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

Appreciate this must be very stressful for you after previous losses. But NHS recurrent miscarriage care and preventative treatment is basically zero so if you stop your private treatment you'll be stopping it in exchange for no treatment. I wouldn't personally take the risk. The scans are essential to the treatment so if you can afford it I'd stick to listening to private specialists over nhs pregnancy care any day.

@notaurewhatusername OK that's really positive :D Are you on treatment for your thyroid or are the levels normal without any treatment? At least now when the GP results come through you can double check them.

@Cosmos24 most definately, I'm currently untreated and haven't been for a while as it's been stable for some time now thankfully

@notaurewhatusername Can I ask what the outcome was for you?
I’m also about to starting using treatment with Prof Shehata at CRP clinic but the charges are extortionate. I have high NK cells so he has put me on a complex treatment plan consisting of Adalamumab injections, Prednisolone, HCQ tablets and intralipd IV’s. Not sure what to do and seeking advice from someone who’s been there hopefully. Thank you. X

I know you’re not asking me, but quick update on my situation. I went to CRP clinic after 3 miscarriages but felt a) the fees were absurd, b) that prof shehata was v pushy and rude making me not feel comfortable to trust him with such an important thing and c) that his methods were too extreme when my results were basically normal. He had told me if I didn’t follow exactly what he said I would have 20 more miscarriages.. anyway we decided not to stay with him and I fell pregnant again fairly soon after and am currently breastfeeding my 10 week old baby 🥰 obviously everyone’s situations are different, and you have to do what you believe is right for you, but I’m really glad we didn’t go with him. Wishing you all the best with your situation xx

@Cosmos24 thank you for your post. Can I ask where you want to have a successful pregnancy. I have the high NK cells so would need to be treated for that. They haven’t been pushy with me… it’s just the costs and amount of medication required. X

I didn’t go anywhere really. I had been referred to St Mary’s which is a v good London NHS recurrent miscarriage centre, but I was pregnant before the appointment and they won’t see you if you’re already pregnant. I had aspirin, heparin and cyclogest prescribed through my local EPU, but then found out at about 7 weeks that I have a balanced translocation, so actually none of that treatment was really necessary but as I had started I completed the regime.

As far as I’m aware, there is very limited evidence for NK cells and I don’t think there are many NHS places that offer treatment. I’m sure St Mary’s doesn’t go down that route. However Prof Shehata has an NHS clinic, I think it’s at St heliers hospital, where they do offer NK cell treatment and under the NHS you can request to be referred there even if you don’t live in the area, so could have it for free. If you don’t want to wait then I imagine his private clinic is as good as any other private clinic for treating NK cells, I was just uncomfortable as my results were virtually normal and yet he still pushed me to have a huge and expensive treatment regime which turned out to have nothing to do with my actual cause for the miscarriages. He also didn’t test/ask about my karyotyping so would never have discovered the true cause if I hadn’t then pushed for that in the NHS EPU.

Can I ask how many miscarriages you have had and what investigations and treatments you have tried already? Sorry it’s so tough.

@Cosmos24 ok, thank you for sharing your story. I have had 11 miscarriages and 6 rounds of IVF. My IVF clinic consultant does not believe in the NK cells but after my recent miscarriage loss, I thought enough is enough so went to Prof Shehata for tests. It’s got to be the NK cells that are killing the embryos and can’t go through another round of IVF without something changing in my treatment plan. It’s a scary process with all the medications but I’ve been on loads with the IVF clinic so what’s a few more right?!? It’s so hard to know what the right decision is. Thank you again for reaching out. X

I knew it would be CRP and Shehata before I opened the thread. They are making millions on experimental treatment but not publishing research, its not on. Prednisolone is a serious drug, I'm a nurse and I've looked after patients who became psychotic after taking it.

A nurse for Tommy’s charity told me his clinic in infamous, they yearly announce record profits on unproven treatment.

I've had 6 miscarriages plus an ectopic. I saw Dr Thum at the Lister, he's for the immunes but actually will listen and make a decision with you. His approach is to test your blood and give you data on how your immune system will respond to prednisolone, intralipids and IVIG. Bloods + consult was 1k, after that he'shappy for you to arrange your own intralipids with NHS scans.

I'm lucky intralipids work as well for me as pred. There's a clinic near Birmingham called Cherish that offer intralipids for £250 a go.

I'm 22 weeks pregnant now. I found out after doing IVF with PGT (secondary infertility) that 2/3 of my miscarriages since the birth of my son were related to chromosomes. I did the intralipids anyway but I don't think it made any difference.

I would be concerned too. You are correct that use of steroids and lipids can carry risk of untoward consequences to foetus. There are occasions when steroids might be prescribed but again it depends on dosage and carries a risk which may be acceptable due to condition requiring prescription. It becomes a balance of risk. If you have no actual need for the treatment and it’s being prescribed just because that’s treatment that can support some pregnancies where their need is documented and supported by testing then that’s different. Lipids I am less aware of evidence around need in pregnancy and would be sceptical. If I were you I’d definitely attend NHS appointments and I’d request consultant led care and get an appointment with them asap. I requested consultant led care as I knew I wanted a section and not midwife led care via nhs. I had no problems doing so. I honestly don’t like the sound of what’s been happening with you at this clinic. Speak to your gp in the first instance if you’re worried. They will definitely know more than anyone on the internet and mumsnet.

