Does anyone have experience of being denied funding for IVF but appealing to their local PCT?

I would be interested to hear if anyone has appealed and then been allowed access to funding.

Thanks in advance. :)

I cant comment on your question but used to sell infertility treatment as part of my job.
Often private units will provide treatment free including the required drugs if the lady is willing to be an egg donor in return for a patient who cannot produce eggs. The eggs are collected at the same time as your own just fertilised and implanted elsewhere. It obviously needs a lot of thought but can mean no waiting time and access to top treatment at no cost. It also allows another family in a similar situation to achieve their dream too

I considered that but as the rules have changed it is no longer anonymous. I like the idea of helping someone that is going through the same thing as me but I hate the idea of a child turning up in 18 years time that would be biologically mine but not my husbands and impacting on our life.

If it was still anonymous it would definately be something I would do but unfortunately not under the current rules.

That's a shame as it can be a great option for those who choose it but I can understand your feelings.
I wish you every luck with your treatment and hope your PCT accept your appeal.
Often the consultants can offer good advice re ways around things so always worth keeping them up to date with where you are in the process.
It's also good to be aware of local age limits your PCT place as sometimes people can be accepted then go over age range before their treatment. Good Luck

i thought that you were given at least one go free of charge is that no longer the case?

I'm well within age range (I'm only 24).

The only reason we have been denied funding is because my husband (who is 33) has children from a previous relationship - I don't have any children and have never been pregnant. I find it so unfair that I can't have the treatment because my husband already has children but if I'd married a man that didn't have any then I would be entitled to it!!

>>i thought that you were given at least one go free of charge is that no longer the case?

It depends entirely on where you're from. We are under Leeds PCT, if we were under York or South East of England I would be entitled to treatment and I could have 3 goes, Leeds PCT only offers 1 go but neither party must have had children previously. Some PCTs will only offer treatment to women over 30 but below 30 something, some PCTs will offer treatment to couples that have children on the paternal side but not on the maternal side and some PCTs will offer it even if both parties or just the maternal side have children. It's all wrong in my opinion. I know some people don't think that any IVF should be paid for by NHS but infertility is still a medical condition and it may not be life threatening but it is certainly threatening to my mental wellbeing (she says as she sits in a dark room banging her head against the wall)!! LOL!

oh honey,dont give up,keep fighting.My sister in law tried for years to get pregnant,she managed it once but sadly lost it at 11 weeks.This year she got the doctor to give her help.It was a type of ivf,she injected at home to stimulate the eggs then at the right time goes to hospital and has hubby sperm put inside.She was allocated 5 goes for free and she is 39 years old.On her second attempt it worked.she was having quads,sadly one absorbed,another was put to sleep as because of her age it was too risky,but i am so happy to say she is now 27 weeks pregnant with twins,
dreams can come true,keep fighting
jo

Oh that's nice to hear. Sounds like she had IUI rather than IVF which is a lot cheaper so NHS are more likely to pay for that. I need true IVF which is much more expensive, hence they are not as happy to pay for it!!

I can't offer any advice I'm afraid, but wanted to wish you luck and hope you get your dream.  It's so unfair that if you lived in a different area you would qualify.

I can sympathise, we started trying for a family many years ago and were told that it wasn't to be. IVF wasn't free but we were offered it. Luckily, we both agreed that it wasn't the route we wanted to take and decided it would always be the two of us. I personally don't think it should be free - and I appreciate this view is probably unpopular. I feel that if people can't afford to pay for it then perhaps they can't really afford, at that particular time, to raise a child.
The one thing I believe the NHS should do (and you did mention this is in a way, although lightheartedly), and that is to help people mentally with their infertility. The day I was told that it was the only option was the day the hospital sent me away with no hope, and it felt at the time, no future. I left that room on my own and can only describe my feelings as ones of grief. At the time I was so incredibly upset, felt my world had ended and had absolutely nowhere to turn for help. We both dealt with it in our own way and it was so hard and so awful. I just wish the hospital had given us help coping with infertility rather than just seeing it as a money making scheme (which it really did feel like).
That was 17 years ago, and the early days were hard but we got through. It seemed unfair then, occasionally now I feel we were dealt a raw deal but life is like that. I do still get angry when I see these teenagers having babies so easily and so many of them unwanted - sometimes life is unfair.

