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Click

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Tuesday, October 14th 2014, 6:57pm

Removed from waiting list without being told!

Hi

I'm just looking for some advice and feedback about where we stand right now as I found out today that we have been removed from the waiting list.

Basic history is this:
  • We started trying to conceive back in December 2009 although we hadn't been too careful before that. After a year of nothing happening we went to the doctor for tests.
  • They kept on cocking up my Day 21 bloods and not doing all the tests. Due to me changing jobs and moving house we were unable to reschedule these for a few months taking us to October 2011 before we got the actual results. Everything normal.
  • We were referred to Inverclyde where I had a laparoscopy and they discovered endometriosis and scarring on both tubes meaning everything is blocked up. The only option is IVF. This was in 2012 and to this day I've still not had any real treatment for the endo despite heavy and incredibly painful periods because no one wants to interfere with me having IVF, despite the two year wait.
  • We went to Glasgow Royal Infirmary for our first appointment and neither me nor my husband liked it. No one knew where the department was we were being sent to. There lots of little things that bugged us. We were unable to get both of our appointments on the same day and as we live on an island this meant two five hour journeys each time which could easily have been done on the same day. That coupled with the two year wait meant we didn't get a very good vibe from the place.
  • We decided to get a loan and have a go privately while we were waiting. This was summer last year and unfortunately the cycle had to be cancelled due to me getting hyperstimulation and becoming very poorly.
  • During this period we got a letter offering us treatment in Edinburgh with the threat we would be removed from the list if we did not reply within 14 days of the date on the letter. The letter was not sent for a week after the letter was dated and was received right before a bank holiday weekend. When I sent the reply back saying we lived on an island and would be unable to travel to Edinburgh for appointments we got no response. I called the hospital and was rudely told they didn't send letters to confirm you were still on the list but that I would be if I'd replied. I was upset and did not pursue it further.
  • At some point we also got notification that the rules were changing and despite waiting two years for three shots we would now only be getting two, which annoyed me but I know there's nothing I can do about that.
  • We then got a letter in December telling us our first appointment was scheduled for the very beginning of January this year. When we went for our first appointment we told them that living on an island makes transport difficult during the winter months owing to bad weather disrupting the ferries. The earliest we could start treatment would be April. We got in contact and they rearranged this but never sent out any confirmation. Each time we've had to contact them we've felt like we're being dismissed and they just want to get you off the line, they always say they can't send out letters or they're too busy to do things.
  • Then life happened. We had personal stuff and work stuff and April turned into a very bad time to enter into any kind of big life changing medical procedures. Two years is a long time to wait and a lot of things can happen in that time. We got in contact and said we would be unable to make these appointments but at no stage did we ask to be taken off the list, nor did they tell us that not going would make us lose a slot on there.
  • Now things have calmed down a lot. Work has settled down. Personal stuff has settled down. We're in a position that next year we will be able to actually start again. We would've loved to start now but we're in that same sticky situation with ferries and bad weather and I don't want to have to cancel an appointment on a day which is time sensitive (like egg retrieval).
  • My husband phoned up today and was told we're not on the list. I was at work so couldn't do it myself and he's pretty upset about it so I've not got the full story yet, but that's it. After waiting two years we have to reapply which I'm guessing means another two years of waiting all the while the endo is getting worse, we're both getting older and once again, two years is a long time to wait when there are real world things going on within your family and things.

I realise this is really long and I've tried to be as concise as possible. I know I'm relying on waiting list and it's not up to me to dictate when it's convenient for them but we made ourselves clear when we've been in contact with them and at the first meeting they seemed to understand the problem with the ferries and the fact we're on an island.

After all the stuff I've dealt with this year I was starting to feel positive that I would be able to go through with things next year and now this just makes me feel really miserable.

Should they at least have told us if they were removing us from the list? Do you know who we can talk to about this to get more information? Has this happened to anyone else?

Thanks in advance.

:(

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Tuesday, October 14th 2014, 7:52pm

Hi click

I didn't want to read and run, what a horrible position your in, I would keep phoning them and demand to get some answers, were u refereed through your own gp? Maybe they could try and help?
Are you able to go private again?

