I have just finished my first free round of IVF on the NHS.
Amazing team. So what I am about to say is not in anyway bad mouthing the NHS. I just wish to see if anyone else out there has had a similar experience
So... I had my first embro planted in may(non successful) after 5 eggs were taken from my egg collection.
Days after I got a call to say the embryos needed a little more time before freezing but where looking good. On day 4 I get a call saying sorry we had a power cut, 3 died but one made it and looks ok for freezing. Since then I had another round - frozen. But my body didn't except the drugs. I then waited some time and tried again... where my body did take to the drugs.... and yesterday was due to get the remaining embro transferred . But 30 mins before my app I got a call to say on foring the embro it died. Causing my round to be cancelled and also to complete my free round with the NHS.
Which has left me feeling a little cheated. Has anyone else had something happen like this to them? If so ... please could u share with what happened? What you did? Who you spoke to? What the outcome was?
Many thanks in advance.
Sophie
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When I got the call the first time on day 3... I was told that my 5 embryos needed a little more time but were looking good And that they would check on them again on day 5. But on day 4 I got a call to say they had a power cut and that 4 had died but not to worry about it as it didn't look like they was good enough anyway to make it. But day 3 that's not what I was told at that time.i didn't question it at that time has I had just had my first ever transfer. But now after yesterday.... I feel cheated and a little confused on how this happened.
I am waiting on my midwife to get back to me. But because of time of year I might have to wait for the new year so thought I would hop on here and see if anyone else had a simpler experience. But maybe I'll chase up tomorr. Many thanks x
If I were you, I would want to know my rights. The powercut was not anything to do with you so they can't just say you've used up your NHS IVF round. Every round counts and I would request they discuss this with their IVF board(or whatever they call it) and recommend you restart your round. Let us know how this goes.
Hi. Thanks for getting back to me. I was like u feeling the same and wish to get to the bottom of it. But I have asked before in a passing app and just get told .... they wasn't going to make it anyway. Which is easy to say now they have gone! But I am now waiting on someone to get back to me. I will be following up with them tomorr as now , I no what I am feeling is right, as ur now the second person to respond along the same lines. As at first I thought it was just me over thinking it.
I do hope you find your answers. On top of all these, you've just gone through a cycle of IVF and would need to let your body calm down so do take care.I found this link and thought it might be useful for you to just have a light reading on.
Maybe see if there’s anything on a signed a contract, not sure how it works with nhs. I would be escalating it to a senior manager though and if getting nowhere mention hfea. They might offer a free go. I’m sure I’ve seen some nhs clinics do this on here albeit very rare. Best of luck x
I would take this further. I would be highly surprised if they don’t document every single stage of the process so I would demand to see the notes they made in relation to the embryos development. Every single time they check on them they will, I’m sure, document how they are progressing. They’re your embryos so you should have a right to seeing this documentation.
You can see on the notes whether they were doing well or not before the power cut - if they were I’d say you have a strong case for pushing for another free round and maybe even some compensation for the distress caused. If they weren’t doing well as they are now saying then at least you know & can stop wondering.
I think as the power cut was not your fault you might be able to apply to the CCG for an extra round of IVF. You have to complete an individual funding request the clinic should know about these. Do you have an appointment with the consultant after the failed cycle? Maybe discuss then?
I haven't had this happen to me but sounds like an awful thing to go through. You need to contact tour local CCG and argue your case for another free round on the NHS. I mean, with a power cut that hurt 3 of your embryos you were left at a disadvantage. Make up a fuss and argue your case. They do have the power to give u another go.
I would definitely lodge a formal complaint (in writing). You can add that you were unhappy with the response that 'they wouldn't have made it anyway' as no one can possibly know that for sure. It's not like you lost 1/4, you lost almost all of them. Have a look at the HFEA guidance here: hfea.gov.uk/contact-us/maki... Follow it to the letter and get HFEA involved in step 2 if you need to. You should also include in your complaint that you will refer the case to HFEA if needed. xx
I am really sorry for your experience and mine with NHS was a bad one as well. We did 2 rounds with them 1 we paid and 1 was for free. I had so many stupid situations starting with when they couldn’t take out my eggs for no reason and from 18 follicles only 6 eggs were retrieved and ending with forgetting me in recovery area, switching off the lights and disappearing while I was there waiting to recover and get dressed and many, many other situations that I don’t want to think of. They left no notes on my file about my 2 chemical pregnancy’s with them so I am not surprised if you will have nothing written there about your embryos that they discarded. My advice is to not cry over the spilled milk, don’t look for answers as you will not have them, you will only lose your time and you will be filled with negative energy. Find a good private clinic. I noticed that simple cases are having a chance with NHS, more complicated ones never. I regret wasting my time with them, in 5 years we managed 2 cycles! Heck! Anyway I wish you all best whatever you decide to do. Good luck 🤞 ❤️🤗
Thank you thank you for ur open comment. Sounds like u have been throw it too. I also feel very much like this as I have had a bad experience with the nhs and taking on a case with them before ...they have an answer for everything. And I am very worried about like what u said... getting court up and getting no where and stressing my self out. I am now looking into where to go next and have no idea what to do....what clinic is best. There of course all saying they are!!!. All the beat and once again thank u x
Hi Sorry to hear your experience. If hospitals have power cuts they have back up generators so Im very surprised they said this knowing it could play on your mind.
I would do a bit more digging & see if you can access the stages of your embryos.
