To feel exploited by private fertility miscarriage clinic - need advice

[notaurewhatusername]

Posting for traffic and really stressed about this.

I'm 8 weeks pregnant and feeling distressed about my experience with a private fertility clinic. After getting pregnant naturally, I sought their care for early monitoring. They prescribed intralipids and steroids, insisting on fortnightly visits costing £800-£1000 each. When I tried to reduce costs by arranging NHS scans in between theirs and therefore reducing visits from fortnightly to monthly, they became uncooperative and sent me some quite shitty pressurising emails.

Recent research has made me doubt their treatment approach, especially regarding intralipids and steroids. When I expressed these concerns and asked for flexibility, the clinic responded with stern emails and ultimatums about prescriptions. They seem more focused on maintaining their expensive scan schedule than addressing my well-being.

This is my 7th pregnancy after previous losses, and I'm torn about how to proceed. Should I continue with this clinic despite my reservations, switch entirely to NHS care, or seek a middle ground?

I'm worried about the right treatment and don't want to risk another miscarriage, but the clinic's behavior feels unethical. I have NHS appointments coming up and would appreciate any advice on this. Thanks

I don’t think the emails are bad at all. They’re literally just saying that in order for them to prescribe the medications then they need to also see you for scans. They are responsible for your wellbeing whilst they are giving you medications so they can’t just keep giving them without seeing you. You’re well within your rights to stop taking the medications & crack out with NHS care but obviously they are going to recommend you continue taking them as that’s their treatment plan! If you stopped taking them & miscarried, they would be liable if they just said “no worries, stop if you want” so they aren’t going to do that.

I was with Dr Gorgy and whilst it was very expensive and involved appointments it wasn't every two weeks there was no pressure ever, there were blood tests but they were to renew the meds never any scans it was six years ago so perhaps things have changed.

I think the GDPR thing is their way of saying they have no access to your records from anywhere else. They only have their records about you. This means to continue receiving medication, you need to continue with their scans because they can't just keep giving you medication without knowing your progress. That would be incredibly irresponsible and dangerous.

Hi, I had similar treatment to you (& just welcomed our baby boy this August) after 4 miscarriages in a row. I went with a different clinic though and I did what you described around sharing scans from NHS to the clinic so they could continue to advise, and my GP surgery completed my full blood counts and then they prescribed dosage based on results. It can be very scary, especially when so much is at stake so I am with you there! I did intralipids until 16 weeks and then made a decision to stop, alongside taking a steroid until 12 weeks, Clexane (due to additional bloods issue) until 6 weeks post birth and then Cyclogest until 24 weeks. My clinic (ARGC) recommended intralipds until 20 weeks but we declined this as we felt the biggest impact was in first trimester. We also met with Tommys (professor quenby) who didn’t advise intralipids due to evidence of success but did cyclogest and blood thinners … it’s the only pregnancy that’s ever worked and resulted in a baby for us. It’s important that you make a decision that you feel comfortable about not via pressure from the clinic- is there anyone you can escalate to outside of the emails to speak directly to a consultant?

This... I do not understand why GDPR has been cited.

It's really common for NHS and private to share information with the patient's consent and nothing about GDPR prevents it.

It's sounds like they're just trying to get more money out of you and using GDPR as an excuse.

Hi OP, I have been in a similar position. Currently in the car driving home from our holiday. I have my 8 year old in the back. He was a Dr Shehata baby. I was desperate after 2 miscarriages at the age of 36. I do feel there’s an element of exploitation with some of the treatments and cost but I do believe he helped me to have a healthy baby. I stayed with him for my eldest and had a straightforward pregnancy with him on all the medications. After my eldest I decided to try to get pregnant without interventions. I had two further miscarriages. At this stage I had a one year old and we live a couple of hours from Epsom. Between having a toddler and work we decided it wasn’t feasible to be going there regularly. I spoke to friends locally who had had IVF and several mentioned a Dr who worked for the NHS and BUPA. I went to see him and he performed a number of tests. I ended up on steriods (progesterone) and another one I can’t remember the name of as well as injections. Pretty much the same as Dr Shehata except the intralipids. But it was much closer to me. I ended up having twins this time and I am very grateful for the advances in medical science which have allowed me to have three healthy children.

Dr Shehata was more expensive but the treatment was very similar with the Bupa doctor. I don’t think he is dangerous but I do think he profits, as do many others in the fertility industry, from despair. I would stick with him to the 16 week mark as you are at this point. I don’t think there’s anything wrong with those emails but I do think there’s pressure to spend at his practice. Sorry you find yourself in this situation amd congratulations on your pregnancy.

Cyclogest!! That’s the other one I had too.

I'd say these seem perfectly reasonable- they are prescribing unlicensed treatments and their protocol is you need to have scans fortnightly from a safety point of view. It's not always straightforward to share scans between providers- how would the private clinic be able to review an NHS US?

@notaurewhatusername I am wondering if this is the same trratment someone I know used 13 and 10 years ago as they had 20 years of miscarriages due to their immune system rejecting the pregnancy.

They had to travel a HUGE distance to the clinic every 2 weeks but that was part of the agreement and monitoring. After 15 miscarriages they had 2 successfully pregnancies.

The procedure will have some risks so if you have agreed to go ahead it's important to be monitored closely and hence their messages come across as rather harsh.

@sillylittlerabbit yes I calculated the costs. It is NOT about the money it's the fact I suspect they are prioritising making money over what's best for me: this is the issue.