I'm not trying to be horrible, and if IVF is what you really want then I hope you are able to have it, and that one day soon you are able to hold that baby in your arms.
If however it isn't to be, then I just want you to know that with time your life will be happy again. It doesn't have to be the end (although sometimes it might feel like it). It's hard work to get there but just being the two of you really is ok.
Good luck.

lovely reply arched,had me in tears, i was thinking,maybe if it did not work out for the poster,what about adoption or foster care.i know of people who have children with downs who live with them,it is the most rewarding thing they had ever done,just a thought,
i have to say though,i do feel it should be free on the nhs,i conceived naturally,i am poor but my kids dont go without and my partner works full time, we struggle with the morgage etc but it makes us closer,as long as we are all warm and fed etc,designer stuff and expencive toys dont matter,when i am qualified at college i will be able to buy better things for them,i also feel that if you wait for the right time,them you will never have them.Why should people have breasts enlarged or decreased on the nhs but not a baby they long for
jo

Arched, as you said, life can be so unfair.  I'm glad you and your husband made it through being the two of you, I can't imagine it was an easy ride.

Have you considered asking Look North to do a feature on postcode lottery prescribing which is meant to be a thing of the past? It may or may not help but news coverage and involvement of NICE may help. What about a letter to the health minister?

I wrote to my local MP who forwarded a letter to the Health Minister. I got a nice letter back but it basically just explained the guidelines which I knew already!

I have a letter from the previous local MP from Sept last year explaining that the rules would be changed from April this year meaning I would be entitled to funding but this never happened. I have just written to the new MP with my original email to the previous MP and his response and asked for his comments and also a letter of support that I can forward to NHS Leeds to form part of my appeal.

I suppose I will just have to wait and see.

I'm not sure I like the idea of being on Look North!!!

Arched, thank you for your good luck wishes although I do feel one of your comments is extremely unfair.

>>I feel that if people can't afford to pay for it then perhaps they can't really afford, at that particular time, to raise a child.

How many people could honestly say that they have £4000 - £6000 in the bank when the become pregnant? Even if they do, surely that would be better spent on things for the baby rather than medical treatment?

I could afford to pay for the treatment if I saved up, and the fact is I would probably have my treatment quicker if I was to go private as I wouldn't be stuck at the bottom of a waiting list but my point of view is why should I when I could have it for free if I'd fallen in love with and married a different man?

i agree lucymissy,i understand it from every ones point but i have never had that money in the bank,children are a blank canvas,they dont know what is and is not expensive,clothes are cheap in supermarkets,and milk is free if you breast feed,they dont cost a fortune to bring up,you get used to saving, at the mo i am saving for my daughters third birthday next month,she wants a dora scooter and peppe pig cake so i put a bit away each week,
if you wait to you have alot of cash you more than likely wont ever do it and as the old saying goes   the more you have the more you want,like my sisiter in law who is having twins,she is worried about cash,but then for years and years they have had a joint income of over 40000 and gone on fab hols,fab clothes,food and wine,they have tons in the bank but are still worried,where as i have nothing and dont worry,my kids still have good healthy home cooked food,lovely presents for birthdays and xmas,the odd treat toys,clothes when needed etc,as for theme parks,i would rather go to the park with the dog and kids and a pic nic and ice cream,much more fun and free
keep ypur chin up and go on fighting
jo

Lucymissy, as I said, I know it's not a popular comment, but I was being honest and it's just my personal thoughts on it - I certainly didn't want to offend you. You are lucky that time is on your side, you are still very young and the system could easily change. Maybe saving for at least one private treatment would work for you - it's worth a try while you wait. I was quite a lot older than you, we didn't marry until I was 30. I would have given up everything I had to have a baby, I just didn't, and still don't, feel happy with IVF. It wasn't such a successful treatment at the time we looked into it so decided to let nature take it's course. Nowadays it appears far more successful although I'm sure it's still quite distressing at times.
Like you, I could have fallen in love and married a different man - as it was I love one who it turned out couldn't have children. Would I have married him if I'd known before ?. Yes I would.

My very best wishes to you, I'm sure you'll be fine and there will be a bouncing happy event for you one day soon !.

