1. An Addisonian Abroad

Derek and I decided to “Do Europe”. Follow the story of how an Addisonian managed a w month trip, and stories of our adventures here.

This adventure has been in the planning for months. This is Derek’s “Bucket List” trip. That “once in a life time” where you do the things you have always wanted to do, but never quite gotten around to.  It wasn’t supposed to be like this, but we realise that it’s going to take a lot of energy to do, so we are going to do it once, and do it well.

First was “Where do we go?”

Derek wrote a list of the things he really wanted to see.

Then it was How long do we go for?

To do the trip with breaks so he can rest, it couldn’t be short. So it’s 2 months. Derek has leave to do that, I don’t. So I have had to give up my job to take him. Anyone reading this that has a job going from October (in Wellington area of course) please let me know, I will be looking.

So what are we doing?

We start with Vancouver, then a short trip to France, followed by a cruise, then another couple for stops in Europe before heading to England and looking up some family.

Planning when you have a Chronic Illness that requires Medication

To do this, we needed to plan. We had to work out how long we would be away, and how much medication Derek would need to take while away.  And how much we needed to take “just in case”.  We then had to GET the medication. Tablets, liquids, injection equipment. Everything needed to cover all eventualities.

But why? There are hospitals in other countries!

If you said that you are right, but we also have friends (on line and personal) with the same conditions Derek has. We know the issues they have with a rare condition when they rock up to a hospital saying they need Drugs for this or that, even steroids which don’t actually have any real value unless you are dependant on them to stay alive. It doesn’t matter that they have been living with Adrenal Insufficiency for a week, a year, or 10 years. It is a crap shot whether you get a good hospital or a good Dr, or a Dud.

So we began collecting all the medications needed. It took several months due to rules and regulations about prescriptions, and funding.


The Medication

1 weeks out and we have all the medication.

Practice Makes Perfect

If I have to do an emergency injection, then I need to practice it. So I did, and Derek videoed it to ensure I could do it properly. If you read other Blog posts you will see that I have done this before, so it was really just a reminder. Just remember, this was an old medication, and was a practice. In reality, you should also wipe the top of the bottle with a sterile wipe if you can.


T -2 Days

We are now 2 days out and the planning continues. I was awoken at 12.30 am by the phone going. As it does anyone, it gave me a fright. I grabbed it and looked at the number. I didn’t recognise the number but could tell it was international, so assumed it was one of those Scam calls.

I answered carefully with a “Hello?”

I didn’t hear clearly what was said, but it didn’t sound like one of those hangups that encourage you to call back, there was a human at the other end, and they were talking.

“Sorry, Who did you say was calling?”

“I am looking for Mrs Jo Edson”

“Speaking”.

“It’s the Acropolis Hotel, Athens here.”

Bugger, we are staying there, or not!. The nice man, in very good English, explained to me that when they were looking at the bookings coming up, they realised they were closed when we were supposed to be there, so I had to cancel my booking. Thankfully it was a “free cancellation” booking. The lovely, very apologetic man said he would send an email confirming that the booking needed to be canceled.

I said something to Derek. Went back to bed, and then tried to get back to sleep.

The first thing I did when I woke up was get on line to cancel the booking, and find another hotel. It didn’t take long. I told Derek what I was doing and as usual, he had no memory of me telling him the hotel called. He knew he “sort of woke up” but that was it. He did his usual, mutter something, roll over, and go back to sleep.

We are now booked in a different hotel, in the center of Athens.


T -1 Day

It is the night before we fly. Derek has been sitting for the last two nights trying to work out a dosing schedule.

He needs to take his medication at the right time, without stacking (taking doses too close together) and without going more than 5.5 hours between his day time doses.

He also needs to take his Warfarin, and his other morning medication. Again, this needs to be at an appropriate time, not too close together, and not too far apart.

It requires concentration, it requried a lot of math and it requires a lot of patients.

He will get there, but it’s hard.

For a normal healthy person on a few pills (anti-inflammatory) I just take them in the morning, no matter what time that is. But when our medication is all that is keeping you alive, it is a lot more critical. And with Warfarin even more so, as too much and he could bleed internally, too little and he could clot, flying can reduce or increase your INR, eating different foods can increase OR decrease your INR, and getting the INR checked will be a problem.

