# PLEASE HELP Absolutley Fuming..



## Caro101 (Jan 23, 2012)

Hi Everyone

I really need to vent as i am feeling sooo angry but also looking for some advise as to what to do.

I was referred to my first infertility appointment and got an appointment 4 months later. I attended the first appointment and needed to have a lap and dye done. I had this done in February 2012. The day i was discharged i was told that a follow up appointment would be sent to me automatically to come back and discuss the outcome of the surgery. When the appointment didnt come in 2 weeks i rang the hospital and got told that i had been misinformed. I was supposed to have left with the appointment on the day i was discharged. Anyway i was given the earliest appointment available 27th April 2012. (wasnt happy but i counted down the days and waited)

I turned up to the appointment (having taken half a day off work that i dont get paid for and travelled 2 hours to get there) only to be told when i got there that the clinic had been cancelled as the Dr who was doing the clinic had gone into surgery.. I was livid and just wanted to cry. Anyway i got told someone would call me the following working with the appointment. Noone called me. For a whole week i rang roughly 3 times a day and each time got told someone was in the process of re-arranging the appointments and would call me. Noone called me back. Untill i called again yesterday and was told the appointment would be booked for me right away. first available appointment - 23 July 2012.. So basically i'd have to wait over 5 months to find out the outcome of my surgery and to find out whats the next step for us..Is this normal.. Am i insane to be feeling soo mad.?

I feel soo upset and feel like it is so unfair. Is there anything i can do about this ?


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## Ticky (Feb 21, 2012)

Hi hun

This isn't unusual at all when dealing with the NHS   from being referred to having my lap and dye then waiting for the results took me 18 months! Then i was told they could help me as it was 'unexplained' infertility and because my DH was named on a birth certificate (not his kid though) i too was fuming! I couldn't go private as it was financially impossible so i decided to egg share - have you considered this? The NHS are ridiculous hun and the biggest stress i found was waiting about xxx


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## Jelly.B (Sep 27, 2011)

Hi caro101, 
Massive hug to you!   I completely understand hw upset you use be. In my view simply outrages! I take it this was through NHS..... I haven't had much luck with NHS myself in the past so totally understand how you feel! 
I don't have much knowledge on what to do and how to go about it but I would def recommend you writing a complaint letter to the hospital about this. They need to know how poorly you been treated. I have written quite a few letters in the past   never really got me anywhere, but did get apologies in return. Not that it really helps, but in my view, hoped It helped a little for 'them' not making same mistakes in future to other ppl.
Xxxxx


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## Caro101 (Jan 23, 2012)

Thanks a lot Jellyburchnall and Ticky 

I hadnt really thought about egg sharing i was sort of waiting to find out the outcome of the lap and dye and whats wrong with me? Had it done because they suspected that i had pcos and blocked right tube i dont even know whats what. Perhaps i need to look into it and see whether i would qualify.
I will definatley write a complaint i just wish i could make someone change things..


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## clarabell1973 (May 18, 2011)

OMG it shows how times are changing..15 years ago i had my lap and dye and got the results 2 days later and went for my 1st ivf appointment withing 4 weeks of the lap n dye....

3 years ago i had an MRI for a spinal problem...for the same reason you have been given...eg ...doc in emergency surgery etc, i waited 22 months for the result of the MRI and another 5 month for a surgery date...the NHS are getting worse...Have you asked if there are any other consultants within that department....i found out i could have had my results from the MRI after 4 weeks had i thought of asking to see someone else xxx


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## goldbunny (Mar 26, 2012)

Caro101 said:


> Hi Everyone
> 
> I really need to vent as i am feeling sooo angry but also looking for some advise as to what to do.
> 
> ...


sounds a bit like my story only worse. i went to the doc last august and was told they'd refer me to a consultant, waited ages to see them, they said i should have a hsg, waited ages for hsg appt, then was kept waiting 63? (can't even remember now) days for follow up appt ( which i understood would be to discuss what investigations/treatment they would give me next.. weeks of sleepless nights and stress worrying about it, all over christmas, (despite having phoned in november to ask why i hadn't been given an appointment yet and being told i wasn't due to be seen til january) finally in january turned up for the appointment (dh coming with me, he took the afternoon off) waited ages to get in to see the consultant only to be told i was 'unexplained infertility' (so what's new?) and that there was absolutely nothing else they could do. I sat in shock and eventually we got the consultant to agree i could try and go privately and give us some idea of how to go about that (he was not really helpful). Went straight around to nearest private clinic almost in tears, certainly gabbling incoherently... got a private consultant appointment .. got them to agree we were suitable for ivf, started down-regging in march, now waiting to see if the embies have taken.. it's now may.. i'm getting old... why, why why didn't the gp i saw last august just tell me straight that the NHS wouldn't help me and send me to a private clinic? i could have been having a baby this summer....

honestly it's terrifying. i'm only not complaining because i can't deal with the stress and i really don't know how i would prove them to be in the wrong anyway. but it is a scandal. people's lives are at stake here.


