Doubts after our 2nd appointment at the sub-fertility clinic -- NHS funding and how to select a clinic

[MofM]

Hello again!

A quick summary of my 'fertility' history: I am 35, my partner is 39, and we have been trying to conceive for 2 years. I had a first ectopic pregnancy on my right tube on Feb 2017, and in April 2018 I have been referred to a sub-fertility clinic which booked me for a hysteroscopy & laparoscopy & dye test for the end of June. Unfortunately, at the end of May, I had my right tube removed after a second ectopic pregnancy, while my left one seems to be closed (and potentially full of free fluids; hydrosalpinx) making IVF our only option to conceive our own children (after solving the hydrosalpinx, which may lower considerably our possibilities of successful IVF).

On Tuesday I went for a second appointment at the same sub-fertility clinic, which, as expected, suggested IVF. They asked us to do some blood tests (HIV, HepB and C) and to select one out of four IVF clinics available within our CCG.

I have asked several times what will now happen to my left tube (which, according to the surgeon who removed the right tube, should be clipped or removed), but the consultants keep repeating that from now on everything will be in the hands of the selected clinics (and this was the answer to all my questions).

Can someone shed some light on any the following doubts we have right now?

1. How does the NHS funding work? Do I need to decide the clinic before the referral is sent for approval to what the consultant called an "admin team"? If yes, will this choice make a difference in the success of the funding?

2. How long is the waiting time for getting an answer from this "admin team"?

3. Is there anything that can be done while we are waiting for the answer? I am thinking about removing/clipping the left tube.

4. We contacted all the four clinics. All of them said that the waiting list for the first consultation is between 4 and 6 weeks and that, after that, the time for the first treatment will depend on our clinical history. One of them offered to visit the clinic during an open day. Success rates are slightly higher for one of them (which offers the most expensive private treatments). How do you choose?

5. If we do not get an approval for the NHS funding for the IVF, can I still have the left tube treated by the NHS?

Thanks a lot for your help and sorry for the tons of questions

[destiny121]

Hi my love, not sure if i can help but will try. Basically i had a hydrosalpinx but was im denial and wanted to try ivf with both of them still there. I had a cycle and that failed, my consultant from the clinic then referred me to remove the tube and i had that done. This was all the within the nhs. So it maybe that once you meet the consultant at your new clinic they will refer you too xxx

[MofM in reply to destiny121]

Thanks for the information, this was very helpful (so now I know that whatever will happen next will be discussed with the IVF clinic consultant and carried on via NHS)!

[DianeArnold Partner Nurse Fertility Network UK]

Hi. MofM. I will try and answer your questions as asked.

1. Your NHS funding is decided by the CCG Clinical Comissiong Group assigned to your GP postcode. It is variable around the whole of UK. We call it “ The Postcode Lottery”,

2. You would need to ask the CCG how long.

3. Yes, you could sort your tube out privately, but check with GP/CCG to see whether you would still be eligible for NHS funding, if granted. Answer to be confirmed in writing, not just over the phone.

4. Your NHS clinic is chosen by CCG, who may give you a choice, otherwise you pick your own privately. hfea.gov.uk

5. That will be up to your consultant to decide.

Sorry, if this sounds abrupt, but I do wish you every success with whatever is decided. You can get criteria for NHS funding at fertilityfairness.co.uk

Diane

[MofM in reply to DianeArnold]

Thanks

[LKT1]

Can’t help with any advice on the medical side of things but our ivf funding application form has a list of 4 clinics w could choose from within our catchment area so you should see all your options on the form. Good luck x

[MofM in reply to LKT1]

We have four clinics in our catchment area as well, but choosing sounds to us like been asked to bet on a horse without having any idea of races Guess should get used of the idea of uncertainty, randomness and luck!

[Lizzielizzielizzie]

When picking your clinic, look at the hfea website to see detailed stats for your age group before making any decisions based on stats.

Consider how easy the clinics are to get to and the opening hours. Ivf procedures involve lots of scans, sometimes at short notice, so somewhere close to your workplace might make it all easier to manage.

If you want personal recommendations, post your ccg on here and ask people to PM you if they’re in your area and have experience at local clinics- they have to PM or it’s considered advertising.

At the end of the day, you just need to pick one. There’s a choice of four in our area as well, but one was much closer than the others and had higher stats so we went with them, and never looked back really.

[MofM]

Hi Lizzie,

thanks a lot for your answer.

We had a look at the HFEA statistics (both in the main pages, and in a 3-year range; 2012-15), and while 3 IVF clinics are very close as success rate, one sparks as offering much higher odds (along with a slightly higher rate of multiple pregnancies). This 'better' one is also much farther from both work and home (on the other side of the city), while the one with the lowest success rate (but also with the lowest multiple pregnancies rates, that I guess go hand in hand) is 20 mins walk from my office.

Asking for personal recommendations is a very good idea since nowadays I care more about the quality of care (including the patience of the consultants to explain me all the details of the procedure, I am a control-freak :D) than about the success rate.

[Lizzielizzielizzie in reply to MofM]

Did you find the part on the HFEA website where you can look in more depth at their stats to see patients the same age as you and with the same infertility problems? If you go deep enough into the stats you can find this.

[MofM in reply to Lizzielizzielizzie]

Yes, we did, but the detailed stats look old (I mean the most recent statistics for births are for 2015). We are focusing on the 3-yeast stats (2012-15; births only) since the number of procedures is higher and errors/fluctuations (hopefully) lower. Or is there some other info which I am missing?

In fact, the clinic with the higher stats has also the lowest number of procedures (~200), while those with lower stats, in line with the National average, have the higher number of procedures (~400) -- the one with medium success rate has also a medium number of procedures (~300). This is one of the reasons we prefer the human aspect over the success rate. In my opinion, eventually, all the clinics will converge to the same rates, that are also the UK national one (something you can already observe with clinics with > 400 procedures). Hope this makes some sense!