Fertility treatments on panorama bbc1 tonight

[Uponastarr]

Morning,

Inside britains fertility business on panorama
Bbc 1
8:30pm
Tonight - 28/11/16

Might be interesting viewing?

Is this about the add ons that are useless and ££££

:( we've spent a fortune and reading it today I think we were probably misled. Thousands of pounds on things that didn't work. DM showed me a list and said "you evhad most of those haven't you?"

Don't know if I'll watch this or not. It'll probably upset me

Watching it with interest

Watching- really interesting stuff. As DH said, most clinics will skim over the fine details and instead sell you false hope- we had a pitch from Care around the PGS testing which felt like we were buying a used car from a salesman.

We had embryo glue, embryoscope, intralipids, ICSI amongst other things pushed and nothing has worked so far !

We're the same. Every bloody test and treatment!

I didn't think it was very fair or balanced. Folks doing IVF rarely have time on their side so were they suggesting that all 'unproven' treatments should be withdrawn until all the evidence is in - which could be several years and therefore too late? I think it was incredibly intrusive being at the Fertility Show (the organisers promise no cameras). Also not all doctors are equal - we met Dr George Ndukwe but didn't go with his clinic or any other that specialised in immunology because it wasn't relevant to our specific issues (male factor). Patients need to do their own research when choosing doctors/consultants (privately), they are all so different and have different philosophies, and there are so many very new treatments out there. That's not to say that I think clinical trials shouldn't be done - I think they are definitely needed. But absence of proper evidence doesn't mean it's rubbish.

I agree with Blue, yes there isn't enough proof that some treatments work but if there is a chance some of these will help then it's worth a shot.

Let's face it, not every cancer patient gets cured with chemo yet you'd still give it all you had.

I think IVF and some of its add-ins work for a lit of ladies, but sadly some ladies won't get pregnant no matter how many attempts or add ons they have.

I completely disagree. Just because a treatment hasn't been shown to work it shouldn't be assumed it might have some benefit. For example back in the 70s and 80s antiarhythmics were used in treating heart attacks because the main cause of death from heart attack is an arrhythmia. Research then showed it caused many thousands of deaths. I understand our desperation and our rush to have it work for us but we should be expecting more from our fertility specialists. It's not good enough that they are not conducting the appropriate trials to ensure our chances are improved.

I don't think the programme was as balanced as it could have been. The 'story' was clearly meant to be 'rip off clinics selling desparate couples treatments which don't work'. The reality is a little more nuanced than that.

No evidence that the add ons work does not equate to evidence that they don't work. My take home from the programme is that there needs to be funding for good quality double blind trials so that clinics can stop relying on theory/speculation.

Should clinics be offering these add ons? In my view, yes. I do agree that information about the (lack of) evidence needs to be made clearer, albeit that many people do huge amounts of reading themselves. I'd tapped up my scientist sister to get me all the publications available about ivf and add ons.

I thought it was interesting that the programme didn't even mention the treatment which there's some evidence for (endometrial scratch). I've had 6 rounds of IVF, the last of which included the scratch and was successful. The first clinic I used didn't offer the scratch. It now does (presumably after the evidence improved). I didn't feel like I had time to wait for the evidence and was happy/could afford to try everything, no matter how light the evidence. I now think that intralipids were probably a waste of money but they did no harm.

I wonder when the CEBM in Oxford will publish their review? Would be interesting to read. The scratch was reviewed in a systematic review last year I think. Hopefully the new trial will add more certainty to it.

It's a tough one, do you really think the intralipids were useless?
I've had 3 failed IVF attempts and now just had immune testing and came back with high NK cells, auto body issues & sticky blood. So I'm about to have 2 intralipids then get retested.
I'm in 2 minds now!

Mebee it's impossible to know without the research! I thought the arguments the Prof expert in NK cells was interesting though - I'd read the same criticisms previously.

After I got pg the recommendation from my clinic (Care) was to have a further dose but I didn't bother as I wasn't totally convinced. They didn't push it at all.

I'm having another round soon at the first clinic (closer to home). Even if they offered intralipids I don't think I'd bother, but I'm not as desparate now I have a child.

If the unproven add ons mean you spend so much you can't afford a further round then I wouldn't bother. I could afford to throw everything at it and keep going so it was an easy decision for me.

I did find her interesting especially when she said there's no comparison between the blood showing NK cells in your arm to what's going on in your uterus.

It's such a hard emotional decision. In saying that I do trust my consultant at Care and don't believe she would try and suggest anything she honestly didn't think was worthwhile.