I agree with quite a lot of the pp but this bit made me laugh Speak to your gp in the first instance if you’re worried. They will definitely know more than anyone on the internet and mumsnet.
I wouldn't have had my dc after rmcs if not for the information, advice and support I received on Mumsnet. GPs had nothing to offer me.

Intralipids are very safe, they are just fats. They have been used clinically for ages as food for people who can't take in nutrition in other ways.

The jury is out on whether they help reduce miscarriage risk/help with fertility. but they are safe.

Edited to add: And yes, GPs aren't very helpful. No shade on GPs, there is very limited research available on recurrent miscarriage and so there are no protocols to follow. There are only a handful of doctors who specialise in recurrent miscarriage in the country, and they often don't agree! I spoke to three (two privately) and got drastically different advice and treatment plans from each one.

There's a desperate need for research, which is why it is so dodgy CRP are making huge sums from women with experimental treatment without producing research on prednisolone.

Fertility clinics still shouldn’t be charging large amounts of money for add ones when there’s no evidence that they actually work. That is unethical and exploitative.

Just to chime in here as well… I went to CRP (private) after Prof Quenby (on NHS) identified I had very high NK cell count in my womb after a loss, but would not treat me with steroids. I went on to have another miscarriage. I definitely believe I have an immune issue going on when pregnant so I wasn’t prepared to go again with no change to treatment. I also have endometriosis which I know there is more evidence now may be auto immune related. So after trying CRP treatment protocol for a year (which crippled us financially) I ended up going on a strict auto immune protocol diet for three months prior to trying IVF and fell pregnant before our first cycle. I was then cared for (due to my son being restricted growth and evidence of an immune issue affecting my pregnancies) by the rainbow clinic in Manchester (NHS) - here I was put on an immune protocol which was the same as Dr Shehata’s if not more rigorous. I was on steroids until 23 weeks, hydroxychloroquine, heparin, aspirin, cyclogest and took myself to Cherish for Intralipids too. I’m now feeding my 16 week old rainbow baby girl.

I do think CRP take the biscuit re costs, and I don’t think they listen enough or factor in other possibilities - which I don’t agree with, but I don’t regret going there to find out what was going on. I don’t think I would have pushed so hard for treatment on NHS if I’d never gone to Shehata. Unfortunately the NHS just don’t have the finances backing fertility and miscarriage issues to provide good, informed care to the masses. I feel very lucky I was able to access some care to help me have my little girl. But after years of trying to work out what was going on, I felt confident my issue was immune related.

I’m not sure if this helps. Ultimately I think you have to dig deep and listen to your gut - which is hard to do when you’re in the middle of it all, just desperate for answers and help!

Think of it from their perspective. They are a business with a reputation.
You have asked for their services, but then questioned their guidance and advice, and tried (immediately) to reduce the scope of the service they offer (and how they make their money).

With clinics like these, you either sign up and spend what needs spending and follow their advice, or you don’t. They have no interest in someone who will (as far as they are concerned) reduce their chance of a successful client outcome, and wants to pay half price.

It’s a choice. You need to make it, and stop trying for some sort of half-way house.

They are a clinic as well as a business. OP should be allowed to weigh up options and decline non-essential care, and first trimester scans with a doctor whike on an already established treatment plan are the definition of non-essential.

When you’ve signed up for care with ‘early monitoring’, the scans are of course essential.

Thank you to you all for replying. It’s such a mindefield to know what is right.
I know the NHS also prescribe Prednisolone for NK cells (which I’ve been on before) so it’s not just privately that they do this. I’m tempted to go with CRP’s clinic as something has to be treated for my high case in NK cells. Manchester/Birmingham are not local to me unfortunately so wouldn’t be viable to visit them.
I know everyone is different so will have different stories but it’s just so hard to know that you are actually being cared for. Xx

Care to explain why clinically?

Most fertility clinics offer one early scan to confirm viability. Multiple early scans are for reassurance, there's no other clinical reason.

There's also no rationale for multiple doctor consults. The medication regime wouldn't change, this would only happen if the pregnancy ended in miscarriage.

Self-advocacy is really important when paying for fertility treatment and most clinics are open and flexible about protocols and add ons.

There are other clinics in London, I'd suggest having a look and a think. if you Google Reproductive Immunology it will come up. Dr Thum at the Lister is one.

But early scanning was found to improve outcomes, or it was when I read Prof Lesley Regan's account of it.

Iggi is correct. There's good evidence for early scans and reassurance - although I'm not sure that's what the hard sell at Dr S is.

Claire - I think it's easy to convince yourself that it's A or B thing but the evidence base is so incredibly poor on immunes that I'd be wary of being so sure. This thread is peppered with women for whom it wasn't actually the ultimate cause or who got pregnant regardless - of which I am one. You've been checked for sticky blood and so on?