The story is apparently that
“GPs are failing to identify conditions such as osteoporosis, heart disease and bowel trouble that can affect patients’ lives for years after they have become free of tumours, claims one of the UK’s leading cancer experts.
“The problem is so common that as many as 250,000 people who have survived cancer have had symptoms of such illnesses not picked up by their GP, Professor Jane Maher, the medical director of Macmillan Cancer Support, told the Guardian.
GPs’ lack of knowledge about cancer, and poor communication between hospital specialists and family doctors, meant signs of cancer treatment side-effects went undetected and caused patients pain, misery and discomfort, said Maher.”
I was disquieted by this. I am GP. Long term consequences of cancer treatments are well known and, in a strange way, a success story – people are now expected to live for decades after many cancers. Side effects have more time to become apparent. What was the evidence for her concerns?
I emailed Macmillan Cancer Support, who Maher was speaking on behalf of, late on Sunday 25th September. I had no reply by midday on the 26th, and phoned them, when I was told that my email was being dealt with. After another couple of emails I was sent this:
“If you look at the document (survivorship vision document) you will see that the statistic comes from J Armes et al paper entitled “Patients supportive care needs beyond the end of treatment: a prospective and longitudinal survey”, Journal of clinical oncology 27: 6172-6179 2009.”
This paper though, doesn’t actually back up the claims made in the Guardian piece. It’s conclusion is that
“Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources”.
So most patients, after a cancer diagnosis, don’t have any unfulfilled healthcare needs. Some patients after cancer diagnoses do, which are mainly psychological needs; and these needs were recorded 6 months after diagnosis, when patients would normally have been under the care of an oncology team.
After some tweets involving @MikeHobday of Macmillan, @EvidenceMatters and @Dr_Aust_PhD, the press office at Macmillan arranged for Professor Jane Maher to phone me.
She told me that Macmillan have routine meetings with journalists including Denis Campbell of the Guardian. She said that his ‘angle’ at the start of their meeting was that GPs don’t care well for cancer patients. She said that she wanted to impress on him that she felt the problem was with record keeping and information sharing between oncologists and primary care, with oncologists not giving adequate information to GPs. I said that I didn’t see the evidence for the claims that were made on the Macmillan or National Cancer Survivorship Registry. She did say that there was evidence not yet in the public domain but in press which would support her argument.
Bottom line: I don’t think that cancer charities serve patients or doctors well when they use journalists to disseminate opinions about the quality, or not, of general practice care. If claims are going to be made based on ‘research’ within the public domain, then that research should be made freely and openly available. Cancer charities should also consider the adverse effects of their publicity, for example, GPs may become demoralised, or stop listening to future information Macmillan put out. This may also have impacts on the way patients interact with doctors, and this may be impacts for the worst.