# no IUI at IVFwales until january!



## joeyrella (May 13, 2009)

today i rang the clinic to book a scan so i could start my second cycle of IUI, only to be told that 'due to shortages of staff available to do scanning' they have decided not to do any more IUIs until january.  i am feeling a mixture of anger and complete disbelief at the moment, at every step of this journey the clinic have been messing us around and this is the icing on the cake now.  i am to ring in january and 'see if they can fit me in then', but obviously with three months' worth of people also ringing for appointments, i'm sceptical about being able to get treated then.  what is the point in having a waiting list, if when you get to the top of it, they don't have enough staff to treat you and you end up waiting months longer anyway?  i am genuinely shocked at the standard of 'care' the clinic offer.  i sometimes wonder when i read the rest of your posts, generally with good reviews of the service you have received, if i am actually being treated at the same clinic!

our health board fund three IUI cycles.  does anyone know if you have to take these cycles at ivfwales (i live in cardiff) or can you take the funding and use it at a different clinic?  i am completely at the end of my tether with ivfwales, they seem to have absolutely no concept of the time and stress sensitive nature of fertility treatment.  being naturally quite sceptical, i do wonder if they are trying to force people into going private so as to reduce their waiting lists.

any thoughts welcomed, especially if anyone knows about taking nhs funding elsewhere.

thanks

very angry jo


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## kara76 (Dec 14, 2004)

oh dear i am so sorry you feel this way. 

ok you can transfer your funding i think to london womens clinic in swansea yet im not sure how you would do this, maybe you would need to speak with someone there and find out.

it is such a shame such a good clinic has staff storages but this is often the case when it comes to the nhs as im sure you are aware. 

do you know who you spoke with today? i think being told that you have to wait til january wouldnt be such a problem if you could get booked in now as then at least you know have something to aim for.


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## joeyrella (May 13, 2009)

i'm not sure who i spoke to this morning, i left a message and was called back so i'm not sure who it was.  having only spoken to them 4 weeks ago (when i got a bfn) and been told to ring back with my next period to start my next round it was somewhat of a shock this morning to be casually told 'we've agreed not to do any more until january now'.  
i know the nhs doesn't have a magic wand and endless funding, but i thought that was the whole point of a waiting list.  i feel like we've done our part - waited 12 months for our first IUI and now we are having to wait a further 3 months for our second.  by that time we should be at the top of the waiting list for IVF (assuming what they told us about that is true.....?) so maybe its not even worth pursuing any more IUI.
i think maybe i will contact the health board themselves and ask about transferring the funding to LWC.  i live right by the LWC in cardiff, but not sure at the idea of having to travel to swansea for the actual treatment.  
i am just so disappointed with the clinic, we had such high hopes  
thanks for responding
x


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## Mrs Thomas (Jan 19, 2009)

Ho Jo, I am a lurker on the Boards as my treatment is on hold at the mo. I use LWC as a private patient and the good news is they now do IUI at Cardiff (since about a year ago) so no need to travel to Swansea.

Hope this helps you in your decision,

Mrs T
x


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## kara76 (Dec 14, 2004)

im not 100% sure if cardiff lwc do nhs funding you would need to check

please dont take this the wrong wait but jan is a short wait and most people have to wait between cycle, some clinics even say 3months. i think the waiting list is for the first cycle and yeah you have done your bit which is hard enough i know, also bear in mind christmas is coming and that means things within the clinic will slow down as they do close, which isnt ideal at all but thats life. i will always be a supporter of ivf wales and i had all my treatment there yet i have felt disappointed when i couldnt be fitted in or have to wait ages for an appointment or an op, waiting is all part of this im sad to say.

this journey is full of highs and low, granted more lows and the waiting can be really hard. would it be worth you calling back and asking if they will book you in for january? 

i think the waiting list for ivf currently is around 14months.


