Trust, the definition is:
Firm belief in the reliability, truth, ability, or strength of someone or something.
This belief is something required if you’re diagnosed with epilepsy. There are different variations of trust, the type I am referring to occurs when you have no choice about it. It is therefore often built upon fear, vulnerability, desperation and a sense of helplessness. It is exposing yourself, putting a trust which you have no control over in family, friends and work colleagues. Their response to your diagnosis will determine how you feel about your epilepsy and more importantly the opinion you have of yourself. A complete trust is also needed in your neurologist. So what happens if you lose that trust and faith?
I always feel very grateful for the neurologists I have worked with along the way. I have absolutely no complaints and have been treated with nothing but the utmost respect and kindness. My faith in their abilities and the openness which has been shown to me has been nothing short of exceptional.
Sadly, I have heard from time to time people vocalizing their lack of confidence in their doctor. There is the requirement from the neurologist to assure their patients and make them feel safe and that they are receiving the best care. Being a family member with a child, a grandchild or even if it is oneself; there is complete reliance on medical experts to treat the condition. So I really feel for those that don’t have that positive experience.
My one and only negative experience with a neurologist was in England. As a paediatric patient it was wonderful because my mum would come along. She was the source of information, she knew the time line for seizures, the encephalitis etc. so I would sit back and enjoy the ride simply answering the questions about the seizures – easy peasy! However, I realized as a young adult that as much as I didn’t want to, I had to face the reality that I needed to take responsibility for my epilepsy and appointments by myself. At that stage I was striving to get a transfer to Guy’s Hospital where I had been seen as a child and I needed a referral from a local hospital in order to do this.
On the day of my appointment plucking up my courage and making sure I had all the information necessary, I set off to to claim my transfer. In the waiting room I nervously sat anticipating my name being called. Eventually, I went in to the consulting room where the doctor and a woman, who I assumed to be his secretary, was taking notes. As I explained the background as to why I was here and what I required, the doctor’s response was that he could treat me there. I politely reaffirmed my reason for being there to which he leaned in and said “What do you mean you don’t want me to treat you?” I began to wonder how many other ways there were to expain it; as I thought I had been quite specific! I continued to explain about my communication with the epilepsy association and the recommendation I had received from them for Guy’s Hospital in a bid to give a little more background. This seemed only to fuel the fire and the man simply exploded! He threw his pen on the desk, shut my file, leaned back and said, “I take that as a great insult”. Leaning forward he said “You want to go above me; there is no one above me. I’m a neurologist which means I’m the same level as any other neurologist in London that you will go to see. I’ve never been so deeply insulted and I take offence to what you’ve just said.” That response I was totally unprepared for and the situation really didn’t improve from thereon! I explained that I had made this appointment as I wasn’t sure what to do next to achieve my goal of being under Guy’s Hospital as I had not been successful in finding people who were able to help. He said quietly but loud enough for me to hear, “No wonder Dr. Wan didn’t take to you with an attitude like that”.
I left feeling upset, stressed but more than anything else angry. I’d like to think that these are unusual circumstances that very few people encounter unless of course they happen to go to the same doctor as I did asking for a referral!
The purpose of sharing this is to convey whatever your reason for being unhappy don’t lose hope or give up. Sometimes it is trial and error to find a consultant that you trust and feel satisfied with. I persevered and got to where I needed to be bagging a wonderful neurologist. There are many caring, experienced and knowledegeable doctors available so just make sure you don’t settle for second best!