# GLASGOW ROYAL INFIRMARY IN THE NEWS



## helenglasgow

I wonder if anyone could offer me any advice about a situation I have found myself in regarding IVF treatment.

In August this year I attended Glasgow Royal Infirmary with my partner for IVF treatment which we paid for.

We both attended the Royal for egg retrieval and sperm sample around Wednesday 15/16th August - I haven't got the exact date.
At the time my partner handed in his sample and then returned to me complaining about the level of noise in the room he was given. He said the nurse apologised when she took him into the room, saying she was sorry about the noise but there was building work going on and it was coming from the generator. My partner was anxious enough at getting things 'right' that day so it was distressing but we put it aside and carried on with what we had to do. 

A few days later - Saturday 18th August - I attended the Royal for the egg transfer procedure. In the theatre there is a hatch leading onto the area where the eggs are kept and where the technicians are. I heard a female say to the doctor in the room with me that they were 'having some problems with the incubators'. It was a bit worrying but I put it to the back of my mind because why wouldn't I? I was nervous enough and these were professionals anyway, who would tell me if something was wrong.

Our IVF treatment was unsuccessful and we tried to move on. We had only had enough money for one IVF treatment and therefore had to abandon our journey believing that we were given the best possible shot at it. I then saw an article in the papere that there had been problems at Glasgow Royal Infirmary due to building works and that couples who received treatment from 1st of September would receive another free round of IVF. I tried to contact the Royal to see if I could speak to anyone about what exactly the circumstances were but it has been an ongoing struggle to get anyone to talk to me properly. First I telephoned the woman who dealt with the financial side of IVF for us. I left a message on her machine and when she telephoned back she was quite abrupt and certainly not showing the kind of compassion for couples in this situation that I would expect. First of all she said she didn't know anything about the situation but when I suggested that my cycle of IVF could have been affected by the building work she simply said - "for goodness sake, there had been building work going on here for two years.". This led my onto asking why we hadn't been told this before handing over thousands of pounds. Even if you take the poor IVF results out of the equation, I believe that couples paying for IVF deserve the surroundings for their treatment to be as damn near perfect as they can be and for my partner it quite obviously wasn't. So in fact there are two arguments here now - was my IVF affected by the building work and why weren't we told about the building work that was in such close proximity to the Assisted Conception Service?

This woman then said she would make an appointment for us to speak to a consultant and made an appointment for the following Thursday at 6pm. My partner re-arranged his work schedule for that time. The day before the appointment she left a voice message asking if we could change it to 5pm and I returned the call saying that we couldn't change. The next day another message said that the consultant wasn't in and the appointment would need to be at 12 o'clock on January 4th. I was angry that despite phoning from December 1oth I still had not had anyone from the Royal speaking to me about the circumstances surrounding the articles in the press. Surely i can't be the only one concerned about this? Surely the people who had treatment just before the dates given in the paper had been in touch with them too? Yet I feel my case was handled so badly with no communication whatsoever that they didn't seem at all bothered. I explained that I was angry about this and she replied like I was making a fuss over nothing and was lucky to get an appointment so soon.  She replied I could put my complaints in writing to them. I said I would write to the chief executive but she wasn't happy about that as she'd meant write to the Assisted Conception Service - but why would I write to them if they had already treated me with such disregard? I have phoned several times since that last phone call to check that I still have an appointment on the 4th January but no-one had confirmed it and I feel at a loss. I will keep phoning and in fact turn up on Friday 4th to see if we can speak to someone. If we don't have the appointment it is because she cancelled it herself when I said I would write in.

I believe from reading newspaper articles that they have offered free treatment to patients who had treatment from 1st September because there were no pregnancies and no fertilisation of the eggs. I would like to ask if the building work perhaps affected the development of those eggs which had fertilised in the couple of weeks preceeding 1st September. I remember before I had the egg transfer that the doctor was explaining something about the eggs being at a certain level and these level were numbered 1.2 3. etc. I cannot remember exactly what she was saying however I do rememeber that my eggs had not progressed that far and saying 'oh that's not good' when she said what their level was. I had three eggs retrieved in total and they said one of the eggs wasn't viable - could the development of that egg been affected? I had two eggs implanted however because I had none for freezing, I only had one chance. Could that third egg in bettern conditions have performed better?  I have so many questions now that are not being answered. I really would like to know if they have looked at the levels of all the eggs from the cycles preceeding 1st September to see if they were affected. If there is any doubt whatsoever that they may have been then surely we should be compensated for that? It's such a lot of money for some couples and as I've already said, conditions should be as near perfect as they can possibly be and if that didn't happen then the hospital should be admitting it and not waiting for patients for fight. I feel so let-down that there had been no contact from them and disgusted at the way I've been spoken to during this very emotional time. 

However I have no scientific background to help me understand whether the development of the eggs could have been affected or not and wonder if anyone knows of someone who could help? Have you heard from anyone else who wants to know what happened during their treatment at the Royal - did the Royal contact them themselves? Do you think it is worth me pursing an appointment with them of should I just give up. A journalist from the Evening Times contacted me regarding telling my story but I don't want to go down that route yet. I know you can't tell me exactly what to do but I feel quite lost at the moment so any information would help.