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## Caro101 (Jan 23, 2012)

Thanks so much Clarabell you have just given me a brilliant idea. I will call them first thing Tuesday and ask if i can see someone else any other Dr. That may be the solution because i noted that when they were rebooking they kept mentioning the Consultants name that had done the procedure. 

Goldbunny that is so true i just feel like no one really cares and they barely realise that its people's lives they are messing with..I tried to explain to the last guy i spoke to that its terrible living with infertility but when you have that as well it's as though it'll tip you over the edge its awful. Sad thing is one of the guys told me that if i rang the Private Wing at the same hospital i could have an appointment booked with exactly the same Consultant but waaaaay sooner. How disgusting is that


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## Shell15 (Nov 11, 2011)

Hi Carol

Sorry to hear your story.  Have you tried ringing the consultants secretary to see if she can fit you in any sooner.  I am a medical secretary but in a GP practice and some of the consultant secretary's are very good and will try to fit you into an earlier clinic if they can.  They should have given you a much sooner appointment given they discharged you due to incorrect information you were given.  In the gp practice where I work we can  access our patients results for most tests from some of the hospitals within our area its  called the ICE system if you don't get anywhere with your appointment at the hospital you could always ask your GP surgery if they can do this and access your results while you wait for your appointment.  Its unfair that you could see the consultant straight away if you paid but you shouldn't have to.  

Hope you get your appointment sooner than July.

Michelle x


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## Kinab (Oct 28, 2009)

Get in contact with patient advice and liaison service (pals ). Each trust have this dept ( go through switch board), explain the mess up you have already gone through and they will try to take it further. They may be able to get an earlier appt, but if nothing else a formal complaint will be recorded. I've found them very helpful in the past. X


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## Caro101 (Jan 23, 2012)

Shell15 Thank you so much i wil ldefinatley do that.. Didnt even think that he'd have a secretary he he he..I will ring the main number and just ask for that Consultant's Secretary and see if i get any joy..Would it work if the hospital i had the op done in a completely different nhs trust/borough. 

Kinab that is also very useful. Thank you so much. Have just gone on thier website and got their PALS number. I will ring them first thing on Tuesday..

I had just gone completely blank and felt so helpless but i am feeling so much better have lots of different avenues to explore and try surely one will work.. Right


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## Shell15 (Nov 11, 2011)

Hi Carol,

Unfortunately the gp would not be able to access your results if it was a different nhs trust but try his secretary on Tuesday and let us know how you get on.  Good luck.

Michelle x


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## MrsJussiP (Mar 6, 2012)

Hey Caro101, I went through this for the past 5 years, I have had 2 lap and dye and they lost my first set of results and I never got the second!! I have only just found out that I was born with a severely disfigured and blocked left tube and slight scaring on my right. I had to have a miscarriage for them to even notice this. I have had loads of  fertility treatments over the years and now know they were all pointless!!!  and never should have been done, as IVF is the only option for us. Do not let them fob you off, try to bypass them crap secretary's who run the main office. Half the time I tried to get a message to my Doctor or sort out an appointment they never told him! One of them even tried to tell me I was wrong about endometriosis causing problems in fertility  (as that is what the Dr thought I had, which he never checked for and it turns out I don't have)! I couldn't believe it, I went mad and said she is not a doctor or a nurse so how dare she talk to be like that .  The NHS can be rubbish sometimes, the only thing I have good to say about them is that Liverpool Womans Hospital are amazing and since being there I have found out everything that is wrong with me, Finally 

Good luck with it all hun, don't let them mess you around  xx


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## paigepopcorn (Oct 31, 2011)

hi, really sorry to hear your story   the NHS are useless, i've had loads of problems myself! a lot of people don't do their jobs properly, i've found unless you nag and complain that you don't get anywhere. i found out after having really bad abdominal pain that i have a 5cm cyst and PCOS way back in september, and am still waiting for a laparoscopy to remove the cyst. i was told that i would be put on the waiting list to have it done. after ringing and asking how long the wait was i was told that i wasn't even on the waiting list! rang my consultant to find out what was going on and she had taken 2 months leave, with no other consultant to cover her there was nothing i could do until she got back to work. finally she made another appointment for me but i had to wait a further 2 months to see her again. when i saw her she didn;t even appologised, she was really ride and abrupt, when i asked her for info on PCOS she told me to google it! then she said she wants me back in the clinic on her next available appointment.. after 2 weeks i still hadn't heard anything about an appointment so rang the clinic to be told the consultant is on sick leave for 2 months and they didn't know if she was even going to be back then and that they couldn't find another consultant to take over her work- again! i was told to ring every week to see if they had any news. finally after 6 weeks i rang and they had managed to get another consultant in and i have an appointment tomorrow, not for the op tho, just to meet the new consultant   
like you we are not in any kind of position to go private, so it's just a matter of sitting out this"waiting game" they have going. i really hope everything works out for you and you get the appointment your entitled to have, which you should have been given after your lap and dye! don;t rely on anyone to do their jobs, they will just fob you off!!!!
good luck hun, and all the best x x x x


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## Shell15 (Nov 11, 2011)

Hi Carol,

Just wondering whether you managed to sort your appointment out?

