I hope you won't mind my posting on here - I work within the NHS for a fertility service. Our service is Nurse Practitioner led with a Consultant link and I do all the admin side of things.
We are very passionate about trying to offer the best service we possibly can to our patients. Of course, we have brainstormed about how we could do better but I felt that it would be a better idea to ask people who are actually going through the experience personally.
I would greatly appreciate it if anyone could share their experiences of what they found good/helpful/comforting throughout your experiences of fertility services (from GP/self referral onwards!) and equally things that you found bad/upsetting/frustrating.
Many thanks in advance
Mrs F
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mrsf03
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Starting at the beginning 5 years ago when I went to the GP I found this very frustrating as when we had some initial tests he told my hubby in no uncertain terms the only way we would have kids is to use a sonar but he would refer us anyway, we then went to the clinic and met the consultant who then explained that there was in fact an option and it evolved an operation (light at last) he had the op but then were told that we may not be able to have a free round as we didn't fit the criteria yet again another wall but no explanation as to how or if we could change this, luckily a blood test I had showed some hormone that changed this and we were accepted. From then on in it was OK,the only complaint I could possibly have is no one tells you any process from the first scan (which I was told when I got in the room was internal) to the process of collection we just went on a full blown roller coaster and hoped they knew what they were doing. The first one did not work so we then got told if we did it again we would have to pay and this would be 5k
4 years went by and we saved like mad hoping to get the money before I reached the dreaded 35 and with a small loan we did it so I called the clinc I then had to go for updated bloods etc which was fine, we had our consult where we talked everything through with the consultant then it went quiet until I had a call to say next perio I had to call them, from them on in although I knew the process the communication was awful!! No contact what so ever I didn't know when or what was going to happen we were left guessing up until the collection week when we were in and out of the hospital finally they explained what the time scale was we then went through the collection and transfer then the wait started this time round it worked and I'm currently nearly 10weeks pregnant and couldn't be happier, we've been back to the clinic and been discharged.
While I think the consultants and staff at the clinic are pure angels in disguise the one thing that I think needs sorting is the communication as this is one of the most worrying and frighting times of your lives and you have to guess your way through it!
Thanks Brimble - unfortunately the lack of communication issue seems to be a common thread. Do you mind me asking which clinic you were at for your IVF? We have a contract with 2 centres when we refer on for IVF and we all but stopped using one (bar specific patient request) because the feedback we have from patients re communication, the service they receive was just appalling....no support at all!
We are in Cornwall so went to Derriford in Plymouth the staff were great just no communication
Hello Mrs F
Thank you for posting and asking for comments. At first (5 years ago) I thought the fertility service from my G.P was very good I first went to see her after my husband and I had been trying for 6 months and she sent me for scans and blood tests and they found out I had several fibroids. I was referred to a consultant the first time we saw him he gave us some advice so we put this into practice. We went back and he put me on clomid we went back a few months later as I still wasn't pregnant and he gave me a higher strength of clomid but this made me feel unwell, tried and emotional that I didn't have the energy to try. We went back for a fourth time to see a different consultant and I explained how I was feeling with the clomid and she suggested putting me on a higher dose. I didn't want to do that so our next option was IVF. We found a clinic (private because of my age) and I went back to my G.P as I had some questions and wanted to make sure I would get support from the NHS during my treatment and if it was a positive result. She assured me that I would be supported and they are there for me. Unfortunately this hasn't happened and the service from the NHS has been appalling. When we started the IVF I asked my G.P for counselling and I was told they only give counselling to people who are depressed. So we found our own counsellor. During my IVF I was called for jury service and I went to see another doctor to ask if she could write me a letter so I could be excused. Her response was I don't know about IVF and that letter will cost you £35.00. During the last few years we have had many hiccups with our fertility and each time I have been to see the G.P I am told you have to make your own decision and you will have to pay for those blood tests because you are private. I am now going for egg donation treatment and I have been given a 60% success rate recently I went to see a G.P to ask about monitoring my progesterone levels and medication for the first 3 months if I have positive result and was told they can't support me because I'm private. I asked about extra support for the first 3 months because of my age (43) and was told I will be treated the same as any other pregnant lady. So I have gone back to the IVF clinic and they will support me for the first 3 months including monitoring my progesterone levels, medication and a weekly scan for the first 11 weeks. I'm sorry to say but I have lost my faith and confidence with the NHS. Regards Tasha
Thanks for replying Tasha - I'm so sorry that you've had that awful experience with your GP....thats appalling! It should make no difference at all that you've had to go private for treatment. If you don't mind me asking...whereabouts are you based? When you were initially seeing Consultants within the NHS how old were you? Did you feel that you would have benefited from a more specific service? (i.e. We use a Nurse Practitioner for all fertility patients for the sake of continuity and consistency).
