Did you get better IVF treatment going private?

[Camkid12]

For those who had NHS treatment then went on to have private treatment, did you feel that you got better treatment when you paid for it?

I've just had my second cycle cancelled after being on downreg for the last 5 weeks. Not because I'm not ready to move to stims, but because they hadn't checked my thyroid. It's borderline underactive and TSH now sitting at nearly 7. i.e. too high for IVF. Just had a call from my GP who says he wont test again until i've been on higher dose levothyroxine for 12 weeks!

I've lost all faith in my IVF clinic now, as I feel this should have been checked over a year ago and I could have started medication then. It was only because I took it upon myself to get it checked after 1st cycle failed and I then raised it with them.

I really want to make a complaint, but what will that actually achieve? I'm now stuck in limbo waiting for my TSH level to come down.

Would it make any difference going private?

(I'm in Scotland).

Any recommendations or shared experience would be appreciated. Feel free to PM me as I don't think it's permitted to name/recommend clinics on here.

Thanks. x

[Millbanks]

Hi lovely, so sorry to hear about your thyroid and delay. So frustrating.

I started my IVF with the NHS then moved over to Private due to Covid (not because of lack of care). However, I felt with the Private clinic they were much more willing to try different things and were on top of all the blood work I needed doing.

Having said that, when I had my bloods done for the immune profile, I had to go in 3 times as the nurse used the wrong tubes the first time, then they took them on the wrong day (for delivery to the lab) - so it wasn't without fault. I also had to double check my protocols each time as they made some errors on which meds had been ordered.

I actually had no problems at all with that kind of thing in the NHS.

I think what is tricky with the NHS is the lack of consistency of care, so I saw a different consultant each time, a different nurse each time and they could never find my blood results because its all paper... this means that things do get missed in a way that they don't really in private clinics.

I had high TSH and was put on levothyroxine when I started TTC - it came down pretty quickly, I can't remember exactly but I am sure it was less than 12 weeks!

The waiting is so hard, I would be inclined to have a consult with a private clinic and just see how you feel about it. Most of them do free quick phone consult, where you can ask lots of questions and get a feel for them.

Our IVF journey was quite complex so going privately was the best option for us - just because a lot of the tests we had weren't available on the NHS.

However, if your treatment is quite straightforward then it's maybe not needed.

xxx

[Camkid12 in reply to Millbanks]

Thanks for sharing Millbanks. I'm sorry you've had a tough time too 😔

You're so right about the inconsistency - I see different nurses each time and haven't even met my consultant! That's encouraging that your TSH changed fairly quickly. They started me on 25mgc back in November, and by the end of January it had actually gone up a tiny bit. I'm hoping that now being on 50mcg will be enough to do the trick. We were only referred due to MFI, so hopefully getting TSH down will be the final piece of the puzzle! I didn't respond very well to stims either - only 5 follicles and 4 eggs collected, but our 1 embryo we had they said looked good.

I think i'll have a look at private clinics and see what they say - but I don't think this is guaranteed to be any better. No harm in asking though. xx

[Millbanks in reply to Camkid12]

Aw thank you - yea long old road but we got there in the end!

Gosh that's strange that your levels went up when you were actually taking LVT - fingers crossed the higher dose helps - I was on 50mcg for a while then reduced to 25mcg to keep it stable.

I think what is quite good about private clinics is that they will play around with different stim doses and types to get you to produce the best quality / highest number of eggs - whereas I think the NHS are pretty standard in the drugs they use (for obvious reasons)

I would give your local private clinic a call and just see what they would suggest.

xxx

[MrsOrangejuice]

Sorry about the delay and the clinic mess up - it sounds very frustrating. My NHS clinic (not in Scotland) were the opposite and obsessed with thyroid and wouldn't let me do anything until it was where they wanted (it was fine, they just wanted it <2 as standard, which meant delays while my GP got the dose right). I had one NHS round that was cancelled when the pandemic hit, then a year's delay, then another round and a transfer. The clinic doctors and nurses were fantastic but extremely busy and you had zero flexibility - had to take pill to start when they needed to fit you in, and they couldn't do anything or be contacted on a weekend of out of hours. They did masses more monitoring and blood tests than my private clinic which felt more tailored. But aftercare after an early loss was non-existent and they took months to get back in touch, which was a surprise, but they were just so busy. By then had gone private as the NHS had such long delays, even on FETs. We had little choice really where to go as we're in a rural location and so many satellite clinics were closed. But comparing them to NHS, they were super responsive getting you on board, and you could start cycles immediately - the flexibility and willingness to start cycles/transfers again without breaks was a big plus. But I was surprised by the lack of monitoring, access to consultants and general lack of care - they messed up my meds, rarely updated me, forgot to tell me results and generally let everything be nurse driven. They also added charges everywhere (prescription charges, very expensive meds if you went with their provider, charges for a phone call with a doctor...) However, when I started insisting on speaking to a consultant, or having everything double checked and raising questions, it did all change - like they took an interest. When I read on here about some of the care others got privately I was pretty disappointed as it's so expensive. But then I think everyone will have had very different experiences. Ultimately, once I pushed with my private clinic, they really stepped up and our treatment worked. But I'm not sure you should have to do that, and different clinics and doctors will all differ. Maybe best if you get PMs on specific clinics in your area - I wish I'd done that as I would have been a bit more prepared for some of the issues. x

[Camkid12 in reply to MrsOrangejuice]

Thanks MrsOrangeJuice. It's not fair that you had to fight to get them to step up and give you proper care and treatment, but I'm glad you did and it worked for you!

