Still no contact?: Hello Anyone still... - Fertility Network UK

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Still no contact?

Cdwen profile image
24 Replies

Hello

Anyone still out there with a FET cancelled midway in March who has still not been called or even given an estimate of when they can cycle again? I am so angry with the lack of consideration from my clinic. They don't even update their website! I wish I could say it was because of COVID, but this is how they have been the whole time. I want to make a complaint, but I am wondering what good it will do at an NHS hospital? It feels like we don't matter.

C xxxx

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Cdwen profile image
Cdwen
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24 Replies
Ladypii profile image
Ladypii

Sorry your clinic hasn’t corresponded with you at all. It must be so frustrating for you right now especially as yours was cancelled midway through.

Every hospital should have a PALS (Patient and Liaison Service) this is the avenue you can initially complain through. They are supposed to come back to you with information within a certain time period. Appreciate that department might be a little understaffed at the moment but it should definitely trigger some sort of response as the complaint it will have to be fed back to the fertility clinic at the NHS hospital. PALS aim is to deal with complaints before they become official claims against the hospital and so I think complaining via them first even if it’s just to say look I know the hospital is busy re COVID etc but it’s been 11 weeks and you have every right to be kept informed of your treatment so someone needs to update you ASAP.

Hope that helps.

Xx

Cdwen profile image
Cdwen in reply to Ladypii

Yes! Thank you for that clear-headed advice. I am feeling all over the place right now. I can handle more waiting. After three years I am fucking master at waiting for the NHS but I feel disrespected honestly by the lack of care they shown for keeping us informed and up to date. I just want to know an estimate of when I could receive treatment. At the moment, all I have is 'some people have been prioritised, we are working through the list, wait to be called'. xxx

Ladypii profile image
Ladypii in reply to Cdwen

I’m really sorry about that, I’m going into my third year TTC and it’s actually the waiting and the unknown that really kills me. If someone said you will definitely have a baby on this date, even if it was 2 years from now I could probably accept it, but having no idea if or when it will happen is awful.

I used to work in-house in the clinical negligence department at the nhs so I would get most referrals from the PALS team if they could no longer resolve an issue. I would definitely say in your letter/email to them that it’s taken you x amount of time to get to this point and as your treatment was cancelled half way through u are a priority and HFEA have provided clear guidance to get clinics back up and running weeks ago so they should be informing all patients ASAP of plans to recommence treatment.

Best of luck my love and really hope it’s not much longer xxx

Cdwen profile image
Cdwen in reply to Ladypii

Thank you so much for that wording. I have sent an email to PALS now and hope they will be able to push the clinic to be better. Best of luck to you too! xxx

AP86 profile image
AP86 in reply to Cdwen

Hey, that's what I've been told as well and I've had no call or update of when I'll be called. Are you with Bart's?x

Cdwen profile image
Cdwen in reply to AP86

Hey. I am not! I hope you get some answers too. xx

Cdwen profile image
Cdwen

Got a response, if you can call it that. They have no idea when I will be seen. ‘Likely’ by Autumn but they can’t be sure because although I had my treatment cancelled I am at the back of the waitlist 😭

Vivi85 profile image
Vivi85 in reply to Cdwen

Oh my days! I'm having a wobble today. My clinic are open to calls but still NO IDEA when treatment can resume. They share theatres with main NHS hospital and have not been given any access. There is going to be a huge backlog of surgery incl cancer, orthopaedics etc. I totally understand the triage rationale but still it's hard to deal with. IVF does seem to be low priority 😞. F-off COVID19!!! We gotta try get on with life in the meantime. Xxx

Ivf2020A profile image
Ivf2020A in reply to Vivi85

Mines attached fo nhs hospital too and they literally have no clue and tell me conflicting info or say they have no idea , its not fair we are being treated this way its vile !

Mara84 profile image
Mara84 in reply to Cdwen

what on earth! this is so unfair....I'm so sorry, Probably it will be the same for me too 😭

Core profile image
Core

Is yours on HFEA list? Mine has just been put on but still not heard anything 🙁 xx

Vivi85 profile image
Vivi85 in reply to Core

My clinic has been on HFEA list for two weeks. I've been able to speak to them but today they officially announced FET only. While they have no access to theatres they are exploring alternative options for fresh cycles. It is within their interests to reopen - NHS orPrivate still need to generate income.

Core profile image
Core in reply to Vivi85

I’m going to ring mine next week and hopefully will get an update xx

Cdwen profile image
Cdwen in reply to Core

Mine is on the HFEA list. xx

Luna_79 profile image
Luna_79

Hi there I got in touch with mine 3 weeks ago was told she couldn’t find my notes! 🙈 then said she was sure I was on a waiting list (due to my age)! Then that a dr should have called me re the protocol - nope they hadn’t, then why hadn’t I asked for a nurses consultation? Because at my consult with the professor he said to wait until you opened then call to make an app - you’ve only just opened! To that I was told I’ll check and if I don’t ring you back you’ll be on the waiting list! I stupidly said oh ok!!! 🙈 my hubby then said well that was daft now if we don’t hear we’re assuming we are but we might not be!!! Anyway this week I hadn’t heard anything still so called! Couldn’t find my notes but then said she would go and look to which she found them sat on a pile on someone’s desk! Saying I would have got a call eventually!! I’m 40 and awaiting a frozen transfer so had thought I’d be fairly quick but feel of I hadn’t chased up I’d still be waiting - I jos have an app via video link on Thursday so I’d defo call and see if I were you Xxx

Cdwen profile image
Cdwen in reply to Luna_79

What a nightmare! I really hope you get some relief soon. xx

Bing84 profile image
Bing84

Thanks for sharing. I could have written this post too. Very frustrating as I am also paying privately. I agree with what everyone else says - it’s the uncertainty of not having a timeline which is the hardest - ivf supposed to give us control but now it’s not! It doesn’t help when everyone else seems to falling pregnant around us. This has been the toughest time during our journey. I just hope our patience will pay off!

My counsellor used the analogy of a delayed flight and we’re stuck in the lounge waiting but we will take off. Try to enjoy this downtime if we can and take our minds off it (easier said than done mind you) hang in there for all of us who are struggling xx

Cdwen profile image
Cdwen in reply to Bing84

That is a good analogy and I am sorry you doing through all of this.

xx

kt777 profile image
kt777

I could have also written this post. I was due to start my FET on my April cycle. However it got moved to May due to Covid. At first they said I’ll be seen pretty soon after they re-open however now they are saying I should expect a phone call in September to discuss when my treatment will be.

It’s very hard but we have finally made the decision to move our embryos even if there is a wait elsewhere the lack of care and 16 month wait for my fresh transfer has given me the push I need.

LeeCee15 profile image
LeeCee15

Mine was canceled part way through in March too and I’ve not heard anything either... 😔 Xx

Green-elephants profile image
Green-elephants

It's very frustrating!! I'd just like a estimate date as just feel I'm checking phone all the time for a call!! Just a rough idea would be great!! Feeling in limbo land xxx hope you hear soon xxx

Ivf2020A profile image
Ivf2020A in reply to Green-elephants

I know what you mean , i keep looking at mone ☹️ Surely the clinics need to have some duty of care towards us to let us know what is going on x

Samb87 profile image
Samb87

We’re the same. Was a week away before transfer when lockdown happened and not heard anything since then x

Cdwen profile image
Cdwen

Thank you all you lovely ladies for reminding me I am not alone in this. xxxx

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