And this is only for going from here to Canada for a week, then Europe. Once IN Europe, it will be easier as the timing only changes by an hour up or down and is easy.

It requires a spread sheet, and reminders in his phone, once it is sorted.


Take-off

6am, and I was awake without the alarm. I had already woken several times over the last few hours. First there was the worry over leaving the kids alone for 2 months (they are adults, they will be fine), then taking Derek away for so long. I went over in my head, all the things that could go wrong. And there was a lot.

Then came the “have we planned everything properly”.

I started watching TV as Derek rolled over and took his 6am meds. It was such an ingrained habit now.

7am came and Derek was starting to wake up. We started talking about the trip. We then started planning the day. One of the first things on the calendar was the need to have a hair cut. Derek was booked at the barber, the hairdresser for me.

Next came morning tea and a final pack of the bags, checking that we had everything.

After that we were able to sit and relax. Derek needed to save his energy.

Tammy arrived to pick us up.

Derek and I checked in via our phones. I went to print off the boarding passes and discovered that we had 20 minutes to get from the domestic to the international terminal at Auckland Airport. It wasn’t going to happen. I phoned my sister, who was meeting us at the Domestic terminal, to ask that she could drive us, and have a wheelchair ready and waiting at the door of the International Terminal.

Then the thought hit. If we went in really early, could we get the airline to give us an earlier flight to Auckland. This would reduce the stress, and give us time to get sorted.

So off we drove. It was slow, it took us 20 minutes to get through what is known as the Terrace Tunnel (a 2km distance). Thank goodness we were early.

Finally we got to the airport. Before checking in the baggage, we went to the Enquiries desk to ask if there was a chance of getting an earlier flight. Derek was clearly exhausted just from the stress of the drive to the airport.

Absolutely it was possible. We were put on a flight 2 hours ealier than the original flight. This gave us an extra 2 hours in Auckland to meet with Vicki and Doug. Not only that, but they could see Derek was having a problem, so added Wheelchair Assist from Domestic in Wellington. This meant a wheelchair waiting in Auckland for us.

And it was needed. As we landed in Auckland Derek went to stand up, and he couldn’t. He could barely get one foot in front of the other as he disembarked from the aircraft. Thankfully there was a wheelchair waiting. He took it without argument.

It was routine in NZ that you are given a wheelchair, and left to your own devices around pushing it.  So that is what we did.  We found Vicki and Doug, and headed to the International terminal on foot.  We had lots of time to do so.

We were also able to relax and have a drink with my sister and her husband instead of having them grab us, dump us, and run.

The wheelchair, very much needed, then gave us easy access to everything else.

Once on board we settled in for the night. We were served a lovely dinner, a nice glass of wine, and it was lights out.


Canada

Vancouver at last

We woke the next morning to a cooked breakfast, and lots of activity as we prepared for landing. Now it was becoming almost real that we were do this.  It had been 6 months in the planning, and it was finally here.

We ate, chatted, re-organised all our belongings and waited. The announcement came over that we would be an hour late landing, and could anyone who did not have an immediate connection, please remain seated while those that did, could disembark quickly.

So we didn’t rush off, but the lady next to us did, which meant I was able to get our overhead carry-on luggage and be prepared for a quick (Derek’s pace quick) exit. As we were right next to the disembarking door I was able to see the staff with the wheelchairs. That was good as Derek could hardly move. His legs would not listen to the commands. This was normal after such a long time sitting/sleeping.

Finally we got off the plane. We were taken (with Derek in wheelchair) to a seating area just beside the airbridge. He was asked to leave the wheelchair, and take a seat to wait. Once the other passenger with wheelchair assist had joined us we were put on a cart and driven through the airport, down a special lift, and into the self clearing customs area. The lovely lady driving us then took us through to baggage claim, help with out bags, and that was it, we were out on the street, In Canada.

Once we got our bearings we got a taxi cab to our Air BNB. The driver stopped outside and asked us if we were sure it was the right place. It looked untidy. There was rubbish on the front lawn, there a TV dumped on the lawn, and it just looked “wrong”. I was begining to worry that we had got it wrong, and that Air BNB was NOT the way to go.

