Private or NHS? How do they compare?

[PegPeg]

My partner and I are about to undergo fertility treatment, and we have been referred on the NHS, but so far we've had a horrible experience - it's been three months since were referred and we haven't even had our initial consultation yet due to a series of f*ck-ups on the part of my referring GP and the admin team at the hospital.

So, we are now thinking of going private. We can get an initial consultation as early as next week! Whereas if we wait for our NHS appointment it's going to take another few months before we can get seen (we've had to go right back to the start of the referral process due to incompetent f*cking twats messing everything up... still really angry, sorry...)

Just wondered if people have experience of both, and how they compare? Going private costs thousands - is it really worth it?

I got majorly pissed off going through the NHS for fertility treatment. I saw different junior doctors every time, and not one of them spent more than 10 mins with me. They kept telling me I needed to repeat my day 21 tests even though I had a regular cycle, and every single test indicated ovulation (not borderline or anything). i ended up having it done about six times waste of time and NHS resources

I was already in the system when I had an ectopic. The next step for me regardless of the EP would have been a hsg / hycosy / lap & dye. I waited the recommended three months post-ectopic, then asked a consultant about checking my tubes. She told me to come back in another three months and then they'd consider starting the referral for a hycosy fuck that noise

I'd had enough by this point. Booked a private appt and was seen within a few days, had tests that same cycle, and started IVF within a matter of weeks. Am due to give birth in two week's time.

Was it worth it? For us, yes. We paid a lot of money though (approx 10k for tests plus our cycle), but I actually couldn't care less about the cash. Obviously I may have felt otherwise had the cycle not worked. But, I felt listened to and cared for at my clinic - our initial consultation lasted an hour and that was longer than every single appointment I'd had in the NHS system over a two year period combined.

I think I'd consider a few things: age / egg quality - are you pushed for time? How long is the NHS IVF referral times and waiting list where you are? Can you afford to burn circa 5k and not miss it if a private cycle fails? Would your CCG allow you a cycle of private treatment whilst you're still going through the NHS system (more and more ccgs are changing their policies on this), can you consider a mixture of private and NHS treatment to speed things along somewhat? How many NHS cycles are you entitled to?

Private treatment was the right thing for us, but I think if I'd been a bit younger, and less hotheaded I may have preservered a bit longer with the NHS.

I think that once you get through the door of the IVF clinic, it doesn't make a huge amount of difference to the quality of care if you are private or NHS. Maybe they spend a bit more time with the private patients in consultation, I don't know, but I have never felt really rushed as an NHS patient. I think our NHS-funded care has been good, certainly much better than it was at the hospital gynae clinic. And where I live it would only have been a couple of weeks quicker to actually begin IVF if we had gone private, once we'd got the referral sorted from the hospital, which was a long and painful process for sure.

Getting through the door of the IVF clinic is where the challenge was for us. I totally relate to your frustrations, and Tootsiepops', about admin and junior doctor fuckups. Been there. I now follow absolutely everything up, I guess you have learned that lesson too.

Where exactly are you in the process? Is it the hospital team you are waiting to see, or the infertility clinic? If you are waiting to see the hospital team again then yes I would consider paying to hurry things up, and I have done so. If it's the infertility clinic, I would probably hang on for the NHS unless there is a huge difference in waiting times where you are. It's a hell of a lot of money. I'd also find out directly from the infertility clinic how long the gap might be between your first appointment there and actually starting treatment (I had a gap of only a few weeks but I think this isn't universal), and if this varies much if you paid privately.

Tootsiepops makes a very good point about checking your CCG's rules around whether or not a private cycle might affect your entitlement to NHS funded treatment. Good luck with the last weeks of pregnancy and birth, Tootsie, and congratulations! Success stories are great to hear.

Thank you for your replies. My situation is this:

I am 35 and had some eggs frozen a few years ago due to having my ovaries and tubes removed (cancer). Our plan is to use these frozen eggs to try and get pregnant.

I've been referred to the NHS IVF clinic to discuss having the eggs fertilised and implanted. Due to immense cock-up, NHS now can't see me for this initial consultation until Feb/March - a long time to wait seeing as our referral was originally made at the start of September!

But if I go down the private route, we can have our initial consultation next week, and have implantation in January :-) (provided there are no unforeseen issues).

As I have so few eggs in storage, realistically I've only got one shot at having a genetic baby. We will be extremely lucky, apparently, to get just one egg fertilised successfully :(

So in a way, going private could be viewed as a bit of a waste of money, given how small our chances are with these eggs...