I think you're so right - service will vary from clinic to clinic and doctor to doctor, regardless of whether it's NHS or private. I think that's why I'm trying to hold out and be patient - the nurses have all been lovely, but it's the management of my actual treatment that's upset me the most. After arranging thyroid checks wit my GP, of my own accord, it was only then that they told me they like it to between 2.5 and 4. If this is their own criteria then why didn't they check it at the start?? It just bamboozles me.

I think I'll do some research whilst I'm waiting for my thyroid to get it's act together! x

[KiboXX]

I think it massively depends on the clinic to be honest. I had three rounds at a clinic near to me, paying privately but they also take NHS patients. Two of my friends had funded rounds there whilst I was having my private treatment and we didn’t get anything they didn’t. It wasn’t the most progressive clinic though, had quite an old school approach (in my opinion).

We moved to a private clinic in London for our 4th round and had a completely different experience. Very progressive, much more personal and we had much better results.

I guess what I’m trying to say (in a very long winded way 🤪) is not all clinics are created equal, regardless of whether you’re paying them or not. Private doesn’t always equal better treatment so it’s worth talking to other clinics and getting an idea of how they work before making any decisions xx

[Redsequin in reply to KiboXX]

Hi Kibo. Would you mind DMing me which London clinic you were with? Pretty happy with ours so far but always thinking ahead just in case! x

[KiboXX in reply to Redsequin]

Of course, no problem 😌 xx

[Tnthketnf]

Hi CamkidI have had experience with NHS treatment in Scotland and private treatment abroad.

Just to add here that in Scotland there's only one private clinic only (!) You can self-fund at the NHS hospital but I was told you get exactly the same treatment, same staff just skip the waiting list.

I don't have thyroid issues so I don't have experience on that. The NHS clinic never checked this after the referral however the private clinic did a test just before my cycle to have an up to date result.

In general I found the actual treatment in each self in not different.

It just what you are willing or can afford to put up with

The massive difference is the lack of Patient-centred care with NHS. Your treatment is based on what works for most people and not specificallyfor you. I found that they are hyperfocused on avoiding complications . And some strict rules like BMI so that they can limit who has treatment. The private clinic never weighed me they were satisfied with the weight I reported. Maybe because I appear to have a healthy weight or they don'thave strict rules? Who knows

In terms of continuity of care as other people said with NHS you don't get the same doctors/nurses, just whoever is on who just looks at your notes 2 minutes before they see you. The result is that you repeat yourself a million times and also mistakes repeated because they didn't notice what happened last time. In the same context I would add is the lack of communication. This was very hard to cope with during the covid delays. You phone and speak to different person each time who may not be aware of everything that's going on and they might tell you something different from the last person. They don't always answer the phone and You don't get an option to email them. There have been many occasions where I had to phone 3 and 4 times to get to speak to someone (only to be told that they need to look at my notes and call back !!! ) Also changes that they don't communicate such as they made changes to requirements for the proof of MMR vaccination which they only put on their website and never bothered telling patients when being booked resulting in me arriving to sign forms and being told that i can't go ahead if I don't produce the mmr proof from the GP. Luckily I was able to sort this quickly but imagine all this stress last minute. Anyway..

All this was never an issue with the private clinic abroad. I had a dedicated coordinator whom I would contact via an email any time I needed. She would always answer in a few hours or the next day due to the time difference. I had a specific doctor deciding and undertaking my treatment. My protocol was individualised. The other positive is the lab conditions, latest equipment and treatments available. With NHS most options aren't available as they are classed as add ons -only what guidelines recommend. That in general might protect you from unnecessary procedures with no likelihood of improvement to your outcome but it also means that you can't try anything different thar might help.

I also found that both the NHS and the private clinic do not care about the male factor. I had to insist with the private clinic to use the zymot for sorting the sperm. I felt this helped somehow as it was our first time to get a day5 blastocyst. In the end it failed and my eggs got blamed again.

Anyway I think that if someone's finances allow them to go private they shouldn't hesitate worrying about the quality of treatment in a private clinic. Reputable clinics that are regulated will offer good treatment.

Equally I wouldn't expect miracles from a private clinic. Just patient centred care and willingness to offer more options than what the strict NHS guidelines say.

Sorry for the long reply

😁