Michelle x


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## Caro101 (Jan 23, 2012)

Hey Michelle

Sos for the late response have kinda been on a downer lately..not good..  So after much pestering and nagging on one of the days my telephone call landed on some kind and helpful lady who was so sympathetic and said it was unfair what had happened. She then lookd through the consultant's diary and somehow there was an appointment for me that same week. Attended the appointment and got told that the plan was to start a few cycles of IUI. The paperwork for my funding was done and sent to my PCT so imagine my horror when i got a letter saying funding had been decline. The reason: turned out i had been referred to the wrong hospital.. Aparently i should have never been referred to Chelsea and Westminister and that i should have gone to Barts as thats the hospital that has a funding contract with my PCT.. So i am basically back to the starting line..almost.. I am now in the process of trying to get someone to refer me to the correct hospital and also obtain the records of what was already done.. Nightmare.. Its got me thinking about just how unfair life can be.. that we have to go through all this hassle yet some people just sneeze and get pregnant.. but hey ho..How are you keeping..


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## MrsPootle (Sep 21, 2010)

Hi Carol,

OMG!  That is outrageous!!!

I really urge you to write a letter of complaint - for one thing - it might prevent someone else going through the same thing but more importantly for you, it would ensure you had a contact should future issues arise with the 'journey' to Barts.  I had a similar couple of issues - my first appointment for IVF was done badly (the doctor was distracted, long story, but googling for jobs whilst allegedly giving my consultation which led to blank blood tests being given to me and my OH not supplied with the correct test, er, equipment!).  Turned out the guy was a locum and in the end they didn't re-employ him.  I got a full letter that gave me all the details of their investigation.  But also, later on, I was referred from the ladies hospital to the main hospital to investigate high prolactin levels - eventually ruled out that there was anything wrong - but this took me SIX MONTHS to complete as appointments were sent to the wrong place, tests weren't followed up etc.  It would have been worse, but from my first complaint I had a hotline to the people whose jobs it is to sort out the bureaucratic mess that is our NHS health service.  I did have to ring the consultant's secretary alot - partly as my case was low priority as it was only for infertility and I wasn't near enough to 40 for them to consider bumping it up the queue.  I know that life threatening cases need priority, of course, but the nightmare of appointments, cancellations was SO bad.  In the end, I self-managed the whole thing - then fell pregnant but unfortunately lost the baby early on.  Which meant I'd then gone down in priority for IVF... etc, etc!

So big hugs   - I really hope that the PCT / Barts sort things out for you - I'm sure once you are on the right path, it should fly by!!  Note that when I got to the top of the IVF queue, it was really plain sailing - much easier as it's a self contained unit.

Good luck,

MrsP
xxxxxx


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## Caro101 (Jan 23, 2012)

Thank you sooo much Mrs P. Its amazing how much u can learn this infertility journey has taught me soo much patience ha ha ha. It was such a nightmare just getting someone anyone I didn't care who to refer me to Barts and all the people involved kept passing the buck. Eventually my GP did the referral.Sigh! Then started the war about my records of what I had done at Chelsea and Westminister. I was told my GP had to request them my GP said no we don't do that Barts have to request them Barts said no that's not how it works they must be forwarded onto us Chelsea and Westminister said no we cant unless u make a formal request which u pay for (fine) but takes 3 months. Eventually after nearly giving up and just making the formal request I spoke to God sent lady from Chelsea and Westminister she must be an angel. She said I can't give u the written notes but all the blood tests and procedure results I can print off and send to you - and she did . God truley bless her. And as soon as I had the appointment with Barts they rung me to arrange blood tests and semen analysis (by now the ones we had done are out of date) trans vag scans before the initial appointment with the Dr so there is no time wasted. It finally feels like something is happening. We have our appointment this coming Monday. Hope all is smooth sailing from here on. 
Hope things work out for you. When do you start tx ? You are in great hands at ARCG from what I hear.Toes and fingers crossed for you..


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## MrsPootle (Sep 21, 2010)

Sometimes it just depends on who you get doesn't it?  Thanks goodness that you got someone with an ounce of common sense (eventually)!  I'm not sure when I start treatment as such, but I have the old monitoring cycle planned once AF puts in an appearance towards the end of this month - and immunes and so on.  Quite looking forward to it - had to stall a bit as moving from north to south (Liverpool to Chelmsford) but dates *should* be ok - but you never know with mother nature do you

Fingers crossed for you that this is the last irk you get with paperwork and general bureaucracy!!

xx


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## LellyLupin (Nov 12, 2011)

To be honest there isn't anything you can do.  I was told to wait 2 years before I could be referred to see the NHS fertility dept and I was 41 at the time, they wasted the next year fobbing me off.  I eventually got to see the NHS doctor who told me I was now too old to have ivf at 44.  I requested my medical records (which they were very reluctant to give me and charged me £15 for) and saw a letter there from the fertility clinic telling the doctors that they had given me bad advice.  Also on my records it said I was pregnant at one point which I have never been.  I tried to get them to pay for private ivf as I felt they had wasted my time and got absolutely no-where.  They just close ranks I'm afraid.


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