To complain about GP's incorrect referral?

[shallwego]

Hi all.

Sorry it's going to be a long one!!!

So following from a discussion I've had on another thread.

I have been suffering with infertility for the past 3 years. My DH and I have been tracking everything we possible can, and it's just not happening for us.

Around 2 years ago now, I contacted the GP at my doctors surgery to ask for some help and guidance. I had some blood tests carried out, and they came back clear. At the time, I also had a pelvic scan done which was also okay, but they did advise they struggled to get a super clear image since I was a little overweight.

I was told I'd be placed on a waiting list for further help in the fertility department, and so I've waited patiently to be contacted by this department.

In the meantime, DH and I took care of ourselves as much as possible, continued trying but tried to relax a little to see if the 'relaxed' approach would help, but it didn't.
We decided to both have weight loss surgery to aid in our chances of conceiving, and also for personal benefits and reasons, and this has worked really well for us. We are 18st down between us now and so so much happier and healthier! We have been given the all clear from our surgical team to confirm TTC. They're extremely happy with our progress.

I got a call around a month ago from the NHS, and was told I was finally at the top of the fertility waiting list! I was so, so happy to finally be getting some guidance. I awaited my letter in the post for my appointment, and when it finally came through I attended the gynaecology department as per the letters request. I was due into the appointment at 3:30, but ended up waiting in the wait in room for over 2 hours before being seen.

I went into the dr's office at 6.40 and sat down to hear about my next steps. Confirmed my details, DOB etc etc and he began reading back through my medical notes and history. He began talking about some of the notes he had on file, and all was okay (blood work, scan etc)

He then began discussing my 'consecutive miscarriages' at 10-15 weeks pregnant' and began to apologise for the losses etc. I was shocked COMPLETELY.

This isn't me. These aren't my notes. I haven't ever been lucky enough to fall pregnant, so I was utterly confused. I told him that this was incorrect, and he looked completely confused too. He continued reading through these notes and the rest of the information was mine again... but these consecutive miscarriages weren't true.

He asked me how this happened, and I honestly have no idea. He then continued on to say that since this isn't my information, and we are not completely sure I'm even able to GET pregnant, I'm in the wrong department. I would need to go back to my GP for a re-referral to the infertility specialists. Completely cold and matter of fact.

I was so upset and frustrated at both the length of time I'd waited in his waiting room just to hear that, and the fact I've been on the waiting list for the wrong department for 2 YEARS. I was just a sobbing mess.

He dismissed me, but before leaving the room he also said 'also you need to cut back on the junk food. You're still obese. The infertility team wouldn't give you so much as a look-in when you're BMI is this high' I asked him what my BMI would need to be. He said it's currently 34, and needs to be 30 in order to be considered. I explained to him that I've had weight loss surgery and have been trying so hard to bring my weight down to help in conception.

When I left the room, I was in absolute floods of tears. I'm absolutely heartbroken that I've been referred for the wrong department and wasted SO much time waiting for this appointment, only to be referred back to the start again.

I contacted the GP reception and advised on the situation, and was called back by my current doctor (the one before who mid-referred me isn't looking after me anymore). She's taken all our info and put us back onto the correct waiting list, but couldn't advise me of how long this may be.

What are my options now? For all I know these past 2 years could have been critical for us - and we've waited for absolutely nothing.

My mental health is so low following this, I don't know how much more I can actually take.

Please don't think that that post was genuine. Some people are sad losers who spend their days trolling parenting websites 🙄

PALS - go to them at the hospital and tell them what has happened and demand that you go to top of infertility waiting list as you have already "done your time" waiting for the wrong appointment.

What a total cock-up - of course you are upset!

It's just a very very sensitive topic.

I suffered hugely with my MH in years gone by and my the just piled on.. I didn't care enough about myself at the time to realise what I was doing.

I'm happy to say I'm doing really well now, and took the positive steps of having my surgery done to keep me on the straight and narrow going forward. It's really worked for me and I'm delighted with my results so far.

I definitely had body dysmorphia before.. but the reverse of what others normally experience. I really didn't realise how big I was.

I've gone from a very high BMI to now 33. I know it's still overweight but I'm actually really proud of it so far! and am of course continuing to loose the weight to become as healthy as I possibly can.

