# What Support was offered to you by your Clinic???



## astrid (Feb 10, 2003)

Hi Girls
This is not to offend in anyway...
But this is just a general question, one that has bothered me since we called it it a day..
I have read and read about how wonderful clinics are and what has been offered during a treatment and when you are sucessful...
Well the thing that has always made me sad is what about the ones, who are not successful...Where was the support to having some sort of closure?
Not even a letter to offer support during the hardest decision ever to me made and that is 'calling it a day'...Or even looking at other options...
We as individuals faced the reality on our own, with the consultant eager to see the back of us, because he did not have the skills to deal with this situation..(my personnal opinion). 
All we kept hearing was miracle stories of those giving up and then falling pregnant unexepectantly...yeah well that doesn't always happen...
I am sorry but sometimes i feel like posting, yeah alot of these clinics maybe great when you are sucessful. Try the  shoe on the other foot....but of course this looks like sour grapes and so i feel that i am at the stage, to express how i feel about this subject........
But i feel its so sad that we have to try and find our own feet...we have ploughed enough money into our treatment, atleast maybe there could be some support..Or if you haven't gone for treatment, where did you find your support?
I know and apprieciate that there are some good places out there..but there is nothing worse than feeling so alone and helpless...not a nice place to be..
What would we do without each others support...
Regards astridxx


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## perkyone (Dec 8, 2005)

Good Evening,

I haven't been on for a while but I have just seen this post and have had the same thoughts.

Our GP was the one who finally said that he thought we had done all we could and supported us in deciding not to try any more. The clinic were still thinking we might try again.  Personally I needed someone (a medical opinion!) to tell me that we had done everything we could.  The clinic was not the place - they always said to us that we were good candidates for MESA ICSI - I always produced lots of eggs and most of them fertilized but they never stuck.  This did not help us in our decision to stop.  We had been trying for 13 years and needed to stop and get off the rollercoaster and get on with our life.  An easy thing to say but still difficult to do.

Our GP also said that specialist counselling would be hard to find (I didn't want to go back to the clinic for counselling it was a reminder sitting in the same waiting room as everyone else going for scans etc) and if we needed any help then to come back to him first.  He was our personal counsellor, he knows us both well and asked us to make a double appointment with him and we had a chat about our situation he sent us away with a piece of white paper and pen and suggested we write down all things we wanted to do in our lives and could do without children.  He didn't want us to consider adopting at least until we had got over our initial grieving process.  He also sent me back to work, I was at such a low that I didn't want to go but looking back I am pleased he didn't give me a sick note or I would have moped about at home even more.

We decided to stop in January and eight months later its still hard and will be for some years yet I don't expect this decision to be easy but I know my GP is there if I need him and he will give us the time.

This website is also a great help - reading the posts and realising you are not the only one feeling the way you do and it is all quite normal to feel the horrible feelings we feel we ought not to have ie jealousy, hate, and the its not fair stuff etc etc.

 to you all
perkyone


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## Mamf (Jan 2, 2006)

Hi, 

Feel a bit of a fraud for posting on here as DH and I were turned down for IVF as I have other stuff going on (I have a stomach ulcer due to NSAID use for my endo and they were worried that they didn't have the correct resucitation equipment if I'd got reflux or complications during EC / ET), and I was scared that IVF would also make my endo worse. But, to be honest we were both a bit taken aback by our clinic's lack of interest once we decided not to proceed; we felt as though they couldn't get us out of the door fast enough and lost interest in the questions we had. 

We went along just after I'd got my IF diagnosis just to see what we made of the ivf process and this also took me by surprise as there was no sensitivity towards us once it was clear we weren't signing on the dotted line - this was 2 months after my diagnosis and we wanted to wait until we'd come to terms with the implications before we made any decision (we thought we were being sensible!). Our whole experience with the clinic was very offhand and very cold - I'm sure if we'd been willing to sign up for treatment they would have been fantastic (they certainly have the statistics to back up there reputation) but we felt very hung out to dry. 

When I went back to the Drs to tell them I wasn't coping, my GP's response was "well, you can't be that bothered otherwise you'd have tried harder with IVF". I was given counselling eventually from my GP but it was lacklustre and from someone who was inexperienced in dealing with IF.

The whole experience made me feel incredibly lost and alone, and to be honest it's made me really sceptical about the IVF industry as a whole as part of me also wonders whether they were so offhand with me as they knew my endo was so bad I would be unlikely to be successful, and this would affect their statistics (sounds very conspiracy theory I know!). 

I'm sure that for my experience there are hundreds of good, positive stories from women who have the babies they longed for and who found their clinics helpful and willing to do whatever they needed but for me it's just been a bit of a slap round the face when I needed support and kindness and was at my most vulnerable. 

Sorry if this post has offended anyone. 

