Did you receive the emotional support... - Fertility Network UK
Did you receive the emotional support you felt you needed from your clinic whilst undergoing fertility investigations and/or treatment
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The whole process is far too long and people need to be educated from the start. I.e told realistic time frames, told if certain people won't be eligible for IVF then it's their choice if they want to go private straight away. Facts need to be in situ from the start!
I totally agree and I experienced the same problem. At 35 it took numerous trips and 18 months before my doctor refer me to a specialist, by the time I saw the specialist I had just turned 37. I really wish the doctor had got a move on with starting investigations after 6 months. The waiting has taken an emotional toll...
I received NO support whatsoever. My first Gynaecologist kept trying to make me choose between fertility and pain control, constantly trying to pressure me to have a hysterectomy (I had heavy/painful periods caused by Endometriosis). This was BEFORE he even knew what was causing my Gynae problems! He was rude, rarely showed up to appointments (thus I was passed round loads of different "lackeys" all of whom had different opinions), and disinterested. All he was bothered about was running some kind of personal research project giving obese women Metformin!
I was NEVER shown any compassion if I found decisions hard to make. Nobody outlined my chances of getting pregnant. Nobody gave me information about assisted conception. Nobody talked me through the full risks of being pregnant with Endometriosis - or even if I could easily get pregnant. This Gynaecologist just kept saying I needed a hysterectomy (despite the fact that I first presented to him with symptoms aged only early thirties and WELL before natural menopause). He just didn't seem to care about risks, side-effects, anything!
I cannot describe how glad I was to hear that he had suddenly passed away! I am now under a new Gynaecologist, who has been so much more thoughtful and considerate. I never again wish to come into contact with such a rude, unhelpful and uncaring so-called "health professional". Disgusting!
Have had mixed experiences. NHS fertility clinic for initial investigations - no support.
Private fertility clinic for IVF - ok at first but after 1 failed IVF and 2 failed FET - they lost interest.
2nd clinic - private clinic but NHS funding for IVF - good counselling service but again felt abandoned after 2 failed IVF's. Its almost as if they don't want you on around making their figures look bad.
We were told in an appointment that lasted 7 minutes that we would never conceive naturally and probably wouldn't be able to have our own bio child even with IVF. We were offered no counselling at all, just referred back to our GP until I'd lost enough weight for IVF! They wouldn't even do any tests on me and won't make any further investigations as to why my hubby has a sperm count of 0! So we feel as much in the dark about our inability to conceive as we did before going to the doctor about it.
we had similar situation and it took me 1,5 years to loose my weight to be qualified for IVF on NHS. after 1st cycle failed i only had a phone call with direction to do blood test in 3 month and that next try will be in 6 month.
i know that cycle of IVF only lasted 2 month all together but it took me 2 years to get where i am now and with weight piling on ... i feel suvh a looser and afraid if they will ask me to loose more weight which means it will postpone my next cycle...
That's what happened to me.. When I started losing the weight, I couldn't lose the last bit.. Paid for a scan and they found a cyst as big as a grapefruit... I'm soo fed up, I'm going down this road again.
My advice keep bugging yor g.p! Or else the time will fly and you'll be 42 yrs like me.
Our clinic was fantastic! I burst into tears during one appointment and my consultant was really supportive. I even had the phone number for a member of the team who I could ring with any questions, if she wasn't available she always rang me back.
good to see some supportive clinics, but clearly there are more who don't provide enough support, perhaps because they don't have the resources and time. It's so important though - we might use some of your comments anonymised to support calls for more support so please do keep sharing them, thank you
Nhs were shocking to me. No advice given on treatment just told what they thought was best. Offered no discussions between gynaecology and hand Ivf about my severe endo. Just dragged along but them saying I had no option but Ivf despite them knowing I had severe endo. They advised me not to remove endo and having Ivf, both failed. After second failed Ivf I saw private endo specialist said should never have had Ivf with severe endo. Nhs refuse to acknowledge my appeal on my treatment so now left with private costs.