Not much help to you OP, but I just wanted to say you sound like you have the same issues as me, regular but heavy periods with a lot of clots, and terrible ovulation pain. My infertility is unexplained. But we did find out I grow follicles, but they never mature enough, so pointless ovulating really. My first son we needed ovulation induction (clomid), my second son we tried so many rounds of ovulation induction (gonal f injections) but ultimately needed ivf, where they also discovered semen issues so we actually needed icsi. There’s no explanation given for my ovulation pain, I’ve had it since I was 16, it’s crippling.

ask your GP what other testing they can do themselves while you wait. Semen analysis, AMH, can they refer you for a hycosy scan to check your tubes?

I’m in Australia and I’m horrified. This just wouldn’t happen here, you would be pushed to the top of the queue.

I think you'll find that thread helpful, as everyone is in the same position. For me, having a goal to work towards really helped. Nothing focused my mind like knowing I could join the list once I hit the BMI. It spurred me on too, as research shows that a healthier weight really helps with IVF outcomes, and pregnancy too, if you're one of the lucky ones.
I wouldn't waste too much headspace on complaints. You can't join the waiting list until you are under 30 BMI, so I'd use the time and energy to get yourself in the best physical and mental shape before you start. Good luck!

i am not sure it was the GP, perhaps the hospital who gathered the wrong information.
to pals is the answer

When you go on the new waiting list ask if they will mark you as already waiting 2 years, so you don't go to the bottom of the list.

Slightly different situation, but I did this for my daughter when she was waiting to be seen by a children's autism service (very long waiting times). When we moved house I asked the new service to take into account the amount of time she had already been waiting so she didn't go to the bottom of the list.

Good luck, sounds an awful situation for you.

Unfortunately, I dont think there is much you can regarding the wait time for the new referral. Hospitals can be really unmovable around waiting lists.

I'm not entirely sure how they got the wrong notes when the referral was made under your own name so I would ask your medical records to find out if it were a GP cock up or a hospital one.

You could always find a private gynaecologist who also works for the NHS, get the initial appointment as private and get the consultant to transfer your care to the NHS. It might cut down your wait time.

Keep going with the weight loss, I think BMI can play a big part in fertility. I was the other end of the spectrum and struggled to gain weight, they never identified my issue but I do wonder if this was it.
Unfortunately waiting list with NHS is normally quite long. We were with NHS 1st time round and then had to pay to go private 2nd time as we already had a child. Once you go private it is all very quick. I was lucky and got any tests on NHS and then paid privately for treatment. It is expensive so go in with your eyes open and obviously there are no guarantees. I got a 0% interest credit card to put ours on and then just paid off gradually.
In the end I actually conceived naturally both times although potentially the medication kicked me into gear 2nd time. It can be a long old slog so I wish you all the best and hope you can find a kind consultant which really helps xx

Hi - well done on the weight loss.
sounds like a massive achievement.

Have you considered contacting your MP - if you are lucky enough to have a good one.
they can sometimes help in situations like this as they often know the Chief executive of the hospital.

I’m a doctor, working in both hospitals and GP land. I very much doubt the error came from the GP, because the patient’s past medical history is automatically generated from their electronic record, when you do a referral. Much more likely a hospital cock-up, so I agree with raising with PALS.

I'm sorry but this is getting daft. Legal advice, pals, now an MP?! For what?!?

OP you've been through a torrid time and I'm very sorry. I can on to say what the GP posted higher up which is that actually, you've not lost any time out due to mistake. Your previous weight would have prevented you being seen anyway, so you'd still have had to wait to be referred until your bmi is under 30. It sucks, but a correct referral wouldn't have gotten you seen or helped in the last two years. Please don't try and sue, elevate or heaven forbid go to the press on this!

Having gone through fertility referrals they would have sent you away(and left you off the waiting list) until you reached the right BMI so technically you’ve not lost anytime.

First of all - huge congratulations on your weight loss and your massively constructive use of time. This must have took some mental will power and challenges to make some big changes and you should feel really proud of yourself.

take a look at the fertility detective on instagram. She is really interesting and specialises in fertility issues. She has some great posts that break down the current research on different areas and emphasise the importance of looking at the whole picture. Also, there are some clinics that do some basic testing at more reasonable prices so it may be worth looking around if you want to rule out certain things whilst waiting on your NHS appointment. I think you should rule out PCOS. Sometimes you don’t need to have all of the symptoms for your fertility and hormones to be affected. Medichecks do an interesting hormone panel test that can tell you what your LH, FSH and testosterone levels are doing.

good luck x

You've done brilliantly to lose so much weight, well done!

