# Campaign for change in N. Ireland!



## shazd (May 13, 2005)

If you are interested in sending a letter to your local MLA about the lack of NHS IVF treatments here in N. Ireland then please contact me and I will send you a standard letter via email. The H&SCB in N. Ireland are currently reviewing the NICE Guidance on infertility(2013) which recommends up to three treatment cycles for couples trying to conceive. Scotland, England and Wales have largely got 2 NHS IVF or ICSI treatment cycles. N. Ireland offer 1 NHS IVF or ICSI treatment cycle only!! We need to campaign for change!!. Do something now!!
[email protected]


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## duckybun (Feb 14, 2012)

To be honest Sharon I'd rather campaign for a better level of care on the one cycle we do get before asking for more. Just my personal opinion but my cycle last year with the rfc was a total waste of time and if I'd had two more funded cycles I would have taken them without realising how poor the standard is here. Now I've been with a different clinic and experienced a different clinical environment and approach the difference is incredible, and I'm glad I didn't waste more years of my life and marriage on the rfc.


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## Katie789 (Dec 12, 2010)

Completely agree with you ducky. At my review in rfc after failed cycle the doc asked me if I wanted to go onto the private list with them and I said I wouldn't have treatment there again nevermind pay for it. She said she didnt blame me!! What does that say about it!!!!!


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## Little orchid (Feb 23, 2014)

Hi Katie and Ducky,

Hope you don't mind me jumping in here. I am at the start of my ivf journey and I know there are no guarantees of anything, but also keen to avoid "setting myself up for disappointment". I am getting the feeling if I go with the NHS in N.Ireland that I am more likely to have a "bad deal". I know everyone's perspectives are based on their own experiences, and likewise there will be people who were successful through the NHS. It is very hard as a "new-comer" to make informed choices, so I would welcome any advice. Like most people, money is an issue but at the same time I am willing to make any sacrifices to make my dream a reality. If you don't want to repond publically- feel free to pm me,

Many thanks.


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## Katie789 (Dec 12, 2010)

Little Orchid,

My experience with the rfc was a few years ago now therefore it may well have changed (im hoping so). My history is as follows:

ttc for two years. GP did SA which found only 2million sperm. Day 2/3 and day 21 bloods were taken from me and found to be ok. Referred to Ulster hospital as per procedure (UHD had to make ref to RFC). Without conducting ANY tests we were told it was a sperm issue and referred for icsi at RFC. Told waiting list 1 year min so decided to go to origin in the meantime. Again was told it is obviously a sperm issue and completed a number of cycles. All BFN. At that time it was the same consultants working in both RFC and origin. Not sure if still the case. Went to RFC for NHS cycle. Again told will not do anything different, it is a numbers game and you are just unlucky.  rfc would not take into account my previous response to meds etc or what origin had learnt about me from cycles. Said 'this is how we do it here' and that was it. Worst response of them all. Again BFN.

Having been around the block and back again i know there are many people RFC works for. Lots of people have success and it really is a case of just having the egg and sperm meet or the embryo put back and it works. RFC are definately ok at the straight forward cases. However it turns out that i was a pretty straight forward case also and just needed to add a blood thinner to my cycle for it to be successful. Our professionals here never thought of testing me but after reading my history a clinic overseas told me to go to have my womb etc checked out and then go my gp for a blood clotting test as this may have been impeding implantation. I was then advised to take 75mg aspirin and hey presto. success.

I think you are right to be as prepared as you can be as you only get one shot with the NHS. Make sure you question everything as they assumed the problem was my husband when actually we both had an issue. Get as many tests as you can even if you feel disappointed that it adds more time onto your wait. It is better to be two months behind than be breaking your heart over an unnecessary bfn. But you are also right to be aware that sometimes it just doesnt work - you wont question yourself half as much if you have done everything you can though.

Good luck.


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## Little orchid (Feb 23, 2014)

Thanks, really appreciate your reply Katie. So glad it has worked out for, although I am sure so frustrating that professionals let you down along the way. I will def do my homework before I make any decisions.


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## Jillyhen (Dec 17, 2009)

Hi girls

I totally agree with Ducky.

Northern Ireland is behind the times with regard to ivf and its issues. I def didnt have a great experience with the rfc. I did end up getting pregnant twice with origin but sadly miscarried. They need to be more up to speed with issues regarding implantation etc.

Jillyhen


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## duckybun (Feb 14, 2012)

Hi ladies,

 hi jillyhen x

***Warning***** major rant below!!!

Little orchids, I hate putting a downer on things especially as I'm sure there are people reading this who are currently cycling with the rfc and origin and also with the grcm satellite clinic. They obviously do get some people pg, but on the whole the stats for all the services available here are woeful compared to the better clinics across the water. I agree with Katie, that if you are a simple case, ie blocked tubes and no other factors, then maybe you would get pg, might take more than one go but there's no guarantees anywhere. However if you have immunes issues, you probably don't have a mission here..... When I went for my review app at the rfc last year after a failed cycle the consultant basically told me issues treatments were voodoo and a waste of time..... Well I'd believe the proof is in the pudding, I went to the argc and was treated for months for immunes before I started my cycle with them and am still having ongoing immunes treatment throughout my pregnancy and here I am at 10 weeks happily and healthily pregnant with twins..... With the rfc I was traumatised by poor care, under stimulation, crap fertilisation, crap quality of the one embryo we did get and I bled days before otd.