Without sticking up for the NHS embryos change within hours. Mine did & there was no power cut involved.
I hope you get some clear answers & good luck with your journey
So, the NHS has a legal obligation to manage the risks associated with their work. They should have a list of contingency plans in place to manage these risks. This is not your fault and they need to be accountable.
First of all schedule a meeting with your consultant, ask for a copy of the complaints process and request in a face to face meeting for them to begin the appeals process. Follow up with a email with the details. The consultant will have to initiate this process to the board.
You will also need to speak to PALS, who will support and advise you.
With it being there fault, they should initiate a new round of IVF and ensure you don't have to go through the stress of this type of ordeal.
Feel free to contact me directly, if you have any questions.
Also, please don't delay starting the appeal process. Trust me, its difficult to explain here.
Btw its awful you had to go through all of this. You have a right to feel the way you do.
I’m so sorry you had to go through this. I really think you should ask for a review with the intention of another round. If not complaints procedure. It must have been so disappointing for you, a ‘power cut’ is totally out of your hands and surely there should be backup for this sort of situation with all those previous embryos at risk. I really hope you get what you rightly are entitled to xxx
Im so sorry for your experience! I would complain! It sound like the power cut had a detrimental affect on your embryos or that's what it sounds like from your description. I think they should be offering you a free cycle....they may try to wangle out of it by saying that your embryos may not have made it anyway but they don't know that for sure......I definitely think its worth a shot.xx
Well right now you have nothing to lose if they have formally told you that your cycle has been used! I really hope they can see things from your point of view.xx
Good luck, write everything down in advance so you don't forget what you are saying and really press on the fact that this decision is life changing!!xx
Also with technology like embryoscope nowadays - just shows how important a stable environment is for your embryos. I am surprised they don’t have backup generators that kick in straight away. Anyways, they need to clarify what they have said to you and what happened.
I am sorry you had that experience and I wish you good luck with this! Hopefully it will be sorted.
This all sounds heartbreaking and very stressful. I know on my paperwork from my private clinic it’s states they are not liable for a powercut and I remember having to sign it. But that aside, I would strongly question the approach of “they weren’t going to make it anyway”. I thought that’s what professional embryologists were supposed to make a call on and action accordingly. Is there any particular reason why they couldn’t have picked your best 1/2embryos on day 3/4/5 and done a fresh transfer if they weren’t all going to last till day 5 in their opinion? I also somewhat agree with Ranchu90 that sometimes it’s best to move on for your own mental health. We had a bad result with our NHS go and I’m glad I didn’t waste anymore time as my private cycles have given me massively improved results, so I obviously wasn’t getting my best “ivf potential” with the half hearted NHS approach I was given. I’m so thankful for it as it was a big learning curve and I could have got lucky, but it just didn’t give me any results. I would definitely write to the appropriate people though as I don’t think their answers are fair. Wish you the best of luck with it xxx
I am certain I've read that a failed transfer is not a full NHS cycle. I know it, and I'm sure it's in this website 'theduff'. I just can't find it just now Good luck to you as that is incredibly unfair. So sorry you had to hear that, you done everything right. Its them that's not right. Xx
During my first round the incubator broke while my 4 embryos were in, but I wasn't told this happened. I just found out one year later, when I asked for a copy of my medical records to send them to a private clinic.
I have to say, during the first cycle 3 embryos got up to blastocyst stage, but they were poor graded: two were transferred but didn't take, the other one was left to grow a bit more but wasn't good enough (for them) to freeze. I do think the broken incubator affected my embryos, but when I found out I was too heartbroken (I was recovering from an ectopic from my second IVF attempt with the NHS) to have the strength and fight for a compensation.
I do think you may be entitled to an additional free round on the NHS. Sorry I can't recommend anyone to talk to! Good luck with everything!
I would ask what their procedures are for a power cut. They can't just blame it on that. I work in a fertility unit and for the cryopreservation room they have all kinds of monitoring and warnings to alert of a problem. If there was a power cut they would have a back up, think of the millions of embryos they would loose if it was like out freezers at home. Your well within your rights to speak with the PALS department if your not happy. I would want an explanation too....Good luck
What do they mean there was a power cut so they didn't make it. How long was the power cut for? If they say it was power cut, then they must know that power would affect treatment. Even in rural Africa they would have plans for that type of power cut. Request that you need notes that the embryologist took and apply to be given another chance. Power cut doesn't happen that long in the UK.
If you can afford it, pick a good private clinic and crack on with them. I don't know old you are but time is rarely on our side.. Even if you got a free extra round, I have no faith in this shambolic hospital. The NHS as a concept is a wonderful thing but 11 yrs of tory austerity and now covid have gutted it, except for a few world famous teaching hospitals. My 70yo diabetic and disabled dad recently had to sit for 24hrs in an a&e waiting room metal chair. That said, definitely complain and see it through. I'd also leave a few public reviews on Google etc if you get rubbish answers. If anything, it may affect their rating and avoid others going to them for ivf and wasting incredibly precious time! Remember, the NHS is not free. A high rate tax payer pays 45% tax on income as well as national insurance for being able to use it. If the service is on a par with a third world country (power cuts? SERIOUSLY?!) then tell me beforehand so I can make an informed choice. I'd pay even 50, 60% tax for a world class social net service like in the nordic states but here we're paying for it AS WELL AS dying in endless waiting list. Fck that!
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