A couple of things to think about:

Your significant weight loss may have improved your fertility - it does for pcos, and can for endo.

Usually when women have weight loss surgery they are strongly advised to delay TTC for at least 18 months because that type surgery and the results of it really impact hormones, vitamins, minerals etc in the body which are needed for a healthy pregnancy.

Your pain sounds very much like mine - I have endometriosis and a 5cm cyst on my right ovary that I'm waiting for surgery for. (I also have PCOS, but that has different symptoms).

Keep working at the weight loss - I went from bmi 40 to 29 to get fertility treatment - my Clomid baby is now 11. I didn't have surgery, and my PCOS and endo "helped" me gain it all back after. Joy.

Good luck! You haven't actually lost any time, because you'd have been bounced back to the beginning anywhere before bmi 30 - it's just awful that you were given false hope that you'd get treatment before you reached that, so keep going and you'll get there.

I really wouldn't go down all these avenues trying to complain. Neither your MP not PALS nor a lawyer can change the fact that you can't join the waiting list until your BMI is under 30. Similarly, if you have any gynaecology issues, they need sorting before you have fertility treatment. You only get one shot at NHS fertility treatment, so make sure you're in the best shape, physically and mentally, before you start.

Weight loss for IVF 2021/2022 www.mumsnet.com/Talk/infertility/4408690-Weight-loss-for-IVF-2021-2022

This is the thread I mentioned, loads of great tips here from women on the same journey

You're an asshole.

A lot of useful and useless info here. Secondary infertility experience here, largely unexplained like a lot of cases are. It is a very expensive and chronically underfunded area of the NHS. I ultimately took matters in to my own hands. Paid £200 for fertility MOT at a local private clinic, they did bloods and scans that checked my reproductive organs etc. bloods checked hormone levels and AMH which is a good indicator of the number of eggs you’re producing each month. Husband also had semen analysis included. I researched supplements, diet, exercise etc had acupuncture etc. it’s a really tough road to travel mentally and physically so I can relate to how you are feeling. I would get as much as you can do yourself as sadly there will be long waits and limits to what can be achieved via the NHS. Check out the charity Tommys, they have some excellent research and resources. I believe they work with specialist clinics in London (St Mary’s) and in the West Midlands who you might be able to ask to be referred to. All worth a go to help you feel like you’re doing all you can from your end- this certainly helped me feel stronger and more empowered during some very dark periods.

Please read the book It Starts with the egg, totally transformed us.

similar experience, very heavy periods, heavy clots. I battled to get my weight down too, hate to say this but I think if you need fertility treatment you’ll end up going private (if that is possible for you)

I had 5 rounds of IVF before I had my twin girls. For 4 rounds my egg quality was appalling. We then took a few months out, I cut out as much plastic in our diet as possible (such as bought glass containers rather than plastic etc) I also took a really high dose of ubiquinal Q10. On our last round we get 8 day 5 blastocysts (that is amazing). We also had blood thinning drugs from embryo transfer. I had 2 embryos put back - they’re nearly 4 now and are sat on my knee.

its a hard slog, but unfortunately, in my experience, your GP will do the rudimentary day 2/21 blood tests, as well as getting your FSH levels.

good luck, I wish you all the best

Your symptoms sound like mine, I have endometriosis. I went private through my insurance as I was having difficultly conceiving, however we didn't mention anything to do with fertility on the referral, it was all in regards to my symptoms and suspected endometriosis. I got a scan then a lap and dye - the following month I was pregnant! Maybe something to look at.

The details being wrong is not acceptable and deserves a complaint to PALS but as an expert in this area has already commented (the GP who does referrals), they cannot refer until your BMI is less than 30 and any referral with a higher BMI would be rejected. Your BMI has to be below 30 for a referral to even take place otherwise it is a waste of time and resources to make the referral which will be automatically rejected. You can Google the criteria for your local area easily.

You have done amazingly with the weight loss and that is a huge achievement and you know what you need to do. But no time has been wasted at all and some of the advice here is bonkers! The details being wrong is awful and PALS can help there but your referral for fertility services has not been delayed!

I’m so sorry that this happened to you. It’s awful and you are not being silly at all. I’m sure there are nice male consultants out there but in the main I have found them to be detached and rude and I don’t understand why.

Sigh. OP is not yet eligible for referral with a BMI over 30. So her care hasn't been delayed.

no they won't. As she is not yet eligible for referral. Gosh there's a lot of armchair expert here.....