> How many people could honestly say that they have £4000 - £6000 in the bank when the become pregnant

Too true, most people get caught and not planned.

I was told it would be excess of £10,000 15 years ago.  We never managed to go ahead with it.  I had a bad experience always being fobbed off and the gate posts moved.  i even had procedures cancelled and sat in a closet being told I wouldn't be having it.  I did have some joy off my PCT, they were very understanding and there was nothing to stop me except maybe something the hopsital had done.

Have you tried Clomid, that can be successful before IVF, beware can produce multipules.

Good luck and don't give up.  Maybe look for a PCT that offers what you want and one of you move there on a temp basis.  If you approach the private clinics, sometimes they have donations or payment schemes that might help you.

I thought about the egg doner scheme but didn't like the thought of 'my flesh and blood' being unknown to me, silly I know and in the back of my mind, their's might work and mine not.  Very selfish i know but when you have this experience your heads in a very strange place.

>>Have you tried Clomid, that can be successful before IVF

My problem is with my Fallopian Tubes so IVF really is my only option. Hubby is super sperm and my ovaries and uterus are perfect (so doc says) we just can't get the sperm and the egg together!!!

Hi There, didn't want to read and run as I am just back from holiday and shattered....

I have been in your shoes and it is very unlikely they will change their mind.... fair.. no, but it is very unusual for them to change the rules...

Have you tried going throught the PALS department of your local hospital and asking the hospital to appeal to the PCT on your behalf ? Just a thought...

If you need any further help, or just feel like having a rant to someone who knows how you feel, please PM me....

(((Hugs))) Gabrielle xx

First of all have a hug, this is a terrible position to be in. :-(
I would say, under the current government, funding will decline rather than increase particularly in cases where one or both partners already have children, the priority, inevitably will be for those who have no children at all. Whilst that may seem unfair, that is the nature of fertility problems.

A word of caution. It is easy to get caught up in the fight for and desire for a child understandably. IVF though is NOT an easy procedure, it is a long, hard procedure, both emotionally and for the potential mum, physically. IT can leave your body shattered. You are young and there is still hope I would imagine, if your partner has 'super sperm' and the environment is correct for the embryo. Give it time and relax. Easier said than done I know. Just don't chase IVF as a cure all...there are many,many people out there for whom it has failed (and not just once or twice.) IT can and does fail, even for young people :-( IT does also work...and bring a great deal of joy, but there is no guarantee.

Sorry to be so down on it. It is an amazing procedure, but it is one that can also leave you childless with your body and emotions wrecked. Think VERY carefully before you pursue it x

My older half sister, as a 10 year old child in Poland,a nd they removed her tube and ovary one side!.  They told her she would never have children and at 17 she had an unplanned pregnancy resulting in my niece.

When she married they tried for years to have another child, and nothing.  Tests showed she had a blocked/narrowed fallopian tube due to PID

She underwent a procedure to have tit unblocked/widened and fell pregnant very quickly, but monitoring showed the pregnancy was ectopic.  they were able to remove it and save the tube,a nd within a short time she fell pregnant with my younger niece (born 14 years after the first).

Just wondered if the tubes were the issue if they could not do something about them like this.  My sister lived in Germany at the time and it was over 20 years ago, so I would have though microsurgery techniques would have advanced by now.

> A word of caution. It is easy to get caught up in the fight for and desire for a child understandably. IVF though is NOT an easy procedure, it is a long, hard procedure, both emotionally and for the potential mum, physically

Totally agree.  i let it rule me for years, thinking about how to achieve it or what i didn't have (a child).  now Although i know I'll never see grandchilderen ect i don't think I'm missing it now, maybe I'm on the kids have left home stage (lol).  i spent many wasted years wondering and interfering in my life, if i can pass anything on try not to let this happen.  Life can still be fulfilling without and you do turn a corner.

i'm sure as the previous poster said they can do things for tubes now so all is not lost.  Could you live in Germany for a few months if only available there.  Hopefully you'll get through it and not let life pass you by.

Adoption is always a good option if a baby is needed to fulfil you.  I did look into this from Russia as it breaks my heart when you see how some of them live.  Good luck and keep us posted.