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## joeyrella (May 13, 2009)

i've got pcos and irregular cycles so i can't say when i will be having a period in january, i have to wait until AF arrives before ringing for an appointment.

i know three months extra doesn't sound long, but it feels like it to us. i'm more annoyed that they leave people in the dark. i don't understand why they have to leave it until _i_ rang _them_ all mentally prepared to start treatment to tell me about the wait. i had already had the squirmy conversation asking for flexibilty this month with my boss, i feel a bit foolish now. its an interesting point about the waiting list being for the first treatment, i never thought of it like that. i just assumed once you were at the top of the waiting list and in the system that was it. it seems a bit deceptive to then add additional months on in between.

as for our place on the ivf waiting list, that was another disaster we are not sure has been sorted or not.


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## PixTrix (Aug 20, 2008)

I am sorry that you are going through this. Sadly I think you will find that this can be an issue at many clinics when it comes to NHS. A friend who attends a clinic in England was told that they were not doing any FET through the whole summer because they were closed for refurbishment. She rang three months in a row on first day of her period to be told ring back the following month. We are actually in a lucky position that the clinic is still open while being refurbished upstairs. There is only so much that you can do about it and whilst I understand your anger and disappointment, I suppose another way to look at it is at least they are not putting treatment at risk due to a lack of resourses.


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## kara76 (Dec 14, 2004)

damn thats a pain. im sure come january they will fit you in, you could always call back and ask to speak with debbie and explain your worries

it is such a shame we have funding issues and waiting list, its not so much they add months inbetween but its a case of waiting your turn as they are so busy, its the same even with private ivf hun. saying that it sad that the short staffing is effecting your treatment


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## marieclare (May 10, 2008)

Hi Joeyrella I'm sorry you are so upset I know how hard the waiting is especially when you are all psyched up to go  
I just wanted to second what Kara said, me and dh are private patients at ivfw - had to self fund due to dh having kids, and my experience is unfortunately we have to wait too as they are just always so busy, I don' think it makes any difference if its nhs or private there are only so many procedures they can do at a time, I know it totally sucks but thats just the way it seems to be. 

Also what you said about feeling like being at a different clinic, sorry if this sounds a silly question but i've not done IUI so not sure quite whats involved, have you had much interaction with the nurses during the first cycle? Just asking becuase i think some of the reason a lot of posters are so positive about the clinic (well this is my opinion anyway) is the nurses and drs are fabulous everystep of the way even when you are at your lowest, I think it compensates for times when there are delays or admin problems like you are experiencing now that are outside of the medical staff control. I was quite ill on stimms in the summer and one thing that sticks in my mind is debbie was concerned about me so gave my husband her personal mobile number to call her if i got worse over the weekend, you really couldnt ask for more lovely, genuinely caring people when you are vunerable. 

sorry hun I didn't mean to write a massive post, I just wanted you to know we know how you feel and how hard it is, and hope you can get a resolution you are happy with. 
best wishes
marie xxxxxxxxx


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## claire1 (Nov 14, 2004)

Hi

I agree with the others.  However we did have some problems with IVF Wales at the start.  We received our letter to say that they received our referral, and that they would contact us when we got to the top of the waiting list.  Then 14 months later I rang them to see what was happening, and they didn't have any record of us, they had lost our referral as they stated  .  They did sort it out in the end, just luckily I'm based in my GP's practice so was easy for me to get copies of the paperwork.  And Janet Evans was really good when we did get around to meting her.

Sorry I am gonna sound a little harsh, it is the NHS and they do fall short at times with staff etc, you do need to have a little patience with them.  And like Marrie said the grass isn't allways greener on the other side of health care.

Sorry if I've offend I really didn't mean to, and I can appreciate what your going through.  Take care and I hope that you don't have to wait too long for your treatment.