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## crazyroychick

My husband and I had 2 rounds of ICSI at GRI, 1 in aug 2011 and 2nd feb 2012 and I just wonder how far back all this goes?

Our first attempt we had 7 eggs fertilise and do really well til day 3 but on the 2nd only 3 fertilised and only 1 was still going by day 2, we thought we were just unlucky but having had another cycle since at Nuffield Glasgow where all 5 fertilised, had 2 put back and 2 frozen and the lady I egg shared with also had excellent fertilisation and a BFP I am starting to think there is something far wrong at GRI.

We were totally disgusted by our treatment at GRI during both cycles too, vital information was not given to us most nurses were extremely rude and uncaring ( our first cycle ended in m/c and the nurse said to me "oh well never mind at least you know you can get pregnant"), you could never get booked for treatment as they were always full that month, no one ever called you when they were supposed to I had to chase them for 24 hrs for blood results confirming miscarriage.  Could go on forever, we complained but were fobbed off and was so upset by everything that we gave up as I had no fight left at that stage, I bitterly regret that now.

I would definitely complain and see what happens and take it from there, please don't let them fob you off as you will regret not getting answers.

You said you cannot afford more treatment but have you considered egg sharing? Nuffield really reasonably priced for this and treatment is first class, GCRM also offer this service but slightly dearer, best of luck whatever you decide and I really hope you get the answers you deserve soon xx


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## helenglasgow

Hi 

Thanks for your reply and sorry to hear about your treatment at GRI. I can't egg share as I'm too old and actually older than the Nuffield will accept. I'm worried that the GRI haven't really bothered with my complaints because of my age and will argue that it wouldn't have worked for me anyway. In which case I will argue that they shouldn't have taken my money. The irony is that I wanted to go to the Nuffield originally and the GRI are offering couples they say that have been affected by the building works treatment at the Nuffield! My experience at the Royal wasn't great either and in hindsight - great thing that - I would have gone to GCRM or even further affield. I just wish there was some legal or professional body who could investigate the effects of the building works there. I've written to **** about it all but I have a feeling that the big guys will get off  again and there will be no serious thought given to this.

I am supposed to have an appointment tomorrow with Dr Helen Lyall however despite me phoning and leaving answering machine messages, no-one is confirming this. I believe that because I said I would write to complain, that they have cancelled the appointment. I didn't shout, swear or was rude. I just put my point across after the woman said building works had been going on for two years and asked why we hadn't been told. I will post if they do give me an appointment and let you know what they say.


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## wehavethreecats

hi Helen
I heard about this story and was shocked and appalled for the couples affected.  I'm so sorry you've had such a poor experience. 

My gut instinct is to think that you may well be entitled to a replacement cycle, and that since your contact was with GRI, then the Nuffield ought to honour this on GRI's terms/conditions not their own as a private company.  

Further, I'd contact the Citizen's Advice Bureau for free legal support. They can also help write complain letters which will frame the legal situation. My dad used to vlunteer for them and this is the kind of injustice which he'd have sunk his teeth into with some ferocity!  

I certainly think it is worth pursuing independently, not least because the newspapers may not have got the dates right of when the zero fertilisation rate commenced (or indeed, if there was a sharp dip the month before, etc etc).  I'd also be copying my letter to ****.

Good luck.  This is the last thing you need right now, but hope the doctor shows up to the appointment and you get some sensible information out of them.

x


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## alexine

Play hardball!  There is no excuse for this kind of treatment when you are putting your family, emotional and physical health, and money on the line. Although I have not had treatment at the GRI I had  problems the the GCRM last year. Their care was appalling. 
I wish you every success and hope you get another free round!    

For what it's worth a lot of women who are fed up with assembly line treatment in the UK are going abroad to clinics like Serum in Athens and Reprofit in Czech, having success and are very pleased with the care and attention given to their individual cases....for a lot less expense overall.
This will be my next move of I decide to cycle again.
xxxA


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## helenglasgow

thanks for all the replies to this.

