Following Doctors advice results in treatment funding withdrawl

FBaby

Just stop delaying any further and start it all over again. They might agree to speed up the process in the light of the fact that you'd already started it last time.

To be fair, I agree with the poster who said that ultimately, it was your choice to delay going for it, so saying that you will now lower your chances due to age is more your doing than the doctor who led your to believe funding would always be in place.

I think that mentally and psychologically, you should concentrate on your next cycle especially if you will only have one funded as if you decide to fight it, you will only delay everything any way whilst the CCG investigates and you will be no further ahead.

I would also ask about going private as most CCG agree that you can still get one cycle on the NHS after one unsuccessful private cycle.

sexki11en

OP, I really feel for you and in your shoes, I would want to fight this tooth and nail too.

Give this website a look - they have people who will help you appeal decisions like this http://www.infertilitynetworkuk.com/

In the meantime, I really wouldn't delay any further - check out your PCT guidelines (these are published) and make sure 100% that going private won't affect future funding (it does in some PCT's) and whilst you appeal, I would strongly suggest going private in the meantime. As someone who was diagnosed with POF (premature ovarian failure) basically early menopause at 30, I would NEVER recommend anyone leaves something this important for any length of time.

Good luck.

SK x

DKLS

Good luck OP, its tough out there, my wife returned to work at the NHS yesterday after a lovely holiday to be told that they have to save another 8 million quid off the budget.

Out of interest what would the costs be in the Uk per cycle?

fed_up_and_stressed

LilElvis wrote: »

Nice to see how heartless people can be.

We all understand that the NHS has hard decisions to make but your post is extremely mean-spirited given that the op had been given funding for treatment which has only been withdrawn due to mistakes.

You couldn't afford to privately fund your treatment so what makes you think that the op can just magic up the money to fund theirs?

And don't even go there with the 'just adopt' comment as that does nothing but illustrate your total and complete lack of understanding of infertility.

Before you post about my lack of understanding of your condition I would just say that I lost my best friend to liver cancer and my Dad is due to have his rectum surgically removed after Easter, the removal and repair of one stoma, the insertion of a new one, lymph node removal and extensive plastic surgery - probably to be followed with a further round of chemo.

I would have hoped that someone who had been let down by the systems and guidelines which rule the NHS these days might have been more sympathetic to someone who had been placed in a similar position. Clearly I was wrong.

Easy to judge me when I was just offering options.

You have no idea you have just assumed I am "mean spirited" with no experience in infertility... Your assumptions are wrong.

I have plenty of experience in infertility, I have had multiple traumatic miscarriages and was not able to carry a child to term. I decided it wasn't meant to be but if I had have been desperate for a child I would have persued the adoption route.

Before you judge people suggest you open your mind to the fact others might just have a differing view point.

I also have dealings with council adoption procedures so this is why I suggested it.

Suggest in future you don't make assumptions that other people don't have such experiences before bad mouthing them.

FrustratedRegular

FBaby wrote: »

To be fair, I agree with the poster who said that ultimately, it was your choice to delay going for it

No it was the consultant that said we had to delay 12 months when/if the treatment on me worked to "try naturally" despite my wife having long term infertility issues inc with her ex.

We argued it with him and the consultant who was overseeing the IVF itself but he just backed up the other consultant. At the end of the day we did what they said.

Whilst we chose to delay longer than the total 2 years that they wanted (~12 months for treatment and further ~12 months trying naturally) that was with their approval. The CCG say that 12 months delay alone after my treatment was in breach of the terms and resulted in the funding being withdrawn - they said even me having to go for treatment may have breached the terms too.


We would consider adoption, even if we did get our own children from IVF. We both have several adopted kids in our family as infertility and early deaths appear common on both sides. We would like to try the "own" option first. Ideally we'd be exploring both avenues at the same time but you cannot do this.


Many thanks for the supportive words from others. As a small update, the hospital whilst initially sounding positive are now trying to throw red tape by asking for proof of meeting the rest of the terms of the funding through out the delay, namely the Mrs BMI pointing out that funding would have been invalidated if it ever went above 29.9 even though no treatment for her was planned/ progressing.

Now waiting for them to actually answer the issues raised rather than looking for other get out clauses.

FBaby

No it was the consultant that said we had to delay 12 months when/if the treatment on me worked to "try naturally" despite my wife having long term infertility issues inc with her ex.

