Sir, – Frank Kalman has written (February 4th) in response to Elaine Keogh's courageous article "Hopes for sick children who go abroad may be 'unrealistic'" (Health, August 20th, 2014). The reference to the response rate of relapsed neuroblastoma ignores the context in the original article, which refers to "high-risk" neuroblastoma that has relapsed rather than relapsed neuroblastoma in general. However, it's important to point out that the message of the article is not in any way about numbers.
It’s about relationships between families, the wider community and health professionals, and the truly holistic considerations of sending a child abroad for treatment. It’s about the psycho-social impact on and potential harm to patients and families – perhaps split apart by the logistics – and the stress of caring for a sick child far from supports and the caveat as to the motivations of those that may promise (or even be merely interpreted as promising) a miracle.
If a layperson were to attend the average basic cancer biology conference, within a day they would believe that cancer could be cured next week. The sad case is that many of the most promising leads in treatment will remain just that, rather than “real-world cures”.
As a former member of the team, I know that Crumlin hospital, which takes part in many clinical trials, can offer the most promising treatments given in the spirit of hope and advancement of medical science.
While nobody could blame parents for searching for the slightest hope in dire situations – and it is true that parents should indeed be proactive and “fight” as their child’s advocate – this process should not be seen as a conflict between doctor and parent but rather a dialogue; and surely one in which honesty is key.
It is marvellous that Mr Kalman’s daughter’s story is one of success. Fundraising can have a positive impact on multiple domains. Finally I should point out that while I have worked with the doctors whose opinions were expressed in the article, I write this letter independently and my views are my own. – Yours, etc,
Dr NEIL BARRETT
Cambridge Institute
for Medical Research,
Cambridge.