A few weeks ago I requested all my consultant letters from 2015 onwards. I like to have copies of things as it keeps me straight, doctors are human beings and things get missed. However I wasn’t quite prepared for the amount of untruths, information about my health that had never been passed onto me and test results that had needed urgent action that had never been acted upon. I spent around 30 minutes just having a quick read through, as you can imagine there were probably  100 of pages of information – most of it irrelevant just showing what prescriptions I had ordered and when. But if I found all this in 30 minutes what else is lurking in my notes that hasn’t been acted upon, is a major untruth or I have never been told?

 

I want to state for the record I have no problem at all with my gp surgery, the things i have spoken about should have been relayed to me by my various hospital consultants. I can understand why my gp didn’t bother telling me about the arsehole I saw in 2015 whose letter is so full of mistruths that I wonder if it was actually my appointment he was reporting on, my gp at the time was probably concerned for my mental health. Although we did have an appointment quite soon after seeing this doctor and I made my feelings about him quite clear. Usually my old gp would rush to the defence of other medical professionals if I was voicing a negative opinion, his silence on the matter should have alerted me to the fact he wasn’t that impressed by this so – called – expert.

 

So what did I learn from this quick perusal of my consultant letters? Well I have never been naive enough to believe that I or any patient ever receives the same version of a letter your consultant cc’s you in on – actually tell I lie I know one of my consultant always sends me the same version as he never changes who it is addressed to – never me but my gp. I have seen this in the past with the version I received from one doctor telling me that he was going to do a trial of plasmapheresis to rule out Myasthenia Gravis, only for me to read the letter he sent the consultant where he categorically states I do not have MG and he thinks that all treatment for MG should be stopped. It made me look like a liar when I tried to discuss this letter with my local hospital consultant. At the time I was devastated by the duplicity. Why be one thing to a patient’s face and yet treat them so appallingly behind their back? It reeks of arrogance, that they feel they are a breed apart from their patients.

 

Firstly I learnt I have a fibroid on the anterior wall of my uterus. When I attended the hospital for my trans-vaginal ultra sound in 2015, I was told during the appointment I had an ovarian cyst of around 2cm in size on my right ovary. I was also told that this wouldn’t be monitored as it was under 4cm. At no point was I told I had a fibroid, this was complete news to me.  I was shocked that at no point had anyone suggested that I the patient be given a copy of the report after the ultrasound. Ok it’s not a huge fibroid but surely I had the right to know? Especially when there is no mention of an ovarian cyst.

 

In the same year I had a lot of bloods drawn one of the blood tests performed was a cortisol level. It was taken at 1015am in the morning when cortisol levels would be beginning to slowly drop away naturally. However my cortisol level was 107, as you can see from this abstract – https://www.ncbi.nlm.nih.gov/pubmed/12636203 a level of less that 110nmol/L shows that the patient has adrenal insufficiency. This has the potential to be life threatening as it could indicate I have Addison’s disease. Yet nothing at all has been done about this result. The hospital consultant that wrote to my gp said that he would be admitting me into hospital for further testing. It never happened. What annoyed me more was this was the doctor who accused me of spending too much time on the internet looking up syndromes to have…..yet my blood tests he reluctantly performed showed massively raised prolactin levels and this cortisol level of 107. I’ve had low cortisol before and had further tests in 2010  however my results then were not as low as they were in 2015. So now I will copy the letter and go and see my gp to point out I had low cortisol levels three years ago and possibly it would be a good idea to get it tested again?

 

The winner of best work of fiction – letter from a consultant goes to an arsehole I had to travel nearly 200 miles to see. When I met this tit I knew he was going to be of zero use, especially when as an EDS expert he told me that Ehlers Danlos Syndrome didn’t cause CSF Leaks. When you sat across from someone who is supposed to be an expert in their field and you know more than they do on a subject, that’s the time to start worrying. Hubby and I should have left at this point – research shows that 90% ( it could be 80%) of people with a spontaneous spinal fluid leak have a connective tissue disorder, of which EDS is one. So for this expert to sit across the room and tell me that EDS doesn’t cause spontaneous leaks, either meant he was ignorant of the connection between the two – not a good look for an expert or he was just a massive bellend. The choice is yours.