I found the key to get in the house, and the Suite that we were staying in. It was lovely. Others would use the word quaint. But for the next 3 days it was ours and we were going to make the most of having a home close to the Centre of Vancouver.

It was early in the day, so after settling in, we decided to stretch out legs by going for a walk.

We got to the end of the street and looked. Did we go left of right? Up hill or down? I had seen on google maps that there were shops to the right, so we went up hill.

MISTAKE. Turns out that Right was a small dirty China Town type area. We walked for several blocks and decided to turn around and go the other direction. We walked back towards our street, and past it. As we walked further we saw more people. Until, in the distance, I saw a large crowd of people crossing the street. Like any good tourist in a foreign town, we followed the crowds. I learned from living in England that, if there was a crowd, there was a reason.

dig

And we found the reason. It was the Vancouver mural Festival.  3 major streets closed off for street vendors, entertainment, food, and lots of art.

As we arrived many were closing up for the day. Had we headed Left to start with, we would have had an hour to wonder around. As it was Derek was tired, and everything was ending, so we headed back to our lovely home. We picked up food from the Food market, and off we went, to have dinner and sleep.

 

The Adventure of Exploration (And how to break Derek)

In the past when Derek and I have traveled we have been up early, and out all day, not wanting to waste a minute of time in a new country. But this was different, we had to pace ourselves, we had to find breakfast, we had to “plan”. We had 2 full days in Vancouver, and knew we couldn’t do a lot. We (meaning Derek) were also tired, so had to be careful of what we did.

The original plan was to go to Vancouver Island to see a friend, but we spent several hours the night before working out the logistics. It was going to take a minimum 5 hours with too many time critical changes on the public transport system to get there.  I was gutted.  I had to cancel the idea. It was just going to be too hard on Derek , we were alone in the house, and I couldn’t leave him alone our second night in Canada.

Instead we opted for a walk to the left, to find breakfast, and then took a bus to Stanley Park.

It was a beautiful day, and Stanley Park, in the summer, is a Must for anyone visiting Vancouver.  It’s beautiful.

We walked around for a short time, until Derek became too unstable on his feet, he needed to sit down. What better way to do that than on a Pony and Cart ride around the part. It was expensive, but worth it. A much better way to see the park than by foot.

While on the Pony and Cart right we heard discussion about a show under the stars in the park.  It sounded interesting, but we were only in Vancouver for another 2 nights so it wouldn’t be possible to see it.  Or so we thought.

IMG_0502
After the ride it was time for lunch.  We found a lovely restaurant in Stanley Park, and went to see if they had a table.   They were busy, but had space for us.At lunch I found a brochure for the shows. One was Cinderella.

The other one was 42nd Street. Well anyone that knows us KNOW we cant resist a good show. And 42 Street is never a show to miss. So after lunch, we bought tickets for the next day and headed home.

42 Street Under the stars

Tickets to 42 Street Under the Stars at Stanley Park

We would have headed home, but I was wanting a cup of tea, I mainly drank white tea, and to find it, we had to go to a chineese tea shop. Being a lovely day, off we toddled (walking at Derek’s pace), to find the nearest Chinese Tea shop.

What we didn’t realise is that what looks like a short distance on a map, isn’t. We started off fine. But it was hot, it was hilly, and it was a very long way. We went from walking block to block, to walking half a block, finding somewhere to sit for 5 minutes for Derek to rest, then walking another half a block.

We made it just.  I saw the shop ahead. I sat Derek down on one side of the road, raced over, grabbed the tea, and looked for the nearest bus stop.

We were finally headed home for a cup of tea and and early night.

During the bus ride to Stanley Park we had found out one very useful piece of information from talking to another tourist. If you visit Vancouver and need public transport for 1 day, pay $10 each, and could buy an all day pass on the Bus, Skytrain, or Water Bus. We planned to do that the next day.  It would last us up to midnight, and meant we could catch the Bus from 2 minutes from the house, all the way to Stanley Park and back again, as well as using it during the day.

As we sat down that night we discussed the most pressing thing that we had to do. We needed to get Derek an INR.

