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.

It is really shit OP, the wheels of the NHS turn slowly- particularly for IVF/fertility.

Depending on your ages, if you have the ability to self fund then I would be doing that in your shoes.

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.

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.

To add; if you get years down the line, with no child, whether that be failed IVf or whatever reason, will you be happy you stood your ground and waited for the NHS wheels to turn?

Or would you prefer to look back knowing you did everything within your power to TTC?

Its about what means more to you in this scenario? Which is the bigger driver for you? time or money?

Thanks all - today has made me decide to self fund. My point is more that, when I believed we just had a 6 month wait, that seemed worthwhile against the cost of self funding.

Had our consultant been clearer that “starting in November” did not actually mean starting the process, and that that would have been more like a 1 year wait, I would have self funded 6 months ago.

So my annoyance is in feeling I’ve lost time I could have been getting on with things myself. I’m 33, so don’t have bundles of time.

YANBU to think they should be clearer with timescales.

I had IVF twice with NHS and self-funded several more rounds before being successful. I understand very well what you are experiencing! It's constant and relentless: as it goes through several different contact points (GP, hospitals, clinic...) the coordination is so so poor that without you connecting the dots all the time it just doesn't work.
However, my advice is to keep going and go via NHS if you can wait. Reasons are 1) you don't know how many rounds you will need. Every round is very expensive and you might still need to self-fund after. 2) the waiting to start is the worse part and once you are fully with the clinic everything will be so much smoother as they will manage the process completely.

Good luck!

The nhs is slow at everything. We are on a 4 months wait to even get first appointment for a peads referral. I expect we will be no closer to an outcome this time next year.

If you can afford private always go private. The nhs fails when it comes to talking to each other and referrals. Despite being one body it’s like the arms don’t even know the hands exist.

This is why I went private. I also went private for an investigate hysteroscopy. The point of contention often is: "Why should I pay private when I'm forced to pay National Insurance and have paid into the system my whole working life?" Because you're sensing fraud, and that's exactly what it is. The country hates unlucky people and doesn't want to help them in their journey to becoming parents. If you desperately want kids AND you can't afford to go privately, then you're often told any one of, or all of the following in no particular order:

"Comparison is a thief of joy."
"Why don't you adopt?"
"There is a reason it's not happening for you, don't disrespect nature."
"There's more to life than having kids."

It's all totally dehumanising and attitudes should change.

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

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.

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.

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

""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?

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.

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

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.

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.

You cannot pay the NHS....

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

The NHS is on its knees.

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.

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.

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.

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.