Frustrating process/need to vent

[Blubelll]

Hello, unsure if anyone will read as this will probably be long but at this point I just need to get it all out.

I had read/heard about NHS fertility treatment in England being a difficult process but I had no idea just how stressful it would be. The whole process has been a complete mess, and we aren't even there yet. No departments talk to each other, zero communication with us, unhelpful receptionists, only finding out major things on the off chance that can affect how we are treated.

We first went to our GPs in July last year, I was told by my GP to be wary about having to advocate for myself and chase things up as there aren't good systems in place. So I booked all my tests, and my partner booked his sperm test. Everything comes back fine for me. He got his sperm test back in November, reading no sperm. My GP and our new fertility Dr advised to get a 2nd. However the 2nd one couldn't be booked without a referral from my partners GP, who wouldn't even answer the phone (it just rings out). It took from getting the first results in November to the end of February for him to even get an appointment. So he finally gets booked in for the 2nd test and get the same results back.

At the same time I'm told I need a fallopian tube xray, even though "we know it's actually not needed for you, but it's just to tick boxes". Booking this took 3 months in itself, I understand that it needs to be done at a certain point in your cycle and match up with the 1 afternoon a week a Dr is available to do it. But I had more issues than that, referrals not being sent, being told there's no note on my file. Turns out I had 2 nhs files and half the time when I called the person was looking at the wrong file, so appointments got filled up whilst that was sorted. I was told to book on the wrong day. Next time I got the right day, I was told the drs contract had ended so they just weren't doing the test any more in my local hospital. I had to travel a few towns over which is fine but, to book that it took 26 phone calls and 4 hours to get it booked due to being given incorrect numbers, being passed around and hung up on, the 'no note on your file' issue again.

That's now finally done, we have all our genetic and hormone tests back and it seems the issue is my partners LH levels are too high. So our fertility Dr referred my partner to Complete Fertility for sperm extraction to see if ICSI would be suitable for us. 6 weeks go by and we don't hear anthting, so we call ourselves and are told there's been no referral. Called fertility drs secretary, she says no I have sent it. Called CF back again, sorry we can't help you there's no referral. It's only when calling back again a different woman tells us they have 2 booking systems and the other people just didn't look at the other one?? Is this not very basic admin stuff??
We are then told no appointments until September but aren't allowed to book for then as none of our test results have been shared with them. We have only ever had results shared with us via the phone, never via post aside from the sperm results.

Also they need all test results to be less than 12 months old meaning most of mine are now out of date. So by the time I book these and chase the results, I'm scared the September and even October appointments will have gone.

The woman at complete fertility casually mentioned that they can't apply for funding for us unless both my partner and I are referred by BOTH our fertility Dr AND our sepertate GPs. As it stands only my partner has been referred by our fertility doctor. No one has ever told us this. She said the funding always comes from the female partners side so as it stands even if we do get an appointment in sept/oct we wouldn't have been able to apply for funding as the correct processes have not been followed.

I'm at my wits end. I'm told I need to be referred by my 35th birthday which is December next year. Still 18 months away but at the rate we're going at the moment I don't hold much confidence that things won't be sorted by then.

The no sperm/high LH levels results really knocked us but there has been no emotional support surrounding this either. It's a quick phone call, we have never even met the fertility Dr in person to go through things, ask questions about what this could mean etc. It's a stressful enough situation not even knowing if sperm retrieval would be possible, but add on the waiting and the convoluted process in top and it's taking its toll. We are hoping and trying so hard to save money in case we would need to go private down the line, I've taken a 2nd job and we are starting to argue.

I don't understand why an already stressful experience needs to be made so much worse by basic admin issues. Please someone tell me it gets better.

You poor thing!
It is VERY stressful, especially male infertility. We have paid for a private male fertility consultation as were told it would be 9 months on the NHS.
It took 17 phone calls, 3 GP appointments and the practice manager intervening twice to get a referral to the only NHS fertility clinic in our area which deals with male factor issues.
I am not looking forward to moving forward in the process given the crushing bureaucracy, but my advice is:

1. To keep phoning every day you can.
2. Asking for escalations to management if they try and fob you off.
3. Logging the details of what has happened in a spreadsheet and following up every appointment with an email to get test results in writing.
4. Pre emptively book GP appointments, you can always cancel if you don't need them.
5. Chase any referrals 3 working days after they are sent, so many get misplaced it is unbelievable.

It's so sub optimal but realistically this will make the journey easier as in this case only the squeaky wheel gets the oil, (as it were!). Sending hugs and good vibes.

We've had a nightmare with the NHS too. It is extremely frustrating that none of the departments talk to one another. We fought for our GP to refer us initially and went out of our way to make sure all the tests got done and were so relieved after months to finally get a letter through to say that we were on a waiting list for our local fertility consultant only to get another one 10 days later stating that we had be removed due to 'consultant request' with no further explanation and had to start over.

We ended up paying for a private fertility MOT whist we were waiting to see the consultant wich did speed things along a little since we had test results to give to her when we had our initial meeting so there were a few things i didn't need to wait for the nhs to organise. But even so we've been at this for over a year now, (not including the time that we spent TTC before we went looking for help) and this is the first cycle that I've had any sort of treatment.