The Blood Test

The first job on the list on Monday morning was an INR blood test. We new we would have to pay for it, but had hoped it would be like New Zealand in that it was one we could go to a Lab, and request and pay directly.

Apparently not. We needed to get to a Dr first, then go to the Lab. And the Dr was going to cost $200 Canadian ($240 NZ) plus the cost of the blood test on top of that, which we expected to be around $100 Canadien.

A Decision.  $300 for a blood test, or trust that he feels well, therefore his INR should be safe. It was Derek’s call. He decided that almost $400 NZ wasn’t worth it when he was feeling good. We know the signs of both low and high INR, he hadn’t missed any warfarin, so we skipped the blood test. (This may or may not come back to haunt us).

Next we purchased the all day pass for the buses and we were off.

After working out the system, we boarded a sky train to Olympic Village . It was really lovely. The appartments originally built for the Winter Olympics were now expensive homes.

After lunch we went to the Water Front for a look around, and then headed home for Derek to have a rest. We had 42 street under the stars, and it would be a latish night.

42 Street under the stars.

What an experience. Great Singing, Great Tapping, and Great acting. Worth the money, energy, and effort. And for Derek there was effort. But we were both determined to do it.

We went there and back by bus. After the show, it it was home to bed to prepare for packing the next day.  Derek had updosed to manage the show.  Thankfully it wasn’t too cold, and we were prepared with warm jackets while we waited for the bus.  It was a late night, but worth the effort.

A Train through the Rockies

We were able to sleep in and let Derek rest as the next part of our journey wasn’t until lunch time.  After Breakfast we packed, phoned a taxi, then headed to the train station. We decided, in order to reduce the stress on Derek, we would get to the station in plenty of time so he could rest. There was a “lounge” available for free tea/coffee and snacks while waiting for the train. This was to be one of the highlights of the trip.
The Rockies by train. It meant you could see beautiful picturesque mountains, and valleys, and relax at the same time.

When we arrived the lovely lady doing the ticketing saw Derek’s walking stick and offered us  a powered cart to get us to our section of the train.

We didn’t think it was really necessary, but would accept the offer.  When we saw the length of the train, and the fact we were in a carriage at the far end, we were glad we accepted the offer.

The trip was supposed to be spectacular.  We had seen images from when our son went on this trip several years ago.

The reality was very sadly different.  It had been a long hot summer for Canada and a lot of the Northern hemisphere.  Because of this there wre wild fires everywhere.  Vancouver was covered in smoke haze, and so were the Rockies.

It was sad to see so much haze.  The rockies were still majestic, but you were constantly aware that somewhere, people were fighting fires.  At one point we saw a fire close up.

On the plus side, it was nice and relaxing.  We had chosen to have a sleeper, which meant access to the observation lounge.  As we boarded we met a “cabin” mate.  We were using a curtain bunk set and there were bunks in the area.  Still private, but not as secluded as a room with a door.

One of the bunk mates was an Australian lady that was travelling alone.  We introduced outselves, then all went for a drink in the Observation lounge.

While I sat talking Jackie, Derek sat chatting with several others that were travelling.  It was nice to meet others who were doing the trip for the first time.

It was fun.  We received a free Welcome Champagne each.  Jackie and I chatted to the bar tender.  Without me ralising, Derek and got me a drink when the bartender asked him if he wanted one.  When the bartender got to us I got one as well.  Jackie and I sat drinking, chatting, and getting to know each other.

At one point I could see Derek was having a problem with the person he was talking to.  It was an American who was very opinionated on everything he was saying.  Derek was facing me and I could tell he was getting sick of speaking to this guy.

The guy got up to go to the toilet.  I seized the opportunity to go and rejoin Derek at the double seat/table at the front of the carriage, taking Jackie with me.  We made sure there was no room for the American to sit and join us.

when it came time for Dinner we invited Jackie to join us.  She gladly accepted as one of the others she had been talking to had been making rather overt hints about Jackie travelling alone, and offering to keep her company.

We spent the rest of the evening with Jackie.  It meant Derek could just relax as he didn’t need to keep me entertained.

We eventually went to bed, Derek on the bottom bunk, me on the top.  It was late, but relaxing.

