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Original poster

To be so frustrated by IVF on the NHS

35 replies

SquashedSquashess · 05/11/2025 15:18

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.

OP posts:
New posts on this thread. Refresh page
SushiForMe · 05/11/2025 18:37

Sorry for the double post!

SushiForMe · 05/11/2025 18:36

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

Annoyeddd · 05/11/2025 18:07

BerryTwister · 05/11/2025 16:36

@MangoBanjoe why shouldn't IVF be available on the NHS? Should contraception be unavailable too? And what about maternity care?

Show quote history

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

Orangemintcream · 05/11/2025 17:45

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.

Original poster
SquashedSquashess · 05/11/2025 17:33

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)

OP posts:
Original poster
SquashedSquashess · 05/11/2025 17:31

@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!

OP posts:
Goodadvice1980 · 05/11/2025 17:22

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.

magpie234 · 05/11/2025 16:53

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!)

Bootsies · 05/11/2025 16:50

SquashedSquashess · 05/11/2025 15:18

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.

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.

CurbsideProphet · 05/11/2025 16:46

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.)

FunnyOrca · 05/11/2025 16:46

OP - it works be worth checking what your private options are. Where we live the private IVF is the NHS provision but without the initial waiting list. The cogs turn just as slowly once in, but you bypass the 2 year wait. In other words, you would be in exactly the same position. You might have better private provision where you live, but I would suggest you check!

Also, very sorry though not surprised to hear your experience. It is so slow moving. Best of luck with the journey.

MangoBanjoe · 05/11/2025 16:43

BerryTwister · 05/11/2025 16:36

@MangoBanjoe why shouldn't IVF be available on the NHS? Should contraception be unavailable too? And what about maternity care?

Show quote history

Making contraception free saves money on abortions. Maternity care is to keep people who exist healthy.

IVF is to create new people. Nobody is physically harmed by not becoming a parent.

florafoxtrot · 05/11/2025 16:39

I'm so sorry you're going through this OP and that you're having such a frustrating time with the NHS. It feels like a lifetime to wait when you are expecting treatment and the constant road blocks (weigh-ins and blood tests) are the worst.

Could you contact a private clinic and ask their timescales to consider whether it would be worth self funding? They may wish to re-do tests etc. which might mean you end up with the same timeframe.

Know it feels impossible but once you get going, it does all happen quite quickly and you then feel like you're on the right path.

Also sorry you're getting some really shitty responses on here. It is totally unnecessary. The infertility boards are a much more supportive place.

ShesTheAlbatross · 05/11/2025 16:39

MC846 · 05/11/2025 15:48

It's shit OP I've been there, honestly just pay for it, the NHS moves remarkably quickly once you're paying and all these barriers to starting the treatment mysteriously disappear. We were messed around and nearly 2 years after initiating the process of starting IVF, we were still waiting. I paid and was pregnant within 4 months xx

Edited

The NHS does not move quickly once you start paying, because that’s no longer the NHS (even if it’s the same doctors). I’ve seen a neurologist who works as an NHS consultant much more quickly once I paid, but I wasn’t seeing him as an NHS consultant.

notatinydancer · 05/11/2025 16:37

The NHS is on its knees.

BerryTwister · 05/11/2025 16:36

MangoBanjoe · 05/11/2025 15:35

I don’t think any IVF should be on the NHS to be honest.

Self-fund if you can afford it and you’re over 33ish.

@MangoBanjoe why shouldn't IVF be available on the NHS? Should contraception be unavailable too? And what about maternity care?

Paganpentacle · 05/11/2025 16:34

MC846 · 05/11/2025 15:48

It's shit OP I've been there, honestly just pay for it, the NHS moves remarkably quickly once you're paying and all these barriers to starting the treatment mysteriously disappear. We were messed around and nearly 2 years after initiating the process of starting IVF, we were still waiting. I paid and was pregnant within 4 months xx

Edited

You cannot pay the NHS....

YorkshireGoldDrinker · 05/11/2025 16:31

toomuchfaff · 05/11/2025 16:22

OP isnt going to see the NHS become a well oiled machine in line with the critical timeline for a child. Their want for a child is the most important factor here and it has a critical time bound factor - my post was asking OP to consider what's more important to them.

I've no idea what your trading standards example is bringing to the scenario at all. Although I dont disagree with your scenario its nothing in comparison with OP original issue.

