Posts Tagged ‘fertility support’

Last night I attended a meeting organised by the Progressive Educational trust regarding egg donation and payment .This is a huge topic and last night was certainly a good part of the jigsaw puzzle .

I have written some notes below but overall what I was left with was how important a debate this is and must be for all involved . I dont think there are easy answers but I certainly think Egg sharing , if handled well is possibly the best option we have .

We need more information and education given to would be Donors and recepients and certainly more emotional support not just short term but long term .

Again to my mind organisations like the D.C network here play such a crucial role in supporting and resourcing people and should be praised for all they are doing in this area .

Let me know your thoughts .This is a topic here to stay ..

All best wishes

Anya

Notes from P.E.T evening 20th Oct 2010

“Paying Egg donors , a child at any price ?”

Sue Avery ( Director of Birmingham ACU )

A move from compensation means a move from “ donation “ to “ transaction “

Is this necessarily bad ?

Does this begin a slippery slope of commodifying cells …embryos ..children and thus people ?

Whose choice is most important , the Donors or the recipients ?

Brian Lieberman ( Consultant at Manchester )

Has done a u turn in his thinking re egg sharing mainly due to the fear re lack of care when outsourcing the need for gametes abroad .

Importance of people knowing the risks involved on every level and thus the importance of good counseling especially re OHSS , reduction in chances of conceiving , and the concept of half siblings .

Should we allow a fee to be put on a waiting list

Ultimate danger is the recipients will be exploited and the Donors put at risk

Brenda Almond ( professor of Moral and social philosophy at Hull )

Is it ever right to sell human genetic material ?

Fear of financially vunerable people being exploited

What is the long term impact on a donor conceived child ?

Laura Witjens (  Chair of national Gamete trust )

A difficult debate with no right or wrong answers

Removal of anonymity seems to have not impacted numbers as feared

Suggestion of monetary “ appreciation and gesture “ rather than payment

Altruism should still be main drive and encouraged

Approx. £700 suggested as a fee to low to act as key incentive but big enough to acknowledge what has happened and the impact on this person .

Comments from the audience during Q and A

Importance of the children in all this . Not represented enough in the debate

Over the years the incentive for egg sharing amounts has greatly increased from a few hundred to a few thousand now .

Could some Donors actually be put off my finances being brought in at all ?

Desire to create a fixed fee not variable rates for Gametes

Importance of DC children being given a coherent story regarding their background . Coherent implying not just a payment issue but an emotional one primarily .

There is no evidence to show that long term , women who had’nt conceived after donating would experience unhelpful Psychological  effects . On the contrary they seem to feel that at least something positive had come out of that time

What would a child feel like if they knew they had been paid for ? All DC children interviewed by one person said they would rather finances not come into it .

newcastle research paper said that all women interviewed on Egg sharing scheme had thought of it as a mutually beneficial exchange

If Egg sharing taken away how would we replace the 40% that this makes up currently ?

We live in a suboptimal world and thus this is the best not the perfect option .

We are moving forward and hopefully thus attitudes changing

“ best possible option not the ideal “

What right does society have to tell a woman she CANT sell her eggs ?

need for better recruitment

Summary

Sue Avery

Danger of any lump sum . At the end of the process the Donor should be no worse off financially but better off emotionally

Brenda Almond

Long term it is the interests of DC children that is key

Brian Lieberman

Egg donors will get strength from going through the process even if it doesn’t work .Need to keep Altruism as key

Laura Witjens

need more funding for recruitment of Altruistic Donors

Raanan Gillon

Need for positive persuasion not cohersion

Two links in todays news re last night :

http://www.bbc.co.uk/news/health-11574782

http://www.guardian.co.uk/society/2010/oct/20/egg-donation-fertility-treatment-pay

Another day another IVF sensational news story …this time a mother of 70 whose young child sits beside her while she is dying , and a woman of 66 who has just had triplets .

Personally I do believe in setting some sort of upper age limit ( whilst allowing for flexibility ) but I am not sure 70 should be it !

There are so many potential health implications both for mother and child as well as sociological ones regarding children growing up for most of their lives without a parent .

As Fertility treatment becomes more and more advanced we must make sure we are keeping up with the ethical implications and questions that will be inevitably raised . We must be honest in saying that this is an emotive field of science on every level and that opinions will be both varied and passionately felt .

HOWEVER , and here it is , please please please can journalists stop jumping on the one or two extreme cases that are happening worldwide as though they show an overall trend . As though these cases are merely the start of an era of 90 yr old mothers and a waving goodbye to the family as we knew it .

