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I'm seeking advice after a catalogue of errors through my PCT.
I'm 26, and was diagnosed with Crohn's disease at the age of 18. This was somewhat neglected by my consultant (whom I didn't see for 2 years because I was told to see a clinical nurse specialist instead), and at the age of 21, I had major surgery (which I believe was preventable). 4 months later, I had a procedure to dilate an area of my bowel, and unfortunately was left with a perforated bowel. I appreciate this is one of the risks, however, I asked for a consultant to review me before I went home because I was bleeding a lot, and in considerable pain. My consultant prodded, poked and questioned me, then sent me home. Within 2 hours I was being operated on in a bid to save my life. Following this, 2 months later, I had a further surgery to remove my colon.
Post the final surgery, my periods became heavy and painful, and after visiting my GP, I was referred to a gynaecologist. During this visit, an ultrasound was performed. This scan showed some swelling of my fallopian tube, as well as an ovarian cyst. A few months later, I was still having issues, so an MRI scan was performed. This showed that the swelling had worsened, and the radiographer recommended the situation were investigated further. I heard nothing.
In May this year, I was horrendous abdominal pains, and was re-referred. During the appointment, I was told I had a large (13cm) ovarian cyst, and because of my medical history, was referred to a colorectal surgeon. He felt that it wasn't actually an ovarian cyst, but adhesions which had filled with fluid, and sent me for an MRI to find the exact size and location. I received a letter from him telling me that the MRI showed both of my fallopian tubes are swollen.
Yesterday, I visited the gynaecologist again, who confirmed that my tubes are both swollen, and now blocked, to an irreparable state. He confirmed that the case wasn't monitored as it should have been. Equally, it was never shared with me, and if I knew my fertility were at risk, my partner and I would have begun trying for a baby. I have now been left unable to conceive naturally, and will possibly require further surgery, and definitely need IVF. However, my PCT will only fund one cycle of IVF, and not until I'm 30.
My partner and I want to appeal this, because we feel that had it not have been ignored, something could have been done earlier, and because we don't want to wait another 4 years. Would an appeal be beneficial? How would we go about doing it?
Poor you - what a terrible list of problems. I think you need to contact your PALs office - they will advise you. I used them and they were super helpful. I have no clue if they would make an exception for you on the ivf criteria. My hunch would be that they wouldn't make an exception rather you would have to make a claim for medical negligence independent of the ivf. I'm just speculating here.... Probably not helpful. A few positives - you are still young so there is time to sort things out. Also, if the criteria are one round only, that's fresh so if you got more embies you would qualify for a frozen cycle in addition. This is hard news to take in plus the way it's panned out for you sounds stressful. Google PALS and see how you get on.
I already have a formal complaint against the hospital in question, for which PALS have helped. It has since been referred to the medical complaints ombudsman, who tried to contact me whilst I was away. I'd rather not take further action with regard to legal action or anything, but potentially, to ensure funding, it may be our only route.
I am hoping to have some eggs frozen too, because at this stage, we are unsure as to whether both of my ovaries are functioning.
You need to appeal directly and specifically to your PCT re your IVF funding. Ideally get your gynaecologist to help you, or refer you to a fertility specialist (if they are not the same person) to get this ball rolling. I'm not sure how much help PALS would be - they are more about hospital complaints. If you go more for the fertility preservation angle (ie the fact that you do not know how long for/how well your ovaries are functioning) you may do better in getting your treatment brought forward - but they'd want a medical opinion on this, hence getting your gynae to write instead of you. Good luck.