I really need some help with what the heck I'm supposed to do next. Still can't quite believe what has happened so apologies if this is all a bit incoherent, but basically I found out last Friday that my in my diagnostic "see and treat" laparoscopy last March the surgeon (general gynae.. will explain later) saw the endo, but despite what had been agreed in my consent form and discussion with her, did not treat it. I'm feeling all sorts of emotions.. frustration, confusion, anger, stress etc etc., so if you're happy to keep reading please give any suggestions you've got.
Basic story: went for diagnostic lap July 2016 but was cancelled as I had recently had a cold. Went back for same diagnostic "see and treat" lap in March 2017 as there was a cancellation on the list, but only found out on day of surgery that it would be with general gynae, not the specialist consultant that I was under. Came round after surgery and could not speak to the surgeon as she thought I had gone home (?!), so went home later that night with no information. After 5 weeks of constant chasing up, finally had an appointment with my GP after she received the discharge letter who told me endo had been found and removed, and that I could be re-referred if there was no improvement. Pushed to be re-referred in November 2017 as still had all the same symptoms as before, and finally had consultation with my original endo specialist consultant last Friday.
On Friday I was told my consultant "was confused about what happened during my surgery" as although the surgeon had been instructed to remove any endo, she simply didn't, and nobody knows why. Nobody had checked the notes, nobody was aware that it hadn't been removed until 20 mins before my appointment last week, nobody had any answers, just apologies and an urgent re-referral to be put on the list (6 week - 3 month wait). My consultant was very apologetic, and insisted that there would be an investigation and strong letters sent to my GP and the surgeon who performed the operation to find out what has happened.
I don't think this is good enough. The past 12 months I have felt like I'm going crazy, like my pain can't be real because they treated endo and I was on the pill, like I was a fraud. But through no fault of my own I have endured an extra 12 months of needless pain, when I had been completely misinformed about my operation. I have had my symptoms since the age of 12 and have been to the GP about it for the last 8/9 years since I was 13/14. I also was initially referred in July 2015.. so 2 years 8 months ago.. and still no treatment.. hardly inside the 18 week guideline for maximum waiting time!
I plan to make a complaint with the help of local organisations, but was wondering if anyone had any suggestions on what path I should take and how I should go about finding out exactly what happened and receiving actual treatment without being fobbed off.
Wow okay that was long, so thank you if you're still reading!! Any help is massively appreciated, I am at a loss.
x
Written by
Myfanwy21
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Hi, I’m not surprised you’re upset. Sounds like someone wasn’t being honest in March 2017. Given that it was a general gynae rather than a specialist, maybe it was good that they didn’t try to do something they didn’t have the skills for, but why they weren’t honest about that beats me.
When things go wrong like this, there has to be an investigation. It’s usually done by two people who understand the area of medicine but are not directly connected to the patient or staff involved. They should be appointed within a couple of weeks and have 60 days to complete and make recommendations. You have a right to be interviewed and contribute your perspective, also to see the final report. So if it was me, I’d be trying to find out how investigations are organised at the hospital and who is going to investigate this incident.
Just be aware that although that’s how investigations should work (as far as I am aware), the time scales often slip. The process is generally under resourced. But if you are asking questions (maybe via PALS?) that should help.
A letter of complaint is also a good idea. I suggest you address it to the chief executive of the hospital.
Hey thanks for replying, I took some time away from everything the past few days so sorry for not replying sooner. Really appreciate your informative input, during the consultation last week I was too shocked and confused to ask any useful questions. I have contacted my local community health council and will have an appointment with one of their advocates soon to help write a letter and structure my complaint in a way which will get me answers. Just so frustrated at the number of failings throughout this whole process, from GPs to consultants. Thanks again, hope you're well x
Contact some medical negligence specialists, if you’ve had to miss work because you’re in pain etc you might be entitled to claim back any money you’ve lost, I’d still contact the medical negligence specialists because they’ve kept this from you for so long!! X
If I had paid privately I would be going down this route without a doubt, but I think we're all aware of how stretched and underfunded the NHS is at the moment, so I don't think removing more money from the system would be helpful for anyone.. especially as I'm in Wales where there is only one endometriosis centre and only three specialists (crazy right?!). Thanks for your response though x
You can still go down the medical negligence specialist route but ask for the money you’d receive to go on proper training etc, donate it back almost! It’s mad! My nearest one is 55 miles away! Only 1/2 the population are women and 1 in 10 suffer with endo and all that! Xx
A negligence claim is an option, but personally I wouldn’t go down this route (and I have received poor care myself). The cost of clinical negligence claims is rising at a faster rate year on year than NHS funding, “adding to the financial pressures already faced by many trusts, which can have an impact on patients’ access to services and quality of care”.
Hi, how awful for you, it is totally unacceptable to be discharged without any information about the outcome of your surgery.
All hospitals have a complaints procedure policy. You can request a copy or visit NHS Complaints Procedure - NHS Choices online. This will guide you and tell you what expect for example, you should receive acknowledgment and offer to discuss the complaint within 3 working days.
Hi thank you for your reply. I'm meeting with someone from my local community health board who will help me write letters and attend any meetings about the complaint with me, because I just don't want to end up being fobbed off again. All I want from all this is just full and transparent honesty about why the surgeon essentially didn't do her job on the day and why I was at best mislead and at worst lied to for 12 months. I had a look at the NHS complaints procedure, but didn't want to do it without external help in case it threatened my chances of getting a thorough investigation, so I'll go through it with the people from the health board and hopefully get the right answers. Thank you x
I think you’ve made a very sensible approach it’s easy to let your frustrations get the better of you in situations like this. You deserve answers and they need to address the problems/pain you have been suffering for the last year unnecessarily.
I work in the NHS (nurse) and this may not be answered quickly. Keep the pressure on. Good luck with everything xxx
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