You are not logged in.


Unread posts

Dear visitor, welcome to FertilityZone . If this is your first visit here, please read the Help. It explains in detail how this page works. To use all features of this page, you should consider registering. Please use the registration form, to register here or read more information about the registration process. If you are already registered, please login here.

  • "Suzy Q" started this thread

Posts: 671

Reg: Jul 30th 2006

Location: London

  • Send private message

1

Friday, June 22nd 2007, 8:36am

Multiple birth patient consultation meeting

I'm off to the single embryo transfer public meeting tomorrow, I've got everyones thoughts from previous posts but if there's anything anybody would like to add that I can take along that could add to the discussion please do let me know.

It's on in London, I'm not sure if there are places still available but if anyone wants firther info please contact Jo Heptinstall-Bolton on 020 7291 8235 or jo.heptinstall-bolton@hfea.gov.uk or e-mail Juliet.Tizzard@hfea.gov.uk

Hopefully there wont be too much doom and gloom / twin bashing (who am I trying to kid :() - my little ones will be kicking with indignation if there is! :box:

Also a gentle reminder, the deadline for feeding back your thoughts on single embryo transfer directly to the HFEA is looming - 4th July. If you haven't already done so please go to http://www.hfea.gov.uk/multiplebirths and click on the how to respond link for further info. Don't let our voices go unheard!

Many thanks.

mrs_smiff

Superstar

Posts: 5,387

Reg: Jan 10th 2007

Location: Somerset

Children: 5 kids aged 21,18,14,13 and a little miracle born April 09

  • Send private message

2

Friday, June 22nd 2007, 9:41am

Hi Suzy,

All the best for the meeting. Go there and kick some HFEA ass for us!!

  • "Suzy Q" started this thread

Posts: 671

Reg: Jul 30th 2006

Location: London

  • Send private message

3

Friday, June 22nd 2007, 5:49pm

Thanks, will do, will feed back sometime over the weekend!

  • "Suzy Q" started this thread

Posts: 671

Reg: Jul 30th 2006

Location: London

  • Send private message

4

Monday, June 25th 2007, 1:34pm

Well I survived the meeting! It was much smaller than I expected it to be. There were about 30 people there, only 7 or 8 who were patients (10 including partners). Shirley Harrison, the chair of the HFEA was there (she seemed quite lovely) along with a number of (equally pleasant) HFEA staff and clinicians from different clinics. There were a couple of presentations that basically went over the consultation document and the rational for single embryo transfer then we split into two groups to discuss what we felt were the obstacles facing change and to discuss the four options for change that the HFEA are thinking about. There wasn’t an awful lot of time to discuss the issues and the discussion group too readily veared towards talking about all the problems around IVF so we didn’t get too into the nitty gritty of it which was a shame.

A lot of the points raised were the same as those discussed by Mrs Smiff so I wont go over those again but a couple of things to add/reitterate:

They are not proposing a blanket ban on two embryo transfers – they want to reduce the twin rate down to 10% and think they can do this by half of all patients receiving just one embryo.

The idea they seem to favor is for one embryo to be given to good prognosis patients, so your fertility problem, previous IVF history age, embryo quality etc will all be considered in the decision of whether one or two embryos should be put back.

Whatever they decide to do they intend to start implementing it by early 2008.

Although the meeting was poorly attended they have had over 700 responses to their online questionnaire which is brilliant.

These are the 4 options that the HFEA are thinking about:

Option A, HFEA to work with clinics, patients and professional bodies to increase awareness of risks of multiple births and to encourage increased use of single embryo transfer.

Option B, Set a maximum twin rate of no more than 10% that each clinic must not exceed, which could be phased in over a number of years.

Option C, Develop code of practice guidelines that defines in which cases only one embryo should be replaced, based on for example, age, number of previous treatment cycles, medical history and possibly embryo quality

Option D, A combination of options B and C above, IE clinics could initially be given an overall maximum twin birth rate. If they fail to achieve it, they have single embryo transfer criteria imposed on them by the HFEA.

I completed the online questionnaire this morning, some of things I’ve said were shaped by the meeting so I thought I’d post my response here as feedback but also to give food for thought to anyone thinking of responding:

Q: Who should make the decision as to whether to transfer one embryo or two and why?

A: The patient after thorough consultation with the clinician. The risk of longterm disability to twins is very low. Although this factor does not seem to be considered by the authorities, this has to be weighed up against the risk that the baby would not have been given the option of life at all if only one embryo was transferred. If the disability risks were high I would agree there is a place for the authorities / medical profession to intervene but they are not.
The risks to the mother and the family consequences of bringing up twins or losing a twin, should not be underestimated but the option of whether this risk should be taken should purely be down to the patient. Just because authorities can intervene, doesn’t mean that they should.