Also, I always knew there was something up with my periods, on my initial consultation at the rfc when I asked about having a lap to look for endo I was told there was no point as whether I had it or not I would still need Ivf so it made no difference to my treatment path..... Right so the fact that I was crucified with pain for days every month and was chronically anaemic doesn't matter then? As a patient they basically told me they didn't care about my quality of life, what sort of care is that I fought tooth and nail for a lap and eventually got one, when I came round after the surgery I was told I had one of the worst cases of stage four deep and infiltrating endo the surgeon had seen and she hadn't removed any of it as she didn't have time to start so we ended up going private to have it surgically treated. Now how could that not have been a factor in my infertility? Rfc couldn't have given a flying f**k. 

Origin are just as bad, infact their stats on the hfea website are worse for 2011! 

I have no experience of grcm but my vi feeling is that since its the same consultants that work in both origin and rfc I can't see how their approach would differ any.

I am very lucky that dh and I were able to afford to go to London for our cycle with the argc, it has financially wiped us out but we decided after last year that its not just a out money once your free Nhs go is gone, its about emotional energy, time, years potentially of declining fertility being wasted on crap clinics, years of our marriage and happiness etc. so we went for it and I'm so glad we did. 

My advice to anyone in Northern Ireland is ok, we have one free to, use it, but brace yourself for not getting any answers and being treated like crap (and no I'm not exaggerating) then get out of dodge. Take the info from your first cycle to a decent clinic (who will probably laugh at your protocol... Mine did!) and they will improve on every aspect of your treatment, just don't waste your life going back to clinics here who don't care.

That's my two penny's worth, sorry if I've offended anyone, I wish anyone having treatment here nothing but the best of luck, it does work for some, I just wish it worked for more

Xx
Ducky


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## Little orchid (Feb 23, 2014)

Thanks for everyone's honesty. Sad to hear you have had negative experiences with services in n.ireland. I work closely with allied health professions (different field from fertility), and unfortunately I am all too aware of the challenges of providing 'best practice' despite the 'good will' of individuals. 

As you say some people have positive experiences in n.ireland, and fingers crossed this will be the case for many more couples. Your responses are not really what I 'want' to hear, as you put so much trust in the professions. And although I have to remain positive, I also do not want to enter this unknown world totally naive. I will try and not let my emotions run away with me (pretty impossible!) and make choices based on evidence/facts. Sometimes the difficulty, is not just getting the straight answers from professions but knowing what the questions are! 

Little orchid


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## Twinangelsmummy83 (Nov 9, 2011)

I just want to say thatgcrm Belfast may have the same consultants as rfc and origin but the protocol s are all from Glasgow and it's still mainly run from Glasgow. I have just been there and forms them excellent. I'm still in my 2ww but they were really good and very much like the Glasgow clinic where I have been too. Just don't want anyone running them down without hearing from someone who has actually been there.


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## Little orchid (Feb 23, 2014)

Thanks twinangelsmummy- great to hear you have had a positive experience here. Best of luck, xx


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## tup77 (Mar 2, 2012)

Just wanted to add a bit of balance to this, whilst totally understanding others may have had different experiences.  I had 3 cycles at the RFC.  The first resulted in an early miscarriage and the second was going swimmingly until they discovered no fluid round the baby at 16 weeks and my baby boy was induced and born asleep at 23 weeks.  The third one resulted in my beautiful son who was born in December 2013 - although not without mishap as my waters broke at 27 weeks and he was born at 30 weeks then spent 7 weeks in the Neonatal Unit.  Throughout my treatment at the RFC I found the doctors to be great - particularly after the loss of my son at 23 weeks when we were having to wait for a postmortem (which told us nothing) before we could go again. Prof McClure was great and even rang and spoke to the pathologist for us so that we could progress with treatment. I would say the admin has always been pretty poor and the waiting times are also too long (a year to start our first cycle and nearly the same between our first and second).  I would admit though that I don't know what would have happened if our reasons for infertility were complicated, as ours were quite straightforward. 

The fact you have to wait so long and only get one free cycle are definite inequalities with the rest of the UK - I know a friend of a friend in Nottingham who basically picked up the phone when she was ready to start her second cycle and was told to come in a couple of weeks later to start. 

Best wishes to all on your journeys


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## loopylulu888 (Jul 6, 2013)

I think you're right to question the standard of infertility treatments in n.Ireland. Im orgionally from n.I but moved to Scotland for uni,  then when ttc #1 ran into problems. I had all tests conducted relatively quickly on both his and my sides and was seen within 8 months for icsi at ninewells Dundee. Staff were amazing, really clued up. I got a bfp on my first attempt. Got really bad morning sickness/ hyperemisis and had to return to n.I for my mum to look after me. Ended up in hospital and none of the consultants would listen to me when I told them we had had icsi. They kept saying,  ' r u sure its not Clomid Or hormones u took'.  probably due to my age,  22 .  Hear its very difficult to get ivf in n.I young which is a shame because its more likely to work the  younger you are. I also had 2 free attempts should the first have failed. Its the 21st century, we should all be treated equally, just a shame the government r treating infertility the same as the postcode lottery.


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