Yep, until the research is done we are left with anecdotes and just giving things a go.Wouldn't it be amazing if the research was definitive and they could say "x and y" are your problems so this treatment regime is best for you". Instead we have really tough decisions...

I thought it was a programme that would make sense to people who hadn't been through it, but if you have there is more nuance to it all as someone else has said. I did think it was a bit mean to secretly film Dr George as though he was the only doctor promoting immune treatments. Although I thought he tripped himself up a bit by offering them intralipids before she'd had the blood tests, as they may have shown IViG or steroids to be a more effective treatment for her if she was shown to have elevated levels. I thought the NHS used NK tests in recurrent miscarriage clinics.

The problem with a lot of these is that people don't want to enter into clinical trials so there simply isn't the evidence available and most interventions are based on empirical evidence

They say PGS has no evidence in favour of it - which I can believe, because the Cochrane evidence is based on 10 years of FISH data. And FISH was crap compared to NGS. But regardless of the data, without PGS, we would have been throwing embryos into my uterus without knowing if the problem was the seed or the soil.

My four frozen embryos were ALL PGS abnormal. Statistically at least one of them should have been normal. We could have done 4 failed FET / more miscarriages and we wouldn't have known which cycles we had fixed the uterine environment (my first miscarriage was of a chromosomally normal embryo) but the embryo was a dud. Or whether the embryo was normal but the problem was me. Or both

We saved ourselves 4 cycles that were always doomed to failure by doing PGS - for which there is no evidence, but I wasn't prepared to be a guinea pig.

We know I have now miscarried two chromosomally normal embryos and that the problem is me. Which we wouldn't know without PGS. Which means diagnostically we can draw a line in the sand. If we can't fix the uterine environment then we know I won't be able to support a pregnancy

Embryo grading is just a beauty contest. It doesn't say anything about the genetic integrity of the embryo. PGS may be unproven but I can't see the alternative would have offered us any benefits whatsoever

wild the NHS doesn't believe in immunes. Prof Quenby and Brosens are the only NHS clinic researching nk cells and Quenby said in a guardian article about intralipids that there's no funding for research so the data will never be there in any case

I think Shehata does what he can on NHS but without NICE guidance few Drs will prescribe empirically with discretion

The BBC world service did a piece on this debate, featuring interviews with a number of women, including my amazing friend Johanna - from 31 mins onward www.bbc.co.uk/programmes/p04h44y6

Meant to record this. Wil look on iplayer

I'm on the fence

Yes good to try things as would always wonder what if ....

Clinic 1 - where had 1&2 ivf . I've had glue in 2nd cycle where had 3 embryos put back

All 3 failed

That clinic didn't offer scratch or pgs -nor did I know about it - tho seems they only offer if older mum - failed ivf - mc etc

2nd clinic where did 345 said they didn't believe in scratch but if I wanted one that was fine and tested all embryos with pigs and all fine so used one for cycle 3 and froze rest

Then fet 4&5 and 5th worked and now 23w preg tomorrow

Money is an issue. If private you want to try anything that the clinic says that may help as then will always wonder what if ....but weird how diff clinics suggest /offer treatments

If you do have ‘high natural killer cells’ I think the first thing you should do is take plenty of fish oils.

These are the best ones as they are from wild salmon:

www.solgar.com/SolgarProducts/Wild-Alaskan-Full-Spectrum-Omega-Softgels.htm

Studies have shown that fish oils can reduce NK cell activity by 48%

www.ncbi.nlm.nih.gov/pubmed/11237929

I wouldn't have children if it wasn't for one of the drs they went undercover to film in that programme.
It made me a bit cross.

What bothers me is that we the customer are essentially paying for the research rather than the company that may profit from what ever it is they are selling us. Seems incredibly unethical.

Zippy, I agree.

And it bothers me that often the add-ons are treated as just part of the treatment with no real discussion. My embryologists told me over the phone "we are going to do assisted hatching. It is safe." I had to consent as I was paying, but there wasn't any discussion about the fact that there's no real evidence it improves outcomes or any potential downside. I don't really think that is good enough. Yes, in most cases most women will consent, but there is a conversation to be had. In fact, I was surprised to see this described as an "add on" when I thought it was medically needed.

The difficulty of course is that we put so much trust (hopes, dreams, money) in the hands of people who are used to having desperate patients who will do virtually anything..

So true polly and I would love to know the profits and salarys of these places, are they happily cashing in on our vulnerability? For ridiculously poor and unexplained odds? I was shocked to see the cost of Intralipids on the program. The Intralipids themselves are very cheap and sticking someone on a drip is not expensive. The cost is ridiculous.