I had 10 months of the most awful angioedema and 3 episodes of anaphylactic shock back in 2010. I was in and out of hospital throughout the year with that and with asthma attacks so I had so many blood tests done and what I was told was that something called C-Reactive Protein blood test was coming back as needing to be checked regularly. I wasn't told what that was related to but my Google checks told me it was something to do with the immune system.
I saw several Consultants whilst in hospital, one of whom was a Diabetes Specialist and who scratched his head and said he didn't know what was causing my angioedema and anaphylaxis and he suggested I got an URGENT REFERRAL to an Immunologist. Believe me I had to fight for my GP to make that referral and I was at my wits end. I didn't hear a thing from the Immunologist for months so I phoned his secretary and she told me "He doesn't feel the need to see you as he feels the hospital have given you the right treatment."
My question then was "How can he make that judgement when he hasn't seen ME - the patient, for himself?" Under sufferance I was given an appointment, he was clearly disinterested and dismissive that for me, having 3 life threatening episodes in several months was a traumatic experience for me. He discharged me from his clinic.
At ALL of those hospitals and clinics above, SEVERAL BLOOD TESTS were taken and I insisted on having copies of clinic letters to my GP so that I could see for myself what the hospital consultants advice was. Again I had to continually ask for those letters even though I'm entitled to them - I'm a Medical Secretary myself and I DO know that many medical secretaries absolutely hate being asked to send copy letters to patients for the sole reason that it means more work for them, it's an extra letter they have to run off the printer and place in an envelope and it may mean more phone calls received from patients making enquiries. As far as I'm concerned - that's my job, and I have ALWAYS been more loyal to the patients than to my colleagues and I've fallen out with many a colleague because of that attitude towards the patient - 'the less they know the better'. In fact, it disgusts me to the point I am no longer willing to work for the NHS because of this very poor attitude towards the patient's need for information about their condition and its treatment. I realise not everyone wants to know everything but there are many patients who DO.
And my reason for wanting to know what's in my clinic letters is because I know that hospital Consultants make recommendations to GPs regarding treatment, ongoing tests etc and sometimes these are NOT picked up and carried through by the GP.
In my own case, the letter from the Immunologist made several incorrect statements about what I had said in clinic about my symptoms and it basically told the GP that all was OK and I was discharged. At the bottom of that letter was a PS in very small print and in that PS it was stated that one of my blood tests was of some concern and that 'perhaps' my GP might want to repeat them on a regular basis.
That PS held the most important information in the whole letter, and I almost missed reading it myself because of course, we focus on the body of the letter - the PS is generally something unimportant.
So I waited for my GP to contact me for further blood tests and NOTHING happened. So eventually, I took my copy letter in and pointed the PS out to her and she simply said "Ohhh ... yes." I changed to a different GP that day, I took all my copy letters to the new GP and had them photocopy them and I was referred to hospital again to see a Consultant Physician. I saw the Registrar who, because I was tearful (I was bloody exhausted by this time) felt I should be referred to a Counsellor to talk through my problems!!!
Blood tests were taken, nothing flagged up. I was discharged. But I was NOT WELL. I was totally exhausted.
I went back to my new GP after a few months and asked her when my next blood tests were due for the C Reactive Protein and she looked surprised, so I had to explain the past two years all over again and the fact that repeated blood tests had been recommended. Also the fact that after TWO years I was still suffering this 'travelling itch' all around my body, like ants crawling under my skin and I said I was not happy being fobbed off with 'Chronic Idiopathic Urticaria' by the immunologist.
She sent me for a whole battery of blood tests, then I was called in for repeats, then I was called in to see GP and she said "You're diabetic!" Her whole tone and body language and manner told me she was shocked that it hadn't been picked up before but she didn't say that.
This is why I'm passionate about patients have access to their own clinic letters from hospitals to GPs. It's so easy to slip through the net. And it's absolutely ridiculous for everyone else to know MORE about YOU and YOUR medical needs than YOU do.
Every time I type a clinic letter to a GP I feel so angry that the patient is routinely left out of that 'written conversation' about THEM. And I also get angry that the average patient just ACCEPTS that as the norm. I get even more angry about my colleagues who are quite happy for the patient to be left out of the equation, because I take my job seriously, I care about the patients and I care about efficiency.
Every time I go into hospital I'm EXPECTED by clinicians to answer lots of questions about my condition, when was this diagnosed, when did that test take place etc. and I wonder how patients are expected to know so much if they're NOT GIVEN COPIES OF THEIR CLINIC LETTERS and not deemed important enough to be privy to information about themselves.
So PLEASE whenever you go to hospital for whatever reason, TELL the Consultant you would like a copy of your clinic letter, TELL the Receptionist the same thing and PHONE the Secretary to REMIND her that you want a copy of your clinic letter. It's the only way you will know what has been found and what has been recommended to your GP in the way of ongoing tests and treatment. And it means that if they 'overlook or forget you' - YOU can remind them you've not been attended to.
I'll be quiet now ...