Q: What do you think of the four options:

A: Option 1: I would like to see clinics making more of an effort to make sure patients are fully informed of the potential implications of having a two embryo transfer. There should be compulsory literature which gives a balanced view of the risks (preferably published by the multiple births foundation rather than the HFEA) that patients read before embryo transfer and for auditing purposes there should be checklist on the HFEA consent form where the patient states they have read this literature and have had the opportunity to ask questions.

The other options are far too prescriptive and will disadvantage patients unfairly.

Option 2 takes no account of the different patient fertility demographics seen by different clinics. An NHS clinic who sees many patients who have had no previous IVF and therefore may be characterised as a good prognosis patient, is much more likely to be able to meet a target than a private clinic who sees predominantly poor prognosis patients who should be eligible for DET. This will lead to cherry picking of patients and poor prognosis patients being given SET when DET would be more suitable.

Option 3: I see two key problems with this option. Firstly, every patient is different and more often than not too complex to be pigeon holed by set criteria. As far as I am aware, other than age, there is insufficient hard evidence as to which groups of patients do best, based on all the factors that will be considered when creating criteria. This needs to be collected and analysed first before any criteria can be justly applied. You may well find that when criteria are applied only 10% of patients should be recommended SET by your own criteria - and this will not reduce twin rates to your target leve.. Secondly, splitting patients into groups who can and cannot have DET seems desperately unfair for individual patients. As a patient this says to me 'we're going to let you have a treatment with a 20% chance of success, if it doesn't work, after you've spent £10,000, put your body through 2 cycles and suffered this hell for another 8 months, then we'll offer you a treatment which will give you 30% chance of success, ok?' Similarly if some people can have DET but not others it tells patients whove been told that they can only have SET, that the authorities think it's ok for some people to risk having twins, just not them. How can this be justified?

Option 4: Definitely not for reasons described above.


Q: What are the barriers to SET

A: The lack and inconsistency of NHS funding for fertility treatments: This is key. If patients had their treatment funded, they would be far more ready to accept SET. The financial burden of private IVF is huge and any action taken which means more treatments are needed for a success to be reached will be resisted - particularly considering the actual risks are low and the fact that DET will still be allowed in many patients.

A desire for twin pregnancies by some patients: Unlike triplets, there's no getting away from the fact that twins are a fairly common natural phenomena. We all know people who are themselves twins or have twins. added to this, in general twins are celebrated as special. These factors together with the lack of evidence of high risk of long term disability in twins, and the years or pain and cost that infertile patients have been though to get one child, means quite understandably, for many patients having twins, is not necessarily a negative outcome.

Inconsistency or freezing protocols and problems with the availability of embryo freezing: Other countries have only managed to maintain comparable success rates when including a frozen embryo transfer. For a large number of patients there are no embryos left to freeze. Added to this some clinics will only freeze blastocytes and not 2 or 3 day embryos and more frequently than not there are no blastocytes left over to freeze. In these instances patients would have to go through 2 fresh cycles and the cost, risk and heartache that that brings in order to get comparable success rates to having DET.

The low success rates of IVF: Whilst the success rates in some clinics are double those in others there is obviously great room for improvement. If success rates were consistently more favourable across the board SET may be more palatable. The HFEA should perhaps concentrate its efforts on finding ways to bring the poor performers up to scratch / improving success rates overall and readdress the twin rates when this has been achieved.

Lack of control of twin rates from other forms of fertility treatment: According to the consultation document, as many twin babies are born following ovulation induction / IUI as are born following IVF. Whilst I appreciate that again this is outside the remit of the HFEA why should patients believe IVF twins pose a significant health problem that needs to be curbed when there are no moves to curtail numbers of twins from other fertility treatments?

You can respond up until 4th July through this online questionnaire:

http://multiplebirths.hfea.gov.uk/MultipleBirths/

Posts: 2,016

Reg: Oct 7th 2005

Location: staffordshire/shropshire border

Children: my fur baby shawnee and my beautiful daughter C born Dec 2010

  • Send private message

5

Monday, June 25th 2007, 5:56pm

thanks for updating us suzy

i will make sure i fill in that questionaire before the deadline

i really think that enforcing single embryo transfer is a bad idea

kski

Ace

Posts: 959

Reg: Mar 26th 2006

  • Send private message

6

Monday, June 25th 2007, 11:17pm

Hi

Thanks - If I wasn't smoring at the keyboard I would do this now zzzzzzzzzzzzz


Sorry - oops -


k




FERTILITYZONE



MEDHURST – PROUD HOSTS OF FERTILITYZONE