As for the response from the GP in regards to counselling - I'm blown away. Its well documented that going through fertility treatment can be one of the most emotionally gruelling things you can experience....how someone can turn you away for counselling when your going through that I will never know.
Thank you for your reply and for understanding. When I first went to see the consultant I was 39. Yes I think we would have benefited from a Nurse Practitoner to explain about vitamins, dietary advice and IVF. It wasn't until I started going for acupuncture that we received all of this advice. All we got from the NHS consultant was let us know which IVF clinic you are going to and we will write you a referral letter. I'm in Berkshire. Regards Tasha
Hello. Our gp when we went to speak to him was very blunt when we started telling him my partners health issue. And told us that he was probably infertile. But would send us of for tests. Which thankfully came back he was not. Then we suddenly were referred to an inbetween doctor which we did not realise would happen. And there I was told that I need to loose weight and certainly not put any on otherwise we would not be considered for Ivf. Which i understood once I got over the upset. I went and lost the weight but felt that there should have been more help and what and how I could do it. Especially for others not so lucky to have tools to do it. Also my hospital once failed to label a blood test at all and so was refused by the lab. we had to wait a whole month to do it again. The clinic we are based at are very good now. Have had some issues with some nurses having no clue as to what your cycle treatment plan is. But that has changed since they brought in two nurses per couple. Much better. Also I do think there needs to be more info for the procedures at the beginning can be helpful so you know what to expect. But we are lucky and having Ivf treatment at a private clinic that takes nhs patients so found once we got there things got better.
Hi hubby and I asked for help from our doctor after we had been TTC for over 2 years. Not knowing anything about the process we went along for blood tests/sperm analysis so on so forth. We both work shifts and were treated very poorly from the start! We were told if we couldn't make certain dates we would be struck off any future IVF! This massively stressed me out as both me and hubby have jobs we just can't leave at the drop of a hat however having a baby meant so much to us both! We weren't really given any direction as what would happen and after months of tests had the dreaded "unexplained fertility" letter. As we are honest people we stated my hubby had a child from a previous relationship who he doesn't see by the way.
Not knowing anything about IVF and NHS we didn't know we wouldn't get funded as i had never been pregnant before Etc. Then the letter came sorry we are not funding you.....bye! I felt I had wasted a year of my life when in hindsight if we had known that from the start we would of gone private straight away! Awful, awful experience. Even the doctor/consultant communication was awful. various results apparently not shown on different systems? When clearly we had had them done.
Anyway after we received our bad news we chose a private fertility clinic who have been lovely. We bought the medication and was ready to go but just before I started it I found out I was pregnant with twins! Wow we were flabbergasted and completely shocked. Our little miracles we thought! Until our 12 week scan and there were no heartbeats :-(. Then all what we got was "do you want tablets or an operation". I feel numbed by it all to be fair. This was 6 weeks ago.
Knowing I can now conceive naturally we are unsure whether to give it a few months or pick up the IVF where we left it. But one things for sure the lack of communication and insensitivity throughout has been awful. Not once have I been offered any support or counselling. I do however have a loving husband who Is strong for me but who desperately wants to be a dad :-(. One day hey....??? Stay positive everyone says......