The following morning saw two things.  One was a stop in Jasper for a change of crew, and the disembarkation of Jackie, and the other was crossing a time line.  We lost an hour over night which meant another adjustment to Derek’s meds.  Luckily he had built this into his planning for his Warfarin.

We met others on the trip as well.  Including several lovely groups from the US that were “The grandparents” which was a group of Inlaws that were travellign with their married children.  And a lovely gentleman who had visited New Zealand when he worked for Boeing before retirement.

Paul, back right, had taken a photo of a bridge that I had also tried to get, but missed.  We chatted a number of times, and Derek and he swapped info.

By the time we got to Europe Paul had sent us the photo he took, which was a lot better than mine.

After the fun of the evening before with Jackie, it was a good idea for Derek to relax until we were due into Edmonton at 4pm. Chatting to people, sitting in an observation carrage (which was empty) and just resting with eyes closed was the order of the day.

Edmonton

After 5 days in a haze we were looking forward to less smoke in Alberta.  Alas that was not to be the case.  Instead, it was also in a serious haze due to forest fires.

We were being met at the train station by a lovely lady that I had known on the internet for 20 years.  Her nickname when I met her was Techlady (aka Betty).  We had arranged to spend 2 nights with her before flying to Toronto.

On time we arrived at Edmonton.  Now to find someone we had only ever met on line. Thankfully I had seen pictures of her so it was quite easy.  Derek was clearly tired so we grabbed our bags, went back to Betty’s place and relaxed on the porch.  We had eaten a large lunch so were happy not to have any dinner, just a snack.  As we had only met Betty that day in person, and we were being put up by her, we sat talking for a while.  I looked at Derek at 8pm Alberta time and realised that Derek was failing fast and had to get to bed.  We made our excuses and took him off to bed.

We had two things we wanted to do on the one full day we had in Edmonton.  One was to visit Edmonton mall, and one was to purchase a new BP monitor for Derek.  We knew of one that would connect via blue tooth to your phone so you could store your readings.

First on the list was the Mall.  “West Edmonton Mall, located in Edmonton, Alberta, Canada, is the largest shopping mall in North America” and our son said we had to see it to believe it.  So we wanted to see it.

Betty and her partner drove us there, and then around the outside.  It was big, in fact, in it was very big.  After going around the outside we found a park so we could go inside.

Before we went in we had decided on a plan.  We would get Derek and Betty’s partner wheelchairs as her partner had issues with walking, and Derek was tired from traveling.

We entered a side door and got both the boys to sit down while Betty and I went in search of wheelchairs.

We found a map, tried to follow it, and realised we (I) headed in the wrong direction.  We then changed course.  It was quite quiet in the mall so I thought, with a wheelchair, Derek could have a good look around.

Then the truth hit.  As we walked down a walkway it started.  The noise, the echo, the intense stimulation to the brain.  I turned to Betty and said “This is not good.  It is too lound, too much echo.  Derek will not be able to handle all this stimulation.  We need to get out of here.”

With that, Betty and I turned and went back to where the boys were sitting.  I turned to Derek and told him there was no way he would want to go any further and explained why.

We all left the building.  Before we got in the car it was suggested that we enter another door to the Mall just for a quick look.

A roller coaster in a mall?  Seriously?

Canadian Locals 🙂

 

With that we went in a door on the opposite side of the car park.  On opening the door we were struck with a roller coaster.  It was large, it was loud and it was busy.  I couldn’t believe there was a roller coaster in the shopping mall.  There is also a bowling ally, and several other attractions.

 

 

After the experience of an over sized (North America just love to super-size everything) mall we went for a drive to meet the locals.

He seemed a friendly chap from a distance but we were happy to stay in the car.  Derek was becoming very tired and sitting in the back of a car and just looking was all he could do by then.  Betty was also feeling very fatigued as she has her own medical issues, but sitting was not a good option for her so we encouraged our lovely driver to head for home.

 

With the mall under our belt, and a lovely visit with “Techlady” and an introduction to her lovely home service, we flew to Toronto.

Meeting more Internet Strangers

From Edmonton we flew to Toronto.  We were meeting up with one of the other Administrators from the Adrenal Diseases Support Group that we belong to, and that I am an Admin on.