But according to your post, when it was offered to you again, you delayed it again so your wife could finish her studies. Surely this was her choice?

What is not clear from your posts is what was the cause of either or both of you meeting the criteria in the first place that led them to funding being agreed. Was any factor recognised with your wife that meant that you would have been eligible for funding or was it agreed on the basis of your low sperm count? If it was because of your low sperm count, it makes sense that funding would have been withdrawn when your count went back within the normal parameters. It then would be dependent on your wife condition as to whether you would still be elligible.

namely the Mrs BMI pointing out that funding would have been invalidated if it ever went above 29.9 even though no treatment for her was planned/ progressing.

It is at the time of treatment that the BMI matters, not at the time of funding because evidence shows that women with higher BMI are less likely to conceive, so he was right to say that funding would have been invalidated on this basis.

LilElvis

fed_up_and_stressed wrote: »

Easy to judge me when I was just offering options.

You have no idea you have just assumed I am "mean spirited" with no experience in infertility... Your assumptions are wrong.

I have plenty of experience in infertility, I have had multiple traumatic miscarriages and was not able to carry a child to term. I decided it wasn't meant to be but if I had have been desperate for a child I would have persued the adoption route.

Before you judge people suggest you open your mind to the fact others might just have a differing view point.

I also have dealings with council adoption procedures so this is why I suggested it.

Suggest in future you don't make assumptions that other people don't have such experiences before bad mouthing them.

I will say sorry, but only that you have had to suffer the pain of miscarriage (as have I).

I stand by my comments about your lack of empathy with the op's situation and the crassness of your comments to either pay privately for treatment or to adopt. How would you have felt if, after your first miscarriage, someone had turned round to you and said "well, it wasn't like you lost a child, and anyway you can always adopt"? You probably would have wanted to punch them on the nose for their lack of sensitivity. Would you/ have you posted comments on the 'trying to conceive' thread suggesting paying privately for treatment or adopting? What response do you think it would/ did elicit?

Your comments were, at the very least, thoughtless and were not germane at all to the op's initial question about getting their funding reinstated. A man who is already feeling down didn't need you to give him a further kick. Most people can't just magic up the odd £5k+ to pay for privately funded treatment and the decision to adopt, though often a path chosen by those with fertility issues, is one made after a lengthy period of reflection and often after many rounds of failed treatment. An option you chose not to take yourself. The op wants to pursue treatment so your suggestion was wholly inappropriate.

I will therefore revise my description to say that you are incredibly thoughtless, despite the fact that your own situation should have meant that you had empathy with the op both regarding treatment funding and the pain of infertility.

LilElvis

FBaby wrote: »

But according to your post, when it was offered to you again, you delayed it again so your wife could finish her studies. Surely this was her choice?

What is not clear from your posts is what was the cause of either or both of you meeting the criteria in the first place that led them to funding being agreed. Was any factor recognised with your wife that meant that you would have been eligible for funding or was it agreed on the basis of your low sperm count? If it was because of your low sperm count, it makes sense that funding would have been withdrawn when your count went back within the normal parameters. It then would be dependent on your wife condition as to whether you would still be elligible.



It is at the time of treatment that the BMI matters, not at the time of funding because evidence shows that women with higher BMI are less likely to conceive, so he was right to say that funding would have been invalidated on this basis.

He did state in one of his earlier posts that his wife suffers from PCOS and my reading was that they were granted funding based on her diagnosis and that his sperm issues were discovered subsequently. She had already undertaken unsuccessful treatment with a previous partner - probably Clomid - and her condition is not one which can be 'cured' so the eligibility for treatment should still be there.

FBaby

I didn't read that so may be confused didn't think the initial approval was on the basis of her suffering from pcos. Pcos alone would not be a reason for eligibility unless it led to a complete lack of ovulation even with stimulation. Not conceiving for a number of years would but that would be within the relationship not previous.

The reality is that the ccg/pct won't have done anything wrong so the only Trust to complain to is the hospital but they will struggle to prove that they were given wrong information that led to funding being withdrawn. Even if it was still available they would still have to have tests done again and would be back at the start of waiting list so timewise it wouldn't make that much of a difference. Might as well start it again gain sympathy to try to avoid further avoidable delays and consist a complaint against the consultant if funding is denied this time.

grey_lady

I'm shocked that the OP didn't tell his wife/partner straight away.