really sad to read some of these - keep leaving us comments so we can try to do something about these experiences
More interested in maternity ward across way! Had fibroid imb then got a letter pretty much saying they their hands of my case! Mid 40s now so let down terribly by nhs
My issue has been with the attitude of consultants (and some, not all, nurses). At NHS clinic; when going through paperwork regarding what might happen to any remaining genetic material in the event of one of our deaths; my husband was told (by nurse) to not bother with surrogacy but to "get a younger model" if I died. Nice! Consultant never appeared to have read my notes and was constantly trying to crack jokes. Inappropriate! As we have to pay anyway, chose private clinic this time, consultant another "joker", on finding that I had a massive fibroid that needed removing, delaying IVF by several months, consultant and nurse laughed about it! I left this unchallenged at the time because I was so stunned and also from fear of alienating the staff. Dissapointing.
Also have been quite shocked by how little information was offered to us in whole NHS process, from the very beginning when referred in Feb 2013 until March 2015, no counselling offered, no written materials given and very little verbal information from the main doctor at Glasgow Royal. It's taken over two years wait and since Dec 2014 they have passed us from one routine test to the next. From June 2013- Oct 2014 here was a very long gap where it seemed they had forgotten all about us, and when I enquired it sounded like notes had not been passed between departments and we had somehow slipped through the net. Then when we finally started getting all the appointments for the routine tests it seemed like things were moving but there was nothing communicated about actual timescales, so have been utterly distraught to be told in March that they wouldn't fit in more than 1 NHS funded cycle before I turn 40 in August. I was referred by GP aged 37 and am now 39, I feel very let down and ill informed by the system. I should also mention it is not me but my partner who has the fertility issue, but my age will not help matters. This news about the 1 cycle was casually mentioned by the main doctor in a 5 minute consultation in March, after 4 months of basic test appointments which could actually have been done in one day. Only by my sending a complaint email have we finally been heard and met with another ACS consultant who has been very good at answering all our current questions. She in fact seemed surprised we had not been told what each blood test was for and that we still hadn't been given written consents to sign. I still don't know exactly when we will finally start our 1st and only ICSI cycle, they always make it sound like it will be soon, but then you get sent a date which is another 1 or 2 months away.
Awful and very unclear. If we had known how much of a battle rather than supported experience then we would have gone private from the start.
ps- if you need any evidence for your study I am happy to provide my complaint email with timescales etc.
I've had experience of 1 nhs clinic and 2 private, the difference between the 2 private clinics communication has been shocking - the 2nd clinic Liverpool women's hospital told us how many eggs fertilised then we heard nothing until the day of transfer, just turned up not knowing if we had anything to implant! Also they wouldn't tell us if any embryos had been frozen we had to wait for a letter which they told us could take 10 days! Yet the nhs clinic called them and they told them over the phone!! It made the cycle much more stressful than it should have been
Hull IVF unit were amazing. The entire team from consultants, nurses to secretarial staff were extremely supporting throughout our 8 years.
My husband and I were told that we needed IVF four weeks ago. We underwent lots of investigative tests with our GP and as a result were referred to a consultant at the hospital. We waited for three months for an appointment with the consultant. Our appointment was at 3pm and after 2 hours of sitting in the waiting room our consultant left the clinic, without warning or concern for the fact that we had an appointment booked and had been waiting two hours already. Another consultant had to see us and we were told that we had to be quick because she needed to leave too (needless to say it was half 5!). The consultant proceeded to explain that we have little chance of conceiving naturally and IVF was our only option, followed by 'I wish I could explain it all to you but there really is no time' - we were told to sign consent forms and passed a leaflet on IVF. We were with the consultant for less than 5 minutes. It felt like our world had been tipped upside down and then we were ushered out without even an opportunity to ask a question, we haven't heard anything since! We were told the funding process takes four weeks, Iv later found that it can take up to ten weeks (only by doing my own research). My husband was told to take a second test but even then the fertility clinic wouldn't give us the results (I assume because the funding hasn't been approved yet) and the GP printed the result for collection and just wrote 'normal' on the top of the page. We have had no offer of support from the NHS and haven't been kept informed of what's happening at all. I have read posts on here that suggest therapists treat infertility strife the same way in which they treat the grieving process and therefore I am correct to assume that this is a highly sensitive and emotional subject. Am I being particularly hard to please or have the NHS failed us here? is this how they treat all fertility patients? has anyone else experienced this? I feel like I should complain but I don't want to burn bridges with the consultants that will eventually (hopefully!) be treating us. x
Hi Lauren-I'm just reading through some older posts to get some support. I find the consultants rush through everything-then you get a badly photocopied crib sheet pushed into your hand. The nurses however are fantastic where I am.
