Care Fertility issues- is this normal?

[Waitinggame42023]

Hi all,

Just wanted to know if this sounds like a normal fertility referral process to everyone?

DH and I will be 5 years this June TTC our first. NHS consultant has already confirmed our treatment would be IVF, and we fit all criteria.

We've gone through initial tests through NHS- SA, ultrasound, swabs and blood tests, and have been advised that we've been referred to Care Fertility Leeds for our treatment. Their website states that they currently have no wait times.

After a few weeks of no contact, I rang Care to check next steps and eventually got through to the right team. I was then advised that actually there is a wait time- at least 30 weeks just for a phone call to book our first appointment (which would be another 2 months away). This is because they prioritise private patients over NHS.

So I was told that we can skip that wait if we pay for a private consultation, a repeat of all NHS tests and any other tests the consultant requests. I was advised this would cost £1500 as a minimum, but even the young guy on the phone said the cost would likely be far higher.

I just wanted to know how this compares to other's experiences? This sounds incredibly exploitative to me.

After 5 years of infertility, we'd decided that we had to dry the line somewhere- we said if we hadn't started treatment before my 36th, given we only get one funded round and the (un)likelihood of that working, we wouldn't proceed and would instead focus on self care and planning our lives as childless. So this is a huge blow to us.

Just seems no one can be straight with us.

Bump

I am with their London branch (also NHS patient).
I found that it was really difficult to get things started - after our treatment was approved for NHS funding, I chased them for weeks on end to get things going. They always said someone would call me but no one ever did. After a millionth phone call, I raised a complaint and since then everything has been going swimmingly, very good experience since then.
Not sure about them prioritising their private patients, that is shocking to give you such a long waiting list!

Hi @Waitinggame42023 That sounds really frustrating for you.
I'm not sure if it's helpful or not but just so you know my experience with a different Care clinic was really different. We are NHS funded, funding agreed end of Oct/early Nov and I had egg retrieval today. I don't have anything to compare it with but I'm not sure I've been treated any different to funded patients, other than the option to pay for some add ons during treatment.
Might be worth exploring/challenging but hard to know how different areas compare I guess? If you paid the money for the tests and consultation, would you then be able to use the NHS funding for the actual treatment?

Thank you both so much for replying.

@Danielle2500, yes I was completely shocked when they told me how long it was going to be! It was a massive blow, the referrals team implied we were as good as ready to begin, the website said no wait time, and we've made plans to that affect. Mimths of healthy eating, expensive supplements etc and now for nothing.

As a clinic they've taken the contract to see NHS patients and would still be getting paid for our treatment whether that's from the NHS or us as private patients, so to me that doesn't seem right. I'm sure I've read on here before that clinics generally don't prioritise private over NHS, maybe I'm wrong.

@Eggbert12345 I hope your egg retrieval went well, and sending you lots of luck! That does sound like a very different experience. If we paid the money for an additional private consultation and repeat/extra tests then we could start now.

But again, it seems like extortion, and even the person I spoke to on the phone said it's basically a bottomless pit of money. That would all come out of what we've saved to use if treatment was successful.

Do you think it would be worth speaking to my GP about options/other clinics? Or perhaps rining the clinic again and asking to double check. Because if there's another clinic that can see us straight away then of course we'd go for that one.

@Waitinggame42023 it might be worth following this up via email with them/Carepals.
Also worth mentioning that when my NHS funding came through, I was told it is only valid for 1 year, so I don’t think such a long waiting list is reasonable from the clinic’s side.
As you say, they still get paid for the treatment, it just doesn’t come from you but from the NHS.
All the best, I hope you will start treatment soon.

Hi @Waitinggame42023, I'm really surprised they've told you such a long wait- I would definitely double check it. We were referred earlier this year and they advised there would be a wait but essentially our referral would be backdated to the point that we were referred to the fertility consultant at our local hospital. So we had our funding confirmed in March then initial consultation in May (then the baseline tests etc June onwards). Hopefully it's just been miscommunicated to you!

Also I should have said that was with Leeds! And last year not this year.

I used Care Woking but went private by using our deposit savings so no wait times, however I wanted to join in to say £1500 for the consultation and baseline scans seems very high unless jts changed massively since August 2022. I'm sure it was less when we did it, they had a sort of catalogue of prices even down to the scams so you could request that. I hope you are seen faster than 30 weeks, all the beat on your journey x

Scans not scams*

Thank you everyone for your responses, these are all so helpful.

@Danielle2500 and @Walker12 the funding/application for funding hasn't been mentioned to me at any point in the process, I only know about it from my mumsnet research!

DH and I were initially referred to an NHS consultant (for Subfertility) back in 2021, she said stright to IVF but this was delayed due to Covid and then DH's job was uncertain, so we told the consultant we'd wait and were advised to go through GP again whenever ready (which is what we've done now.

So this time, they said they've used our old referral to prevent repeating the consultant stage. But yes apparently that's how long their wait list is!

Thank you @Imisscoffee2021, I do remember reading a thread on here recently that Care's prices had risen considerably in the last year or two, so maybe it's that?

Either way, if they could give us a straight cost we'd consider it, but we don't want to end up in a situation of paying for more and more repeat tests.

I'm thinking about contacting them again to check the waiting time, if they confirm it really is that long, then I might contact the CCG referrals dept and ask them for clarification re. funding and what other clinics we can have our referral sent to.

@Waitinggame42023 That is so strange, I’ve received my funding approval letter via email and also via the post.
I was also provided with a list of clinics and so I could research and pick one.
I thought this was standard procedure - though as I mentioned I am near London so might be different.

