# Problems with RFC and Waiting Lists



## Cate1976 (Oct 29, 2007)

Put them all here, anything to do with RFC, waiting lists or any other complaints about infertility treatment here in Northern Ireland.


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## bron11 (Jul 16, 2008)

Place on list can go down - not consistent in moving up list.  This practice was supposed to have stopped.

False misleading information regarding length of waiting lists /time scale for treatment.

Very poor administration.

Potential of being kicked of treatment if turning 40, due to delays in treatment.

Not offering Assisted Hatching, or level one tests for immune issues.

Feeling of being on a conveyor belt, little human bedside manners from consultants.

Not seeing consultant you paid for.

Location of clinic itself.


Positive nurses brillant.

Sorry I sound like a moan.


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## emak (Jan 21, 2008)

Well said Bron ,i think that you have pretty much said it all .
My main problem at the moment with the RFC is the waiting lists ,as i havent had any tx yet i cant comment on the actual treatment side of things,but the way im moving on the lists i think that their approx wait of 4-7 months is actually looking more like 10-12 months. Now i do realise that mosts of the boards have MUCH longer waiting times than the one i belong to (western) and tbh i was expecting to be told it would be much longer.........I only wish that they could have been more accurate with their approx waits ,so people could try and plan their lifes around it OR even just to have some sort of clue when u might be starting instead of moving up and down waiting lists.Soooooooooooooo frustrating . Well thats my moan over(for now)  
Emma


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## lia.g (Aug 3, 2008)

Consultants not reading files before they see you - 

I had my review today and the consultant thought we'd had an BFN when infact ET had been postponed due to OHSS!  Hadn't a clue how many eggs we'd got or how many fertilised


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## weefluff (Aug 11, 2008)

Hi the royal can't do anything for me or dh have to go to America but they have been very supportive in helping with various investigations


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## shem (Nov 2, 2006)

They need to seriously sort out the lack of communication between the consultant and the waiting list team. The timescale given by the consultant is never right it's always shorter than the actual waiting time and the admin people tell everybody the same thing "We apologise for the consultant telling you it would be a shorter wait". You'd think with all the complaining they have recieved it would be sorted by now.


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## Tearful (Nov 19, 2007)

Hellooooo Ladies  

I registered with this site back in November last year and to be honest i check it out every now and again but haven't posted. Guess i've tried to put things to the back of my head since the whole process has been taking soooooo long!

I had my very 1st initial consultant app back in Jan 2007.   Since then we've only had 2 0r 3 app to sign paperwork bla bla bla. Have finally recieved letter of confirmation that we are officially on the waiting list (after an admin blunder!) although not really sure when we were put on list. (Guessing from last year some time) . 

Bron hit the nail right on the head with all her points. Especially the location of the unit, in the flamin maternity part of building! Where we get to watch all the other pregnant couples wander about whilst most of us are in misery!

Admin at hospital is a joke. I had to email my consultant to chase them up on just sending a confirmation letter.
Also hate the fact that its only a ghost who works at reception re waiting lists, as the ghost hasn't worked out yet how to answer a ringing phone!

Have currently no incline of how long waiting list is for Northern Board NHS go! Does anyone?  

We'll all have the patience of saints by the time we finish with the whole nightmare! 

xx lots of love and best wishes to all!!!!!!


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## lia.g (Aug 3, 2008)

Hi Tearful

Sorry to hear you're having such a difficult time  

Unfortunately I haven't a clue how long the waiting lists are at present.  We've been on the NHS waiting list since Dec 07 but ended up going private for our current tx.

We're also the Northern Board and I believe its has of the shorter waiting lists.  Why don't you join the NI thread - I'm sure some of the others will be able to tell you better and you'll get lots of support there with whatever lies ahead.

Lia xo


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## weeza82 (Dec 14, 2007)

I have told you this before, but it was ages ago, so I will refresh your memories. I was at the last INUK support meeting in Craigavon and I would like to relay some of the points made at the meeting.....

RFC has a new manager (Karen someone, I can't for the life of me remember her surname). The INUK rep had at the point had some telephone conversations with Karne and seemed quietly hopeful about her. Karen is hoping to visit all the support groups in the near future to discuss, face to face, with RFC patients any concerns. She already recognises many of the points raised in this thread.