We had an appointment with the doctor who thought I was there for a follow-up visit and started to explain what the next step was for me - had no-one passed on that I had been phoning the Royal repeatedly since the 10th December and specifically told them it was about the IVF newspaper artitcle?!!!  Anyway I will try in medical speak to explain what was said. I must emphasise that I am not quoting the doctor word for word as I can't remember all of the medical terms. She didn't think we were affected because according to fertilisation/pregnancy statistics, my treatment did not come into the period when there was a sharp decline. However I did have my treatment not long before it and when I asked if there was any way that the development of the eggs, even though they had fertilised, could have been affected by building work. She said she didn't think so according to the data but how can anyone be certain - but thinking isn't good enough for me. She also said only IVF was affected not ICSI, which we had. However she then said that at the start of the building work two years ago, anit-vibration tables were put in place for the ICSI units - what , unbelievable!!!! I was shocked at this. I think she thought I would be reassured but I am shocked at the lack of transaprency of information for patients at starting treatment at this hospital. We should have been told about all of this - the building work, the noise, the anti-vibration tables which were obviously put in as a precautionary measusre but these measures are put in place for a reason - because there is a POSSIBILITY that the treatment could be affected. Who is to say that dust in the environment couldn't affect some of the eggs, even a small numer so that they don't notice a huge difference in pregnancy statistics?  The doctor said that the result could have been just the same if this hadn't happened. Of course I could still have had a negative result but what this has taken away from me is the CERTAINTY. After the treatment I thought we had done everything we could in an excellent environment for IVF and had a negative result so we accepted it. Now I think, could dust or vibration affect any of the eggs at all? Since no-one can be 100% certain of this, it is imperative that the hospital inform patients of this before they decide to have treatment there. I'm not sure how things work for NHS patients but as we paid for this treatment we had a choice of where to go. I had looked into hospitals in England and was prepared to go elsewhere. The only thing that made me choose the Royal was distance. I thought we were on an even playing field and that at the Royal conditions were as near perfect as they could be. If I had been told about the building work, anti-vibration tables etc of course, I would never have chosen to go there, had the treatment elsewhere and been satisfied that everything was done in perfect lab conditions that could be done, even if the result was negative. The Royal effectively took that decision away from me by withholding the truth. The Royal should have accepted that telling people would mean they would take their money elsewhere but that would just have to be the case until the building work was finished. We are going to write to the chief executive and of course if that is unsuccessful, take it further.  I will keep this site posted as to what happens.


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## alexine

They most certainly didn't give you your best shot at treatment.   If you don't get anywhere with your letter writing I would consider going to the media with your story. There is so much of this rubbish going on in UK clinics and they get away with it because they can. I often wonder if we really knew what went on half the time we would run for the hills from some of these clinics with our hearts, health and money.     
xxA


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## crazyroychick

I do not believe the truth will ever surface about this, I think it will be swept under the carpet as everything with the NHS always is.  Don't give up though you deserve answers and I really hope you get them, keep us posted, I sincerely wish we had kept going with our complaint they don't deserve to get away with it xx


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## Ellie.st

I am sorry that you have had such a bad experience and that GRI do not seem to be taking your concerns on board.  Building work while IVF tx is going on does not seem at all like a good idea, and they are obviously admitting to a "sharp decline" after 1st September.  However, I think it is also reasonable to ask about the figures during August, and about the details of the work which was being done then and about what steps had been taken to counter possible risks.  Apart from vibration and dust, was there painting or other use of chemicals going on, for example?  Professor Robert Winston has been quoted as saying that he believed that "chemicals in emulsion paint being used in a closed laboratory over 100 meters away from his clinic affected embryo growth at a vital stage of treatment". 

Don't give in -I think that it almost up to them to prove why you shouldn't have another tx cycle at their expense, especially as they did not tell you in advance that this work would be going on.  PS: I would copy your MP and MSPs into the correspondence.

Good luck

Ellie


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## helenglasgow

Hi Ellie

Thank you so much for your reply and advice. I'm interested in your situation since I'm over 40. How wonderful for you that things worked out so well. It's great to hear a story with a happy ending. Could I ask where you got your treatment and if you know your AMH level when you got pregnant the second time?

many thanks


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## Determinedx2

Hi Ladies, I too have a GRI story. I have just posted it somewhere else, but I think this link will take you to it. Not 100% sure as just joined for this subject alone. If you can't access it let me know and I will re write...

http://www.fertilityfriends.co.uk/forum/index.php?topic=298906.0


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## Ellie.st

Dear Helenglasgow

Have pm'd you.

Ellie


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## Jess81

hello, 
sorry to jump on this but i've had a quick read and really think you should be putting in a complinat!

anyway i looked it up and here is the link that tells you what to do.

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

xx


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## Determinedx2

Thanks, I have submitted a formal complaint to both NHS Glasgow and also the Scottish Government. I have had a reply that was sent recorded delivery to say that they have received my complaint and that they will investigate and be back in touch. Not holding my breath, but if anything comes of it I will write a post. It was a pretty stern complaint though so would be very surprised if its not taken seriously. 

PS good luck for the 7th


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## hmay27

Hi! People interested in this section might be interested in a post I've just put up in the media section of the forum, under Glasgow Royal Infirmary - IVF. 
Happy to hear from anyone. 
Best regards, 
Helen


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## hmay27

http://www.heraldscotland.com/news/health/fertility-rate-probe-shelved.20138106


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## helenglasgow

Hi everyone

I'm still awaiting a letter from the Royal and my MP regarding this situation about the building works affecting treatment. I will post their response as soon as I receive it.


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## Determinedx2

Hi all, Just to let you know I received my 3 page letter of response from the royal today. There were many apologies about the way we were treated and they went on and provided me with a lot of data on fertilisation rates. They did not answer any of my questions in full so tonight I have sent them letter number3. I have not asked for fertilisation rates - I want to know clinical pregnancy rates for July, aug , sep and Oct. Only when I get this data will I be satisfied that ICSI patients were not affected. I will keep this site posted with any further correspondence.


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## crazyroychick

We never got anywhere with our complaint just went round in circles until I had no more fight left and gave up, really hoe you get the answers you deserve xx


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