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## joeyrella (May 13, 2009)

thanks for all your responses ladies.
hubby spoke to them again today and i'm still not very happy with things.  apparently they are down from 5 staff to 2 so can't have as many appointments.  interestingly though, it doesn't sound like they have cancelled any privately funded treatment.  he asked what the likelihood of getting an appointment in january is and was told its more likely to be february or march.  potentially an extra six months    

i know i sound like a bit of a diva, but i've really been shocked at how bad our treatment has been.  we've had various small grumbles - lost appointments, cancelled appointments, appointments made for a bank holiday etc........but my main two issues are the mix up with our place on the waiting list and are the way we were told about hubby's low sperm count (a battered photocopy of a standard letter which said there was a problem with your sample this could be because a) low sperm count, b) infection c) lack of abstinence etc etc but no attempt to tell us which one it was - we were devastated).  having read all their literature on the internet i have been geniunely surprised at how different the reality is from the picture that is painted.

can i ask the private funded ladies whether you have ever been treated at a different clinic, or looked into other clinics, and whether your experiences at other clinics were any better or worse?

thanks


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## Mrs Thomas (Jan 19, 2009)

Hi Jo,

Sorry to hear you are having such a tough time, I will PM you later.

x


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## Vixxx (May 3, 2009)

Hi Jo

Sorry you're having a rough time of it.  TX is stressful enough without any added strain.  I am privately funded IVF and went for my follow up appointment in August hoping to start again soon, but was told that the earliest I could start again would be January as there is such demand on limited resources.  I have also had TX elsewhere (Guy's) and my experience is that the clinical side of things at IVF seems comparable although the admin side is definitely less organised.  And I did find that an added stress.  However, I did decide to stick to IVF Wales rather than going elsewhere (considered LWC and BCRM) this time round.

Good luck whatever you decide!

Vixxx


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## ANDI68 (Aug 17, 2007)

Joeyrella,

Did you find out if you could transfer your treatment elsewhere?


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## kara76 (Dec 14, 2004)

i havent been treated at all other clinic so i cant help you with that.

it is such a shame you have had such trouble and in all honestly if you feel so strongly about it i think you should transfer elsewhere 

being told via letter is harsh but would you have been willing to wait for an appointment to be told? letter is very often quicker. i was told via letter.

its sad fact that they are short staffed and this of course if gona effect patients yet i think its better to cancelled treatments than to get sub standard and rush treatment, 6months is a long break and your right you might not get such a long wait in your were self funding yet this is often the case with NHS care, you have to wait, wait for appointment, wait for treatment etc etc but thank godness you do have funding.

im sure spooks will help you with information about swapping your funding

i am sorry your experience at ivf wales hasnt been a great one and i am sure we have all felt hard done by at some point.

good luck whatever you decide


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## Guest (Nov 16, 2009)

Helo.
I'm new to this message board and website so forgive me if I'm stepping on anyone's toes by asking some things that are very much related to the conversation in this topic.

My partner and I were referred for fertility treatment with the NHS and we were informed by the consultant that we can get NHS treatment for 3 cycles of DIUI due to changes with Health Commission Wales during the last month. We've been informed that a referral is being made for us at IVFWales (though we live in Swansea). Naturally we were elated but then having looked at the IVF Wales Site and this topic, we were diappointed to read about the problems with staffing @IVFWales. I was hoping someone could possibly provide some ingsight into:

(1) how long the waiting list usually is from referral to first treatment for nhs patients and is this any different for privately funded patients?

(2) is it possible for us to request that the treatment referral be transferred to LWC Swansea?


We're very excited to start...and even though we're in the prep stage with blood tests and stuff, "Time" is already something that tests patience, but it sounds like its part of the terrain.

many thanks.


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## kara76 (Dec 14, 2004)

the best thing to do regarding waiting times is to call IVF Wales direct. 

i am sure it would be possible to transfer to swansea if that is what you wanted

self funding treatment well there would be no waiting list as this is what you pay for. i wouldnt get put off by this thread though as you need to make up your own mind, i am sure if you look there is probably a simliar thread about LWC!

good luck


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## Guest (Nov 16, 2009)

thanxs Kara... I'll defo have a good think about it all and work out the best route. Like you say, other clinics have their fair share of issues. Personally I was pleased with the referral to IVFWales cos a friend of mine had rated them due to the friendly and professional manner.  The only off putting thing is the staff shortages; though I'm presuming these issues will be resolved sooner rather than later.