Where are you from i live in Greenock

Take care I hope you get some answers

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Tuesday, October 14th 2014, 8:30pm

Hi

This all sounds awful, I really sympathise.

Can I suggest you find out the complaints or appeal procedure and go down that route. You should be able to be put back onto the list if your complaint is upheld. I imagine they will decide based on your reasons for turning down the appointments in April. If your reasons for that were given over the phone rather than in writing you could put them in writing and maybe also embellish your reasons a bit for the sympathy vote!

Good luck.

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Click

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Tuesday, October 14th 2014, 8:34pm

Hi Sasha,

Thanks for replying. I'm just across the water from you on Bute. Any treatment is basically out between October and March because the ferries are really unreliable with the high winds, getting cancelled or diverted to Gourock. Next year they're also repairing Wemyss Bay pier which means five months of hour long sailings to Gourock but we didn't want to let that stop us.

I'm definitely going to try phoning them again for more information. I really want someone that I can just talk to about the concerns about the way they treat people. I've been reading comments online about them and it seems like not getting information and poor communication seems pretty standard, even during treatment! It doesn't help to shake off the bad vibe my husband and I got during the last visit there and which has carried on through all our contact with them.

Unfortunately the GP who dealt with us all through the infertility stuff has left now and not all of the GPs are that helpful. Plus they've changed our practice so you can't always specify which doctor you see. There is one who had fertility treatment with his wife so we're going to try and see him because hopefully he'll be more sympathetic.

I managed to finish paying off the loan earlier in the year and the bank are desperate to give me another one. I LOVED the Nuffield and they were so wonderful to me I would love to go back there. I planned to be an egg donor which helped with funding it but I'm not sure if I'd be able to do it again because of the cancelled cycle. I was willing to be a donor at GRI as well because I hate the thought of women having to wait so long to have children, I understand that pain and I think even a failed cycle for me would feel easier if some good could come of it for someone else, but I'm hesitant to ask them about it because I'm not sure I trust them.

My husband is going to try and get an appointment at the GP as soon as possible to talk to them and I'm going to try and find someone I could write to or speak to or try and get some sort of response from about why we've been removed from the list without being told.

I could honestly understand it if they'd sent us a letter to say you have to start treatment by X date or you're removed or if they said you'll be moved down the list or something. I understand that there's a list and if other people are ready then they should go first but I just can't understand how they can take you off with no warning. I mean, surely if it was someone waiting for a hip replacement or a knee replacement or some surgery or appointment with a consultant they wouldn't take them off if they weren't able to start treatment when they said go.

Sorry for rambling. I think I'm in shock, it's really upset me.

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Tuesday, October 14th 2014, 8:36pm

Thanks RB, that's what I'm going to try and do and I'm hoping that we can get an appointment with the GP soon to see what he says as well.

I can't find anyone else this has happened to by searching online and I don't know whether that's a good thing because it's not something they do very often, or a bad thing because we've been singled out for some reason.

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Tuesday, October 14th 2014, 9:05pm

I went to the Nuffield as well, I thought they were really great

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Tuesday, October 14th 2014, 9:41pm

Hi click, I am being treated at the royal just now their communication is rubbish when u r actually in tho the nurses are great.
I haven't been in your situation but are you able to arrange to speak to some1 in the clinic about what has happened and see if they can get u back on the list without having to go through your gp?
They did have to shut down their clinic and were working out if the nuffield for a while and they have now reopened properly in the royal it's a nice new unit and as I say when u r in they r really good but I've also had loads of problems getting hold of them on the phone which is really frustrating
I hope u manage to get it sorted out u should not have to wait the whole waiting time again
xx
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Click

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Wednesday, October 15th 2014, 5:59pm

Thanks everyone.

Well we've got a GP appointment next week so we're holding off calling the hospital again until we've spoken to the doctor. Don't want to ruffle any feathers.

All I can find online is that you'll be notified if you're taken off the list but we definitely haven't had any written communication from them since December last year, and even then the letter didn't include half the stuff it was supposed to.

I'm wondering if they sent us another letter about transferring to a different hospital which we never received because when they sent that out last year it said if you didn't reply you'd be removed from the list.

Ugh. So much stress!

