How much can you trust health care?

This is a personal post for me. As a registered massage therapist in Ontario I count myself among regulated health professionals and I like to think we are an ethical and intelligent group.

As a wife navigating traumatic brain injury recovery I have been frustrated and disappointed by health care professionals again and again.

So here’s my thoughts – there are a lot of great health care professionals out there. There is a lot of new research and understanding about traumatic brain injuries and post concussion syndrome out there. Not every health care professional has an understanding of traumatic brain injuries and even those that claim to understand it may be working with outdated data (for example the old concept of “the brain only recovers for 1 year post injury” vs. the emerging data about neuroplasticity).

When you work with someone you need to trust them. Be honest about symptoms, be honest about what is within your ability to do and afford for treatments. And then you need to trust yourself to make the decision to switch treatments if something isn’t sitting right.

When a doctor called Jason a wimp for having symptoms 7 months post treatment? We left. When a naturopathic doctor suggested I should just look on the bright side and stop worrying about the severity of his symptoms? Fired. A personal trainer that wasn’t concerned her workouts were sending Jason back to bed for 2-3 hours? Gone.

But we found replacements for each of those important parts of Jason’s recovery that are more well versed in TBI. It might be more expensive paying first appointment fees again and again, but the financial cost is nothing compared to the successes he’s had with his new team and their ability to assess changes in his symptoms well. I encourage you to do the legwork to find a team that is great as often as possible and don’t let words from uninformed practitioners, even when they have all the credentials in the world, discourage you during your recovery.

Finding the right fit

We’ve shared our bad experiences. We shared some tips on how to sever ties with the bad doctors. We were lucky enough to get a fantastic doctor to take Jason on. Here are some indications you have a good doctor in regards to brain injuries

  • The doctor should be patient (no pun intended) as you describe symptoms. Good doctors will recognize how hard it is for you to remember and communicate and will view those as other symptoms not just you being difficult or flighty.
  • The doctor should be aware of the best practices involved with brain injury cases – time off work, referrals in your area etc
  • The doctor should be prepared to refer you out to a neurologist, neuropsychologist and able and willing to explain the results of those appointments when you see them next
  • Ideally a good doctor will be flexible if you’d like to try private treatments or supplements but you MUST be honest with your doctor about what you are involving in your recovery
  • Empathy and good listening routinely top surveys about what Canadians most want from their doctors – and it makes complete sense. You don’t need a doctor to sit and cry with you but you do want them to understand where you are coming from and take your complaints seriously.
  • A good doctor will ask about how symptoms are affecting your activities of daily living, social life, mood etc. They want you to be a healthy well rounded individual.
  • A good doctor will recognize that you may have flawed self awareness post concussion or brain injury and will ask what others say your symptoms are. Sometimes this distinction makes all the difference in the world in how you report symptoms.

Here is a great doctor (American) speaking about patient’s rights with doctors and indications of good doctors – I encourage you to watch or read the transcript.

When doctors fail (part 2)

Firing a doctor

In our last post, we shared the unfortunate experiences we had with Dr. D. In January we made the decision that we could not put up with his lack of care anymore but we couldn’t fire him out of anger. While we had to fight for referrals with Dr. D, we would have no referrals without him or another doctor lined up. Here’s how we navigated the system