Lack of communication was a HUGE PROBLEM! Between docs, nurses, and us. There's nothing more frightening than speaking to a different consultant every time and have them say different things to you. We were Male factor. Yet every consultation I got comments how my blood results and weight were unusually good for someone with Polycystic ovaries, or they had good success rates with Endo. I have neither. When I mentioned it at our third meeting, when learning our time frame and drug schedule, he said I had PCOS, I asked if he was sure. He flipped through my file, got a panicked look, changed all of my drugs, schedule, etc. he then just point blank said that most women in the clinic have one or the other, so I shouldn't be surprised that he assumed that. WHAT?! Aren't they supposed to read our files? Egg collection rolled around and just as they were about to put an antibiotic in, I reminded them of my drug allergy which was highlighted in my file. They forgot to tell the person putting in the IV. I was told to come back the day after the egg collection for an alternate antibiotic as my bowel was nicked. I called in and was told that there was no way I would have been discharged without the antibiotic and the nurse refused to consult my file. She said to ask at the embryo transfer 2 days later. The embryo transfer was cancelled. So was my appointment. I asked about the antibiotic and was rudely informed that if I wanted an appointment it would be in 6 weeks, regardless. I got VERY SICK. My tummy was swollen and visibly red, I had a fever, I called the clinic, dismissed as being over dramatic, so then I lied. I told them I wished to discuss private treatment with the deluxe tier. (Same doctor and Nurse throughout the whole treatment). I was offered a consultation that afternoon! The consultant read through my file, told me what I should expect, that because I chose the super private, I had no wait, etc. so I lifted my shirt, showed her my tummy and asked how long til I recovered from that without antibiotics. She flipped out. I ended up being admitted into hospital. I did apologise for lying about wanting to pay £9500 for private, but I was desperate to be seen. She said she understood and would have done the same. That infection did a lot of damage to my insides.
I felt abandoned, ignored, and was treated like an idiot. The only time I questioned them was when I knew something was really wrong.
In the end we went private to a clinic a friend used in Denmark. They were lovely, thorough, no nonsense, and very supportive throughout the whole process. It took a few rounds, but we have a little girl as a result. We love her so much and if luck is on our side, we'll have another.
Ladies - I do not know where to begin...your experiences are horrifying! I'm embarrassed to work for a service that can treat people this way.
Mooster - was it your GP that told you that you'd be 'struck off for IVF' for not being able to make certain dates? I don't even know what to say to that...other than its a load of b&*$%*!s. I'm so sorry to hear about your loss....its dreadful that they couldn't even point you in the direction of some counselling.
Filmgirl - hearing your experience turns my stomach. I know the centre we refer to would be horrified by this....
Hi I wish to had my experience too and it wasn't a good one.. When hubby and I had been ttc for one year when we booked our intital appointment..the dr we saw was so insensitive and considering the sensitivity of the nature.. Could've and should've been handled much better.. Organized blood tests for me..then got cross cos he realized I had a child already although quite a long time ago.. Still couldn't go back on his word when ge agreed to blood tests for me.. Sperm to be tested at local hospital...told on the phone results were normal... Complained of severe bad periods was brushed off and told to go away.. Was made to feel like I wasted their time... Went back this time found a lovely lady dr who was very supportive and organized me a scan to look at my ovaries etc to save time at our clinic and coz she listened to my period concerns,. Went back after that when we were ttc for 2 years.. Refer all was sent off felt relieved to be getting some help oh haha.!!! Was told by our gp we would get ivf..Our clinic lost our paperwork and didn't know who I was..this really stressed me out.. Anyway by luck I managed to speak to a lovely nurse who was horrified by how we had been treated.. She arranged an appointment as our appointment had been given to another couple..and arranged to see us after closing hours to make sure our appointment wouldn't be taken again.. The couple failed to show up..with no notice.. We printed off our investigations and took this to our 1st appointment.. The first thing that was said was no assisted conception for us as I had a child although husband does not have any children..that came as a huge shock as all the drs had said we'd get ivf..suggest better communication between dr surgerys AND fertility clinics.. Then looked at my blood tests and found my progesterone to be low..and suggested I didn't ovulate at this that cycle.. One repeated later confirmed I did ovulate..requested by our nurse.. I had an hsg arranged again the results were normal..saw our consultant who confirmed this was unexplained infertility.. Terribly frustrating for us.. Again confirmed no ivf on nhs funding.. However our consultant found a way around our situation egg sharing.. It's crazy but we had no choice..we cannot afford ivf..yet two counties that are 3 miles either side of us would've funded our ivf.. This post code lottery is so unfair..the policy should be the same throughout each county..whatever the criteria is at least it would feel fair.. I'm sure I'm not the only