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.

If you don't get any joy with options it herself have mentioned etc or your non-fertility private testing, something like below is a good option. Literally the same types of tests the NHS would do but conducted very swiftly and in a private facility. I had the same as this. I was already diagnosed with PCOS years before, this was a full check because it had been so long ago and I was getting older (mid 30s) so didn't want to hang around waiting if something could be optimised, also to check husband at the same time www.bournhall.co.uk/tests-treatments/fertility-health-wellbeing-tests/self-funded-options/
And unfortunately I too was bludgeoned with the BMI thing when first being diagnosed with PCOS and it was slightly over 30. I feel your pain (plus the woman who told me I was too overweight was significantly larger than I was, which sucked)

LEGAL ADVICE are you joking? 🤣

I’m sorry this has happened, and it would be worth pursuing a complaint if you feel able to it.

Don’t think of it as a wasted two years though. My experience was that no assistance was given whatsoever until I got my BMI below 30, it was a hard, inflexible line. Well done on your weight loss so far, it sounds like both you and your partner have done amazingly. Unfortunately they don’t really care about progress, just that BMI 30 threshold.

Hey OP, I hope you're doing ok. This thread has made me really mad on your behalf. Especially the weight comments. I had to also get my bmi down to 30 to be referred, which was tough at the time. Sorry, not read all the other posts but maybe this next set of investigations doesn't have as long a waiting list. Also, my scan was clear but my tubes were actually blocked, putting dye down the tubes unlocked them after years of not getting pregnant. Good luck, I know infertility can feel a lonely place. There are some great support threads on here

Thank you all!

Thanks for all the positivity too :) I'm trying to think of it now as more of a time where I could help myself as much as possible to get closer to the expectations they have (30 bmi)

Does anybody know if there's a weight / BMI range expectation for the male partner?

If you have your cyst removed the surgeon will have a good look around while he is doing the laparoscopy so will be able to tell you the state of your tubes etc. Once your bmi is 30 you will be able to carry on with your fertility journey & you might even find you have got pregnant unassisted, I did.

There wasn't when I was referred. There was a tick box saying "BMI <30" for me but nothing for DH. I found that annoying for lots of reasons! DH did lose weight alongside me (slimming world) but they never asked him for any details like that.

Firstly really sorry you are going through this at all let alone the extra mistakes. And well done for losing the weight.

Can you make sure your private referral for the gynae issues is with a gynae who also specialises in fertility? That is what I did. I had slightly heavy periods (although probably on its own not enough to have sought medical help), but as I was also struggling to conceive my wonderful gynae put everything through as related to sorting my periods. So I had all my tests, scans and laparoscopy paid for by my health insurance even though they didn’t cover fertility issues and then my subsequent ivf was paid for privately by me.

Good luck x

Contact PALS at the hospital. See if they can help bump you up the correct waiting list. So unfair if you have to wait again.

@shallwego I'm so sorry you've gone through this, I know how it feels. My husband, about ten years ago early in our relationship, suspected he had a varucocele in one testicle as he could feel something. This is like a varicose vein that warms up the testicle and reduces sperm quality, in his case drastically it turns out. The gp said he didn't have one, so some 8 years later when we decided to try to concieve, nothing happened! We only waited 8 months before getting tests as I was 33 and needed to get a move on, and his semen analysis was so low we would never concieve naturally. So the incorrect GP diagnosis gen years ago meant we pointlessly tried, and it was only my impatience that we didn't wait 12 months before pursuing referral. We also paid a private urologist tonexamine him to skip the NHS and they don't bother operating on vsricoceles if its not causing pain as some Dr's don't believe they cause infertility ... which they clearly do.

My husband tried to pursue getting faster referrals due to their negligence but the NHS works on need, and because it isn't life and death they said we'd go through referrals as normal. It makes sense but it's a kick in the teeth. The only way to pursue any kind of reparation was to sue the NHS basically, and we just didn't want to go down that path, in your case however I would at least make a huge complaint to the governing body, don't let this go unnoticed.

