“Trust takes years to build, seconds to destroy, forever to repair”
Author unknown
I love this saying because it sums up the issue of trust so eloquently and so much better than I ever could.
Trust is an intrinsic part of any relationship. In romantic relationships we trust the one we love will be faithful and love us completely despite our flaws. In friendships we trust our friends will keep our confidences. Employers trust their employees to follow the rules.
The chronically sick have to build up a trusting relationship with those medical professionals that provide their treatment. Without trust in this relationship you end up with a noncompliant patient.
So many of us within the world of chronic sickness or disease have had our trust in the medical professionals that treat us sorely tested or even shattered. Doctors need to think carefully how they treat their patients as this affects the way that the relationship builds trust. Fail to gain or simply lose the patients trust and the words the medical professional utters will never be believed again.
Due to the way I have been treated in the past by the many doctors I have seen, from gp’s to consultants, my trust in medical professionals has been completely destroyed. I have been told one thing to my face and completely different things have been written in my notes. I have been diagnosed with somatoform disorder but not been told about this diagnosis or been given treatment for it. The diagnosis was not made by a psychiatrist but a neurologist overstepping his boundaries. I have also been placed on medication that there was no clinical rationale to back it up other than to keep me quiet.
How is that building a trusting relationship with your patient? I warily trust the two doctors I deal with now but I know at a moments notice that one false move by either of them and I will be back to square one, trusting no one who treats me.
When you lose the trust you have placed on your doctor, it breaks your heart a little bit. You initially held such high hopes when first meeting them in a state of wide eyed innocence. I have yet to meet anyone who has taken the familiar road of chronic illness, who hasn’t endured the same kind of treatment I have and unfortunately it’s usually at the hands of neurologists. On this journey the next time you meet a new doctor you are just a little bit wary, by the third / fourth doctor you are positively jaded.
When trust is lost you become angry with those who are supposed to be helping you. When you meet the 4th/5th/6th doctor (delete as appropriate) you are positively withdrawn during your meetings. Keeping your answers to simple yes or no’s, you’ve already learnt that an intelligent / informed patient is a threat. Acting either just below or of average intelligence will get you by, it feeds into their superiority complex. ( Apologies to all the good doctors out there as I know there are some.)
My trust in my doctors is being tested at the moment and has been ever since I left hospital in April. There has been what can only be described as a mammoth debacle in my care since then. I like my doctors and I think that they like me, as much as any doctor can like a patient.
In April as those of you who follow my blog know I have been trialling Octreotide which is administered by subcutaneous injections. I am supposed to inject myself daily, 40 minutes before my lunch. However due to repeated bouts of cellulitis and an ongoing issue with my supply of needles and syringes I haven’t injected octreotide since the start of June.
What should have been the issue, obtaining the octreotide (because I am using it off label to treat postprandial hypotension) has been an absolute breeze. I have glass vials of the stuff in my fridge waiting to be used. The issue is the method of delivery.
On leaving hospital I was given ample supplies of needles to draw up the drug and needles to inject the drug along with copious amounts of syringes. All went well initially until I started to run out of needles. Then the games commenced.
My drs surgery informed me that they were not able to supply me with the same type of syringes or needles issued by the hospital. Those size needles / syringes were simply not available on the NHS for prescriptions in the community. I explained that I only had a few needles and syringes left and then I wouldn’t be able to use the drug and was issued with an emergency supply whilst the prescribing team tried to sort the situation out. This was at the start of May 2014.
A few days later after the emergency supply dried up again I was left with the situation again of having no needles or syringes. I got my consultants secretary, the hospital pharmacy, the prescribing team involved and all that happened was that everyone just blamed everyone else for the situation.
Blame is fine once a situation has been sorted, perhaps you can apportion blame when you look at the root cause of the issue. However everyone blaming everyone else has got me no further. I have 200 drawing up needles, 200 injecting needles and ten syringes and its now July 2014.
I need to start taking the octreotide again the postprandial hypotension is wiping hours out of my day. After my evening meal, an hour later I am in such a deep sleep I can not be roused for several hours. It means that I am very rarely actually spending an evening with my husband.
Octreotide comes with side effects that after a few weeks rapidly decline. However if I only have ten syringes what’s the point of putting up with them if after ten days I will have to stop taking the drug again. It seems to be an exercise in futility.
I am in a very difficult situation. I am within my rights to make a formal complaint about both my gp and my hospital consultant for the way this has been totally mismanaged from the start. Thank goodness I am not diabetic because with the follow up care I have recieved I would be dead by now.
Complaining is difficult due to the fact that my gp is the first doctor who has believed me when I inform him of my problems. It is the same one that came and saw me when my bladder decided to go on strike and instead of getting me carted off to hospital ( a place I hate ) got the district nurse to insert a catheter. He knows what EDS is and he knows what PoTs is. My hospital consultant is the one that gave me the tilt table test which proved I wasn’t the basket case I was being made out to be by the neurology department of the same hospital. I have a good relationship with him ( or I thought I did as I am yet to hear from him since April, no follow up appointment to find out how I am doing).
Making a complaint about either of them could land me in the position where I have no one to treat me or who believes in my conditions. You heard how well I got on in A & E recently. What the hell do I do?
