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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

IVF St Helier/Epsom

89 replies

Makino · 22/04/2019 11:11

Hi all, I am struggling to find any reviews for IVF treatment at St Helier hospital.

We have funding approved for our first cycle but just wanted to know if their were any success stories.

They have said we only get 1 round of IVF followed by 1 FET when NICE recommend 3 rounds.

I really hope someone can share their experiences with me.

xxx

OP posts:
Makino · 04/06/2019 19:49

I'm bumping this thread because I also wanted to know what experiences people had with NHS.

If our NHS funded round fails and we also have nothing to freeze is that our lot or does the NHS make any exceptions if 1 round is all we get and not 3 as recommended by NICE?

OP posts:
Zest11 · 04/06/2019 20:52

I don't have anything to add I'm afraid but I am posting to see if anyone replies. We just get 1 cycle too and am wondering if there's anyway we can get another if the 1st fails.

mayihavesomecakeplease · 05/06/2019 06:35

We had to use st helier for our first sperm analysis, but then got referred elsewhere for the rest of our consultant appointments and for our (hopefully) ivf- still waiting on finally knowing if it's possible 😕

Are you in the bromley ccg? I don't think success affects whether they pay for more from what I understand, as I don't think they're required to stick with NICE recommendations

Makino · 05/06/2019 19:32

@Zest11 I just couldnt find any threads regarding the 'what if' scenario if our first round fails.

All we have been told is we get 1 round and 1 frozen transfer.

@mayihavesomecakeplease we had all our work done at St Helier as we live in Sutton so I guess we are part of St Helier and Epsom CCG.

I really hope you are right as my husband has low sperm count.

OP posts:
smarty14 · 05/06/2019 20:43

I'm under st helier also but not got to the ivf stage yet. But the way I understand it if the first fails then you will have to go private and pay for any more rounds ☹️

mayihavesomecakeplease · 05/06/2019 22:27

Just to clarify -- I meant that they would not pay for more than 1 round, regardless of whether it was successful.

I think they do give you 1 or 2 FET though in addition? If I'm understanding the CCG guidelines..

Makino · 06/06/2019 12:36

@smarty14 this is my fear if we have nothing to freeze and fall back on if it does not work!

@mayihavesomecakeplease Yes we were told 1 IVF round and 1 FET as per St Helier and Epsom CCG. However was wondering if there were any exceptions made when that 1 and only round fails.

OP posts:
Lucindaa · 06/06/2019 14:34

We do not qualify yet as we have not lived in our area for over 3 years.

@Makino its an interesting question because I know my friend who had a breakdown after her NHS funded treatment failed and was then just left to pick up the pieces without any support and it broke her marriage.

@Zest11 this is exactly what I wanted to know. For instance if you had a failed IVF round does that mean you cant get approval for however long you live in that CCG?

@mayihavesomecakeplease I'm not sure NICE even come into the equation when the CCG is approving treatment.

Lu x

Makino · 06/06/2019 18:58

@Lucindaa I hope your friend is doing ok now! I know this is going to be crazy difficult time for both me and my DH.

I can't find a single thread on here about 1 round CCG NHS trusts and if people were lucky to get another round due to an appeal or discretion.

OP posts:
EarlGreyT · 06/06/2019 22:18

If our NHS funded round fails and we also have nothing to freeze is that our lot or does the NHS make any exceptions if 1 round is all we get and not 3 as recommended by NICE?

Unfortunately IVF funding is dependent on what your CCG funds and not what NICE recommend.

I am not sure how to put this less bluntly, but f your first round fails and you get nothing to freeze, unfortunately that is your lot and the CCG is very unlikely to make an exception for you.

Statistically a cycle of IVF is more likely to fail than it is to work so if the CCG started making exceptions and offering people whose first cycle failed another go on the NHS, they’d have to offer further rounds to most people they treated.

I had IVF at st Helier so happy to share experiences if you wanted to ask anything further. I was unfortunately on the wrong side of the one cycle and that’s it rule though.

KJC7 · 07/06/2019 09:45

Hi EarlgreyT,
Sorry to hear that, did you go on to have the frozen round?
I have my first IVF appointment at st Helier in a few weeks. I understand that I can choose to transfer to another hospital following this, and am struggling to choose between St Helier and Kings. Kings publish their success rates, but St Helier I can only find that they’re “in line with national average”. I doubt there will be little difference between them, and have been happy with the care I’ve received in the Gynae clinic at St Helier so far, so will likely stick with them. Would you recommend St Helier based on your experience? I’m also wondering about waiting times as have no idea about this. I know the first appointment counts as the “treatment” in terms of the 18 week pathway, so without the threat of a breach, i’m Wondering if it’ll be a long old wait following this and I should set my sights on 2020.
I’d appreciate hearing anything about your experience.