Click

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Tuesday, October 21st 2014, 6:03pm

So going to the doctor was the biggest waste of time!

We went in and I explained everything, going right back to when we started five years ago. He said he wasn't expecting all that and said that we'd have to write a letter to the hospital ourselves to tell them everything and why we want ONE round of IVF, I don't know why we're suddenly supposed to beg for one round when we should have had two and when we started we were being offered three!

If that doesn't work we'll have to go back to the start. I told him that it doesn't really fill me with confidence about how the place operates if this is how we're treated before we've even started.

I honestly nearly cried a few times and I really struggled to hold it together. It doesn't help that I'm suffering from pain today so I decided to ask about that as well. He's prescribed something similar to the ones that I had before that made me really emotional and I had to stop because I was scared about how they were affecting me, and ibuprofen which I've had before and doesn't touch the pain.

He then had the gall to tell me that at least I had age on my side, to which I replied, 'well I won't in two years time if we have to get back on the list' and my husband pointed out that at nearly 44 he's not getting any younger either.

At one point I got the impression the doctor was actually trying to talk us out of having the IVF. He was saying, it's very taxing and difficult. We know. We did it before, remember! Ugh! I told him that actually it made me feel better because it meant I was able to contribute after two or three years of being completely helpless. I just don't think he gets it.

So now I've got to try and write a letter to explain why I should go back on a list that no one ever told me I was being taken off of in the first place. To be honest, I've completely lost faith in the NHS. Aside from vaccinations and a poorly muscle when I was younger I've never really had to get treatment for anything and the one time I've actually required medical intervention for something, I'm totally let down. :(

If we had the money right now I would be back at the Nuffield in a heartbeat but we'd need to save up a bit before I'd be happy getting another loan and I don't hold out much hope for them putting us back on the list, so roll on 2016/17 when I might actually get my NHS treatment. <_<

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Tuesday, October 21st 2014, 7:58pm

Hope you don't mind me posting, if you go to GG&C website and look up the the lead nurse or clinical services manager for female and child services at GRI, then go to PALS or complaints procedure they are all on there. They are required to reply to your complaint within a set time. Don't be palmed off and don't be wishy washy about it. Sometimes you need to complain. If you have dates of correspondence this will help. A wee visit yo your MSP wouldn't do any harm either. Hope this helps and good luck.

They are very busy and buisniess like but it's no excuse. My GP was useless too, you would think they were paying for it, ours never referred us initially, forgot!!!! and that was one GP supposedly helping another!!!! Bloody useless
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Click

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Tuesday, October 21st 2014, 8:55pm

Thanks for the reply, optimistic2, and for the suggestion of where to write to. The GP today didn't even tell me where to write to or what we should include. I've posted on PatientOpinion about our experience last year so I've copied that off of there as well as the notes on here and some other sites so I can put it all together to get all the facts in order.

It really upsets me that I have to complain about this. I really don't feel like I can expect to have a positive experience at this hospital after all this. I feel like going private is my only option and it sucks. You'd expect a little bit of compassion when people are dealing with sensitive issues like this. I'm the least confrontational person in the world and so having to make a fuss about something like a hospital goes against everything I was brought up to do and believe.

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Tuesday, November 25th 2014, 6:53pm

Thought I'd just share a quick update since I got a reply to my letter yesterday, almost a month to the day from when I sent mine in.

According to the date on the letter it was dictated on the 7th, typed on the 18th and posted sometime in the last few days.

The doctor at the hospital says she's sorry this has been distressing for me and that my letter is being passed to the Service Manager of Gynaecology & Obstetrics as well as NHS Complaints.

I was hoping we'd get this sorted before the end of the year but I'm guessing this gives them another 28 days to deal with it so maybe we'll hear something by January. I just want a resolution and to be back on the list because right now time is ticking and I'm not actually on it!

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Tuesday, December 16th 2014, 6:17pm

Thought I'd stop by with an update. Got home from a cinema trip with my husband for his birthday to find a letter from the GRI about an appointment with a consultant.

I'm not sure what that means exactly but I'm hoping it's a good sign.