I have also had the same issue of somehow having 2 NHS numbers/accounts, We've had missing test results, decimals in the wrong place so results didn't look as bad as the actually were, the consultant telling me to book ultrasound scans on certain cycle days and then the ultrasound team telling me that those days would be impossible for what they're looking for, missing prescriptions, cancelled appointments, they have even pulled my mum's phone number from who knows where and have been sending her texts about my appointments even after me telling them that that number has nothing to do with me and asking them to remove it... it's honestly endless.

I'm sorry that i don't really have any advice as I'm still trying to figure out how to navigate this nonsense myself, but I just wanted to let you know that you're not alone in it as there have been days where I've felt almost like it has been a personal attack from the NHS (or the universe) and that can feel so isolating xx

Thanks so much both for your replies, it helps to know it's not only us. It sounds like you've both had an equally awful time of it, I still can understand how it can be this bad? @TheFanciestPants really good tips there, thanks so much. @Jaydrives it sounds like you've had even worse experiences than us if that possible 😢

If you don't mind me asking how much were the private consultations? I wonder if it would be worth paying juts for the consultation if it helps get on further waiting lists sooner.
Thanks both, really appreciate you taking the time to reply.

@Blubelll no worries and very happy to help. We are in London and went to one of the top male infertility specialists (Miss Pippa Sangster who is at UCLH). I think that was £300ish, ultrasound was £400ish and we also had some blood tests for genetic conditions for my husband which were around £650. All of those tests are needed for NHS IVF and the genetic one takes weeks to come back so there's a significant time saving.
I got my initial fertility stuff done via my health insurance and saw Miss Jackie Ross (King's College Hospital Consultant gynae). I think her prices are a little lower and my initial consult was £275.
They are both doing private clinics at King Edward VII near Marylebone on a Wednesday and I am sure if you emailed and wanted to see both on the same day for various things they'd be really helpful (if you are based elsewhere and to minimise travel).Both are really nice and are keen not to do unnecessary tests and avoid expenditure (where they can!).
We did manage to get another SA via our GP so you could try that route too. Our GP is very kind and given the administrative nightmare has been good at ordering tests for us.

We're in Devon and paid around £300 for an initial fertility mot with CRGW. That was bloods and an internal ultrasound for me and the standard sperm analysis for him, an initial consultation and then a phone appointment when they had all the results back. Our issues are pretty much all me, hubby has slightly low morphology but nothing drastic. They were really nice and spoke us through what they would advise we do and were really upfront about what it would cost and when we told them that we were waiting for our NHS referral appointment they happily sent everything over for us and it definitely sped things along. We've even emailed the private consultant with questions a couple of times when the things the NHS said weren't making sense and they have been really helpful so I'm glad we did it.

Thank you so much for your replies. We have (sort of) got somewhere. We just had a call with our fertility Dr who is confused by the misinformation we've been given by the clinic he referred us to. I also had a call with my GP today after asking about why I needed to be referred by her to the clinic when our fertility Dr had referred us. She actually said "I'm so confused"... So I think there is just a serious lack of communication and major confusion happening somewhere.

I don't need to update my tests just now in case the waiting process is so long they go out of date again, and we have an appointment with a an urologist in September after they received our results. So for now there is nothing else to do but wait. But it's still super stressful that communication had been so bad even my doctors are confused!

I realise this is a really old thread, but I was looking for Pippa Sangster's name and it came up. @Blubelll where did you get to in the end? We are in a similar position, navigating NHS has been an administrative nightmare, advice from the private andrologist appt we booked because we didn't want to wait contradicted the NHS andrologist completely (that appt. came in the week after the private one so we thought we'd go to both). Very confusing! And not what you need when it's already quite stressful to go through.

I gave up with the NHS and went private as the waiting was negatively affecting my mental health. I appreciate I’m fortunate to be able to do this

@whysohardtogetusername sorry to hear you are in this position.
An update from me, my husband and I are now the very proud parents to a little boy from our NHS IVF cycle! Let me know if I can give you any info to help x

That's lovely news and thanks for the offer! I am taking Christmas off but will be back at it in the New Year, need to chase various test results 😅x

Hey @whysohardtogetusername apologies I took so long to respond! Reading back on my original post reminds me how far we have come. We eventually got approved for funding for our 1 free round in February 2024, but we had a lot more hiccups after that. My partner had a micro tese but got an infection resulting in 3 999 calls and 2 failed discharges from hospital.

We were finally in a position to begin with our clinic rather than GPs and hospitals, had an appointment with a consultant at the start of July- and then just didn't hear back from them. By this time we had been told they would need to be quick to re-apply for the funding before it ran out. But they only re-applied to extend it after we had to chase them.

We finally got the go ahead, turned up for our first appointment and was told by the admin team that they had mad a mistake, the 2 people we needed to see that day were working from home.

That's the moment I lost it. I know not every issue beforehand with the NHS was our clinics fault, but it was the last straw. I burst into tears in the waiting room and my partner demanded to speak to someone high up. We spoke to a manager and outlined everything that had happened up until this point, and she was shocked. She said she would go away and look at our file and call us that afternoon. She was so apologetic and shocked at the amount of problems and delays we had had, and said from an admin perspective she would be taking charge of us as patients.

Since then everything changed, we've had very good service from her and the clinic during our first 2 rounds (now in the 2 week wait after transferring 2 frozen embryos). Hopefully it will happen for us but with the amount of issues we experienced with the NHS, it would make me incredibly nervous if anything were to go wrong.

I hope things go a bit smoother for you this year.