These are the extremes , they are not the average story because the average story is too common and often just too sad to be noticed .

The stories of people desperate for a family and trying every form of treatment until finally on IVF number 7 getting pregnant

The stories of women told late twenties that they are entering an early menopause

The stories of couples trying every and any alternative medicine just to strike lucky with finding the ” right ” one

The stories I see on a daily basis and know first hand .

And within those can I also say that the number of women who have come to me because they have put their fertility on hold for some amazing career are absolutely and totally tiny . In fact hardly ever do I see these mythical women .

 Instead there is the discovery of a physical problem  or the fact that they didn’t find a life partner ( try as they might ! ) until late thirties .In other words stuff that life just threw at them rather than the choices of a spoilt and selfish generation .

But again , not sure those make as ” interesting ” a headline .

Maybe  the truth of Infertility is just too sad , too long-winded and ultimately just too normal to make the front pages .

But just once in a while wouldn’t it be nice for the whole picture to be shown ?

 

All best wishes

Anya

SO… here I am day 5 of my brand new role as Fertility support coordinator for the London Women’s clinic and its been an amazing few days on so many levels .

A bit of background needed though first in that this is a role I have been in negotiations regarding for quite some time and in many ways is a continuation of the work I have been doing from home .

 Except that I don’t have to empty the dishwasher here and don’t have a cat permanently trying to sit on my keyboard …

The clinic is a fantastic one and I have had many clients come here over the years and report back encouraging things .

I think as a clinic they really are trying to move away from people feeling like they are on a conveyor belt to  being really listened to and supported through treatment

( “ I am not a number “ I hear you cry !! ) .

 Which is where my role fits in as Fertility support coordinator .

I am here to see clients individually , to run a support group and set up new workshops on such issues as stress management and coping when treatment fails .

I am also here for people to just drop in on and let off a bit of steam . And steam there often is during treatment …

Basically it is a role I am chuffed to bits to be doing and one which I hope will make a  difference to patients welfare .

So thats the overview ..here are some of the highlights from these last few weeks ..

• Met a lovely young lady about to sign up as a donor because she had been moved by reading of the need for egg donors out there . What a fantastic thing to be doing , and what an inspirational route to be taking to help others

 

• Met up with the rest of the staff here and again amazed at the great work they are doing . From the receptionist who always makes an effort even at the busiest of times to the VERY hard working nurses  , these people really are making a difference .

 

• Managed to brave it into to the staff room ( felt about 12 yrs old !) to meet members of staff ..all very friendly and supportive and managed to regain composure enough to feel 36 again ..

 

• Written various pieces for the LWC  magazine

 

• Met several new patients in waiting room and office for quick chats all at various stages of treatment . Peoples stories and paths to parenthood never cease to move and inspire me . And to remind me that we are not alone in our fertility issues .

 

• Set up plans for a new support group here at the clinic to be started and launched in next few weeks …

 

• Had large physical battle with the tea machine in waiting area and WON …1-0 to me in the battle to make a decent cuppa …YESSS !

 

More than anything I have realised again the enormity of what people face when going through infertility . The daily sadness , mingled with hope , determination and resolve . And realised again the sheer number of people facing this issue .

There is such a lot of support out there . from places like the London Women’s clinic , to the Wonderful work of INUK ( www.theinfertilitynetworkuk.com ) , to the great people using Twitter to raise awareness and comprehension .

Though lonely and frustrating there is help and support to be found .

I hope to be a part of that help and look forward to what the next few months and years will bring .

All best wishes

Anya

Fertility support coordinator and champion of the Tea machine at the London Women’s clinic

I am currently spending a disproportionate amount of my waking life looking at images of Petri dishes from google images .

Not completely unusual for someone with my interests and in my line of work , but even for me  , sitting in Starbucks and looking at image after image of all things ( and I mean ALL things ! ) fertility related is taking it  a little too far I think …I am amazed I didnt get kicked out actually …

Anyway the reason for this new found hobby of mine is that we are in the final stages of putting together the book we have been working on over the last year or so entitled ” FERTILE THINKING ” .

It is an exciting process and one which is hurtling towards completion , hence the huge push to get the front cover right . And hear in lies my dilemma . And indeed not just mine but one many people involved in the world of A.R.T have had to deal with :

” ARE IMAGES OF BABIES HELPFUL OR UNHELPFUL ?”