Admin: she is currently evaluating the % of phonecalls to RFC ie. how many are regarding waiting list and how many are appts etc. It has been put forward by Karen that an email system may be brought online for waiting list queries, ie. you send an email with all the relevant details and you should expect a response within 24 hours. This would free up the phone system considerably. 
Waiting list: again, she is evaluating the waiting list system and times etc. It's possible a documenet explaining the waiting list system will be provided, which would hopefully go a long way to explaining why people move up and down the lists.
Location: everyone agrees, it is not ideal by any stretch of the imagination. Karen is putting together a dossier with which to approach the Trust Directors propsing a move due to lack of space.

I think it's very positive that the new manager seems so forward thinking and it's a great start that she recognises so many of the problems already. But please remember, all her proposals will take time. The issue of location is a huge bone of contention to us all, but to the Royal Group of Hospitals, the RFC is just a small unit out of X amount in the group. Also, take into consideration, where would RFC go to within the grounds of the RVH? Space is of a premium there as it is and tbh I don't think moving RFC would be a huge priority at the minute.

Ultimately, the hand that guides the waiting times is the level of funding available for assisted conception in Northern Ireland. Ther is nothing that ANYONE at RFC can do about that. It is a matter which would be better raised at Stormont. I know some MLAs have already expressed an interest in this issue. Maybe it would be more progressive and beneficial to approach MLAs again?

The concerns about assisted hatching, blastocysts etc are all very viable issues, but ultimately, they are a medical concern and I don;t think the manager would be able to address that. Also, those techniques would require more funding and it seems to be thin enough on the ground as it is. Perhaps approaching an MLA would be the forward for this issue....

I think the best approach would be to go to one of the support group meetings (Stork in Belfast, Omagh, Craigavon and Derry of ot was running again) and hear for yourselves what the manager has to say. Bring your concerns to her yourself. However, don't expect immediate changes. These things take time. FOr the foreseeable future we WILL have to grit our teeth as we pass through the doors of the maternity unit, we WILL have to bear with the admin system as they try to find us on the system and we WILL have to accept the waiting lists as they are for now, no matter how much stress and anxiety it causes us. [/list]


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## holly01 (Feb 10, 2007)

well said wezza....
i had an email from Fiona from inuk re the rfc a few days back re all those issues,had a big email ready to send full of complaints then lost it so i took it as a sign not to bother gettin stressed about it!!
  rfc!!


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## Cate1976 (Oct 29, 2007)

Definitely waiting lists, being told back in February that Western Board fund 7 cycles a month, I thought I'd have got my letter in July and be downregging from last week.  Starting to feel sensitive again after being really strong for a few months apart from one 'wobble' mid June.

Luckily, so far I've been feeling strong whenever I've been to RFC but agree that location does need to be looked at.  I know that if I'd had an apppintment at RFC between end October and end January that I'd have found it very tough.  Serious case of bad design, I'd have thought common sense would have dictated that having to go through same entrance for both maternity and infertility wasn't good.


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## jooles (Aug 3, 2008)

oh i hate it when the consultant scans you, reels out a lot of numbers and other blurb then goes leaving you lying there with legs akimbo not knowing what is going on and if its good or bad. the last time i was there i was told tx is being abandoned and dont do anything!!! that was it!! i had to phone later and get more info from nurses  im always afraid to ask them for more info as they always seem so busy!!

phoning in for test results is very frustrating as phone seems to be constantly engaged 

on the plus side i find the nurses helpful


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## glitter girl (Jun 24, 2007)

I have to admit that I went through an awful time with RFC. While waiting for my consultation I decided to phone up to check how long I could expect to wait on the letter, it was as well I did phone that day as my appointment was actually for that week, the girl in admin insisted that I would have received notification of this 6 weeks prior, i know for a fact that I did not recieve this letter, thankfully I did not miss the appointment.

Also, being told two different waiting times for treatment, Dr mc Manus told me i would have to wait no longer than a year, however when I phoned admin I was told she had got it wrong and the wait would be 18+ months. 

I know mistakes can be made, but to me this seems to be happening all too often in RFC.


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## KITTY1231 (Sep 5, 2008)

hi everyone
just found this web site by chance its good to talk to people from the same area as my self on the list for ivf at the royal and was told in april and july that it will take 4- to 7 months before we will be seen what i do noe is phone up every six weeks to see where we are on the list to make sure we are moving in the right direction


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## lia.g (Aug 3, 2008)

Hi Kitty, welcome to FF  

Why don't you come across and join us on the NI Girls thread.  You'll get lots of support on your IVF journey from everyone there.