On the other hand, we are prepared to spend the money if it means 1. we can get things moving quicker 2. we are treated like human beings, and 3. we are giving my little eggs the best possible chance.

From a purely clinical perspective, I'm not sure whether going private will mean we stand any better chance of a successful pregnancy. Living where I do, ultimately the actual lab work ends up being done by the same team in the same hospital, regardless of whether you go NHS or private.

Then again, my understanding is that if you go private, you can opt for certain tests that you are not offered on the NHS, and which could highlight any potential issues in advance of the treatment (NK cells, etc) thus increasing your chances of success. I know a few people who went down the NHS route to start with and had two or three failed attempts, before going private, having some tests done which picked up specific issues which were then treated, and they got pregnant on their next cycle. I'd hate to waste my few precious eggs because the NHS failed to pick something up.

It's important to me to get the best possible treatment and that includes not being dicked around by the NHS. I just don't want any added stress after everything I've been through already.

Ah you're in a complicated situation aren't you. I really feel for you, that is so much to go through. Has your clinic got experience in working with frozen eggs? It's still a relatively new thing isn't it? If not then maybe make loud noises about referral to a clinic that has experience in this area, you might have to travel but that's not so bad.

Re extra testing: you may well be able to top up NHS treatment with privately-paid for 'extras'. This is quite new as I think up until quite recently it wasn't allowed (it's not generally allowed in other areas of the NHS but IVF seems to be an exception). So if you did want other tests then it might be possible to pay for those but still get the main bit funded, saving you ££. And the tests would probably take a bit of time before you were able to start preparing to use the frozen eggs. Ask your clinic or CCG what the local rules are.

For example I paid £200 for an endometrial scratch last month, before my current IVF drugs started. It wasn't the most fun £200 I've ever spent but I also had a scratch earlier this year as well before I had a frozen embryo transfer, which resulted in pregnancy (then later miscarriage but that had nothing to do with the freezing). So now I think that scratches may help me, because I didn't have one during my first fresh cycle and that embryo didn't implant. For me I think it is worth the day off work and £200. You might want to consider a scratch perhaps? I haven't had NK cells tested but they did ask me to get a thyroid check done for this second fresh cycle, have you done this? (Your GP can do it, it's just a blood test)

Just checking, has your partner had his sperm all tested? Hopefully everything is fine there but again need to be sure. Also, another thought, you could perhaps call the clinic and ask to be put on a standby list in case they get any last minute NHS cancellations (maybe from one of those those annoying miracle women who get naturally pregnant the second their IVF appointment comes through the letterbox?)

Sorry if this comes across as slightly bossy or you already know about all this. I just want to help, honest!

In your situation Peg, I'd be hot footing it to the best clinic I could afford even if that meant relocating for a couple of weeks to be near the right doctors. If I had one shot, I'd throw everything i had at it that way there are no regrets and no what ifs. As much as I am grateful for the NHS, imo, this is more than I'd trust them with.

Yes the more I think about it, the more it makes sense to go all-out and find the best possible treatment I can afford, from the best expert I can find. We've only got one shot at this, so why waste it? With so few eggs, it seems silly to put them in the hands of someone who isn't really an expert in the specific, highly specialised field of egg thawing. It's very hard to find an expert though, I've found... the internet hasn't helped me at all! I've got a consultation with a private clinician next week, so perhaps they can help me source the right person from their networks.

I wish we hadn't bothered with our NHS treatment tbh. It sounds really ungrateful as we were funded for an incredible 6 x IUI and 3 x IVF if needed to make our first child. (Got to love Hackney!). The waiting around was just mental though - often 3 months between different test and result review appointments. And we could only chose to have our treatment at one clinic (Homerton) which doesn't have the best success rates. In the end it took about 18 months just to get to the point of starting our first IUI. When we moved on to IVF the wait was another 9 months or even though we had joined the list before starting our IUIs.

The whole IVF process there definitely had an assembly line feel with little tailoring to individual needs in the first round. When that failed (after horrific OHSS due to their lack of monitoring/tailoring) I then had to rejoin the waiting list before we could have had a second go. So it would have meant waiting at least another year for round 2. Meanwhile tick tock etc.

