One of the most frequent posts on 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 in the last 5 years since my diagnosis of metastatic Neuroendocrine Cancer. 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 secondary care level, certain 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 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. Emotions directed at physicians range from ‘god-like adulation’ to offers of violence! If you only looked at forums, you would believe there are only a handful of NET Cancer specialists when in fact there are many more than this. The Carcinoid Cancer Foundation has the most up to date list of NET Cancer specialists – CLICK HERE. UK and non-USA lists may be out of date (as at 11 Feb 16) but I’ll work with CCF to update the UK section at least.
This is 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.
The top tips are:
- Know your own communication style and preference for informing and being informed. This is an interesting point which I hadn’t really thought about. That said, some of the response to this tip can be addressed in some of the other tips. I guess in hindsight, asking my doctors not to hide stuff and to just “hit me with it” is an indication that I had set my preferences early on. I wanted to know the real problems I was facing. Additionally, my Oncologist knows I like copies of all tests and reports and he obliges.
- Think about how you prefer to hear important health information such as the results of a biopsy or a scan and then convey that to your doctor or nurse. I think this is partly addressed above. I see my MDT face to face every 6 months but if it is for bad news, I would certainly like some notice in order that I can be accompanied by my wife. I don’t think I’ve made that clear enough so an action for me here.
- Prioritize your concerns, if you present your doctor with a very long list of questions or symptoms at the very end of the visit, it’s quite likely that you will both end up frustrated. I have experienced this issue many times but gradually I’ve learned how to improve this form of communication. It’s easy to forget your physician has other patients and only has a finite time to spend on your case. I now send my Oncologist a summary email with my top 3 or 4 concerns and I do this around 2 months prior to each appointment. I also take the opportunity to remind him about which tests are due prior to our meeting. I copy in the specialist nurse. This not only gives them some time to read but also prevents the scenario above. It’s starting to work better.
- Make your needs known, doctors and nurses cannot read your mind. This is an absolutely key tip as far as I’m concerned. I believe the patient is the most underused person in healthcare. Patients have a part to play in their own diagnosis phase and this continues all the way through to ongoing treatment. Patients must have a voice and patients must use this voice to describe what’s going wrong with their body and what’s troubling their mind. Doctors and nurses cannot read your mind but they must listen to your voice.
- Trust the clinicians involved in your care and think of them as partners. I think all clinicians want us to trust them after all they’ve done the 10 years training and we have not! However, with less than common conditions, I suspect patients probably need to be wary and advocate more. I think of myself as a partner (part of the MDT for the period of my consultation) and so by default, I already think this way.
- Beware of the common trap of thinking in terms of all or nothing or rushing to conclusions. This is an interesting one for incurable but treatable cancers. I think with incurable Neuroendocrine Cancer, you need to be prepared for a long haul and the occasional bump along the windy road. Services and inspections will need to be done and tyres will need to be changed. It’s not a perfect journey and don’t trust the SatNav!
- Share the burden of not knowing how things will ultimately work out. This is a difficult one and I suspect each person will have their own concerns and their own way of dealing with it. I’m thinking this might be more important for younger patients who have young families to look after. I’m a ‘glass half full’ person so it’s an awkward one for me. I guess as I’m feeling confident I’m not leaving anytime soon, it’s something still stuck in the back of my mind.
- Find ways of being at ease, even during frightening or turbulent situations. Easier said than done! Again, we all have different ways of dealing with our situations but I do believe if you have addressed all the tips above, this should make it easier. I also think that learning a lot more about your disease really helps to communicate about it better.
I often have a little chuckle when I read a post where a patient has ‘fired’ their doctor but I guess if you are paying out of your own pocket, it can be an apt word to use! However, as a Brit, this does tend to raise at least one of my eyebrows (a la James Bond 🙂 )
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.
Thanks for reading
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