I have found d information online that of contradicts the treatments they recommend and I only found this after I felt they were being pushy so started researching and found it.

I'll also admit my DH has really been encouraging it too he thinks it's a huge scam and is purely money driven, which doesn't help.

He called three other fertility clinics today who said they usually discharge back to NHS after seven weeks so is now convinced I'm being scammed

Also a quick update, I have decided to keep my appointment with the private clinic and will continue with them. I am going overseees next week and therefore don't need the added stress, and want advice on what to do with the meds while I'm away. I'm almost 8 weeks now not far off the 12 week mark I'll just stick with them.

I was under the CRP clinic and luckily had a successful pregnancy after years of infertility and miscarriages. I understand your concerns and I do think he is very money driven. The £25 admin fee to post out medication was a bit of a piss take!

As for the evidence, it’s a tricky one because there is little research in this area and it’s hard to do clinical trials. But for many women who miscarry healthy, euploid embryos these drugs do seem to be the missing link.

As for the emails, I don’t think they were bad either. They prescribed the drugs and are responsible for monitoring while you are on them. They have a duty of care.

The treatment I had from that clinic enabled me to have my 2 healthy children after 4 miscarriages.

That includes a miscarriage in between my 2dcs where I conceived accidentally, and so wasn’t on the treatment. For me, it seems to be necessary. And my kids are healthy and gorgeous, so it certainly didn’t do them any harm.

I understand that it is so much money and it can be worrying - the whole fertility industry is like the Wild West. The NHS generally doesn’t offer this treatment and they profit from that. But it is also reasonable for them to require you to follow the protocols they have designed in order to protect both themselves and you, and you will have known this from the outset. The emails are fine - they are just explaining all this.

Congratulations on your pregnancy OP.

Ah, I think the treatment of immune issues is a massive scam - there's no evidence based, just lots of desperate people willing to pay out for anything that might help them keep a pregnancy. I know - I was one of these women.

I'm not a dr but I am a statto and so I know there's a very good evidence base for blood clotting treatments for miscarriage where there's an issue with that. But there's no evidence for intralipids - and they're not a mild treatment. I was prescribed steroids for alleged immune issues in round 3 of IVF after 3 miscarriages. I decided not to take them - because no evidence. I carried that baby to term without the steroids and despite this alleged immune problem. That's just as much ancedata as all the women who coincidentally took the treatment and stayed pregnant. Without proper evidence it's bloody irresponsible to be selling it to the most vulnerable of people.

I woke up and found another worrying article to say suppressing immune system in pregnancy can be harmful, this is so stressful. I do not know what to do for the best;

yourivfjourney.com/natural-killer-nk-cells-fertility-fraud/

If you are resolved to continue I would stop googling it. I know its hard but the worry will not be doing you any good and you have no idea who is writing this and what research they have done.

OP you should have done all of this research before you embarked on this expensive treatment plan.

You have been following the protocol and are now pregnant and all is going well. For the first time ever?

It is very dangerous to stop steroids abruptly - you need to wean off them gradually - so you really have no option but to continue taking them for now, even if you start the tapering process today. Reading articles about possible harm in circumstances where you have to continue taking these meds is going to do nothing but cause you stress and anxiety.

OP if you've made it to 8 weeks (presumably with a heart beat seen?) after 6 recurrent losses I'd be inclined to think the treatment is helping... There are always risks to any treatment but there are lots of ladies who can testify that an immune protocol has given them a healthy child after years of heartbreak. Maybe stop reading articles and just listen to your gut? I imagine your husband's opinions are also probably swaying you at what is an incredibly scary and anxious time. I do think CRP make more money than they need to, particularly for things like intralipids and prescriptions. But they also have a really high success rate with women having children after years of recurrent losses and offer help that simply isn't available on the NHS. I saw a consultant recently called Lynne Chapman (we were about to start ivf with her). She might prescribe you steroids and monitoring of this pregnancy. And you could travel to Cherish clinic for intralipids (£200) if you decide to leave CRP.

@harrietm87 I actually started treatment AFTER a positive pregnancy test.

I fell pregnant accidentally after six years infertility deciding it wasn't happening and moving on with my life.

After the positive test I then got worried and out of desperation needing quick answers called the clinic as I knew it would be the quickest route to treatment over NHS and it was the last clinic I'd dealt with so figured the quickest way to get help.

The speed of everything, I didn't research I just wanted quick answers as previously I know with miscarriage every day counts.

Wow. This is so patronising. The OP has every right to reflect at any point in any medical treatment about whether it seems legit. And to make a judgement about whether fertility doctors might be out to make money rather than help patients disinterestedly.

@harrietm87 I've been pregnant before quite a few times, this isn't my most successful pregnancy I've got to ten weeks before. I've never heard a heartbeat before though, although presumably with the ten week pregnancy there would have been one to get to that stage but that was my first loss so I didn't have any reassurance scans to know

But they wouldn’t have treated you without having done all of their tests etc? So you must have had a chance to research the protocol etc and discuss it with them at that point? You must have signed all the consent forms?

And all of my points still stand - for whatever reason your pregnancy is going well and you are following their treatment plan. You cannot stop the treatment abruptly without serious risk to you and the baby. So you have no choice here really at all, unless you can get your GP to prescribe enough pred to taper off? I think it’s reducing by 5mg every 5 days, so you need to take this for almost another 4 weeks at least.