If you can, I would say you need to go private for soke tests, they can do a trans vaginal ultrasound to image your pelvis clearly even if you are overweight, this is normal practice so I'm surprised they gave you a trans abdominal one anyway. Get a semen analysis for hubby, get your AMH checked and an ultrasound, and if you can start saving for private ivf just in case. To give you a timeline, we gotnreferred for NHS IVF in about May and still haven't heard back from funding body though we sent those forms off 2 months ago. We're allowed private rounds without losing NHS ones so we decided to go private and had a round in August, and I'm now 8 weeks pregnant after ny 2nd transfer in October (first didn't work).

If you have any questions about IVF please do DM, happy to help xxx

I’m sorry that you are going through this I do understand as I went through infertility problems 30 years ago.
Are you sure that you can’t go through the private option even for an initial consultation which will move things along?
We paid privately and yes it was expensive but so is having children. It’s not just the cost of food, clothing equipment etc but loss of earnings if you stay at home/return to work part time, or the cost of nursery fees if you return full time.
I would try really hard cutting back to save money and put your energy into getting pregnant rather than pursuing an already overstretched NHS.

Many of the consultants do private too but mix it up. If you can find an nhs consultant from your trust that also does private. You could see if they will see you privately initally (cost me £120 for 20 minute consultation) but he was lovely and said if basically sped up the referral as its the inital consultation that you need first. He was happy to do bloods on the nhs and went back to the nhs file to issue them. (Saved us £1400) and then I paid another £120 for consultation to discuss. Then my referral for nhs arrived and since then all appointments have been on nhs.

But defo complain and see what they can do!

I think that’s a healthy attitude to have as even if you had been referred to the correct place, you wouldn’t have received any help anyway. You need to just focus solely on being healthy (both mentally and physically), and losing that excess weight. Don’t waste your money on going down the legal route, the outcome would have been no different regardless.

Make sure your records are correct though, that is important.

Definitely contact PALS! We had a similar situation with our DC and they managed to push us right up the new list and get us a much quicker appt. They also paid back all our travel costs for the first pointless appt (we had to travel a long way to a specialist centre).

In the mean time, I know you've already lost some weight, but you do really need to try and get your BMI below 30 before your new appt, or the Dr is right, there's a good chance they'll refuse you treatment anyway and you'll be back where you started. My friend is in that exact situation. Really sorry to say it because it's probably the last thing you need to hear, but it would also be awful to wait months or years more only to be turned away immediately.

How frustrating to be told to lose weight when you have been doing just that. As if it is that easy! I would complain about his rudeness and also the mistake made by the gp. Sadly, people who make a complaint are the very ones who get their problems taken seriously and get seen sooner than people who wait patiently.

good luck.

The ombudsman won't do anything if the trust hasn't had the opportunity to respond to the complaint and put things right so you need to complain to them first (or the gp if it's their error). You skdk need to complain about the inclusion of someone else's information in your record, this needs to be reported as an Information Governance breach. If you want your records you can make a subject access request to the GP or hospital depending on which records you want. I would also expect the hospital to fast track you on the correct waiting list st given the error.

Another mess up by a GP practice. Doesn’t surprise me, I’ve been put in hospital twice by GP mistakes.
How to complain www.ombudsman.org.uk/sites/default/files/How_to_raise_concerns_about_a_general_practice_0.pdf

Good luck with your private treatment, I hope it gives you answers.

There's no point starting expensive treatment with a too high BMI as it severely affects fertility. Nothing to do with rudeness.

I am so sorry to hear this, you’ve both done so well so far.

I have been on the NHS Fertility referral. I had a laparoscopy, blood tests, tried Clomid (ovulation forcing drug), a scan I can’t remember the name of, more blood tests, all came back clear (yours may indicate an issue they can then help with). Then they said I had to loose weight to under 30 BMI to be referred for IVF.
where you have IVF depends on who won the NHS contract for those two years.