I have an appointment with my gp on 30th July where I will be bringing up the stupid situation I am in where I have the drug but no way of administering it. I will also be bringing up my long standing issue with my back and I will be refusing to leave until both situations are resolved or have more than a casual “I will sort it out”.
My trust in doctors is being tested yet again. It won’t take much to shatter it. I wish medical professionals realised that destroying a patients trust means it colours every future doctor patient realtionship.
the myasthenia kid 
Great quote that you started out with! It is so understandable why you feel like you do. Good gracious! I could write for quite some time, but I don’t know that it would be productive. I certainly hope that you get your needles and syringes worked out. Being your own advocate is the only way to a patient this day and age I feel. the more knowledge you have the better. I can’t imagine how things would be if you weren’t well informed. I hope all goes well next week.
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Hi Bee,
I love quotes and came across this one a week or so ago. Another favourite of mine is “this too shall pass” its my mantra when my pain is off the charts!
I am hoping that the needle syringe situation is sorted out soon. I went to use the new syringes yesterday and they aren’t any good. They are marked in insulin units not mls and have a fixed needle which is too short to get the octreotide out of the vial. I could have cried yesterday!
Its crazy that we have to shout so loud to be heard by the medical staff caring for us. The skill of listening and believing your patient seems to have disappeared completely.
Thanks as always for leaving a comment and reading my post.
Rach x
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HI Rachel and Bee thank you for sharing your wonderful guest blog. Rachel you speak of post prandial sleepiness and refer to it as post prandial hypotension. I introduced my self as an individual in one of your early posts as someone with a mineral metabolic disorder Andersen Tawil Syndrome. I, too , suffer from a post prandial sleep attack mode, I didn’t even realize it could be related to hypotension as much of the time my blood pressure is quite high but now better since I have added significant amounts of potassium magnesium and calcium to my regimen. I have discovered that my attacks are associated with too high a level of either carbs and or sodium that can cause a resultant drop in my potassium levels. For a healthy individual these small adjustments in potassium and other electrolytes are normal and usually not problematic for a healthy individual. However for me with my icky channels even minor fluctuations in my serum levels can cause these attacks. My diet is now low sodium high potassium fats and proteins.. Paleo works best for of me. I wonder if you could eliminate some of your attacks by increasing your potassium lowering your sodium and carb intake?
For me the changes took three days to take affect. Three days on low carb low sodium high protein and fats plus about 3000 extra milligrams a day of otc potassium and not only was my pain gone but I had regained flexibility of my muscles. My once stiff spine was again supple and I could literally touch the floor with the palms of my hand while standing. For twenty years my spine had been stiff as a board and I could not bend at the waist what so ever. I have a page on facebook called Andersen Tawil syndrome. I also participate in the Periodic Paralysis Network group on Facebook.. I think perhaps you should check into these disorders also as a part of what you are experiencing. I believe I left my email if you would like to contact me for more information. I am reading your posts and seeing me and many others I know who have very similar symptoms. Dr Michael Hanna at Queens Square in London is an expert and one of the best in the world if you think this might be something you might consider exploring.. Supplementing potassium is generally safe unless one suffers from kidney problems or hyperkalemic periodic paralysis. I actually fight to keep my potassium levels above five which the body tends to fight. This involves me taking a medication that helps retain potassium. Trying to limit insulin surges also is beneficial for us. Thank you for your intelligent blog. I am enjoying your story tremendously and can certainly identify.
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Hi
thank you for taking the time to read and comment on my blog.
I suffer with a whole range of issues as I have Ehlers Danlos syndrome a connective tissue disorder and Severe autonomic nervous system dysfunction (which started life as postural orthostatic tachycardia syndrome). My postprandial hypotension is part of that disorder.
I have done all sorts of different diets to stop these episodes of postprandial hypotension and nothing works. I even tried high protein milkshakes I still either went to sleep or passed out. The problem is my body sends too much blood into my abdomen on digestion (digestion is part of the autonomic nervous system) which is what causes these episodes. Some people I know have found good results with limiting carbs, my system is so screwed I never have.
I am unable to limit sodium as I actually take sodium to prevent me passing out all the time and to try and hang onto the fluids I would just pass out otherwise. Without the high doses of sodium my life would be spent mainly lying flat to avoid fainting. Not something I want to do. Before I took slow release sodium I was confined to bed a lot of the time, this is not a situation I wish to return to.
I would ask that you look up the beighton scale / criteria as placing your hands flat to the floor is not something someone who does not have Ehlers Danlos syndrome would be able to do on the whole ( a small percentage of the population would) and see if the rest of your joints are bendy too. You may find some answers.
Thanks for all the information you provided I will certainly have a look at it.
Rach x
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I forgot to add in reply to your comment that I suffer with extremely low blood pressure which is the reason why I have to take additional sodium. Without the sodium my blood pressure does not get above 80/40.
I have found additional magnesium makes my Myasthenic symptoms much worse. Additional magnesium is contraindicated in MG, although in some rare forms of CMS it maybe useful as you have pointed out in your comment.
I have never tried increasing my potassium it is something I shall consider.
For those of you with Myasthenia Gravis do not take Magnesium Supplements without speaking to your doctor first. Magnesium affects the way the messages are conducted between your nerves and muscles and could lead to you going into crisis. Always take advice from a medical professional if you want to introduce supplements of any kind into your diet.
Thanks
Rach x
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