It was exciting as we were spending several days in Toronto and Derek was going to be spending time with Rowena and her new husband while I went to meet some more people I had “known” for 20 + years but never met.

For the first time in 6 years I was comfortable leaving Derek for several days without me, knowing that he was in the safe hands of someone who knew what to do in an emergency.

We had booked a whole house on Air BnB as Rowena and Fred were bringing their dog.

We arrived to find a lovely home, in a very upmarket area, with lots of space.  The host had left all the info we needed.  We arrived earlier than Rowena and Fred as they were driving down from Montreal.  It was raining, but still quite warm.

Derek and I looked through the house and found the room with the ensuite, away from the rest of the bedrooms.  We took that, which left the rest of the bedrooms to Rowena and Fred, including the large family bathroom.

The meeting of minds.

Rowena and Fred finally arrived and it was like meeting an old friend.  We all started chatting immediately.  We went for a late dinner (they had  a car so could drive around easily), and kept chatting.  Derek talking to Rowena, Fred and I chatting, and then all talking again.

The next morning we went for a late breakfast (brunch) and did some grocery shopping,  While out I got a call from Kelly (one of my long time Internet friends, and the person graciously hosting me for 2 nights.  Other “internet friends” were picking me up, but they had got to the house and I wasn’t there.  I asked Kelly to let them know we would be about 10-20 minutes.

After taking the groceries home I grabbed my bag just as two more total strangers pulled up in their car for me to get in.  (What was it I had always been told?  Don’t ride in cars with Boys or Strangers).  Oh well.  Here goes.

Again, chatting like life long friends (20 years on the internet counts) all the way up the 401 to Kelly’s place where even more strangers were waiting to meet me.  I was actually getting quite excited.

Derek on the other hand, was having a good time himself.  Rowena and Fred knew Toronto as Rowena had lived there.  They took Derek out to see some of the City, including the Tower, Memorial, and Aquarium.

 

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The Expert Patient

As far back as 2002 an article was written for the British Medical Journal encouraging patients to become “Expert Patients”.

Clin Med (Lond). 2002 May-Jun;2(3):227-9.
The expert patient: a new approach to chronic disease management for the twenty-first century.   Tattersall RL1.  Author information

Abstract
The expert patient: a new approach to chronic disease management for the twenty-first century, produced by the Department of Health, recommends the introduction of ‘user-led self management’ for chronic diseases to all areas of the NHS by 2007. The premise is that many patients are expert in managing their disease, and this could be used to encourage others to become ‘key decision makers in the treatment process’. Furthermore, these expert patients could ‘contribute their skills and insights for the further improvement of services’. It is hypothesised that self-management programmes could reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy. It is stressed that this is more than just patient education to improve compliance. Instead there should be ‘a cultural change…so that user-led self management can be fully valued and understood by healthcare professionals’. I point out that these ideas, while welcome, are not particularly new. Achieving the desired culture change will not be easy.

“Expert patient”—dream or nightmare?

BMJ 2004328 doi: https://doi.org/10.1136/bmj.328.7442.723 (Published 25 March 2004)Cite this as: BMJ 2004;328:723:

The concept of a well informed patient is welcome, but a new name is needed

Since the chief medical officer for England first introduced the term expert patient, it has been picked up and used very widely.1 During this time, the notion of the expert patient seems to have been criticised by doctors at least as much as it has been welcomed.2 If one asks lawyers, architects, social workers, or management consultants whether they prefer clients who take an interest in the issues they face and are motivated to work in partnership to achieve successful results, the answer seems obvious. So why does the idea of expert patients provoke such antipathy within the medical profession?

There is even a Training Course across England called the “The Expert Patient Program which states:

“Creative thinking is key for the Expert Patients Programme (EPP), a thriving Community Interest Company that gives people more control over their conditions through cognitive therapy courses.

It has made a particular difference to people with long-term illnesses, such as diabetes, arthritis or respiratory problems, by teaching them how to self manage and monitor their own symptoms. “It’s giving patients more control,” says Renata Drinkwater, Chief Executive (interim). “Courses like these are proven to make a difference. They boost confidence and, in some cases, can delay the onset of other conditions. They also have other benefits, like reducing the amount of times the patient needs to go into hospital or use Accident and Emergency.”