For example many many clinics I know and respect choose actively to cover their walls with the success stories . Their literature has babies , their merchandise have babies , it is a very pro baby stance indeed !

And certainly there are many positives to doing this . I remeber many times during treatment when reading a success story , or looking at the baby walls would be such an encouragment .

IT CAN WORK !!

This could be me next !

More exclamation marks !

I remember especially a programme on the Discovery channel following IVF stories which became my absolute must see TV ( though my husband never could quite understand why a hard day at the clinic should be followed by watching someone eles hard day at the clinic …! )

Babies and all things related was at times a real source of hope .

HOWEVER …You knew it was coming .. equally there were days when I just couldnt bear to see anything to do with babies or pregnancy . I would walk out of rooms , cross streets and avoid looking at anyone even remotely knocked up .

One particular day I remember walking into a room of 5 friends , two of whom I didnt realise would be there , and came attatched to newborns . Needless to say I stayed for a very short amount of time and then pro actively went and sat in the car and screamed …it helped .

It was always such a double edged sword .

And yet that is the experience of anyone going through Infertility in general .

Bloomin double edged  ,Bloomin sword .

Not an easy one at all .

Remaining hopeful positive and realistic whilst remaining cautious , scared and realistic..

To look at the baby or not .

Possibly both then .

And so I am left with the decision re the cover , and the indecision re how to best get the book out there and hopefuly being of use to as many people as possible .

Watch this space .

Now ..back to those images of Petri dishes …

Best wishes

Anya

I ran the central London fertility support group last night and was left again realising the huge strength that there is in numbers .

We had around 16 people come , some new faces some old ( not literally ..they were actually a very attractive bunch ! ) all at various stages of the Infertility journey .

We shared frustrations , tears , anger , confusion and wonderfully there was actually quite  a bit of laughter . And I think most people left feeling so much stronger and better equipped for the next stage .

During my own battle with Infertility I found strength and support in a variety of places . Some obvious ones like the wonderful INUK ( www.infertilitynetworkuk.com ) and ACEBABES . Some more serendipitous ones like the email friend I made at the national infertility day .

But I made sure I was supported .

Most recently I have made a very dear friend who has been through such a lot herself and works as a counsellor for fertility issues , Julia Bueno (www.juliabueno.co.uk ) who I only wish I had known  a few years back .

There were certainly times when people said the most amazingly crass and insensitive things ( ” Can you please just cheer up now , so we can all be happy again ..”) But actually there were some hugely moving moments of care too .

For example the friend who just turned up one day with chocolates and magazines , or the many many prayers that people said when we had run out of faith ourselves . These moments of support were like Gold to us and still mean an incredible amount .

It was that same feeling last night at the group that was jut so tangible . People with more than enough on their plates actually bothering to not only listen but to swap ideas , and tips and genuine hope for positive outcomes .

The strange thing with Infertility , as with many many life challenges is that it brings to the surface not just the difficult stuff , but also the moments of genuine goodness . When we notice that we are not alone and that people can REALLY care for us and our situation .

Thankyou again to the central London Support group for helping me realise this anew .

Best Wishes

Anya

When my daughter was only a few weeks old we began to attend an NCT class full of mums and babies all coming to terms with being a new mum .

For me however the transition was an even harder one coming after IVF and being told countless times that this would never happen for us . I felt in many ways that I was a ” pretend ” mum . And still found myself hanging onto the label of Infertility patient .

It was during one of those meetings that a new mum walked in and I recognised something in her facial reaction , something in her emotions that was later confirmed. She too was an IVF mum .

But for her in some ways it was even harder for she was in her late fourties when she had had her son through egg  donation . She had already started to get the comments about her “grandson” , and then the shock from some people on finding out he was actually hers .

The thing that struck me about Billy , and indeed hits me time and time again with children following treatment is just how unbelievably  self assured they are right from the start . Its as if ( nature / nurture who knows ..!) They just realise that they are MEANT .

Watching the BBC programme last night about older mothers and reading the newspapers  I again realise how emotive a topic this is . But then arent most things in the world of a.r.t ?! How strongly people with no experience of such an issue seem to feel .

But surely this is a huge grey area rather than a black and white ?

Certainly at the moment even the HFEA seems quite vague about how to decide what is and isnt too old . NHS IVF only goes up to late thirties , and the only other concern is that all clinics place the welfare of the child firmly into the equation when deciding whether to allow an individual to go ahead with treatment . Again leaving an awful lot of room for grey areas …

So how do we decide ? By what criteria ? I look around at dear friends of mine who as of yet at the ” ripe old age ” of mid /late thirties have yet to meet mr Right , or are in a second significant relationship ..or for many other valid reasons have yet to start trying for a family .

