‘specialist’ (4) their GP thinks there ‘must’ be another medication that hasn’t been tried yet (5) and rarely, this time they’ve shifted from wanting something or someone else to manage their pain, and now want to develop self management strategies.
OK, I don’t know whether those reasons are true, they’re a hunch. But what I do know is that the problem of re-referrals for a chronic condition clogs up health delivery, and that internationally a self management approach has the widest support for chronic conditions. And yet time and again, people with chronic pain actually receive passive treatments, medication reviews, and more injection procedures.
A study like the Lamb, Hansen, Lall et al., one I’ve cited below demonstrates that even a six session group-based CBT programme of self management, delivered by physiotherapists, nurses, psychologists and occupational therapists (no discrimination here!) could provide effective outcomes that last even up to 12 months after the intervention. In terms of efficiency (oh yes!) the CBT approach was more cost effective (cost per QALY) than acupuncture, exercise, manipulation, and postural approaches – all of which are supported in recent Clinical Guidelines in the UK and US. It’s only a pity that a comparison between this approach and medications or injections wasn’t made.
Are these patients like the patients referred to secondary or tertiary pain management? Taking a look at their disability level, the duration of their pain, working status and age/gender – yes. Is this an efficient way to help people cope with their chronic pain? It seems so – yet I wonder whether group-based CBT will survive in New Zealand.
Lamb, S., Hansen, Z., Lall, R., Castelnuovo, E., Withers, E., Nichols, V., Potter, R., & Underwood, M. (2010). Group cognitive behavioural treatment for low-back pain in primary care: a randomised controlled trial and cost-effectiveness analysis The Lancet, 375 (9718), 916-923 DOI: 10.1016/s0140-6736(09)62164-4
Allcock N, Elkan R, & Williams J (2007). Patients referred to a pain management clinic: beliefs, expectations and priorities. Journal of advanced nursing, 60 (3), 248-56 PMID: 17908123