Sam
xx


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## astrid (Feb 10, 2003)

Hello Perkyone and Sam
Thankyou for posting your views on this matter! 
I would just like to say to Mamf, your input and experience is as valid as everyone elses and by no means are you a fraud...but someone who had a difficult road and i a very selfless person..I feel very sad because i am not convinced it is about us not having the end product. I think its about just getting the support and care that we would atleast expect from an already difficult journey.
Perkyone, i am so glad that you have a great G.P. Its so good to hear that there are supportive people out there and to me these are the ones that we never forget...and as you say it will and is a difficult decision to make, but i am glad that you know that the GP is there if you need him/her in the future...
thanks for sharing this with us and its so nice to hear from you both...
lots of love astridxxxx


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## emcee (Apr 3, 2005)

Hi ladies

My clinic told us we were more than welcome to go back to see the counsellor there anytime we wanted to after our treatment had ended. This has proved to me to be nigh on impossible because they decided to slap the new womens hospital here right next to the IVF clinic - it was difficult enough walking up to the clinic whilst going through a particuarly rocky treatment and seeing all the very pregnant mums to be with their bumps outside smoking, and even worse, the shop with all the pink and blue congratulations balloons etc. It really smacked of a case of the haves and have nots the haves go in the doorway to the womens hospital and the have nots skulk in and out of the IVF clinic too scared to make eye contact with anyone. Everyone used to stare at us from the womens hospital entrance and cafe as we walked into or out of the clinic too, it must have been pretty obvious we were going there for treatment after all, its signposted as the centre for reproductive medicine which is just a bit of a huge givaway!

There is a wooden fence that divides the two - but its no good because if you leave the place in tears (as I had done many times) you still have to walk back to the shared car park past the womens hospital, shop, cafe, ambulance bay and Joe Public - and because I know a lot of people who work at the hospital, you get people asking you where have you been etc and looking at your tum expectantly and they are obviously waiting for you to tell them some 'good news' because they assume you have come from the womens dept.

I had to go to the womens hospital recently to visit a friend who had a hysterectomy, and it really dragged up the memories of all the times I had spent walking up there whilst having my treatment. I felt as sick as a dog afterwards!

So all of the support I have had since treatment ended has been from my friends - some of them who have been through IVF, some who have been through ectopics, some who have no idea of the first thing about IVF but who have helped me in different ways, some who have come to the end of the road too and you gals here - whilst I'm here I'd like to say just reading what you have to say has been an HUGE help to me this past year.

Astrid, thanks for yet another wonderful thread honey xxx

Love to all xxx


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## NixNoo (Aug 19, 2005)

Hi ladies

Another interesting thread Astrid –thanks.

To be honest our clinics support was pretty pants when I think of it.  Our first attempt we satellited (is that a word?) in Eastbourne as that who our local nhs used at the time, this cycle was probably our best or at least the one I felt most comfortable with apart from the NHS part of it was horrible as like Perkyone, all our scans were in the maternity unit, the satellite clinic was lovely.

The rest of our attempts were with a Private Hospital (but the same consultant) but they also used a satellite clinic in London, we tried to use the original one again but they wouldn’t satellite with them.  Apart from the stress of getting to London for EC & ET we felt like we were on a conveyor belt and everything seemed rushed to get the next one in.

We were offered absolutely no follow up consultations from our consultant at any of our attempts, looking back now, maybe we should have asked but at the time you’re not really in a fit state to think of everything.  On our fianl attempt this year, we were offered no follow up, even though our consultant was aware it was our final attempt as it was him who advised us not to continue with my eggs.  

I think it would be nice to receive a letter from your clinic, whether you have a positive or negative result.  Some kind of acknowledgement that you exist would be nice, they seem happy enough to take your money but you seem to be dropped like a lead balloon when your cycle is over.

Sorry to sound so cynical.

Nix
x


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## karen j (May 19, 2004)

Hi everybody

My hubby and I decided to take our names off the DE waiting list.
We wrote to the hospital on the 31/12/05, asking them to do this for us.
At the least I thought they may have wrote back to confirm they had recieved the letter and would remove our names.
We have never heard anything from them.
Karen j


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## flipper (Jul 7, 2004)

Hi ladies

I'm interested in this thread because a number of your posts sum up our experience.  I have to say that the support wasn't bad, it's just that it didn't exist at all.  Full stop. Nothing. 

Speaking as an accountant, I think the whole thing is nothing more than a business. Either way it's likely to end in repeat custom. If it works you want more and if it doesn't work still you want more and I think we're all conned as patients into thinking it's anything more than basic commerce because the people who take our money wear white coats.  Cynical or what eh?

We received the pack that said "you can call upon our counselling service" and that was the last of it. To some extent I guess the hospitals are in a no win situation, not following up shows lack of interest, following up could potentially make you feel pressurised however I completely agree that a letter of recognition perhaps outlining the way forward and providing numbers in the event of support being required isn't too much to ask. They could splash out and add the 32p postage to the fee!

I couldn't get my clinic to return a call and likewise I don't seem to have much luck getting them to take my name off the annoying "Friends" list which sole purpose seems to be to beg for more money cataloging the endless success stories which mean absolutely nothing to me.  Now I just chuck them in the bin without being opened.