Show quote history

I know she isn't. Which is why I skipped the damn thing altogether. I knew what it was going to be like from the get-go.

I was trying to make an analogy. I'm sorry if it wasn't good enough, lacked substance or made no sense.

toomuchfaff · 05/11/2025 16:22

YorkshireGoldDrinker · 05/11/2025 16:09

""because we pay our taxes"; just because you"ve paid doesnt mean the wheel will turn quicker."

Bit of a weak argument, if you don't mind me saying. Let's suppose you pay for a new car, and the car you get turns out to be a 20 year old clunker that needs a new timing belt, brakes, tyres etc Basically the entire vehicle needs to be taken off the road. You go to Trading Standards and they say "You paid for a car and a car is what you got, deal with it." Would you say you should feel fortunate that you can afford a car?

Edited
Show quote history

OP isnt going to see the NHS become a well oiled machine in line with the critical timeline for a child. Their want for a child is the most important factor here and it has a critical time bound factor - my post was asking OP to consider what's more important to them.

I've no idea what your trading standards example is bringing to the scenario at all. Although I dont disagree with your scenario its nothing in comparison with OP original issue.

SushiForMe · 05/11/2025 16:17

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

MissDoubleU · 05/11/2025 16:12

I’be been on a waiting list for 6 years for treatment for a diagnosed condition on the NHS. My DH has just waited 6 weeks for a decision on treatment for confirmed testicular cancer.

The NHS is slow. I understand IVF is time sensitive but so is everything health related. People are desperate and waiting on life altering/saving intervention up and down the country. I’d just get on with self funding IVF knowing you’re able to.

YorkshireGoldDrinker · 05/11/2025 16:09

toomuchfaff · 05/11/2025 15:33

Self fund.

The NHS is a slow machine, some would say to weed out those who need/want/can move quickly.

You can self fund, why go through the stress "because we pay our taxes"; just because you"ve paid doesnt mean the wheel will turn quicker. You are blessed to be able to remove yourself from that stress.

""because we pay our taxes"; just because you"ve paid doesnt mean the wheel will turn quicker."

Bit of a weak argument, if you don't mind me saying. Let's suppose you pay for a new car, and the car you get turns out to be a 20 year old clunker that needs a new timing belt, brakes, tyres etc Basically the entire vehicle needs to be taken off the road. You go to Trading Standards and they say "You paid for a car and a car is what you got, deal with it." Would you say you should feel fortunate that you can afford a car?

Hartleyhare1206 · 05/11/2025 16:02

Hi @SquashedSquashess I feel your pain massively. Due to a ridiculous amount of red tape and incompetence - ie losing test results between hospitals, and insisting they’re repeated because just knowing the results wasn’t enough, they literally wanted to see the scans etc as “proof” even though there were notes to the same effect in my medical records, GP referring us in error to a hospital that no longer had the NHS contract to provide fertility treatment, an said clinic not bothering to actually go back to the GP to let them know so they could rectify the situation, then funding expiring and having to be re-requested, etc etc! - It was a total shitshow, and we waited 2 years to start treatment.

It did move swiftly and efficiently once it was in the hospital/clinics hands though, and I couldn’t praise them highly enough. The care was incredible, and I couldn’t have been treated any better at a private clinic.

This was at an NHS hospital with a specialist “women’s”
dept who also had the option of self funding (at a fraction of the cost of a private clinic) So don’t know if that would be an option you for you?

I do understand how hard and painful the whole process is, especially the waiting in limbo - it feels like another thing you have no control over at a time where you already feel a bit inadequate that your body can’t play ball
and the odds are stacked against you. It’s tough. Whatever you decide to do, and whichever route you choose to take, I wish you all the very best with your treatment and and crossing fingers and toes for a favourable outcome in the not too distant future xx

Celestialmoods · 05/11/2025 16:02

The NHS is shit. Imagine going though this when you have an actual illness that causes pain, limits what you can do and could shorten your life. At least this is a choice you are making and you can afford the alternative.

EffinMagicFairy · 05/11/2025 16:00

I would self fund while you wait on your NHS go and hope you don’t need it. We self funded, which failed, but our NHS go then came up which was successful. Had our NHS go been our 1st round it would have been cancelled as I didn’t have enough follicles to make it viable, similar to our funded go, but since fertilisation was achieved on our funded go, the consultant said NHS could go ahead resulting in a successful pregnancy.