It's really interesting to discover this is the same as a grieving process. That explains so much about howvI'm feeling and I might try to explain that to my partner.
People are messing with time with us and we have none. I was 32 when I first started this process I'm now 35 and having pre-menopausal symptoms (mum had menopause aged 40) so we have no time. I'm going to chase an appointment today -wish me luck!!!
I hope things are better for you now
xxxxxx
Once you get passed the NHS stage things are much better managed by the consultants. Unfortunately as with many things in this country your are just a number to the NHS but once your under the care of a private clinic you are treated with much more care and concern. Good luck with your journey X
Patients cannot make informed choices without being given information. It is simple. Fertility treatment is not regulated stringently enough. People are spending a lot of money making ill-informed decisions - in essence throwing it away. Who is responsible for that? Who picks up the pieces? Such poor practice is not sector specific, either... all of which induces stress and therefore further jeopardises the chances of a succesful outcome. It is shameful.
I am in the 2ww of my first NHS funded ICSI.
I have found my clinic to be amazing. The initial tests performed by my GP were lengthier with wait times in between. Probably about 6 months to get referred, but once we were it was all go. My doctor who I saw each time was lovely and sympathetic. On one occasion when I cried in her office she hugged me and was just very understanding. She recommended a few more tests before beginning to ensure they would be included with our NHS funding (as we were only entitled to one funded if we got them done after we would have had to have paid for them privately).
They offered us 3 counselling sessions free of charge at any time during the cycle or after. We haven't used them but may do at some point.
They gave us telephone numbers for the nurses and out of hour numbers too. When you phone them no question is too little...
Just the fact that there was absolutely no waiting list was fantastic.
I am at the beginning of my 2ww, having just had our first cycle of IVF funded by NHS, but carried out in a private clinic.
I first went for help over 3 years ago. My Dr, although very nice, wasn't helpful. We had been trying for over a year with not even a sniff of a pregnancy. Anyway, she wasn't interested until I lost weight.
Fast forward another year, I had lost some weight, but not at the 30BMI, but I went back. My Dr was still reluctant to refer me because I was still overweight. I literally had to beg to be referred and say I promise to lose further weight. It took about 6 weeks for my appointment to come through. From that initial appointment to the point where the consultant said yes, i'll refer you for IVF it was about 12-15 months. TOO LONG (didn't help that his secretary was useless and forgot to arrange my follow-up appointment!!)
Anyway, we get to the private clinic, and it was soooooooo totally different. I had lost 4 stone, got under the 30BMI and met a fantastic team of nurses.
As I say, we're in the middle of our first cycle, and can honestly say the whole team have been fantastic. So supportive, and not phased by my tears and fears. The nurses are wonderful and the gynae is lovely.
I'm very supportive of the NHS, but they just don't seem to have a handle on infertility problems and they definitely cannot see past the BMI 30 point!
I am just about to start my injections and have found the fertility doctor/nurses and consultants all very friendly and helpful. I could not fault them.
The whole process is very slow and we weren't prepared for the waits in between appointments and it may of eased the stress if we knew it would take over a year till we actually started treatments, but apart from that, so far so good.