  • The first suggestion by the physicians college and the ministry of health is to try to talk to your doctor about the disconnect you are feeling. I fully admit after the “move to work” comment we did not do this, in my opnion we had given Dr. D 6 months to shape up. I still understand why this is the first recommendation and if you feel like you have the ability to have this conversation please do. Continuity of care if usually helpful so if you can find a way to work with your doctor you should.
  • Don’t fire your doctor until you know someone else will take you on. Going to emerge and walk in clinics is a bad use of your time, more likely to cause problems if you are sensitive to noise etc and often won’t get you the referrals you need (it depends on how the doctor feels about your symptoms, medical and prescription history etc). If you are taking any narcotics for pain it’s really hard (impossible perhaps?) to get refills without a regular doctor.
  • If you feel that your doctor has been negligent you can file a complaint with the physicians college. We weren’t sure if our situation fit into this and frankly were too exhausted to worry about it.
  • If you have a good relationship with the support staff/office manager at your doctors clinic you can try writing a letter stating that you have lost trust in your doctor and would like to work with someone else and they may move your file to someone new. This would be extremely amazing but not always possible so don’t get upset with the staff if they aren’t able to make this call.
  • In Ontario, there aren’t that many doctors that don’t have full rosters so this may mean some asking for favours and begging but please don’t end up without any care. Ask for help from friends and family (yep, this is one time you can be THAT guy!).
  • If you do end up in emerge or a walk in and you think the doctor is a good fit for your case ask for their contact information in case you have any follow ups. Not every doctor will hand this out but it’s worth asking. Don’t try to get them to take you on when they are pressed for time in either of these environments, send them a brief thank you note and ask if they would be willing to take you on after the fact.

Tomorrow I’ll share some thoughts on how to know if a doctor is going to be a good fit for you. Make sure you are also being the best patient you can be and check out my thoughts on doctors appointments.

When doctors fail

We’ve alluded a few times to our unfortunate early experiences with doctors in Jason’s case. Originally he was taken to an excellent hospital in Toronto, and within a few hours from the attack they had identified the areas of bleeding in his brain. Because the bleeding didn’t get worse and the people in emerge around us had stab wounds and gun shot wounds (not JUST a beating to the head) Jason was sent home to my care 20 hours after being attacked. I didn’t really want him in a hospital in downtown Toronto but looking back it seems absurd that he was released with just a prescription for T3s and a note telling me about red flags with brain injuries.

One week post injury I was able to get Jason in with his family doctor, colloquially known as Dr. Dumbass around town ( NOTE: if you are told people refer to your doctor with a name like that – just save yourself the trouble and switch right away). In his first appointment – without even reading Jason’s files from the hospital he shared that if Jason went off T3s that very day he should be able to drink at our wedding in two weeks (yay priorities! Also it is completely possible/likely to go through withdrawal after a week on the maximum amount of T3s you can have which makes recovery infinitely worse) and smirked when I asked about using supplements such as fish oil and curcumin to help with his recovery. He said Jason was fine to return to driving and work and only gave him a “graduated” return to work program (two weeks of half days 5 weeks after the injury and then into full time) when prodded.

Months later Jason continued to see his doctor as his energy and cognitive skills waned. Dr. D offered no referral options so I used my connections with smarter health professionals to find out where Jason needed to be referred and how to get the referral forms. I would send Jason in with the forms and then Dr. D would usually fill them out although grudgingly (he was pretty happy to charge the paperwork fee though!). The breaking point for us came when in January, 6 months post injury, Jason shared with Dr. D that he could not maintain his work schedule and that symptoms were significantly worse and Dr. D answered with “If you can’t keep up at work you should move closer to your office, it’s not your work’s fault that you have a brain injury”.

I wasn’t at this appointment. It’s a good thing because I would have been filing a complaint right away, but instead Jason shared this with me when he got home. Oh man, the angry tears flowed. Angry that a doctor could be so uninformed, angry for my husband who was disappearing every day, angry for the implication that this random act of violence was somehow our fault. Even sharing this story I want to scream.

We had a shitty experience with doctors. It forced me to research brain injuries and alternative treatments, and it forced us both to grow up and defend ourselves. It is angering but the reality is we are not alone in our experiences. With all the gains made in traumatic brain injury care there are many many doctors that are not keeping up with technology and treatments and best practices. Clark Elliott shares shockingly awful care in his story. Comments on support groups are full of people that wonder if they are going crazy because their doctors think they should be “over” their brain injury. It’s a horrible and sad trend and it’s important to recognize your doctors abilities for what they are and be prepared to move on if needed. Tomorrow I will provide some info on how to change doctors.