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Tuesday, December 16th 2014, 7:01pm

Great news click hopefully things can get moving for you now
Xx
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Tuesday, December 16th 2014, 10:00pm

Hi click, I've only just seen this thread. I'm sorry to hear how stressful it's been for you. I just wanted to say even though we weren't removed from any list for treatment, we have had the number of funded rounds changed so many times. Like you it started out as three NHS rounds and we were told we could do a private round whilst we were waiting. Then it went down to two funded. We ended up having 2 private ICSI rounds and now because of this we are only allowed 1 funded as the guidelines have changed. It totally sucks and I'm so cross that they keep moving the goal posts. Unfortunately our 1 funded didn't work so we are saving up to do a private round again. I'm stating to look at all the clinics as not overly happy with who we've just used. Good luck with everything x
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Click

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Thursday, December 18th 2014, 7:26pm

Thanks everyone.

Like I said, I'm not sure if this means we're back on the list or what, but I'm interested to see what this means. I have a funny feeling that we'll probably only be offered one round on NHS now.

Where were your private cycles smihel? We did ours at the Nuffield, but had to cancel it before retrieval because of the overstimulation.

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Thursday, December 18th 2014, 8:54pm

Hi Click,
Just wanted to say I'm sorry you've had such a negative experience. It's all stressful enough as it is.
I can't fault the treatment I had at GRI and thought the nurses were great, but it was always really difficult to contact them by phone and that was so annoying.
Hope you get some answers at your appointment.
x
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Click

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Friday, December 19th 2014, 7:36pm

Had another, longer, letter today addressing some of the points raised in our letter. Apparently when we called in April the person interpreted it as us wanting to be removed from the list and that's why we were taken off the list. It also says that in future people being removed from the list will receive a letter about it.

It also says I need to call to confirm the appointment I was given in my letter that I got the other day and that it's an appointment with the consultant to discuss thr management of my case.

Any ideas what that means? It doesn't sound like we're back on the list. I'm guessing it's going to mean being put back at the end of the list and waiting another two years for treatment.

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Friday, December 19th 2014, 8:05pm

Hi click, I think they will put u at the top of the list, they rnt going to let u meet the consultant then say see u in 2 years
xx
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1st IVF Nov 2013 - mmc (blighted ovum)
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Click

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Tuesday, December 23rd 2014, 5:56pm

I asked when I called to vongi the appointment and the woman on the phone told me it was 'just a clinic appointment' and seemed in a hurry to get me off the phone so I didn't press it.

Still don't know exactly what that means.

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Tuesday, December 23rd 2014, 6:10pm

They r quite rubbish on the phone click to b honest u tend to just get the girl on the desk and she prob won't know much about it. I often struggle to get through to some1 but it is nothing like that when u r there the nurses and all the other staff r great in person
When is ur appointment again? I think they will give u the 2 rounds that people r getting now
xx
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1st IVF Nov 2013 - mmc (blighted ovum)
2nd IVF ICSI sept 2014 - freeze all
Dec2014 FET :BFP: :BFP: it's twins xxx

Click

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Sunday, May 10th 2015, 6:10pm

Thought I should post an update here just in case this happens to anyone else.

We got an appointment to see the doctor, were able to explain the whole situation in full again and got put back on the list.

Back in March we went for our first lot of tests and everything, with instructions to call when I got my May period, which came yesterday but no one answered the phone when I called. I know that this initial appointment isn't as time sensitive as the next one is, but it's made me feel a bit anxious.

Luckily my husband is going to chase things up tomorrow and hopefully get an appointment for us. Then it'll be off to Glasgow to pick up my Metformin and get this show on the road at last!

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Sunday, May 10th 2015, 6:18pm

Hi click what hospital did you decide on again?

All I can say is my hospital don't have a receptionist on the weekend, any time something has fallen on the weekend they have told me just to phone on the Monday so try not to worry about it.

Good luck with everything

Xx
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Sunday, May 10th 2015, 8:51pm

Hi Click, the weekend at GRI tend to be really busy because they don't have a receptionist and they work with less staff. I remember that from my treatment. If you phone tomorrow you should get through to receptionist but if it goes on to answer machine leave a message and a nurse should call you back. Really hope you get to start soon x
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

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