Add-ons - Please read

[DianeArnold]

Hi Everyone. We’re in the national press today, with Aileen quoted.

Aileen Feeney, chief executive of the Fertility Network charity, said: 'Knowing whether or not to include fertility add-ons is a very emotionally charged and financially difficult decision to make.

'Patients are often very vulnerable after years of trying to become parents – that's why it is crucial for fertility clinics to behave ethically and not offer false hope or upsell treatment add-ons.'

dailymail.co.uk/news/articl...

Fertility Network is a co-signatory to the HFEA’s consensus statement regarding fertility treatment add-ons, such as endometrial scratch, embryo glue or embryoscope. This consensus statement calls for greater transparency from fertility clinics on fertility treatment add-ons. One of the key principles of the consensus statement is that clinics should only offer treatment add-ons where more than one high quality study demonstrates a treatment add-on to be safe and effective. To make it easier to identify which add-ons have been shown to be effective, the HFEA has a traffic light rating system.

A treatment is red if there is no evidence to show that it is effective and safe.

An amber symbol means there is a small or conflicting body of evidence, which means further research is still required and the technique cannot be recommended for routine use.

A green symbol means there is more than one good quality randomised controlled trial which shows that the procedure is effective and safe.

Currently none of the treatment add-ons the HFEA has assessed have been rated green. This means that the HFEA doesn’t think any of these techniques should be used routinely.

The list of add-ons and their ratings is at hfea.gov.uk/treatments/expl...

Info from the HFEA is here.

hfea.gov.uk/about-us/news-a...

Key principles of the consensus statement are:

•Clinics should only offer treatment add-ons where more than one high quality study demonstrates a treatment add-on to be safe and effective.

•Clinics should stop offering the treatment add-on to patients if concerns are raised regarding safety or effectiveness.

•Patients must be clearly informed of the experimental nature of any treatment add-on which is offered, where there is no robust evidence of its safety and/or effectiveness

•Patients should not be charged extra to take part in a clinical trial.

According to the latest HFEA’s national fertility patient survey:

•For those that had treatment in the last two years, three quarters (74%) had at least one type of treatment add-on, similar to 71% of those in the past five years.

•The most commonly used treatment add-ons for those that used a fertility clinic in the past two years were clinical techniques, such as an endometrial scratch (27%), embryo glue (23%) or embryoscope (22%).

[Niki_B]

Good. Clinics should be telling patients, but guess it's all extra money in their pocket! I've seen that red amber and green system upon researching on my own. And my clinic confirmed there is no evidence any of it actually works. It's a shame more people dont know about this, seems most clinics keep it quiet and push it on patients giving them false hope...whilst taking their money. Sad 😞

[DianeArnold Partner Nurse Fertility Network UK in reply to Niki_B]

Well said nikib. Diane

[Niki_B]

I found this article recently regarding abnormal PGS tested embryo...that resulted in a healthy perfect baby. There are many more stories like it. I think it's right that PGS is rated Amber. Please delete if this is not allowed Diane x

thecut.com/2017/09/ivf-abno...

[Kari55]

I can only speak about my clinic but my consultant was always honest with me about add-ons. He advised against embryoscope and glue as apparently they don’t make much difference. We did IMSI which I believe we can thank for 8 blastocysts in this cycle comparing to 2 poor ones in a cycle without it. He did say to me that there is 5% of chance that PGS results can come back incorrect. He also did explain to me about the controversy of the NK cells tests. I’m happy that these add ons are available to me but I can also question things and decide myself whether to use them. The clinics have to be open minded so that treatments can be improved. The consultants usually have no idea how much all bits and pieces cost and I believe that their motivation is to get their patient pregnant. My clinic didn’t mind me sourcing out my drugs cheaper elsewhere and they even suggested a place to check.

The HFEA should improve the information about add ons on their website as many things aren’t even mentioned there. They should investigate better what clinics are doing.

In the end of the day, evidence behind add-ons is not going to be easy to collect and all decisions we make during the treatment are not easy. After a talk on One Show last night about this, my husband had his mother screaming on the phone at him that we have overpaid for our treatment when the couple on TV have only paid £8k! Nevermind that each couple is different. I hope that others have good experiences with consultants in their clinic and will speak out about this. X

[Hidden]

I am very pleased to read this article as it addresses a sensitive issue and ethics.

Thank you for HEFA link with add-ons rating.

I don't know whether clinics use add-ons paid by patients as a means of evaluating (informally collecting data) on how an add-on worked?

Often for a patient it is an indirect compulsion to say yes for add-ons suggested particularly in IVF/IUI, merely with a hope that "this one add-on may be the last missing key for success".

I don't know if these "add-on upsales behaviour" vary between NHS funded cycle and private cycle.

[Elynn]

Good info thanks

[Lizzielizzielizzie]

Bump