Monday, 25 January 2016

The Doctor - Patient Relationship: It's Complicated

A while ago, I struggled with doctors who knew little about my illnesses and couldn't cope with the complexities of it. I went through years of having terrible doctor-patient relationships, which had a direct negative impact on my health. This is where I learned about the importance of the doctor-patient relationship and how it can directly affect your health.

A few years ago, my specialist wanted to investigate the cause of the mysterious stomach pain I'd been suffering with for ages. He asked my GP to organise an ultrasound locally, to save me the 120 mile journey to the lupus unit in London. I had to fight with the GP to get this, because she didn't feel that it was necessary. Nor did she want to do the regular BP and pulse checks (due to my consistently low blood pressure and fast pulse rate) that my specialist had requested. I had another fight with the GP to get the regular urine tests, as requested by my specialist (to check for proteinuria).

I eventually got the ultrasound and a very large cyst was discovered on an ovary. The cyst would go away on it's own, the GP said; and then ordered a blood test to check for ovarian cancer, which scared the crap out of me. She did not explain why she was doing this, and she dismissed my concerns; her attitude seemed to say "I'm the doctor, you're the patient, be quiet and do as I say."

There was a ping-pong between the specialist and GP for a while, about who was responsible for which aspect of my care. As another example, I asked the GP for a referral to a gastroenterologist, which my specialist requested. But the GP refused, because she thought that it was a lupus problem and therefore, not her problem. I kept going round in circles like this for years; with both specialist and GP struggling to agree who was responsible for my health problems. It was exhausting.

In another example of a bad doctor-patient relationship, my specialist also had problems with another former GP of mine. He asked the GP to prescribe me mycophenolate (CellCept), so that I would not have to travel to London every three months for refills. But the GP refused because his BNF book said that it is only licensed for transplant patients (an anti-rejection drug that suppresses the immune system), and not for lupus. But it is actually common practice to prescribe off-label drugs in this country and despite the NHS saying they would fund my drug, the GP still refused, saying, "the doctors here, myself included, do not want this responsibility." He was equally stubborn about prescribing cholecalciferol for my severe vitamin D deficiency, saying "Everyone has a vitamin D deficiency in this country."


GPs often struggle to deal with lupus and other autoimmune disorders, due to the complex range of symptoms they produce, and because lupus can attack any part of the body. There are often conflicts between GPs and specialists about who is responsible for which problem. 

It became clear to me that establishing a good doctor-patient relationship is essential for our health. Trust is an essential part of a good doctor-patient relationship. I find it difficult to trust doctors because of my previous experiences. Without trust, effective communication between the doctor and patient cannot exist. Miscommunication can have a drastic impact on your health. 

The Lupus Alliance says, "A basic plan can help you communicate better with your doctor whether you are continuing with the doctor you`ve been visiting, or starting with a new doctor." 

They suggest the following:
  • Be prepared. Take a list of questions with you. This will help you be sure to remember what you wanted to ask between visits, without wasting the doctor’s time and yours while you try to remember all of your concerns. Doctor`s appreciate when you do come in with questions written down, it not only helps them treat you, but it shows them that you want to take an active roll in your treatment.
  • Consider bringing a family member or friend with you to help be your advocate. This is especially helpful if you are nervous around doctors, in too much pain to articulate your concerns, or if you have memory or cognitive problems.
  • Keep a diary of symptoms, problems, side effects and more, that you can show your doctor at each visit. Visits with a Rheumatologist who is treating you for lupus are usually at least one month apart and a lot can happen to you in one month; making it difficult for you to remember them all once you are at your visit. Writing it down helps your doctor know what may or may not be working, and if and what new tests may be needed.
  • Be honest when your doctor asks questions. Remember nothing you tell your doctor is insignificant when it comes to a disease like lupus, even if you think it probably isn’t important, or necessary to tell the doctor, tell them anyway and let them decide.
  • Be sure to stick to the facts. What symptoms you had, when you had them, were they right after taking medications, were they after strenuous activity etc. These details can help a doctor decide if it is something they need to look into and how.
  • Take notes at your visits so you don`t forget instructions, or possible side effects to look out for etc.

As the Lupus Alliance says, "an informed patient is an empowered patient...An important part of good health care is a good working relationship between you and your doctor. You must be able to communicate well with each other so your needs are met."

For the rest of this article and more excellent tips, please check out the rest of it:

1 comment:

  1. I hear you. Sometimes it feels as if my primary relationship is with my doctor.


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