I had so much support from the clinic very friendly and very caring everyone I spoke to have me all the info and reassurance I need Ivf is an awful experience but they helped me through only had to do it once got my bfp but will be going back there in the near future to try for another child and wouldn't go some where else if even if they paid me kim 😜
Can anyone recommend a counseling service in regards to infertility? Plse...
Where are you based Lidzz?
I would recommend trying the Infertility Network UK website. They have links to support groups and also a number for a support line which may help in the first instance.
If you are at a clinic they should be able to provide access to a counsellor.
Alternatively, I found my counsellor doing a 'Google' search. She was fab and really helped me through a difficult time. But, if you do this make sure the person is properly qualified!
Good luck x
During all my cycles I have not been offered support. On my second cycle as requested I rang the clinic to say it had failed. As they didn't answer I left a message and didn't get a call back.
This cycle I did address a nurse about her attitude. She was frustrated that she hadn't been able to get hold of me, I tried to explain my sister had just died. I received a letter in the post basically saying shut up or go to the clinic direct as I use a satellite clinic.
went for my egg collection focused when I arrived they said I had to go to finance as they wanted payment for the glue. Even though at that point I had no idea about egg fertilisation. I told him I didn't appreciate this conversation at this point and he replied complain then I'm just doing my job.
Overall emotional support no, it's just a job to them the word empathy doesn't exist.
No, I didn't get any support and I recently told I have to have tests for endo.. A few yrs ago I went private and they found a dermoid cyst. I am really annoyed at NHS.. I've had numerous laparoscopy and they still wanna do more tests... I'm soo fed up and this has been going on for a 20 yrs!!
I'm in Nottingham...
Yes, whilst I was going through everything, however, when it didn't work, I felt as if i 'd been dumped. I saw the consultant, who said my only chance of conceiving is with a donor egg, and he would not support my application to the healthboard to ask for another go with a donor this time and that would be £9k, don't leave it too long. He aslo said the health board probably would'nt support me due to my congenital heart defect, which has not changed in all the time I've had it, and my heart consultants both said I was OK to go through IVF and birth and even twins! So if my heart was a problem in the first place, why was I able to go through IVF firtsly and why is he willing to put me through donor egg and ICSI now, as long as I'm paying??????? Ethics come to mind ...... felt like I was with a double glazing salesman!! He also said doesn't need to be this clinic either, like as if I'd ruined his statistics for the clinic. I had a round trip of 200 miles for a 5 minute chat, felt like a total failuer .... was prettey angry about the way it was handled. As there was no sympathy, he couldv'e just emailed me !
Sorry about the rant, I just think that there is a large market in fertlity treatment, which I might add, is not infertlity by choice. There women and couples all over the UK going into debt as they want to have a child!
I was given a leaflet on the clinics free counselling service but my clinic is in another city so not convenient. I would have liked counselling but to go private is too expensive on top of acupuncture & travel.
I don't think couples are given realistic waiting times we certainly wasn't and most professionals are so matter of fact & lack compassion/empathy.
I am 39 and timing is of great importance at this age no one told me the whole process would take nearly 2 years!
I first went to my gp about infertility at 18yrs old ..we had tests over a period 3 years and then nothing for about 2 years ( we got married so took my mind of it ) after the wedding we followed it up to see whats going on and was told we were not entitled to nhs funding untill i turned 25yrs old and that if i had private treatment while waiting it can effect my chances of nhs funding ! Little did i know this was un true 😠 i then had a new gyny and he was brilliant with me , finally had me to go for a laproscopy to see whats going on with me even though the husband spern count was diagnosed as low but that came back clear ! I suffer severly with my periods every cycle , extreme pain, sickness , pass out ect but they all brush it to one side even though i am still sure that theres more need to be done about this ! Its not right to be the way i am every month ! 14 months after my 25th birthday i finally had our 1st consultation at the clinic and treatment started about 6 months after that..i feel like the whole process was not explained jn full detail to us , just sort of went along with what they said but now i know things should be dealt with differently ! However most of nurses at my clinic are very lovely and helpful. Xx
50/50 .. Sometimes I have felt supported but others I haven't x
