To be so frustrated by IVF on the NHS

[SquashedSquashess]

My husband and I need IVF to have children. We can self-fund, but I’ve been inclined to take our NHS entitlement first, after years of us both paying higher rate income tax and the significant cost of IVF.

My experience with the NHS has been:

May appointment: told we’ll be eligible in November to start treatment. We complete all the required forms and bloods. Doctor mentions my husband needs to be weighed before she sees us in November.

October: I call to ask about arrangements for my husband’s weigh in. It’s explained it needs to be done by a GP and emailed to the clinic. DH arranges this. A week later I’m calling the clinic, who can’t find the email with his BMI. I was cc’d, and directed them to the date and time it was sent. Told we’d now be given an appointment by the bookings team.

Today: I call to check if our appointment is in the diary. Apparently the doctor has today entered on my notes I need an AMH test. Fine. I ask when we’ll have an appointment once I’ve done that - mid December.

I ask if that is the appointment where I’ll start meds. No, it is the appointment where I’ll be told about the risks - which I already know, we discussed this at length in our May consultation as I have PCOS.

When will treatment start? Turns out egg collection can’t be done until March / April, and as I have PCOS I will probably be on a “freeze all” protocol, unable to do an embryo transfer for another two months I.e.: June.

I’m just exhausted at having had to repeatedly advocate for appointments, understand what’s going on, and having been given the impression we’d start in November it’s now going to be April with another 2 months until embryo transfer, which may or may not be successful.

I’m at the point of resigning myself to self-funding. Yes I know we’re fortunate to even be able to consider it, but I resent that I’ve waited to be eligible for NHS treatment, only to find it will be another 6+ months until I get to embryo transfer (if I’m lucky first time). If I’d known, I’d have just started treatment when I discovered we needed it over 6 months ago.

We were eligible for 1 NHS funded round because of the rules where we live. Referred in the October, started treatment the following March, and even that felt like a lifetime lm
I can fully sympathise with the poor communication and endless waiting for people to do their jobs. Especially when you feel just so desperate and dependent on them.

Wishing you all the best with it. The Infertility board on Mumsnet was a great support for me.

(Full disclosure we then paid and were successful after another several more tries.)

Its really crap but at least you 'only' wait for IVF. There are people with serious life threatening illnesses who cannot access timely treatment on the NHS. Neither is right but maybe putting it into perspective helps.

It is so rubbish. If you can self-fund I would just go for that now given the dire NHS timeline. I absolutely understand the principle and how entirely frustrating and unfair it is but if your bigger end goal is to start a family and you can afford to then ultimately that is more important (and as you know you are lucky in that respect). Best of luck! (Currently 4 months pregnant with my first baby - my 3rd IVF embryo through private fertility treatment started in Feb and funded through Bupa health insurance and so grateful for it!)

It sounds stressful OP but why are you running around making all the calls and arrangements. Surely your dh could’ve sorted out his own appointment for the BMI/weight one and taken some of the mental load with other calls.

@Goodadvice1980 thanks, totally appreciate your concern. He did arrange his own weigh in. The reason I deal with all the chasing is because everything is so poorly joined up, I don’t trust the NHS will realise we are “one couple” if we both place calls about different issues. That’s why I had him ask the doctor to cc me when sharing his BMI with the clinic - because the clinic expects calls from me, but not him. It’s not a sexist / lazy DH thing, he is actually doing a lot at home to remove other forms of mental load for me. But you’re right to check!

Thanks everyone for the kind words, advice and support. And 💐 for all those on their own fertility / baby journeys

I don’t mind the harsh comments, people are entitled to their opinion (and invariably, anyone who thinks IVF shouldn’t be available on the NHS either has no desire to have children, or already has their own. So I don’t treat it as an informed opinion)

I am actually of the opinion that a lot of it is accidentally on purpose - ie they simply do not care as it helps get rid of anyone who can afford to pay by inconveniencing them so much that they do just that.

What about men about to start cancer treatment - they will sperm bank then it will often be IVF as the sperm is limited.

We self funded at the end, exactly because of this. This is only the beginning, once the process starts there are so many more appointments and you’ll be happy to be able to have flexibility over the timings instead of being given appts at inconvenient times / cancelled last minute / etc

Sorry for the double post!