Manchester NHS IVF - experiences?

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Hi! Just this week been to have bloods and US scan at reproductive health at St. Mary‘s.

I have (lean) PCOS and late 30s.

Bit frustrating as at every step you’re given a new time frame - but no overview of what the overall time might be and what will happen at each stage.

I've been told 12 weeks to hear back and then no idea what might happen after and in what time frame. I did ask today and was told to look at website. But this information isn’t on the website.

There's no info on decision criteria, overall timeframes, etc.

Anyone been through treatment recently at this hospital and have an idea what to exist? Thank you x

They have taken ages! I was told when I went for the baseline tests that I would hear back by 12 weeks time but it’s been nearly double that! It’s crazy! It’s good you’ve thought about going with Create! I hope it all goes well for you. I’ve waited so long to get here that I can’t think about being put through another referral process and can’t imagine how long that would take 😥. I’m hoping that they can go through the results and decide on a treatment plan too rather than having to wait longer 😣 someone I know also had IVF through SM and I was told that waiting for this consultation is the longest you’ll have to wait and everything is pretty quick after that so I’m counting on that!

Hi! Thanks for your advice! I hope it has improved since then 🙄🤦🏻‍♀️

@Itwillbeworthit morning!
I was in exactly the same position as you - scan and bloods with SM in July. I got my consultation appt for end Nov, but in the mean time had figured out you can push to get referred to a private clinic via the NHS. I looked at both Care and Create, and have ended up with Care.

I love the NHS and don’t want to slate it, but the difference between SM and Care is so obvious. I got referred to Care End Oct, my partner and I went for bloods/scans/semen first week Dec, had our consultation on Weds and can start treatment whenever we like in the NY (I have an ovarian cyst which needs removing so more likely to be spring time)

a couple of things worried me about SM - in my scan the girl very blasé said did I know I had a cyst, but gave me no more context. It was also flagged I have a heart shaped uterus (que hours of googling and worrying) only to find out with both Create abs Care that I don’t. I’m not keen on them just uploading results to the portal but having no one to talk to, so you end up down a rabbit hole thinking the worst! When we did finally have our consultation it was via video call where I could only see half the consultants head. With Care they made sure you both came into the clinic for face to face and didn’t feel rushed at all. I’ve also got the emails for the NHS coordinators at Care, and if I send them an email they usually call me back straight away.

I know it feels like you’re quite far along with SM now but if you can, I’d ask your GP for a referral to Care or Create (just know that Care does standard IVF and Create is natural). SM and private don’t seem to talk to each other as such, so you could investigate moving to one of them and still do you consultation with SM and see how you feel after it. I did also get the impression from SM that my treatment wouldn’t be available til March/April, so they are a bit behind the private clinics.

I think once it comes to treatment, both the private clinics and SM are similar, but I like how much easier it is to speak to someone at Care. Good luck and keep us posted on where you get to ❤️

Hey! Thanks for your reply 🤗it sounds like things are going so well for you! That’s great to hear! And it does sound like Care are doing a much better job and definitely much quicker!
I agree that it’s so annoying to be able to see the results and not have anyone to talk to discuss them further with you until ages, really not good for your mental health either 🙄. Thankfully my results were all fine but my husbands were very poor so he’s had to have 2 different types of semen analysis with St Mary’s and these have been uploaded so it was quite clear to see what was wrong and we already knew the issue as he had to have a semen analysis by his GP who discussed the results and told us that IVF is the only way we would ever conceive!
He has severely low sperm count so I’m sure ICSI would be the only way-do you know if Care or Create would offer that?
also it’s annoying that he’s with a different GP so I have to keep pushing him to chase up stuff etc, if he was to ask for another referral, wouldn’t he have to give a reason for it? I mean the consultation is next month so I don’t think he could say we’re waiting too long?
my GP have no idea about this probably and I think because the issue is not with me I don’t think they could make a referral😕
Good luck to you as well!! I’ll keep you posted ❤

Thanks for sharing!

I’d second a lot of this.

Like you, I later discovered you can do a private referral via your GP and request your own provider. In my case I have PCOS and am high risk for OHSS, so there is a good clinical case for mild ivf with Create.

I currently have both referrals on the go, my GP echoed what you’ve said in that they are carried out independently of one another and the new funding request has not halted the existing process with SM.

Once the referral is through to create they will also move a lot faster.

To be frank I also never want to go to St. Mary’s again. Awful place, incompetent staff (referring only to the old building where they do the ivf referrals here – have been going to the new part for gynaecology for years and they’re lovely). The vibe I got from everyone I dealt with there was contempt (just can’t think of a better way to describe it). This is not true of any other experience I’ve had of the NHS.

