Your next consultant appointment
Through our Peer Navigator line I get many calls from people who have had a new diagnosis confirmed and are waiting for more information about treatment options and next steps. A stressful time for many as you are left to grapple with lots of unanswered questions.
What’s worse, is many callers say that even after they are able to meet with their consultant, they are being told what needs to happen with little say or understanding of what is being planned for their treatment.
My first treatment decision
My experience with my brain injury three years ago was very different. At the time of admission at King’s College Hospital, my condition as well as the treatment options available were clearly explained.
In order for me to make a choice about treatment, I was supported to understand my options and given the statistics on survival and risk. I always felt that the decision about my treatment was in my hands. Brain injury notwithstanding, I felt very lucky indeed. It was a case study of what good shared-decision making should look like.
It was like a case study of what good shared-decision making should look like.
However, even with the most supportive doctors the decision about treatment can be very difficult. Recently, a scan of mine has shown some complications and so I had to once again meet my consultants to understand what was going on and what my treatment options were. Consultants, who I have now known for three years and trust implicitly.
While the doctors were the same, several things were different this time around; the condition was not as common and so there were no clear statistics that could be given to me, and the outcomes of the two treatment options were also uncertain.
We have to deal with grey areas here.
‘We have to deal with grey areas here’, is something I was told repeatedly. The risk of having no treatment, and the possibility of the condition worsening, could also not be quantified.
Most difficult of all was that the appointment was over the phone. The expectation of good communication on such a difficult issue can be made over the phone is unfair, both to the patient and the doctor.
I heard from the two consultants in two different calls and did not understand much of what was said. Based on these calls I was to decide on a course of action. Eventually I did decide on having surgery, but shortly after deciding I was grappling with uncertainty and was questioning if I had made the right choice.
As I said to a colleague at work, surgeries are like marriages — on the day of the event you need to be sure it’s the right thing. Later on, really, who can tell?
Utilise that one hour appointment
When I recalled parts of my discussion with the consultants it became clear to me that I had not been ready for my appointment. A strange mix of hope and denial led me to be unprepared for this unfavourable outcome, and I did not have the right questions for my doctors.
I cancelled the date of my surgery and this time requested a face-to-face meeting with both consultants. This appointment has now happened and while surgery is still my way forward, I am much clearer on why, and I am satisfied with my decision. Hindsight is 20/20 and some things I now know that can help are:
- Being candid about anxieties and sharing them can be helpful in enlisting people’s support. In my call with the consultant’s secretary I explained how much stress the surgery was causing me, especially as I was not sure if I needed it. She was really understanding, assured me, and helped me figure how to go about getting a new appointment to discuss my options.
- Write everything down. Once you write down your questions it’s often easy to see if some fall into groups. For example questions about; your current health status, risks of each treatment option, and post-operation recovery times. Grouping them helps to make sure that during the conversation you are not moving back and forth on topics.
- Reframe your question if you can’t get an answer. Often the most crucial question for me is — will I be ok after this treatment or not? And that is the one question that doctors do not like to answer. On a rational level I know why, no one can 100% predict an outcome. But as a patient I do want to know this. Instead you can ask, how many people in the hospital have this procedure, and how many have successful outcomes? I’ve found this line of questions leads to getting more concrete answers.
- Be ready to lead the discussion if you have asked for the meeting. In my appointment that is what happened and I was ready, thoughts organised and questions grouped. I also started by summarising my understanding of mycondition so that we were all on the same page right from the start.
- Explore all the options. During the initial part of the conversation it became clear to me that surgery was the most prudent option for me. However, I was keen to get a view on an alternative approach of no surgery and instead monitoring my condition. I did ask that question, even though after twenty minutes of discussion on why surgery was needed, it felt uncomfortable to ask that. It may have agitated my consultant a bit, I think, but we tided over it with a joke and he did answer my question. I was happy to fully understand all my options, if only to eliminate them. To me better clarity means better sleep at night. So don’t hesitate to ask what’s on your mind.
To me better clarity means better sleep at night. So don’t hesitate to ask what’s on your mind.
At a conference I attended on self-management of long-term conditions, Sara Riggare (a patient leader and researcher) said that to manage her Parkinson’s she spends 1 hour in neurological healthcare, and 8765 hours in self-care, per year.
If we only get 1 hour a year to talk to our specialist doctors, it’s best to be prepared to help ensure you get the answers you need.
If you need help ahead of an upcoming appointment and you’re not sure where to start, reach out and hopefully I can help you get prepared for a better meeting.