Following on from my meeting at the trust yesterday i decided to respond to the doctor in question. It was a moment of madness on my part because i am sick of feeling powerless. The letter wont achieve anything other that me letting off steam.
I am writing this letter to you to explain how your attitude, rudeness and lack of empathy impacted on me when i came to a consultation with you.
You wer 30 minutes late for my appointment due to a traffic accident, i was also caught up in the traffic but managed to get there on time.
You had infront of you my medical history but what you did not have was a full and upto date history and account of them. I was not given the time to discuss my health problems with you or given the opportunity to epxplain how my symptoms impact on my daily life.
You asked me if i was incontinant, i tried to explain the problems i was having in that area, you cut me short and asked me if i knew what incontinant meant. I found your response very rude and disrespectful. I went on to explain that weakness that i have and once again you did not try to find out what i meant by weakness. Surely getting a correct diagnosis relies on a full and detailed assessment which requires skill, patience and a high level of knowledge and expereince. In my opinion you do not have the afore mentioned abilities.
You then asked me about the times that i fall, i was unable to give you a date and a time and due to this you state in your letter that i do not have falls. You also stated in your letter that i was anxious at the appointment. I was at no point anxious, other factors could have been affecting me such as pain, tiredness or left sided hearing loss. Non of which you were aware of because you did not assess my condition at all due to you not getting the facts from me.
You did not tell me what you were testing for, if you had have done so i would have told you that the test for MG was pointless as i do not have that condition which has previously been ruled out. If you would have assessed me on my clinical symptoms using knowledge and expereince then in my opinion you would realised that my weakness is not what people describe when they have MG.
i have many many symptoms, most of which you were unaware of because you did not listen and allow me to have a voice during the appoointment.
From my expereince of the appointment it was like being in a mail dominant boardroom meeting. You were holding all the power behind your intimidating desk and me on the otherhand a mere female who expereinces, beliefs and expectation meant nothing to you.
The physical examination again was rushed, a few reflex taps and eye movements and that was it.
Research tells us that even with all the tests within normal ranges sometimes people can still have a neurological condition. This is when a great deal of knowledge is needed along with the ability to fully explore every possible avenue to find a cause for the symptoms, or to exclude with absolute conviction that there is no neurological condtion present.
The avove takes me back to the fact that you could not possible conclude that i do not have a neurological condition because you did not have the full facts, this was because
you did not allow me the time or opportunity to explain my symptoms, period.
I realise from my meeting yesterday with the trust that patients can not challenge a doctors professionsl opinion. Seemingley they have a blind faith in the abilities of their staff. Yet we see in the media daily accounts of deliberate and non deliberate form of abuse and neglect from medics.
I know that i have an undiagnosed medical condition which may or may not be neurological. I need to find out what this is so hopefully i can have a better quality of life.
If i had known that your were a gipsi i would have never agreed to the consultaion, if i am going to see a neurlogist then i expect the person i see to be just that.
Maybe if were to put yourself in the patients position it would help you. Most people want answers to their problems, they need to know what they are being tested for and what the findings are. The approach needs to be open and not cloak and dagger stuff which gives you all the power and ultimately strips a patient of their human rights,
For me personally i insist that i am treated with respect, consideration and that my symptoms and expereinces are at the very core of an assessment. Because ultimately my symptoms and expereinces are what will lead to an accurate diagnosis.
In contrast your assessment was based on historic medical facts, a lack of clarity and little or no consultaion from me personally. Fundemantal flaws i would say as im am the patient.
I hope that you take something from my expereince and that maybe no other person will feel like i do, However i doubt it.
Pointless as this letter may be to you, its not to me. Im a fighter with a family who need me. I dont hve the energy or physical strength to participate in life but whatch it go by from the touch line.
You can put down this letter in the knowledge that you still hold the power, thats the way the nhs operate and it wont change.
If i was assessing your symptoms i would say that you have a condition called short man syndrome. I have based this on my clinical findings. Google it and i am certain that you will recongise yourself but you wont admit it not even to yourself,thats part of the syndrome.