Sorry to hear about your experience with the scan and test results causing unnecessary worry!

Glad to hear things are moving for you now :)

Hi All!
Thought I'd jump back into this thread!
I had my referral for Create done in November and had my initial consultation beginning of December, they did an internal scan where they discovered a very mild case of PCOS (this has been mentioned in the past but never confirmed, they picked it up straight away) scanning blood tests and spoke about what will happen going forwards. I have a zoom consultation booked for the beginning of January where we will discuss our protocol and medication ready to start my first round on my January cycle! Very exciting but very scary!! Create have been brilliant so far, can not fault them, any enquiry I've had they have responded within the a couple of hours!
@Itwillbeworthit your partners results sound very similar to my partners, we will be having ICSI with Create. I would definitely look into transferring your funding if possible, things move a lot quicker and it's clear the difference in care you receive x

That is great news! ❤️

That’s great news!! ❤️❤️it’s great to hear that things have moved so quick for you!
yes his GP did a referral yesterday so I’m hoping they get in touch soon! But I think I’d have to also ask my GP to send a referral? It’s annoying we have different GP’s 🙄. What do create mean by ‘mild IVF’? I know we will need icsi because my partners sperm count is severely low (<1 million and 99% immotile) 😣

Mild IVF uses a lower dose of hormones (if I understand correctly) so can be good for certain people, like in PCOS you might have high AMH making you at risk of OHSS. Create have lots of info on it x

Create do a weekly online zoom presentation if you will which explains it perfectly. You also have the option at the end of ask any questions, worth booking onto we learnt a lot from it 😊

Yes I think it’s every Tuesday.

One thing I did notice is that some of the information they provide is different to that on the HFEA website. For example, they referred to research that suggests that success rates are the same in mild and standard ivf (but with additional benefits), whereas on the DHEA website it says that although there might be clinical reasons for using mild ivf, it has lower success rates than standard ivf.

The person leading the webinar was a professor and expert in mild ivf. I didn’t look further into the actual research myself yet.

Thanks everyone! I’ll look into booking the zoom session ❤️❤️

Hey! I hope you’re well! I was wondering how your consultation went with SM, please could you give me an idea of what to expect if you went, I’m getting so nervous about it and I know it could go either way, also I hope things are moving well for you! Me and my husband have also both managed to get referred to Create too so we’re waiting to hear back 😊

Hiya! I actually haven’t had my appointment with the Dr from SM yet, as it was postponed due to the Dr strikes. So will now be next week! Like you, not sure what to expect!

For the referral to Create, my GP had to complete an IFR, which has been rejected by Manchester ICB. Create told me they don’t have an existing partnership with the Manchester ICB, so the route would be an IFR (individual funding request). Is this the route you went down for the referral?

Have you been given any information on what to expect at the appointment? (Like you, I’m completely in the dark!)

Hope you managed to have a relaxing break in the meantime! :)

Oh not long to go then! I hope it goes well! Mines on the 17th! No I haven’t been told what to expect or anything and in the meantime I’m trying my best to stop thinking about it too much haha although it doesn’t seem to work!
My Gp hadn’t even heard of Create but did the referral anyway, I think the ICB for us would be East Lancs but no one’s mentioned anything about that to us yet so I still don’t know what’s happening 😩🤦🏻‍♀️. Anyways, I would really appreciate it if you could give me a little update on what to expect after you’ve had your appointment! Fingers crossed for you! 😊

Thanks, will let you know what it’s like! And know what you mean, it’s definitely a challenge to put it out of mind and not stress in the meantime about the what ifs! x

Hello,
I hope it is ok I jump on this thread
myself and my partner were referred to st Mary’s in august 23 and got an appointment for bloods etc pretty much straight away so attended that on the 30th august. They then told us 3 months to wait for results. I rang back at the end of November and the girl on the phone was quite blunt and was like we are still on the wait list for a consultation appointment and to ring back end of January.

Our issue is male factor and we received another letter in December for my partner to come back in feb for another semen analysis however after going private we have since found out this is unnecessary as we will need donor sperm. My partner has been trying to ring st Mary’s to let them know but had trouble getting through to someone.

we asked our GP to refer us to Create after reading this thread to see if the process will be quicker. Our GP is in Oldham. I am hoping we can get funding for Create but our GP has been working on this referral this week so we shall see.

Such a stressful journey but hopefully we get somewhere in 2024.