one who feels like that.. Told us to try for another 6 months needless to say I didn't fall pregnant..shortest appointment ever lite rely gave us 10 minutes of his time..and shoed us out like we were naughty school children it was a humiliating experince.. We saw the nurse afterwards and she was so supportive and kind to us.. And told us if we ever needed her she would be there still.. Beleive me I have phoned her on several occasions and she has been wonderful something rare in the nhs that's my good experince.. Reeling we booked up an consulation with a private clinic for egg sharing... I had a scab a arranged there prior consulation.. I got a shock.. My left ovary was less than half the size of my right ovary..it looked so bad I was asked whether I had sub stained an injury to the ovary or if I'd had surgery on the ovary.. Neither was the case.. Went to my dr concerned with these findings again a disinterested cold dr who failed to listen.. I was so upset and worried over it I gave my mother permission to talk to the dr as I didn't feel strong enough too.. My mum managed to get me a scan to check the ovary was ok.. That was done.. Had another shock my smh was very low it was 5.37 I'm only 32.. Deveasted by these findings booked up an appointment with a dr we both trusted..had to wait a month for appointment.. I had been in touch with ccg in my area and they said with the findings I had the right to be re refered back to the clinic.. Appointment was dreadful only obe dr obe duty and he was clearly under pressure and he did not listen to anything I said.. Frustrated and upset and mentioned the dr I took on by calling her Molly and was obviously on her side.. Represented everything that is wrong with the nhs and when the private clinic said I could egg share despite low amh coz my follicle count was good.. 9 on right ovary and 3 on the left.. So arranged my screening blood tests.. A few days I received a prescription from the private clinic for thyroxine.. When I questioned why I had been precibed this..was told my tsh was 3.9 and to have a better chance of successful implantation it needed to be under 2.5 ... Why the nhs couldn't found that I do not know.. I prob don't need ivf just a prescription.. Happily when clinic got me to repeat tsh after 3 weeks ago it was fine 1.56. .told I will continue with this through ivf and have it re checked when I'm pregnant.. I feel a lot better since taking thyroxine I have more energy and my periods are more manageable.. I can carry on with normal life during my periods.. Before I couldn't leave the house for fear of flooding.. With tsmpons and pads still soaked my jeans.. Cramps so bad I bed rested.. Anyway husbands had his screening blood tests and should get the results this week.. And then I send the results of to my clinic and wait for them to find a recepicent couple.. I just wish the nhs had more resources and could've found my reason my underactive thyroid it took us going private to discover it. Disgusting.. 3 years 1 month later we finally got our reason..
We've put it all behind us and are looking to the future and where we go from here..
Good luck with your report or whatever is that you are doing..
Hi Mrs F I have just completed my first cycle of IVF (ICSI) and it was very stressful very emotional the support was overwhelming it really was. I'm under Coventry, They have been really fantastic we had a positive outcome so We are made up. I'm currently six weeks just awaiting my Scan. One thing I will say it was a little disappointed with was the embryoscope photos first thing being it was sold to Us privately in a private room with a lovely lady who talked us through everything. As we are new to this we didn't know any different and wanted exactly what was best if it was to up our chances then of course we had it. Very expensive £390, just before my egg collection I mentioned to the consultant that I have paid for the embryoscope he seemed Like he was not aware of this. which made me feel a little uneasy as £390 is a lot of money. After the transfer has been done I asked if I can have my photos as I didn't get one of the abdomen scan when they put the eggs back, there was some confusion taking the abdominal photo so I accepted that but I still wanted my embryo photos. They told me I had to apply and then they asked me have I paid for this I started to question myself....... on what information they exactly had. Bearing in mind I'm very emotional in a lot of pain I really don't need this right now. After applying for the photos they told me they don't really give them unless it's a failed IVF attempt but if I really want then I will see what they can do I need to ask them again when I go back on the 12th. But to be honest who is to say if I do get a photo that they are actually my embryos, This has left me feeling very disappointed that I had paid nearly £400 for something nobody spoken of are haven't seen any evidence of it. ️
Thank you For this opportunity to share this with other people who may be just about to go through the same situation.
Communication is definitely key. At my clinic they always focus on what is going to happen next or the next appointment (HSG or scan or whatever), and do explain that very well. However what I have often struggled with is not knowing what the next FEW steps are, the options, where we might end up... I have learned to push on this one and ask more questions: so, if we do X then X could happen, but if it doesn't what then needs to happen? I think clearly explaining what is happening not only as a next step but in terms of the path you are on, is key.
Compared to many women I'm just at the start of this journey but communication would be nice. All I would like is a letter advising when I am likely to be seen.
