One of those moments when you wonder “what if I had done that…?”. What if, as I turned round from picking up my coffee at the conference reception and saw Sally Davies 10 yards away (the Dame Professor Sally Davies who is currently Chief Medical Officer) I had gone across to her and said “before your time, a previous CMO said that patients who wanted to know whether they had chronic Lyme could be definitively diagnosed by the HPA’s blood tests. This has been shown to be quite wrong but is still blighting the lives of patients. Can you do anything?”
Well, too late, we’ll never know, because someone else went up to her and the moment was lost.
Somewhere in a parallel universe. . . . . . .
The UK Cochrane Centre was holding a 21st anniversary symposium, and there were some very good talks. Including that from Sally Davies who said researchers must think about the outcomes that matter to patients and to practising clinicians. It is a pity she didn’t stay for the following day and hear Ben Goldacre lay into the Department of Health for pontificating in response to FOI requests that “there is a regulatory framework; it is impossible for medicines to be approved without proper procedure etc etc “ – when they must know that it is simply not true and manufacturers can wriggle their way out of any framework.
Now that the DH knows that it simply isn’t true that the HPA tests can “definitively diagnose” every case of chronic Lyme, will anything be said, or do we need a Ben Goldacre to turn things around? Well, time will tell as the world it is a-changing.
In the USA, it’s getting more dangerous by the minute as more and more people get sick; or think they get sick. The talk on “Overdiagnosis” by two Americans informed us that not only is March Brain Injury month, Colorectal Cancer Awareness month, DVT Awareness month (and several more), but this week is Root Canal Awareness week! Americans are being advised from every magazine, billboard and website, that although they feel perfectly well, they may not be. Apparently “If you have skin you are at risk of melanoma”!
Happily the NHS is not going to be exhorting us to come and have a free “scan of everything” to see if we have any “incidentalomas” which need operating on at great cost. However, neither is it, at the moment, offering us treatment for probable Lyme disease. How can anyone be surprised that patients get driven to the private sector which is bound to take their money for tests and treatment – valid or not valid.
So to answer the question posed by the symposium “How can Cochrane best support patients and practitioners in shared decision-making in the 21st century” I would say “by listening”. Listening to the patients who have documented that there are uncertainties in diagnosis and treatment of Lyme disease; and listening to the practitioners who say they found a longer, or repeated, course of treatment made a difference.
Engage with us and listen. There is a world of uncertainty out there, and sick people who need evidence to back up treatment to get their lives on track and their selves back to work and out of the NHS pillar-to-post system which should not be paying for all these multiple non-interventions and GP visits.