KJC7 · 07/06/2019 16:48

@EarlGreyT 👍🏻

Mistymeow · 08/06/2019 06:26

Hi,

We were approved for IVF at St Helier in December. After this initial appointment (where the consultant told us we were eligible) we were sent paperwork, approved after a few weeks and then given a date to begin late January. I was impressed with the speed! I did fall pregnant naturally 3 days before the appointment but sadly suffered a missed miscarriage. I am seeing the rmc at St Helier next month and from that the infertility consultant will review. I'm hoping we will be able to start ivf in a few months, depending on my blood results.

@earlgreyt sorry to hear your cycle was not successful. I hope you are doing well and things are more positive. Were you happy with your treatment at St Helier? I must say I have been looked after by them throughout my miscarriages and they were incredible, so I'm hoping the assisted conception unit is similar.

KJC7 · 08/06/2019 11:03

I’m sorry to hear that @Mistymeow Our appointment took much longer to come through -16 weeks from the referral from the gynae team but I guess it just depends on the waiting list at the time.

@EarlGreyT sorry to hassle but did you see my message above?

Lucindaa · 09/06/2019 20:52

So do you think that because I have had to go private I will not get the chance for NHS funded treatment when I do qualify?

EarlGreyT · 09/06/2019 22:11

@KJC7 sorry it has taken me a few days to post on here again.

I didn’t have the frozen round, just the fresh as I had nothing to freeze. I unexpectedly had only 2 eggs collected, luckily both fertilised and made it to day 3 so I made it to transfer, but the cycle was unsuccessful.

When I had my treatment, I was told st heliers success rates were slightly better than kings. If I remember correctly, st Helier didn’t have success rates published on the HFEA site as St Helier didn’t have an embryology lab, so fertilisation and transfer for their NHS patients were done at kings and st helier’s success rates were lumped together with kings by the HFEA. I don’t know whether this is still the case or whether they do have their on embryology lab now.

I was quite happy with the clinic in general. I didn’t stick with them for my subsequent (self funded) rounds though as 1) I changed it a clinic with better success rates, 2) they weren’t very convenient for me to get to and 3) I found the way the scans during treatment were organised a bit chaotic and it added to the stress of the whole thing. I did consider sticking with them for subsequent cycles though especially as their self funded treatment prices were cheaper than the private clinic we changed to.

I think the wait from my first appointment with them in the assisted conception clinic (once we’d been told we had funding) to starting treatment was about 2 months.

Hope this is helpful. I’m happy to answer anything else you want to ask. It’s quite a small unit and when I was with them I couldn’t find much online about others experiences there.

EarlGreyT · 09/06/2019 23:10

@Mistymeow sorry to hear about your missed miscarriage. Thank you for your kind words too. I am quite a lot further along in my journey now, but was happy with the treatment at st Helier and I found the team really good. The administrative side of things wasn’t so good, but the care and the clinical side of things was excellent.

EarlGreyT · 09/06/2019 23:15

So do you think that because I have had to go private I will not get the chance for NHS funded treatment when I do qualify?
That is dependent on your CCG. Some will exclude you from NHS IVF treatment if you’ve had more than a certain number of goes of IVF privately. What that “certain number” is, is again dependent on the CCG. Your best bet would be to look at a copy of your particular CCGs infertility treatment policy as that should give you the answer.

KJC7 · 10/06/2019 08:07

Thanks @earlgreyt that’s really helpful information. Particularly regarding the success rates -I think the same applies now as the HFEA still only shows kings’ results and not St Hel. I think we’ll likely do the same and move elsewhere if we’re unsuccessful and have to go private, as it’s also not that convenient for me to get to St Helier.
You mentioned that you found the scan appointments quite chaotically organised? I’m already a little concerned about this as I’m a clinician and have patients booked in 6 weeks in advance, so taking time off is very difficult if not booked well in advance. Is it true that you won’t know which days you come in for scans until you start treatment? I can’t see a way around my work problem without just talking the entire 2 weeks off.....

Makino · 10/06/2019 11:37

@Mistymeow sorry to read about your miscarriage x

@EarlGreyT I'm also sorry your IVF round that was not successful. x Thanks for the valuable insight into St Helier as there is litterally nothing else about the IVF treatment at St Helier.

@Lucindaa It might be worth investigating this further with your CCG and find out where you stand.

OP posts:
Mistymeow · 11/06/2019 02:10

Thanks so much for the info on St Helier. When I know more about my treatment I’ll post again.

Makino · 12/06/2019 18:29

I spoke to my GP.

Although our CCG offers only 1 round of IVF treatment our GP told us there are exceptions that are made if a round was unsuccessful due to process failures in egg collection/management etc.