@Danielle2500 I'm slightly worried now, I must admit, I've read on MN before about people getting funding letters through the post, but just assumed they must've taken care of it of they'd not mentioned it.

All I've had is a text from my GP saying; 'Dear waiting game, We have heard back that we can refer you directly to the IVF clinic which is good, and we now have the letter from your previous subfertility assessment which we can forward. I have ticked Leeds as your preferred provider (I gather the current choice is Hull or Leeds) Thanks, Dr'- and a courtesy phone call from my CCG referral team letting me know the name of the clinic and that I should expect contact shortly.

I've also had my GP-referred elvic ultrasound and Oestradiol blood test since then, but no contact re. results.

If it wasn't for me ringing Care directly, they apparently wouldn't have contacted me at all until after the apparent 30 weeks wait!

Thank you very much.
We had 7 clinics to choose from in our region, do you have more than one choice? I wonder if you could switch your application to a different one? Especially if their stats are similar. Good luck with whatever you decide!

We weren't advised of options, I was told by the GP she 'thinks it's either Hull or Leeds'- but that she'd already sent the referral to Leeds.

The only clinic I can find on HFEA for Hull doesn't have great stats (considerably lower than the Leeds clinic) although they both say they're within normal range.

I'm just loathed to go with that clinic with the extortionate wait- how can they say absolutely 0 wait time for private yet 8 months+ for NHS? Surely the only explanation is that they're trying to bully NHS-funded patients in to shelling out more money to them.

On top of the fact that at my age, that time is likely to impact our success, they haven't given me confidence that we'll be treated well if there's that much disparity.

Hi,

We’ve just been referred for IVF probably to Leeds although our GP doesn’t know where we have been referred (a whole different problem…) but I rang round the clinics and hospital depts in Hull and Leeds where the referral would go and although they hadn’t received it at that point, the message I got from Hull was that if you’re referred as a tertiary patient (ie there’s a specific untreatable problem inhibiting fertility or you’ve been trying for the required length of time) then the waiting list there was 12 weeks until initial consultation. The story in leeds was 30 weeks for tertiary and “double that” for secondary patients (as far as I can understand secondary is if they think they could treat the underlying issue before IVF is recommended). This was all last week and I’ve been going spare since then. I’m 35 and I feel like every second counts and I honestly wasn’t expecting this, I’ve had my friend and my sister go through Leeds Care in the last year/five years and they were both seen within a couple of weeks of their referral. The GP even said it would only be a few weeks after we were referred. But the same GP also has no idea where our referral has actually been sent too, we live in York too so it’s a choice of Hull or Leeds and though I flagged Leeds they haven’t confirmed anything. I haven’t had any scans yet because the problem seems to be with my partner and sperm count/motility/liquefaction etc. so I don’t even know if there is also anything on my side or if that would mean they’d end up classing us as secondary patients. I asked Leeds about paying for scans etc privately ie anything I could do to speed up the process, and she said that this would categorically prevent Leeds Care from accepting our NHS funding. I don’t think this is true everywhere and I don’t think it’s true for just scans (a pelvic scan is not fertility treatment) so I’m going to get a baseline scan privately and AMH tests in the meantime just to feel like I’m doing something! This whole things feels so much more stressful than it needs to be, like it’s all I’m thinking about.

Hi!
Not sure if this helps but I have had all my tests done (gp) and internal scans (private), and went to Care directly (as our GP said she had referred us but turns out she hadn’t, and we can’t wait any longer because of age). We were intending to pay as private patients.

We had our consultation with the Consultant at Leeds Care and he said we should get NHF funding for the first cycle, told us to go to the doctors and get a letter and send to a lady who’s email he gave us and then we can start with them rather than paying for 3 cycles privately.

I asked about when we could start if we were NHS patients and they said end of March, same as for private patients. They can’t do this month because of the nursing side of things being fully booked.

So in my experience it’s not that long a wait, it might be from the first date of tests until being seen but not from when you get your referral letter. Just call Leeds Care up and book the consultation and they should be able to see you quickly!

Hi!
I’ve had lots of new info in the last few days but it seems that we need to wait for our referral to get to the hospital and to be triaged as if we booked private through Care even just for a consultation, we might not be able to get NHS funding for surgical sperm extraction/sperm freezing should we need it (and we don’t know that yet!) Care just told me it might only be few weeks post the GP referral to the hospital before we get triaged and then we should know what comes next. This process is so unclear! Agh!

That’s so strange! We had my day 2 and day 21 blood tests as well as semen tests done with the GP. The semen one came back quite bad so the GP said she’ll refer us based off that alone (didn’t have my tests back at the point she said that). Turns out she didn’t refer us, so rather than be messed around any more (we’ve been in a loop with tests with the GPs for 3 years now!) we just went to Create and had our baseline scan and AMH tested with the mind to go private. We didn’t really know what we should be doing as the GP didn’t tell us anything about what we should do, we just did it because we knew we needed them before starting ivf privately to know what protocol etc we’d be on.

Then we decided to go with Care, so just used the results from the Create scan, GP tests and the AMH test and the consultant (dr Rutherford) said you qualify for one round of NHS funding, get your doctor to send this letter to this email address as you don’t need more tests done now you’ve been waiting so long and are old (lol) and we can start you next month. So I guess it is a referral but more informal? Maybe when we get this letter and email it to the lady he told us to that she might say he’s wrong but he seemed adamant that we wouldn’t have to wait for the funding to be agreed.

god knows! It’s a minefield, we’ve been in circles with this and everyone tells us different info so we’ve just gone rogue and tried to move it on ourselves privately! I’ll let you know later this week whether it works for us 🙄😐