I thought about putting a warning at the start of this post, because if you’re enthusiastic, passionate, committed to good pain management, what I’m about to write may make you weep! It’s about systems and missed opportunities and the effect this has on patients. NB: this post is my personal opinion, does not reflect the opinions of my employers, children, partner, dog or cat. I am not referring to any specific centre or service, and nothing in this post should be construed as anything other than opinion (although I’ll happily provide facts on request).
Did you know that in New Zealand, one in six people has an arthritic or painful health condition? And that the financial costs are thought to be around NZ$2.5 billion, financial costs comprise health sector costs and indirect costs. This doesn’t include the dollar value placed on the burden of disease, or the years of healthy life lost, which is estimated to be NZ$2.56 billion. That’s a whole lot of money! (Figures drawn from Access Economics report for Arthritis New Zealand, prepared in 2005).
This estimate also doesn’t account for the additional costs of chronic pain from non-arthritic conditions, such as complex regional pain syndrome, chronic low back pain, abdominal pain, pelvic pain, non-cardiac chest pain and so on.
You’d think, well I would anyway, that with this sort of analysis showing the horrendous cost of these diseases that there would be a national strategy for managing pain, and that every New Zealand District Health Board would have a consistent and well-funded approach to address the needs of people with these disorders. I’m sorry, there is no such thing. When I reviewed the referrals to a pain management centre recently, the average duration of pain was between 2 and 5 years, and the majority of people were no longer working as a result of their pain.
What causes this sort of delay in referring people for pain management? I wish I could tell you.
What’s interesting is that even though the average pain duration is 2 – 5 years, half of those referrals were for people who had already been seen at that centre. An even greater tragedy? Some of the new referrals will be turned away because they will be waiting more than 6 months to be seen, while others will be accepted not because of the greater burden of disease, but because of their funding source. And clinicians are asked to overlook this discrepancy in serving the needs of people because that funding source provides income, but that income isn’t streamed back into that specific service (it goes into the general coffers).
Some curious things to ponder…
- Collecting information on who refers to pain management and what the referral characteristics are isn’t being done
- There doesn’t appear to be any review of the re-referrals – why are people who have been seen being referred again? What initiates a new referral?
- While there is a database of psychometric information on people being assessed, this isn’t being analysed except on an individual case-by-case basis
- The goals identified by people attending for comprehensive assessment are primarily around reducing or removing pain – but pain is often reduced by only a small amount
I could go on – the problem is, these issues are not new. In fact, they’ve been raised many times with managers.
I suppose I shouldn’t be disheartened. Pain management services are often the ‘Cinderella’ servicein health – everyone wants someone else to take care of these people, but no-one is very keen to admit that they haven’t been able to ‘cure’ the problem. And the costs of health care in this group are, as you can see, very high. But they’re hidden because these people are present in every service in every sector of health in every town and city – so the costs just look like part of doing health care.
If I had a wand, this is what I’d wish for:
- analysis of the pathways to pain management – from community to treatment facility and back again
- a systems approach to identifying these pathways and looking at ways to streamline access
- a stepped care approach starting in the community with a psychosocial risk factors intervention included in any biomedical input
- close integration of tertiary level treatment with primary level follow-up
- a forum for helping people with multiple diagnoses – problems managing pain is associated also with prescribed and nonprescribed drug use and abuse, mental health problems and work disability
- outcome measurement alongside careful collection and analysis of information about the people being referred so that services can be integrated and matched with need and the outcomes achieved
The thing is, pain management is often captured by people with a particular agenda. I don’t think it’s always about health care providers being greedy and wanting to make money, although I acknowledge there are some unscrupulous people doing just this. I do think it’s about dogma and believing that there is Only One Solution. I also think people can be very fearful of transparency – especially transparency in outcomes. There’s no doubt that pain management is complex, and that it can be really difficult to review the burgeoning literature on what works for whom and when. But this shouldn’t excuse poor science – it’s more of a reason for really good knowledge of science and learning to read the literature very, very carefully, and using data as the basis for decisions.
We also need to remember that pain is a political motivator. People in pain, and especially distressed people in pain, can capture the hearts and minds of those around them – especially the media. It’s not uncommon to see articles in the media about a person who has been denied some sort of service and learn about the incredible pain they’re in. Media-savvy patients can pull political strings very easily.
But managing pain is not a sexy political topic. It’s plain hard work, it’s often a slow process to systematically work through a series of treatment ‘experiments’ to establish the one that provides the most benefit with the least negative effect. And even when something is ‘successful’, it rarely completely abolishes pain, so people with chronic pain can feel disillusioned. Some get very angry when they find that there simply is no medication that ‘takes the pain away’ and that they will ultimately learn to ‘live with’ their pain. This is sad – it’s more sad when they don’t hear that there is a team of people who can help them learn to ‘live well with pain’. And even more sad if some of those treatment providers don’t use the scientifically established treatments that are known to have a good effect but instead prefer to use unsubstantiated treatments that rely on chi or similar woo.
Maybe I’m being pessimistic, but I see service fragmentation, no attention to outcome measurement, capture of various groups of patients by health professionals and limited transparency about what is being done and whether it works as a tragedy. As if it wasn’t bad enough to have a chronic pain problem, for some people, the ‘best’ treatment they get just doesn’t cut it. Surely we can do better than this.