One of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it…..). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I’m a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.
However, people with less common conditions can perhaps be more difficult to satisfy. A ‘generalist’ doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at the secondary care level, many less common conditions still need dedicated specialists, and these services may not be located at every hospital. Clearly, with Neuroendocrine Cancer, the optimum scenario is to be treated at a NET specialist centre or at least be overseen by them. However, these can be thin on the ground, and/or the medical system in place is not able to provide access to these experts. Geography may also be playing a part in causing further anxiety and this is not helpful if you are already fighting cancer. Communications and relationships between patients and doctors can therefore be more difficult even with the right diagnosis.
I see so many issues on forums ranging from people who are simply looking for a specialist to people who still don’t think they got the right treatment from the specialist they eventually found. I’ve seen emotions directed at physicians ranging from ‘god-like adulation’ to being fired! If you only looked at forums, you would believe there are only a handful of Neuroendocrine Cancer specialists, when in fact there are many. Check out the most up-to-date lists inside this article – click here.
I know from talking to other patients that some have not had the ideal experience with their doctor(s). Even those who found a NET specialist report the odd issue and feelings of unhappiness. I never cite these issues publicly, in particular the hospital or the doctor, because for every one of these stories, you can find dozens of good patient experiences with the same hospital and doctor. I also banned direct naming and shaming in my own private support group for that very purpose.
It’s a really complex area and it can be compounded by the health system in place, but many things are common across the board. One of the reasons making it complex is that it can be about relationships and communication – both ways! Thus why I was interested to read an article by a physician who listed a number of tips for patients which I think are as relevant to Neuroendocrine Cancer as they are to other conditions (……in fact some more so!). Relationships and communication will not cure or reduce your cancer; or debulk your tumours – well not directly ….. but it can help along the way. And although the article appears to be written in a post-diagnosis context, some of it is also relevant to pre-diagnosis.
I’m often shocked to hear that people ‘fire’ their doctor, but I guess if you are paying out of your own pocket, it can be an apt word to use! Clearly, if the service you receive is not working to your expectations, then a move might be beneficial for both parties. It’s a big decision though and for those who have moved on, I sincerely hope the grass has been greener on the other side. I very much suspect it wasn’t for some who made the jump over the fence.
The original article can no longer be found on the internet, fortunately, I had already captured the 8 tip headings below adding my own commentary.
You may enjoy my article – Diagnosed with Neuroendocrine Cancer? – 10 Questions to ask your Doctor
And this one – 8 tips for conquering fear. 
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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