Hi! It sounds like you’ve also had issues getting through to anyone at SM :( I’ve also experienced the same blunt response whenever I’ve called and it’s just so rude but I just try and stay patient, it’s so frustrating though, I hope Create get back to you soon and the funding is approved! It really is a stressful journey 😣 I hope 2024 is a better year for us all ❤️

Sorry your going through it 🙁

My GP is based in Rochdale, dealt with Oldham hospital for gynae appointments and we have been accepted by CREATE, due to start treatment in a couple of weeks. If it helps my GP didn't know where to start with the referral for create and turns out all they needed to do was send over our contact details over, no forms to fill out so it was quite a straight forward process, if you haven't already you can call create and they will give you the email address your GP needs. Once this was done for us everything moved really quick!

Good luck x

Hi Ladies, I hope I can join?
I'm 36 and I've been TTC for nearly 2 years now. Went to my GP for help back in October and got given a referral to St Mary's, with my first/baseline appointment due to take place next week.
I had no idea whatsoever about how bad they are until I read here! So glad I found out in advance so I don't get a shock or end up feeling paranoid thinking it must only be me.
May I ask what I should expect at the baseline appointment, and roughly what/when the next steps will be?
I've seen a few of you on here mentioning getting your referrals changed to create or care instead. I'm keen to do the same, but would I need to start all over again with another baseline appointment if my doctors were able to move me over?
Thank you in advance and sending everyone lots of luck with your journeys x

@MancBee87 hey, I like your user name! :)
I never actually got referred to St Marys I went straight to create so can't comment on them, but the same as you I've read the wait times can be really bad!
At my initial consultation they did an internal scan and took bloods for both me and my partner, they discussed our ttc journey so far and gave us a plan of what would happen next, that was beginning of Dec and my meds are due to arrive tomorrow, would of been sooner but they closed for Christmas.
Based on my experience so far I would say try get a referral to a private clinic if possible, sounds like things do move alot quicker, I'm guessing you would need to rebook the initial appointment
Hope that helps x

Hi @MancBee87!

At my initial SM appointment in June, I had an ultrasound done in the new building – the lady there was lovely, friendly and helpful!

After that they took blood over at old SM. It was pretty straightforward – they did the bloods, told me to make sure I was taking vit D and folic acid, and that was it. They also told me to pick up a pink form on my way out (as mentioned above, the reception staff seemed to have no idea what this was or where they might find it, and when they finally did find it, it turned out to be an IVF application form essential to staying in the referral process).

They didn’t have much information – they weren’t able to indicate timelimes, what to expect, give an overview of the process, anything like that. Indeed, the nurse doing bloods seemed to bristle when I asked about timeframes. There was also a lady at reception who looked me up and down very slowly while I stood waiting for them to find the form. Very odd vibes to be honest! But as you say, if you experience anything like that now, you know it’s definitely them and nothing personal to you!!!!

After ringing relentlessly the same week just to find out when to expect to hear back, I was finally told to expect a 6–12 week wait for the next step. It has turned out to be 7 months. I don’t know if hassling them would have sped things up – I started pursuing a private referral in December so haven’t been chasing them, which I might have done otherwise.

If you’re interested in a private referral, your GP should be able to initiate this. l would keep the SM referral in process in the meantime though, in case there is any issue with the private referral.

Wrt Create, I found out this week that they have partnerships with Greater Manchester ICB in every area apart from Manchester proper and Wigan (so I suppose maybe Trafford, Oldham, etc etc should all be fine. I don’t know exactly what area ‘Manchester proper’ covers, but if it’s unclear your GP should know which area they fall under.)

It’s still possible to get a referral to Create if that’s your preference, however there needs to be evidence of clinical exceptionality.

Not had experience so far of Care or Manchester Fertility, but as I understand it, Manchester ICB does have partnerships set up with those, so referrals to them should also be possible.

X

Sorry this should have said ‘started pursuing a private referral in September’ not December :)

Thank you for your reply! I’m so pleased for you that you have been seen so quickly and the process has been smoother..
can I ask when it was you contacted create? Our referral has been sent to them last week but haven’t had any contact yet. Wondering whether to give them a call to check they received it

We are under Manchester Fertility privately ( well my other half was) but I was kind of hoping create would come through quicker so we might not need private just yet. Our experiences have been positive with them so far

@HoustG after my funding was accepted Oldham hospital sent a letter to my GP to do the referral which caused a couple of weeks delay due to the confusion I mentioned in the last comment but once this was done I'd say it was about a week before I heard from them and then they booked my initial consultation in a couple of weeks after that. I did call a few times because I'm impatient and don't like things being out of my control haha! They did check their system when I called so might be worth just seeing if they have received anything! They did say though the NHS department was different so if they haven't done their part the women on the phone couldn't see anything, if that makes sense! X