With so many people experiencing long term pain and disability, you’d think health care providers (and funders) would be doing all they could to make sure referrals to specialist centres were made as early as possible – and yet it’s still just not happening. I took a brief look through the referrals to our tertiary pain management centre recently, and apart from finding that over half of the referrals were for people who had already been seen by us, the majority of the rest were for people with ongoing pain for more than 12 months. In fact, although I didn’t calculate it, the ‘average’ pain duration varied between 8-9 months and over 10 years, roughly 3 or 4 years being the modal time. That’s a long, long time for someone to be seeing doctors for treatment before being seen by an interdisciplinary team.
Why does it take so long?
Good question, and not one I think to which many clear answers are found. Maybe it’s reluctance on the part of the person being referred – chronic pain sounds horrible, and there are always mixed reviews from people who have been seen at Pain Management Centres. Sometimes the results are mixed, depending on what the person is looking for from a referral to us. If they’re wanting pain reduction or abolition, I guess they will be disappointed.
But I think more of the problems lie with the continuing emphasis on ‘finding a cure’, or the belief that chronic pain is only a symptom of ‘something else going on’. The search for that ‘something else’ to be treated takes people away from the focus on reducing the impact of the pain on function (ie disability) and fixates them on reducing the pain intensity alone. A positive outcome is confined to removing the pain rather than looking at reducing the effects of the pain on the person.
After some 20 years in pain management, I’d hoped that this view might have changed, and I suppose it has to a certain extent. There are not quite as many people attending with multiple surgeries, but instead we have people coming in with multiple injection interventions, on multiple medications, and STILL with a belief that pain equals something terrible is ‘making this happen’ that ‘must be removed’ before the person can start to get back into life.
Why is a delay such a problem?
Lots of reasons, but here are some that strike me off the top of my head:
- the emotional and social costs to people with pain from having daily activities limited by pain
- the time it takes to go to appoinments and the waste of resources being spent by the person and their family
- the multiple failed treatments and the effect this has on the person and their family
- the myriad diagnostic labels the person gets from the treatment providers – without necessarily hearing that their pain doesn’t equal harm
- the opportunity for the person to get trapped in a downward cycle of not doing much, then not feeling like doing much, then not being able to do much
- the cost to the health care system from repeated failed treatments
- the eventual cost to the health care system because interdisciplinary pain management often takes longer with someone who has had years of disability from their pain
- the financial and economic costs of pouring money into being ‘ambulances’ at the bottom of the cliff – job loss, family stress, other ill effects of not working, flow-on effect throughout the health system
The sad thing is, this long delay isn’t isolated to New Zealand. In fact, I’d say it happens right around the world and will continue until I’m long gone. It’ll take the medical model to be well and truly ditched in the case of chronic pain, it’ll take the negative stereotyping of mood and chronicity to be removed, it’ll need a huge investment in funding for chronic disability services, and it will take training for health care providers to know what to do and get the focus off the pain intensity and on to the disability from pain.
This paper from Bonezzi, Pitino, Allegri (2010) shows the same situation in Italy. Their analysis shows patients were an average age of 62 years, while the referrals to Pain Management Centre are more in the mid-40’s or 50’s. Their pain intensity rating was 7-8, pretty similar to those who are referred to us. And like our patients, they’d been to see numerous specialists who ‘did not focus on the pathogenesis of pain but only on the disease underlying it’.
Their parting comment strikes true here also: ‘a suboptimal approach to pain management in Italy not only relative to its correct treatment (too few and sometimes inappropriate drugs prescribed), but also because there are too many patients who do not have access to a specialist pain centre despite being in pain. This could also be one of the main reasons of the increase in health care costs related to pain treatment.’ Worth thinking about, isnt’ it.
Bonezzi, C., Pitino, E., & Allegri, M. (2009). Analysis of a population of patients who were referred to a second level pain center: Clinical and demographic characteristics European Journal of Pain Supplements, 3 (2), 17-20 DOI: 10.1016/j.eujps.2009.08.003