Conclusions
So, will the vision set out by Professor Donaldson and the Expert Patient’s Task Force work? The simple answer is ‘no’, unless there is a sea change in attitudes among patients and, more importantly, healthcare professionals.

What About You?

As someone with a chronic illness, would you consider yourself an “Expert Patient”?  Do you consider your Dr a Good Dr or a Bad Dr.  Is he bad because he has a history of harming patients, or a bad Dr because he doesn’t know your specific condition.

As a patient with a chronic illness you go to your Dr expecting a good level of knowledge, and that they keep their knowledge up to date.

You go to a specialist with the same expectation.

What happens though if the chronic illness you have is rare condition?  If your Dr or Specialist only has 1 patient with your condition, but over 1000 with a more common one.  Do you expect them to keep their knowledge up to date?

The reality is, if you have a rare condition, you can’t and shouldn’t expect them to be as up to date as you want, or to have the knowledge you would like, at least not when you are a new patient.  It’s different if you have had them for 2, 3, 4 or more years.

Instead, what you CAN expect, is to be listened to, to have them acknowledge that it is a learning process for you both, and that if you are able to provide relevant up to date information, they will accept it and not dismiss it because it wasn’t what they learned when they were training 20/30/40 years ago.

Yet this is also not always the case.  So instead you learn what you can about your condition, to fill the gaps and hope you can at least work around your Dr.

In truth, a patient goes to the specialist wanting help to improve their quality of life.  If you are lucky your specialist, knowing you are coming, has done a quick review of your medical notes, a quick read up of the condition.  But with that, they have decided, almost before you walk in the door, what treatments they will or will not offer.  If you ask a question they are not expecting, you take them off guard.  But they don’t want to appear like they don’t know the answer (which they probably don’t) so they either ignore the question, or give some answer they drag from the back blocks of their brain where they remember something they heard once years ago, whether right or wrong.

These are the Dr’s we hear about in the forums.  The ones that “don’t get it”.  We get frequent cries of “I’ve fired my endo.”  “My Dr is an Idiot.” “I can’t find a decent Dr who knows anything.”  And I can see why they say it.  I have heard the horror stories of medical appointments, ED/ER visits, lack of knowledge and but refusal to acknowledge it.  These Dr’s need training in your condition, but they are not getting it.  Why?  Is it lack of time?  Lack of interest?  Or maybe they don’t know where to start?

What would happen if, instead of leaving frustrated, angry, and ready to fire them, you sat down and tried talking to them as equals?

What if you opened up the consultation with a different tact.  If, instead of expecting them to know everything, or worse, you go in expecting to have a bad appointment with them knowing NOTHING,  you went in knowing they didn’t know anything, but were open to learning.

What would happen if you opened up the conversation with something like “I am struggling with my conditions, and with the general lack of knowledge and research available.   I don’t know how you Dr’s keep up to date when there are so many rare conditions out there.  I need to get a better quality of life, perhaps we could learn and work together on how to better manage my health.”

What would your Dr say?  You are not challenging their knowledge, but you are also not putting expectations on them to know it all.   If they take that bit well, perhaps go on with “Do you have any recent research I could read, or a website where I could go to get good up to date research on my condition so I can learn more about how to help myself”.

The worst that could happen is they dismiss you out of hand and go back to their personal ideas. If this happens you have two options, you can get upset and leave the consultation frustrated then go on line to rant.  Or you could ask them straight what their objection to having a knowledgeable patient is.

By now you have nothing to lose
if you have already decided to leave
and find a new Dr?

You might get a surprise.  You MIGHT get a Dr that is willing to work and learn with you.

The Expert Patient may not only need to be an expert in their condition, but also in negotiation.  A Win/Win negotiation is an art.  It requires giving the Dr something they really need (which may be stroking their ego) but also getting what you need, which is  a Dr willing to work with you.

Dr’s won’t learn, if they are not taught and quitting a Dr because he doesn’t already know simply means that the next patient will get what you have, a Dr that has neither the time or interest to learn.  You never know, you might awaken in that Specialist or Dr, a new interest in your rare condition.  Then he won’t be a Dr to run from, but a Dr to run TO.

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