Non NHS funded fertility treatment- would funding help be useful?

[SZuber]

Hello all, I am looking into setting up a charity who will help funding fertility treatment for couples who have been declined funding through the NHS and their only holdback is now to pay for it privately! I just wanted to see if there are any women on here who have experienced this situation at all?

There will be millions of women!

Nhs funding is really limited and even if you are lucky enough to be approved it's just one round when it mostly takes 3....

I think you're question is very open!

And what about same sex families?!

How would the charity get the money? I can't see it being something that ordinary people will donate to. Do you have one big funder?

The charity would mainly rely on donations from the public gathered through fundraising activities. I think I just naivly believed that ordinary people would donate as well if they have the right information how their money would help. Same sex couples will be treated the same as any oyher couples when workinh with the charity.

I think this is an amazing idea, but in order to raise enough money fo this you will really need to put your all into it x

@LexieLulu thank you! The one thing which really is difficult is that the cost of treatment is so high, Ive been organising fundraising events for years and say if we mange to rasie £120.000 which is high for a local event, it would probably “only”help 10-15 families depending on what their need is,, so its not so high, but I thought its better than nothing.
There are so many amazing charities who support families witj fertility issues, but so far I havent found any who will offer to help with the financial burden. Once I am doing it, this will be my lifes work and Ill put everything into it I have and just hope that people will help and donate!

"Only"...! It's fantastic.

Plus there could be a full cycle from this, children brought into the world thanks to the ivf funded, can then help raise money for future children.

Yes you are totally totally right! That would be a wonderful thing.

Think about whether you'd want to include single women, too!

If this ends up getting set up please update this thread and let us know.

I would love to do some sort of fundraising in the hope it raises money for a person to have a baby.

(My best friend has been told she will need IVF to have a baby, I have been lucky to conceive naturally but it is still a cause I would love to help)

I wish you all the best with this but I think it'll be a hard sell. You are 'competing' with charities looking at disease, poverty etc - surveys generally suggest that a significant chunk of the UK population don't even think the NHS should fund IVF and I just wonder how many people will give. I have to say that I wouldn't. how would you choose who gets the money, also?
very best of luck with it though.

I know what you mean and it would be very hard. I am still in the middle of looking into things as well, to really understand how much could actually be raised! There would still have to be an application process where people would have to apply, and then the board of trustees who will all be fertility specialists( I am lucky to have a few in my family) will objectively look at the evidence and decide on medical grounds who gets the money! When it comes to IVF certain couples have a higher chance of success than others, but the charity would only take the medical facts into consideration and not whether its a same sex couple applying, or a women by herself applying. The big idea is to just look deeper into the decission making process and make smarter decissions. I am 100% clear and aware that not everyone can get help, And then people will still get rejected, but even helping 2 couples is more than none I thought.

will objectively look at the evidence and decide on medical grounds who gets the money!

that's going to be pretty tricky too. you'd need initial bloods like AMH to even make the decision, which is costly (and not available on the NHS for those who don't qualify for fertility treatment).

Would you take into account things like already having children? if so how many? what about age? smoking? you could end up just recreating the NHS criteria as they are generally evidence based

I understand what you are saying! I have some people looking into the whole medical side of things at the moment, as they want to understand as well whether you can make a decission objectively enough with the results couples will already have if they have been rejected for funding. Smoking and healthy lifestyle choices will be taking into consideration the same as the NHS does, but if you have a husband who already has a child from a previous relationship the NHS rejects funding but we would then look at the medical evidence rather than already having children for example.. Certain criterias will of course be the same as th NHS as they are necessary.

I work for a grant making charity and what you are proposing to do while admirable will be very difficult. We don't fund individuals for example. How would it affect their tax and NI? How will you sort out the due diligence and reporting to the CC or OSCR?

A potential solution? Contact your local Community Foundation and see if they will let you set up a fundraising constituent fund that then makes grants. Grants could be paid directly to the providers.

You'll need lots of the right advice for this. Good luck.

I had ICSI funded by a charity. We were fortunate enough to receive 2 funded NHS cycles which sadly didn't work.

My husband is in the Masons & we applied to their charity for funding for a 3rd cycle & they approved us & the result is now in Yr1 at primary school. I will never forget the kindness of the people who helped my son possible

As you will potentially dealing with a lot of highly personal data you will need to ensure you meet the requirements of GDPR.

There are lots of rules and regulations around fundraising the Institute of Fundraising can help with that. The fundraising regulator now has responsibility for the Code of Fundraising Practice

Gov.uk has advice on setting up a charity (which if you go via a Community Fund you can sidestep) as does NCVO via knowhownonprofit.org

When I was looking at fertility treatment there were American websites that mentioned similar things, but nothing in UK even though nhs funding is limited. I think it's a great idea.
And maybe you could offer grants towards part cost of treatment rather than paying for 100%?

Agree that paying provider direct is simpler from a tax/benefits perspective.

The grant making charities I'm aware of generally have a large capital sum/endowment and use the interest from that, in addition to fundraising.

I had started saving for ivf and so when we didn't need it in the end I would have donated money to your fund

I'd rather charitable funds went to curing diseases, eradicating AIDS, helping homeless people, giving existing children a better quality of life.

I appreciate what you're trying to do OP but I can't help thinking it's not a charity that's required to help.

Basically the idea is to partner up with certain fertility clinics who probide private treatments. The money would go directly to them and not the individual couples. So like you all suggested the providers will be paid directly.
Thank you for all your help and advise, Ill need to look into everything to see what needs to be done.

Lovely idea but how would you police who got funding? I know a lot of people on Instagram for eg who set up crowd funding pages for IVF and then are continually posting photos of them out shopping or drinking cocktails etc, now don't get me wrong I'm not saying you have to sacrifice everything for IVF but I had 5 cycles (luckily some funded) and we took extra part time jobs, lived as cheaply as possible and sold things on eBay etc, didn't go on holiday.

I just think it's hard faced people are having people donate to help them then they are off on holiday or constantly doing home improvements on their 4 bed new build!

I totally know what you mean! I know a couple who earn over 150K per year between them, after bills and everything they have more than 7K per month to spend for their life style! They got 2 paid cycles of IVF on the NHS which I dont think is right.
There needs to be a certain need for people to get the help with funding and there are sensitive ways to establish that. Every University for example has student welfare funds and they use certain sensitive checks to establish whether help is needed and the charity would do the same.

I would be very interested to see how this develops.

We aren’t entitled to NHS funding due to a child from a previous relationship (mine) but DH has been told he won’t ever be able to have children without ICSI because of severe male factor infertility. All seems well with me and we’ll be egg sharing if this remains the case but if something is thrown up, then we won’t be able to afford IVF for a very, very long time. It’s such a postcode lottery because I know people who have had it funded if a child is present from a previous relationship.

I do think you'll run very rapidly and very hard into questions of how to determine who is most 'deserving' of help, which are likely to be highly problematic and challenging to navigate. Think this part through very carefully before you proceed, and don't underestimate how difficult it will be (on an ongoing basis, not just at the beginning).

You need to have a strict criteria of who would qualify. Women under 30 already qualify for massive discounts if they agree to share their eggs. So it would make sense to target women over 30 who don’t need egg or sperm donation.

It might help for you to contact fertility clinics as with a good business plan, they may also offer up funding.

^ so not same sex couples then?