Thursday, 24 July 2014


"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.

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