Hello, I hope you can give me some advice, but I might not qualify, and totally understand if you can't, because I don't have cancer. I was given the wrong treatment while in hospital for a pelvic infection. I received at least one dose of Methotrexate. I am still waiting for PALS to confirm doses of the wrong meds I was given, I only have their names so far. I did not receive the folinic acid or the alendronic acid they should have given me to mitigate the damage from the Methotrexate. This was because I realised I was being given the wrong meds when they told me I was on Carbocisteine for COPD. I don't have COPD, so I raised my concerns. I also said I felt extremely ill and wanted to know what else they had given me. They admitted I'd had other meds as well as the Carbocisteine, but refused to tell me what they were and said I had to do a subject access request to find out. So I told them to stop them, whether they would tell me their names or not. They should have told me I'd had Methotrexate, and offered me the folinic and alendronic acids. They did not. I did not find out for days what else I had been given. When I found out I looked all the names up and found information on Cancer Research UK's website. I was horrified to find the painful and frightening symptoms I was having, and the mental distress, confusion and inability to make myself understood verbally, after the event, are all known side-effects and had nothing to do with my actual illness or even the COPD drug I'd been told about. I raised a complaint with PALS and asked the doctors to help me with the physical effects and treat the damage. They refused 'because it is with PALS now.' I had to stay in the hospital until a course of IV antibiotics for my pelvic infection was complete, I was too scared of sepsis not to. I'm aware of my legal rights and am taking action.
I was discharged on Thursday and saw my GP yesterday at short notice. She gave me a great deal of emotional support and reassured me that she believed me (my discharge letter states I was prescribed meds in error and apologises, although it is vague, and I could also show her emails from PALS about the ongoing investigation). We still don't know what doses I've had, PALS are meant to be sorting this, but my GP also said she will try and get my full hospital record as soon as possible. She got me back onto my warfarin because that had been messed up by the hospital and was an immediate concern, she increased my anxiety medication. But it was all a big shock to her too, and she did not know (although she might be finding out) what sort of clinical support I need for the effects of the Methotrexate.
The hospital had done a blood test for osteoporosis (they refused to explain why, but it was probably because of the Methotrexate, there have been no concerns about my bone profile before), but they did not add the result to my discharge letter. I want to find out if I should still get folinic and alendronic acids. I want someone to check my bowel and digestive tract because they are still inflamed and painful and my abdomen still swollen. I still don't even know what I should eat, and am sticking to low-fibre to try and soothe my bowel, but I really don't know what I'm supposed to be doing, and I'm eating very little because of sore mouth and ongoing appetite problems. I am on a strong painkiller for my pelvic infection, but am still getting breakthrough pain in various places in my abdomen and a bit of joint pain in my hips. I am worried about sepsis. I let the hospital discharge me on oral antibiotics for an infection that may have been worsened. I was not safe there, I was being bullied for speaking out, and they weren't giving me accurate treatment because they refused to take the Methotrexate into account. My inflammatory markers show my infection is getting better, but I know the immunosuppressant effects of methotrexate may have made those results wrong. I am so scared of sepsis. And of endocarditis because I have had it before, have an artificial heart valve and am at risk.
I am not prepared to turn up at another A & E and try to explain all this to them. I was treated like a malicious trouble maker in the hospital, even by people who knew what had been done to me. I want to try and get a private doctor to talk all this through with me, give me the right information and referrals I need. I'm so scared of how NHS doctors seem to close ranks, and I can't trust them to advise me correctly any more. Please could you let me know what type of doctor I should be approaching? Please could you let me know what I should be eating?
Thank you.