anyways thanks for replying, all the best, Suku x


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## kara76 (Dec 14, 2004)

i think these issue will have to be resolved

they are really friendly there i haveto say


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## joeyrella (May 13, 2009)

hi suku
in our case we waited about six months from referal for our initial appointment at the clinic.  we then had to wait another six months to have our first IUI.  we had already been treated by a gynae at llandough so we'd already had all the usual fertility tests and x-rays and six months of clomid, not sure if this sped our IUI treatment up or not.  as you've seen we are now looking at waiting up to another six months for our second IUI.
we're still unsure what to do about it, thinking through our options


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## kara76 (Dec 14, 2004)

jo i hope you find a way forward for you....

see you tomorrow


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## kara76 (Dec 14, 2004)

have you seen this

http://www.ivfwales.co.uk/news.asp

/links


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## Queenie1 (Aug 21, 2008)

does anyone know who the 2 new doctors are.

good luck ladies with your decsion.

i have nothing but good reports of the clinic.


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## kara76 (Dec 14, 2004)

no idea who the 2 docs are but arrianna should be due back from maternity in the new year and she is fab


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## josiejo (Mar 26, 2008)

I met one of them at ET but can't remember his name though. He seemed friendly enough but didn't really speak to us as I think he was just observing everything.


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## btbam (Feb 19, 2009)

Joeyrella,  I know exactly how you feel, I had the same experience today when I phoned up to book my IUI - as this would be our last funded treatment I was particularly fragile and didn't cope well when told I'd have to wait till January.

Now - I work in the NHS and I would rather they delay my treatment than continue if there are staff shortages that make it unsafe.... BUT .. the way in which ladies are being told this news, is in my humble opinion, atrocious.  I was told, bluntly, by one of the nurses on the phone that I could not go ahead.  I don't blame her, she is relatively new and should not have been put in that position.  I have written already to JE, the head of midwifery and the complaints department suggesting that in such circumstances some effort should be made to forewarn patients, not wait until we phone on CD1, having already re-arranged our lives.  Interestingly - the announcement on the website has appeared since then!!!

I agree with the other ladies on here - the staff at IVF wales are lovely and I have no doubt that they are doing the best they can in difficult situation.  The reality in the NHS at the moment is that when staff leave, it can be very difficult to replace them - even if the funding is there.  I did however think they would manage communication better and hope they take up some more of my suggestions so that few others are in left in the horrible situation Jo and I were in when we phoned.  I also agree with some of the other comments that the admin sometimes isn's so slick - We too were 'forgotten' on waiting lists until I phoned to enquire, several times.  Then again, thats life in the NHS - I don't mind when my patients phone up to check, so hope that IVF wales don't either.

(... a very upset btbam , also called Jo.... but I don't think it's just Jo's this affects: lol)


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## kara76 (Dec 14, 2004)

jo i am sorry hun and i hope the time you have to wait goes quick. it is very disappointing when you have arrange things around your treatment


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## btbam (Feb 19, 2009)

Thanks Kara,
I've just emailed you about tomorrow - at the moment I'm bursting into tears everytime I think about IUI / IVF so don't think me coming alone would be such a great idea!!! Saying that I do think you deserve all the support possible, so if I pull myself together a bit tomorrow, what's the latest I could let you know that I'm coming?


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## kara76 (Dec 14, 2004)

i am leaving home at 2pm so by then would be great

i hope you feel a little stronger soon hun and you are very right i need as much suport tomorrow as possible and you never know it might well help you to meet people who are going through infertility


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## btbam (Feb 19, 2009)

Ok - promise to email you by 2pm xx


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## joeyrella (May 13, 2009)

hi btbam
its rubbish isn't it?  i'm still feeling a bit bewildered and not sure what to do for the best.  i was mentally prepared to go ahead with the IUI, i'd already told my boss and my family and friends, so it was a complete shock to be told sorry come back and we might squeeze you in in january.  i was in work when i got the call back too so i couldn't even ask any questions, just gave yes/no answers.  they seemed genuinely surprised when hubby rang back later, not very happy and asked a million questions, they told him i'd been 'alright' about it.


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## ANDI68 (Aug 17, 2007)

Joe,

Did you enquire about being able to transfer your tx to another clinic?


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