If they hit problems in only a few years time at 39 their elligability for NHS treatment will be gone and they will be forced into the private sector . This is far more complicated than just a generation of so called ” career women “, this is life in 2010 .

Thus to me I would say that at the very least the NHS  Criteria should be increased to mid fourties , at the least .

But then how to determine what the cut off age should be ? Several people in the papers today are calling for parliament too intervene and set guidelines . The majority of whom I bet you have not been through the heartache of Infertility .

I remain undecided as to what I would do , other than having it increased at least to mid fourties . But Perhaps then that is the answer . That there is no easy solution , just a lot of individuals and individual cases out there , who find themselves still desperate for a child past the age that even they would have desired .

When I read the antagonistic comments and judgements poured out regarding this topic the one image I am left with is my friends child , Billy . Full to the brim with life and enthusiasm , loved to bits and ready to take on the world . Surely the welfare of the child for him has been met .And met with flying colours .

BEST WISHES

Anya

Christmas to me is such a mixed time of the year and in many ways always has been . There is so much I love about it and yet there is such pressure and striving for perfection . So much to be thankful for , and yet if there is any sadness Christmas seems to only amplify this .

Going through Infertility at Christmas also will be for many , at best a mixed experience , at worst a truly difficult time of year .

I can offer no easy solutions but here are some thoughts as to how to survive this Christmas ..

1) Realise that it is completely normal and understandable that this Christmas may be a challenge .You are not being a scrooge , just a normal person with normal feelings !

2) Remember that you are not alone . Thousands of people in this country will find this season with all its emphasis on family to be pretty tough going . Also remember that other people may also be findng it tough for other reasons . It is not true that every other family is enjoying a “perfect ” Christmas …honestly !

3)Be proactive and plan ahead . So many of the emotions around infertility are to do with a lack of control . Anything you can do , especially at this time of year to regain control is a useful thing .

So look ahead . Are there parties you feel you ought to go to and that may be difficult . Give yourself a break and if neccesary arrange to meet friends one to one .

Maybe do some of the shopping online so you dont get swamped by yet another Santa and thousands of children .

Think of what is coming up and cut yourself some slack !

4) Have a quick answer for all those friends /relatives who may ask questions about when you will be starting that family . you may feel like going into details with auntie Marge over the sherry but if not maybe a quick ” we are working on it ” , or ” I have a great team of people helping me on that one ..!” will suffice

5) Be extra generous to yourself this year . Realise that this is tough and give yourself the rewards you need to keep going . Be that an extra mince pie or a present for yourself .

6) Keep in mind it is only a few weeks of the year and then life goes back to normal in January ..

My hope for you all is that you find ways through this season and that there are moments to enjoy even in the midst of a difficult situation

very best wishes

Anya

Infertility is Tough . It hurts more than you can ever imagine , affects every area of your life and takes you on a journey that quite frankly you dont remember ever opting to start on .

(It is often in fact described as a rollercoaster , but surely there are moments of fun and elation a bit more frequently than on the rollercoaster of fertility treatment …!)

New research has indeed found that a person experiencing infertility faces an emotional stress point reading akin to Cancer or Bereavement .

It is NOT much fun .

My own journey through the maze , the path , the rollercoaster the …whatever other metaphor fits ..lasted over Six years , five rounds of IVF , thousands of pounds and odds of 1 in 125,000 of ever conceiving even with A.R.T . Excellent !

During that time I did everything I could to help myself from Acupuncture to eating Pine tree bark ( my husbands favourite moment I think ! ) .

But mostly I tried to do everything in my power to not let this thing win over my life . To not let Infertility define me .

Some days were easier than others . Some days I wanted to scream repeatedly that it wasnt fair .

Some days I DID scream repeatedly , and it WAS’NT fair !!

During this time I retrained as a life coach and began to notice just how helpful the training was for me personally . It felt like a breath of fresh air and allowed me to feel a little more in control , and a lot more like the old me .

And thats exactly what I am priveledged to do today . To sit with people ( or stand if they need to do  bit of pacing !) and acknowledge the crapness , the unfairness and the normalness of feeling this way . While working on ways to support to resource and  find ways to keep going .

As my tagline states Fertility coaching ultimately comes down to two things . finding ways to

regain control and restore hope .

Best of luck to you all

ANYA