Lia xo


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## zemer (Dec 18, 2006)

.
Hi girls i dont post in here but i read your post from time to time but i had to writte down the anger that I have towards RFC

When i was rolling in hospital floor miscarring in Royal a female DR was sitting in the bed and telling me that everything will be ok and i shouldnt be so sad that her sister after numbers OF Ivf fell pregnant on a drunken weekend in Barcelona without reading my chart to seee that i dont have tubes.

I thought my husband is going to punch her.

Next i went in for a Laparoscopy wich i was supposed to be in for half a day came home 4 hours later i had a temperature of 40 C back to hospital on the intravenous antibiotics for a week and no food or drink a very bad infection,second time i went in to get my tubes removed for a day surgery they did something to my bladder couldnt go to toilet back in hospital for 3 days with catheter first embryo transfer she couldnt get in my cervic she said is going just to pinch me a bit to open it i she just cut me open with scissor no pain relive at all.The worst pain I ever had.

A bit suprised to myself that i never ever complained about any of my expirience there...

*I was given injections for 10 days send home didnt go back for a scan untill a day before Ec no blood test at all no wonder i had 2 mild OHSS without no supervision at all and i was a number going in and out the nurses and Dr where cold as ice no sympathy or understanding at all*
Never seen the consultant on ET or Ec even tho he was really helpfull on few occassion on the phone.

I always produced loads off eggs and always had 7-10 embryos even tho they where grade 2 good amount of cells WHY Rfc doesnt freeze them when they can be frozen cost cutting exersise on my expense....if they asked the money to pay for it I would had give them.

*WOULD I GO BACK? NEVER IN A MILLION YEARS EVEN iF IS FOR FREEEEEEEEEE*......


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## Cate1976 (Oct 29, 2007)

Zemer: So sorry to read that you've had such awful experiences at RFC. Hope you get matched with a baby girl soon.

Admin/waiting list aren't answering phone. I need to know if my letter has been sent out, cos if has and got lost in post, Royal Mail had better be ready for big complaint.


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## Cate1976 (Oct 29, 2007)

I'm now no3 on list but 1-3 months before I get letetr of offer. reason for not moving up ist as quick as I should is 'staffing issues in the labs'. Hoping to get letter end of September to start tx on October cycle. EC/ET close to Christmas won't cause problems as they're only shut Christmas Day and Boxing Day.


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## Babyrocks (Nov 16, 2008)

Hi All
Among the many inadequate aspects of  our fertility services in Northern Ireland is  this RFC policy of  running a tandem private and public waiting list for fertility treatment.  We pay as tax payers for services in The Belfast Trust including the RFC facility. These services should be used to provide public health for the population of Northern ireland .Not to generate personal  income  for a few people working in the private sector. The blame does not lie with the healthcare professionals employed by the Trust who operate the private practice . It lies with the department of Health who for years have underesourced important and vital fertility services within the province, leading to our lower than average pregnancy rates and longer than acceptable waiting times. I have been waiting a year and a half now. When I'm seen it will be OVER 2 YEARS since my GP referred me. 
There is also a post code lottery for the waiting list depending on which health board you come from. Northern Board is the longest waiting list at anbout 18 months!!!! Western is shortest.

I think it's important that we raise this with our politians. I have written to my MLAs Wallace Brown, Arlene Long, Dawn Purvis and Peter Robinson!!! From my experience of the Health service in NI: "the squeekiest hinge gets the most oil" . I urge everyone who is dissatisfied with our long waiting lists and lack for fertility service development to contact their local MLA. Health is devolved to our local government so we can do something about how our money is spent on health provision. Apologies for the rant!!!!


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## Lin111 (Jul 26, 2008)

Hi there
Had my review appointment with RFC few weeks ago. Did all the paperwork.  Told by Dr that Southern board waiting list 16-17 months for IVF.  She said that Southern area is longest wait but there has been a recent injection of cash which is allowing them get six new embryologists.... she thinks that they will try to reduce longest waiting list first ie Southern Board.  Personally I think anything over a year is too far off and I will resort to Origin.


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