OP posts:
EarlGreyT · 14/06/2019 11:47

@KJC7 I found planning life around having ivf a bit of a nightmare to be honest and I found it really stressful. Stress has no bearing on outcome, but it just makes the whole experience more unpleasant and I found the first cycle and the uncertainty which went with the whole process by far the most difficult of all of them.

Not sure if this is helpful, but I’ll give you a brief outline of how treatment and scans etc work. My treatment was a few years ago so things may have changed a bit, but I doubt they’ll have changed loads. I think I can remember it correctly, but things may have faded in my memory slightly with the passage of time and also with having had subsequent rounds of IVF.

On the long protocol..... start down reg injections on a Wednesday )after taking the contraceptive pill for a few weeks), down reg scan after a week on a weds AM. If everything is ok at this you start stims 2 days later (on the Friday). I wasn’t down regged enough and had to have another week of down regging (which totally threw all my timings with regards to treatment), but most people only need 7 days of down reg injections. Stims start on a Friday after the satisfactory down reg scan. After 5 days of you have a blood test (Wednesday AM), if this shows high oestrogen level, you have a scan 2 days later, if it doesn’t, you go for a scan the following Monday (5 days later). Once you start having scans on stims you go every other day until you’re ready for egg collection. Once you’re ready for egg collection, you have your trigger shot that evening (or I’m guessing if your scan was a Friday, the following evening) and egg collection 36 hours after the trigger.

St Helier only did scans on Mondays, Wednesdays and Fridays when I was treated and they are always in the morning. The reason the whole thing was a nightmare is because you didn’t get an appointment time, so you had to queue. They started scanning at around 8.30. The doors to the clinic opened at 8 and when you arrived, you wrote your name on the white board and they’d scan you in order of arrival. What people did though in order to try and be at the front of the scanning queue was to arrive any time from about 7AM onwards and sit on the floor outside the clinic in a line so you could be at the front of the queue when the doors opened and you could put your details on the board. If you turned up at 8.30 there would usually be somewhere between 5 and 10 people in front of you.

Hopefully this will help you plan a bit, but you do only know when you are going to be scanned when you start the treatment and it all depends on how you respond. But they definitely only used to scan on a Monday, Wednesday and Friday morning.

For egg collection you’ll need the whole day off work, but of course you won’t know when this is going to be until 2 days before it and it’s dependant on how you respond to the meds. They usually say people need to stim for 10-14 days but it can be longer or shorter. With me they kept moving the goalposts and saying they thought it would be after the next scan, then I’d have that and they say no, it’ll probably be after the next one which I found really frustrating and stressful.

Hope this is of some use. Happy to answer any further questions if you have them, although I may not respond as quickly as I’d like to!

EarlGreyT · 14/06/2019 11:56

@Makino
That may be the case in theory, but the reality is that is extremely unlikely to happen. The clinic do IVF all the time so they are unlikely to make mistakes in the process to the extent of being allowed another NHS cycle.

if people were lucky to get another round due to an appeal or discretion. the CCG
won’t give another round on the basis of discretion. Unless you have extremely good grounds for an appeal, I’m afraid you’d almost certainly lose this, waste a lot of time and cause yourself a lot of stress in the process.

The CCGs are trying to save money (which is why very few of them offer 3 cycles of IVF on the NHS even though it is what NICE recommend) and while what your GP told you is theoretically correct, this is so unlikely to happen in reality it’s not really worth thinking about.

Tulip20 · 14/06/2019 20:08

Hi Makino,
Thought I would leave a response as I remember searching for the same thing before my IVF cycle at St Helier!
I had ivf at st helier 18 months ago. Unfortunately it was unsuccessful. We then had our frozen cycle (we had 3 frozen embryos)which was also unsuccessful (they also lost one embryo when thawing - I am not sure if that is normal of not). Despite it not working, we found everyone at the clinic kind and helpful (bar one of the nurses who seemed a bit offhand) and the egg collection and day surgery/ward was excellent - couldn't fault them.
Since both our fresh and frozen transfers were unsuccessful we felt that we needed a change for our next round. We actually went to Reprofit in the Czech republic (it was actually much simpler process as I went there for 10 days, hubby came for 7, and made it into a holiday whereas it had become stressful trying to fit in appointments around work in the uk). We got 7 excellent quality hatching blastocysts (they also do icsi as standard (despite being much cheaper than UK- a cycle cost 2000 euros) and our ivf cycle without isci at st helier we only got average embryos at best). From that first cycle there we now have 5 month old twin baby girls, and still have 5 embryos in the freezer at Reprofit if we decide we want another baby down the line.
I'm not sure if this is helpful or not, but I just wanted to pass on my experiences and to say even if it doesn't work first time, don't give up. I remember so clearly how heartbreaking our infertility journey was. Good luck x