Anyway, I'm not normally this cynical. Five years and £15k has the ability to remove what was left of any rose tinted spectacles!

flipper


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## Hippy (Aug 2, 2005)

Thank you Astrid for raising this very important topic, it is one I so hope the HFEA are going to do more investigation on. I have been one of those FF members helping them to complete their quarterly questionnaires re asking patients what their experience of tx was, and on their latest email re the last questionnaire results, I was very interested to read that out of 500 people who answered the questionnaire 15 % of those had now ended tx. This just goes to prove there are far more people than we probably realise that find themselves in the involuntary childless situ and therefore getting a clear pathway of care services for this distressing situ is so desperately needed.

As everyones posts have highlighted there is no common plan implemented when people are suddenly in this situ, other than offering their on site counselling which as many of you have already highlighted is the last place you want to go when it all ends. I could not bring myself to ever return to my clinic - so being able to access their counselling is just not an option, and I ended up asking my GP to refer me to the surgery counsellor which sadly turned out to be a very unhelpful and damaging experience due to the lack of IF knowledge that the counsellor had, a result of which was frequently insensitive comments. I have stopped the sessions as I felt so hurt, and am now left to try to sort my feelings out on my own and at present feel very low. 

Love
Hippy
xx


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## astrid (Feb 10, 2003)

hi girls
Hippy Sending you a .
I can understand why you are feeling so low at the moment....it is a very difficult and unsure path to take in life...you know where we are if you need us...
I was so interested to read everyones comments and its so surprising that they are not to dissimiliar from each other. Thats quite a shameful result and as you say Hippy that 15% of 500 people have finished treatment. There is certainly an area that the clinics need to address in their approach to dealing with patients at the end of the road..the ones who find themselves there and never expected to be..thats why i feel that support is so important and it looks as if most of us never received that...
I have to agree with you Flipper i think it is a business and sadly thats how i feel...the biggest surprise to me was the clinic that i went to one of the medical staff had IVF on their number plate...i didn't know whether to laugh or cry...What do you make of that? UMMMMMMMMMMMMMMMMMMMMMMMMMMMMM!!
Love astridxx


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## Bangle21 (Dec 17, 2004)

God!  I've heard it all now - what next?  Fertility staff wearing badges saying, "I made a miracle baby" ?!!!!

Oh dear - we are cynical today!!  oops!

Lets face it, the whole IVF thing is such a clinical "procedure" to them isn't it?  Many a time I had to ask the nurses to go more slowly with the scan probe as they "rammed it up there" so fast and furious sometimes it actually made me jump off the table it hurt so much.  Its just a factory production line to them isn't it?  They think they "understand" the whole "emotional rollercoaster" of it but they haven't got a clue.  They have no idea of the day-to-day emotions that go on for years, and years, so understated and so mis-understood.  They haven't a clue how it affects everything in life from your relationship with partners, family, friends, colleagues.  The social occassions we avoid ..... the list goes on and on.

In my experience, most of them (fertility staff) are so far up their own a**es with the whole "miracle baby" thing, they forget about us, the emotional needs of the patients, the reasons for offering us IVF in the first place as they are mostly (in my experience) only interested in saving their own backs and achieving better stats than the next clinic.

Sorry to generalise here, I am sure not all clinics are the same, but this is certainly my experience at a Scottish clinic!  

More importantly, when I use the word "nurses" here, it is purely in the context of the fertility nurses I have experienced!  No offence to anyone else,  (Astrid!!!) 

Love to all, great thread
Gill xo


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## flipper (Jul 7, 2004)

Personalised number plates with IVF on them?  Under other circumstances I might just (only just) find that funny.  You wonder about the mind (and mentality) behind the plate.


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## emcee (Apr 3, 2005)

flipper said:


> Personalised number plates with IVF on them? Under other circumstances I might just (only just) find that funny. You wonder about the mind (and mentality) behind the plate.


Barf! Its sickening! It really makes me want to go and throw up all over their shiny car! Ugh! How disgraceful - just goes to show that fertility treatments are a way to make a lot of money! Scream!


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## astrid (Feb 10, 2003)

Ha Ha...
I love the replies....
Yep both hubby and i wondered what planet he was on...? 
I was going to say something really rude...ummmm better not!!!


astridx


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## irisheyes (Feb 2, 2005)

Only getting to this now as have been away. If you read back over the posts you will see that a few months ago our private clinic sent us a letter(almost a year from our last failed tx) inviting us to :

A parents and children day!!!! I think that says it all  I was going to complain but let it go in the end. Thought they should have checked their records to see who was actually sucessful in treatment and had a  child to bring!!!!!


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## emcee (Apr 3, 2005)

Good grief (for want of better more descriptive swear words) Irisheyes, thats appalling... I am absolutely gobsmacked and think that is an utter disgrace! Barf and double barf from me that your clinic could put you through this! How absolutely sickening for you, I'm so sorry you had to go through this!

Good to see you're back, sorry you have been in the wars (I read you have your ankle strapped up, hells bells, we're getting quite a few of us with poorly limbs at the mo)!

Sending you a huge hug 

Love from me xxx


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