So we went private and the difference was huge. At CRGH we had to repeat all the tests I'd already had done on the NHS but even so, we were cycling within 2 months and the consultant added lots of drugs and changes that he said I should have had on my first round on the NHS if they hadn't been cutting corners. The monitoring was much closer during the actual IVF cycle with daily scans and bloods and calls to adjust my doses. I felt really looked after. Little things made it all feel nicer like having a nice room to rest in after egg collectionrather than having to walk half naked down a corridor to sit on a chair in a big communal room.

I'd say get into the NHS system if you can as a back up but if you have the money, or if you are over 35 go straight to private

Sorry, just re- read about your eggs situation.
How come the private and NHS would be done by the same embryologists? Is t a geography thing with you only living near one main clinic?

Especially if your eggs are finite then everything you can do to maximise implantation and fertilisation rates would help

Hi PegPeg, if you are searching for a best clinic, think on overseas fertility clinics. Good luck

Thank you for the additional replies. We are definitely going to go private, and we have found a clinic whose embryologist has lots of experience specifically with my type of eggs (with regard to the technique used to freeze and thaw them). We're pretty confident he can give us the best possible chance.

Still, the odds are still stacked against us as we only have four eggs. That gives us about a 20% chance apparently.

That's better than nothing, but if it fails, we will have to use donor eggs... but as we definitely won't be able to afford private treatment more than once, we'll have to go back to the NHS... and their waiting list for donor eggs is very long, so we are looking at having to wait up to a year before we can try again.

I'm not really coping very well with the thought that our first round will likely fail and then we have this long, long wait before we can try again. I've always been the kind of person who likes to pick herself up quickly and get back on the horse, and not having the ability to do that is going to really test my strength. My partner's really suffering too, he's desperate to have kids and I worry about how he's going to cope with all this.

I'll probably be feeling better in a few days once this has all sunk in!

Hi Peg

Just wanted to say hello and wish you all the best. I am also undergoing IVF after cancer treatment. I did not freeze eggs (nobody offered and I didn't think!) but luckily I am still ovulating. My cancer was caused by a genetic condition though, so I need to have PGD as well. Oh and I am 40 already!

Most of the people I have met at the clinic are "just" infertile with no cancer history which can be a bit isolating. I have pretty poor odds too. My IVF clinic sounds a bit like yours - I am at CRGH - their success rates are great but it's pretty chaotic and I have had to nag them a lot to keep things moving.

Wishing you all the best

Thank you, YoungGirl. We had some more bad news today :( our eggs were frozen using an 'older' protocol, meaning our chances of success have halved. So we're at 10% now!

As our chances with my eggs are so low, we are thinking of transferring back to the NHS for the actual treatment, and spending the money we'd save on some backup donor eggs (we could also obtain free donor eggs on the NHS too, but the waiting list for these is huge, apparently).

That way, we can attempt fertilisation with my eggs and the donor eggs at the same time. If none of mine fertilise, use the donor eggs, type thing. That would give us a better chance of success with this first cycle... shame we won't be able to go private for the actual treatment though. But something's got to give, because we don't have a lot of money.

Hi Peg

Sorry to hear your news. I think your plan makes sense. I agree with a PP who said that it makes little difference once you get through the door of the clinic. At CRGH it's impossible to tell who is private and who is NHS.

I do get the impression that they tend to under-state the odds. I was given the same odds as you (cried for days afterwards...) When I had my first appointment at CRGH I was expecting them to explain how low my chances were because of age, cancer and chemo. They actually said "we are very optimistic" so I don't know how you can reconcile that. I keep telling myself that nobody can predict how a particular person reacts and they prove nothing either way. I find it helpful.

Wishing you the very best

Hi Peg, I've just had a successful round at ARGC. It's expensive but their results are some of the best on the world. They are massively different to an NHS cycle, they won't start you unless conditions are ideal, they have tailored protocols (not just long and short) they blood test you every day and adjust your meds accordingly. In the final week they scan you every other day. If you get a positive result the care continues afterwards with regular blood tests and scans.

I relocated to London for 4 weeks and have all the aftercare done at home on the nhs, sending the results to London so essentially they are doing the after care for me for free.

There are scare stories about Argc, mainly about their immune treatment but you don't have to have this (I didn't). Also about the act that they own different clinics and send women to them depending on how likely they think they are to get pregnant to save the main clinic results - these are completely unfounded. your embryos are stored at one of 2 locations depending on what day you have retrieval, not by age/quality.

I honestly couldn't recommend them enough. You won't get a touchy freely approach from them but you will get cutting edge knowledge and ability from hugely dedicated doctors at the forefront of fertility practice.

Lots of luck with whatever you choose.