 

My CSF leak was diagnosed by a neurologist who has published papers on CSF leaks, you know an actual expert on the condition. However this doctor states in his letter to my gp that I don’t have a CSF leak and my headache is being caused by PoTs. This is the doctor that doesn’t believe that EDS causes spontaneous leaks and now is telling my gp he knows more than an expert in the field of spinal fluid leaks. The sheer arrogance of the doctor took my breath away, I was absolutely fizzing with rage and used lots of language that I wouldn’t wrote in this blog.

 

However there was even better to come, he wrote that I told him I used a wheelchair due to my headache…….yep read that again……I told him I used my wheelchair because of my headache…… I just laughed at that one. My doctors know I use a wheelchair for two main reasons 1) I get drop attacks where I will semi lose consciousness as I walk along, with no warning. This was the main reason why I had to stop walking my dogs unaccompanied as I had no clue as to where or when I would pass out. I could be mid-sentence and I would hit the deck. 2) I also use my wheelchair because of the various issues I have with my spine and other joints. Walking causes me intense pain, bursitis will flare up in both my hips, I get plantar fasciitis in both feet. Walking any kind of distance is just too painful. I can categorically state that I NEVER SAID I used a wheelchair because of my CSF leak. Because when I started using a wheelchair in 2008 I didn’t have a csf leak. I started using my chair to prevent head injuries from my drop attacks and to allow me to get out and go further than just walking would allow.

 

Now if that had been all the lies / mistruths he had told then I could possibly live with that but his letter was just one lie after another. He claimed I was resistant to coming off opioids despite the fact they don’t work on my pain. His main concern during the whole appointment was to get me off opiates but could offer me nothing in return to kill the pain. I have never said opiates don’t work, I wouldn’t bother taking them if they didn’t work. Opiates were the only medication that reduced my pain enough for me to be able to get out of bed after being bed bound through pain for 12 weeks. Thankfully the gp who this letter went to was the doctor who prescribed me morphine and when I discussed this attitude of the consultant that I had to come off morphine, my gp said no way, there is nothing to give you as an alternate. He said I saw what you were like before morphine, I couldn’t do that to you.

 

Oh and there is more that this cockwomble of a doctor wrote, he said I was resistant like most EDS patients to getting better………………….I’ll let that sink in. Someone at this National Unit thinks that EDS patients don’t want to get better. Now it really doesn’t surprise me as this hospital also uses the Lightning Treatment on pediatric patients with M.E. If they are arrogant enough to believe that they can cure M.E using this bogus treatment no wonder they believe ( or should I say this one doctor believes) that EDS patients can think themselves better.

 

All the doctors that have ever treated me have said what a positive mental attitude I have towards my medical conditions. That I persevere no matter how hard things get. That I can still laugh and make fun of myself when things are truly awful. So to declare in this letter that I was resistant to getting better from a genetic medical condition that has no cure is simply laughable. No wonder the hospital consultant that referred me to this hospital said he wouldn’t waste the hospital trusts money again sending any future patients there.  He couldn’t apologise enough and at that stage he knew I hadn’t seen the gp’s version of the letter, he probably thought I never would.

I would suggest to all patients that they ask for all copies of their consultants letters going back three years. Some surgeries will charge you a fee for this, i was very lucky and didn’t get charged even though I was expecting it. You will have to fill out a load of information as to why you want the information and you’ll need to provide a form of ID. They can refuse to give you these letters using the get out clause of it being detrimental to your mental health. Using the same get out of jail free card they can omit some letters from what they give you. If you have complex health issues it is essential that you have these letters and read them. If you find that tests haven’t been chased up or performed you can advocate for yourself. When you have lots of conditions / consultants it is very easy for things to get lost or lose their priority. At least this way you can be an extra set of eyes and see if things have been missed and bring them up with your consultants or your gp.