We took our doctors advice and tried for 1 year before getting referred. I was advised by my GP that I would get an initial appointment within 3 months of referral. 3 months passed and having no appointment I called the hospital who as advised it would be 6-8 months. That time has now passed so I called the hospital and was advised the waiting list is now 10 months.
My husband and I have now had all our tests done privately which has removed so much anxiety and worry. It is likely we will opt for private treatment too. We're incredibly fortunate to have this option. Many do not and I can only imagine how frustrating their wait must be.
It's an incredibly difficult journey and 2 years on, I've had no support from the NHS.
For us we had a good experience, I can't speak highly enough of the centre we used. What I loved most was that they were really real about things, we all know that we are dreaming of that tiny little bundle in our arms, but never ever did they talk about having a baby, they talked about cells and embryo' s and implantation, but never did they do what the centre my friend used did and say ooh let's hope next time we see you it'll be with a baby on the way. They really kept our feet on the ground and that was what I needed. Gentle, kind, and scientific!!! It might not be for everyone but I really didn't need someone to share my anticipation for what might be, I just needed the facts.xx
Thank you for your continued input ladies - I'm glad to hear that at least some of you have had some positive experiences! It would, sadly, appear that communication break down (or no communication at all) and Dr's bringing their own personal opinions/attitudes into things seems to feature quite highly on the list of negatives.... Also...do criteria's for IVF change from county to county? I know the Welsh/English criteria is different but had assumed that the English criteria was a blanket for the whole country?
Thanks again ladies,
Mrs F
Yes and I've had experienced this at first hand.. I live in Dorset and they would not fund our ivf as I've got a child from a previous relationship although my husband has no children..yet I live within 3 miles away from Somerset and Wiltshire both of these counties would've valued my husband right to be a father and we would've allocated nhs ivf funding.. Very upsetting for us .. No point in tying to appeal if they gave into us...they'd have to do the same for everyone else..
Thank god I have been accepted for an egg sharing program and I'm really grateful our ex consultant told us about this option...as we would be forced to give up our baby dream..
I just wish the policy's and criteria were the same throughout the county's at least it would feel fair..that's my biggest criticism of all..
Coverage varies from borough to borough, not just counties. Some counties allow 3 rounds of IVF, others only 1. Some only fund couples with no children from both sides, others will from 1 or the other. It is a bit unfair. Our borough only funded 1 go, we were fit and healthy, whilst a friend a few miles away in a different borough got 3 rounds. It's one of those true postcode lotteries. But, as a whole, I would take the NHS to what's available to most people in America anyday! (Even if they did mess up my insides)
Very few areas follow NICE guidelines. We moved x2 to finally be receiving x1 round of IVF- I'm 39 yet was 35 when we started our fertility investigations. Only my current trust investigated my actual 'health'. Both other hospitals delivered news 'my only choice was private ivf at £X' purely based on bold results. Eventually I had investigative surgery and hard cyst removed. Also identifying blocked tubes and fibroids. Although I appreciate each trust has different IVF budgets to manage, I would've expected my basic right under NHS should've been to have my health investigated when I first started this journey, and yet it wasn't. I wasn't examined, I wasn't looked at. So the cause of my infertilty was only diagnosed at the age of 38, by the trust who agreed to treat me. By this time my fertility is likely to have decreased further with my age. I thank god there was nothing more sinister underlying. However am disappointed through a seeming lack of basic care under my first x2 addresses. Postcode lottery shouldn't affect our basic right to investigative health, yet under the case of fertility I have first hand experience that this has happened to me twice. ( earlier typo should say blood results, not bold) with thanks - you can read more about my journey on my bio.
Overall I'd say the service and support we've had from the Centre for Life in Newcastle has been excellent. Key things I've appreciated are:
1) Relatively low waiting times
2) Nurses are always willing to call you back to discuss any questions, and usually call back very quickly
3) The staff are all very caring and sensitive and explain everything very well.
The only change I'd really appreciate is if they could have more appointments outside of working hours. It's hard for my husband to get time off work, especially since he travels a lot, so a midweek appointment can be almost impossible for him. He's also not keen on telling his employer why he needs time off, and I can imagine many others would feel the same. I appreciate once you're undergoing treatment, there can be no flexibility in dates, but for the initial consultations and tests, it would be lovely to be able to arrange appointments outside of working hours. After all - we are all out working hard to pay taxes to contribute to the service.
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