The hospital I had was an NHS hospital and I found this one not helpful, mistakes aplenty and unfriendly (prob bad luck as I’ve heard of excellent elsewhere, prob just totally overworked). IVF never happened in the end so I saved up / borrowed and went private - totally different approach.
Basically, if you can go private I would totally look into it as there will be more hoops to jump through when you do get your appt. If you are under 35 you could look at egg donation which reduces the costs considerably. This may not be for you, but I just wanted to raise some options to very carefully consider. You can also have tests done privately so not just straight to IVF, their tests are more wide ranging than NHS ones. I had tests and all came back clear, good in one way, but not having anything to ‘fix’ was difficult to pinpoint what to do. Apparently many women come back clear. Remember to get hubby checked too - just in case (his would be an easy check by the GP I imagine).

Good luck, never give up

You don’t want a conversation you want to complain in writing factually as you have and then impact on you and your husband step by step

then you need to send a copy to the Gp practice manager, the department you went to and PALS and say in your bottom paragraph to have waited two years, have a hugely upsetting reveal of an incorrect referral and then be set back over two years - is unacceptable and that you want to know why your notes were incorrect, who is responsible for the hugely incorrect notes, why you were referred the the wrong department, a referral to the correct department but to be moved up the list as you have waited two years already and with infertility time is so important. I’d also address the shock of the dismissive attitude when you went in for the appointment and were still reeling from the news to have a top medical profession just dismiss you and not even offer support for making a complaint or seeing how the error occurred and what they can do as a hospital to rectify it - is pretty appalling.

Everything in writing

Private cover won’t cover fertility treatment , but it can cover other procedures that may be impacting it. I had laparoscopy done for endo which was covered. So worth getting the tests done, and for your husband to get an analysis.

unfortunately weight does impact ivf and fertility so just keep continuing to stay healthy. I’ve heard keto type diets work well ! I’ve had multiple IUI and ivf cycles and read a lot.
also look into IUI as a private option. A lot cheaper than ivf and it does work

take care

Awww I'm so sorry you've had this experience OP. It's not good enough. I'm a GP and have had fertility treatment so understand the stress and heartbreak involved. I never encourage this lightly but in your case I would be complaining to PALs and asking for a root cause analysis. It aounds as if either the GP or secretary have referred a different patient's history under your name or the hospital have put the wrong referral in your notes or the consultant had the wrong patient's notes in front of him. Either way a mistake was clearly made which caused you great distress and delayed your care and also could be a huge GDPR issue.

It sounds like the consultant approached your weight in really insensitive way. However, I feel duty bound to advise you that weight is a massive issue in pregnancy. Any BMI over 25 for mum is associated with poorer egg quality and higher risk of birth complications. For that reason a really proactive thing to do would be to really focus on weight loss. It will take time to lose weight too so it's good to think about this now. If your BMI is over 30 and you're trying to conceive then please ask your GP for high dose folic acid and take this daily as its recommended support healthy early development of baby

All the best OP. Hope you can sort this x x

@shallwego

I'm a GP. A mistake was clearly made and you are owed an apology. However, you've lost nothing. We can't refer patients to fertility clinics until the woman's BMI is below 30, so if your GP had referred to the right place it would have been bounced. I've had patients who I have referred at a BMI of just below 30, whilst waiting for the appt they have gained a few kg and they have been seen once and discharged for a re-referral when BMI is below 30. Your care has not been delayed by this mistake, it's been delayed by the time that weight loss takes.

Unless local arrangements in your area are very unusual, your GP should have given you general advice and said come back for a referral when BMI <30 .You can google 'nhs fertility policy (your area)' to double check the criteria.

Huge congratulations on your weight loss - get that final bit done and ask for a referral when your BMI is below 30.

No, not correct, as a referral with a BMI over 30 would have been bounced so she has lost nothing. Please don't give incorrect information.