 

Terminology Lesson

Who the heck am I speaking with? (in alphabetical order)

Ear, Nose and Throat Doctor – If you have headaches that are similar to sinus aches or tinnitus you may be referred to an ENT doctor to assess if anything other than the brain injury is contributing.

Family physician – In Canada family physicians are governed by their provincial college such as the College of Physicians and Surgeons of Ontario (http://www.cpso.on.ca/About-Us). In our experience this will be the person that makes the majority of your referrals and fills out paperwork for insurance, lawyers etc. It is essential that you trust your family physician and that they have some understanding of the new research out about brain injuries. In another post I will discuss our experience with changing doctors in Ontario which may be necessary if your doctor is unwilling to work with you.

Neurologist – A doctor that specializes in neurological conditions but does not do surgical procedures. They can work with a wide variety of conditions such as dystonia, multiple sclerosis and brain injuries.Most often your family physician will need to refer you to a neurologist as they are not a front line healthcare professional.

Neuropsychologist– A psychologist that focuses on cognitive skills such as memory, planning, comprehension. From our understanding they should be involved in any situation where the TBI survivor wants to return to work as they will be able to give a full write up about cognitive difficulties.

Neuropsychometrist – Works closely with the neuropsychologist and administers the testing for cognitive skills.

Neuropsychiatrist – A psychiatrist with a specialty in behaviour and mood that can analyze their effects on the neurological conditions. Because they are doctors they are able to prescribe medications if they are warranted.

Neurosurgeon – This is a surgeon that specializes in surgery for the brain or spine. With regards to brain injuries they may be called into your case if you have areas of bleeding in the brain. In Jason’s case the neurosurgeon simply monitored his bleeds and provided a follow up. In other cases with more severe bleeds they would operate. Once the physical bleed is resolved it is common to be referred to another health professional.

Nurses – Nurses in a doctor’s office or hospital will often be responsible for your day to day care, checking symptoms and vitals. In some situation a nurse may be sent to visit you at home to change bandages, check symptoms or assist with any medical concerns. Home visits will often be organized by groups such as the Common Association for Community Care (http://www.cacc-acssc.com/)

Nurse Practitioner – Nurse practitioners are nurses that have done extended training to offer more in depth care to their patients. They are able to write some prescriptions as well as make referrals to physicians and specialists in Ontario. (http://npao.org/resources/find-a-nurse-practitioner/#.VYv_ZflViko)

Occupational Therapist- In Canada they are a federally registered health profession (https://www.caot.ca/) . Occupational therapists help return to your lifestyle – they can offer solutions to make your house safer (handrails, canes or braces etc), accommodations at work (modified work schedule recommendations, ergonomic assessment) and information on how to regain your life (sleep, exercise and balance guidance). Some specialize in cognitive skills which can be very helpful post traumatic brain injury.

Personal support worker (PSW) – These individuals may come into your home to assist with daily activities and your personal hygiene as well as to provide comfort and company post TBI. In Canada they are often found through organizations like CACC.

Physiatrist – Often described as a rehab doctor, physiatrists work at restoring function to those that are injured, In our experience the physiatrist did Jason’s rehab intake assessment and then coordinated his therapies and rehab experience.

Physiotherapist – Physiotherapists help individuals regain range of motion, balance and mobility. They can be seen without a referral and some specialize in vestibular physiotherapy which can be helpful post TBI. http://www.collegept.org/Home

Psychiatrist – Physicians that can diagnose and treat mental health conditions.

Psychologist – Professionals that deal with behaviour and coping skills but are not physicians and therefore cannot prescribe medications.

Radiologist – These are the people that read and interpret your CT and MRI results. They write the reports that get sent to your doctor.

Social worker – Often encountered in a rehab setting the social worker may help the family as a whole discuss the changes post TBI and learn how to cope. They may also assist with discharge plans and finding community referrals.

Speech and Language Pathologist -These individuals often work in rehab settings and assess those with traumatic brain injuries for language problems such as aphasia (loss of words) or speech problems with enunciation etc. They can also help with swallowing difficulties that may occur post TBI.