Medical costs for step daughter's son

[redwhitegreen]

I’ve NC for this.

DH has a daughter (let’s call her Jane), they’ve never had a brilliant relationship, she treats him like dirt to be honest, but he always goes along with it, just to maintain contact.

Jane and her husband have a son (let’s call him Sam). He is pre-school age, he’s seen specialists and its become clear he has medical problems. There’s no cure, various therapies are available, none of them proven, and of course steps can always be taken to improve day-to-day life (and that’s as specific as I’m prepared to be, in case the Daily Mail gets hold of this).

Jane has understandably been researching all this, and is interested in taking Sam abroad, to seek other opinions/treatments. You can imagine the cost. DH is keen to help as much as possible. And here is the issue: DH and I are approaching retirement. We have saved hard for this, and have plans. We have comparable jobs and have both contributed fairly equally to our joint finances and savings. So how much of this, if any, should we be sacrificing? I know a child with health issues is a very emotive subject, but I’ve worked hard all my life and I’m not sure if I want to donate chunks of my retirement fund to a fairly unpleasant woman (or even delay one or both of our retirements) when she also has a mother (who never contributes towards anything) and of course her husband (Sam’s father) also has parents.

I expect to be criticised for posting this. But if anyone can be constructive, please reply.

I don't think DH would go down the route of talking to specialists, I think he'd be scared that Jane would think he was undermining her.

if the cost is going to be massive than OP and her DH contributing is not going to help
much. E.g. if the cost is £2m than £50k does nothing.

I understand. But I think contributing your joint finances to unvalidated treatment Jane has characterised as ‘extortionate’, especially when you haven’t indicated how much she is paying towards treatment, is wrong and unfair to you.

If this were a validated way of relieving (physical or mental) pain and the boy’s parents were also funding as they could reasonably afford, my answer would be different.

Thanks for replyinf

maybe ask for ball park figure in her mind

thing is imo - if this cure/medial intervention works for the child’s condition - surely nhs would be all over it or even recommend it

or suggest it but say it’s costing xxx private

bit Like ivf. Yes can get on nhs. 1-2yr waiting list area and age depending and maybe 1-3 goes depending on postcode

or

pay private and start next month

the fact the boys consultant has never heard of it mearns unlikely to help

As said before, your DH would just need to put off his retirement until he replaced the money he used from the joint fund. It should not be eating into your portion, delaying your retirement, or causing you to subsidise his loss (which is the exact same thing as you giving Jane the money yourself!)

If he cannot afford to give her the money and replenish it with delayed retirement he cannot afford to give her the money.

thing is imo - if this cure/medial intervention works for the child’s condition - surely nhs would be all over it or even recommend it

My thoughts entirely

But would you be happy to fund it if it was legit but just outwith nhs scope? There was some really good treatments which the nhs don’t fund due to cost. It’s hard to say if it’s this or something unlikely to help but it sounds like even if it was a helpful treatment, you don’t want to pay? So why bother debating its legitimacy? Is it just to make you feel better? That would frustrate me if I was your DH, I’d rather you own your decision.

Not necessarily - it depends on the cost. But if it were really a cure/wonder treatment then the NHS consultant would certainly be aware of it and the data supporting it and it wouldn't just be available in EE and SA.

The main issue is the financial impact on us. And obviously that's the same whether the treatment is legitimate or not.

But since I started this thread, I've done some of my own research and nowhere in the UK makes claims about treating this condition, whether NHS or privately funded.

It might also be educational to google the condition and try to find parent feedback or groups that aren’t affiliated with the “treatments” like XYZ treatment scam, XYZ treatment failed … etc

There are these Autism doctors around the world with specific treatments, the practitioners are all “doctors with a ASD child” and claims are amazing. They can meet you and talk in a meeting in a legit country but the treatment is in an unregulated country. There are parents who rave about the treatment at the meetings. I saw this in Singapore, the Drs have the info sessions in Singapore but the treatment is in Indonesia. Meetings in America & Canada but treatment in Mexico.
So suspicious.
Saw same with another group that sells “supplements” that “cure” Down’s syndrome … a very specific micronutrient which in our formulation crosses the brain blood barrier …. Not convinced anything can cure a chromosome syndrome.

Since it’s your husband, and his full thoughts are likely unknown to you …. Perhaps tell him you really want to help (you do!) and you are interested to learn if the treatments are safe, and effective.

So many shitbags prey on vulnerable and desperate parents …

which may be true, but I suppose you have a big agenda driving your research, which may mean it’s hard for others to take it on board, even if it’s valid.

I think it’s fair to say you don’t want to contribute and have that conversation about not supporting your husband financially if he chooses to, but I’m not sure how you do that without any impact on your relationship. I presume when getting married you had conversations about how he planned to leave his money etc., and that you wouldn’t be the sole beneficiary so he may be thinking about it as early inheritance etc.?

I agree. There are enough parents, grandparents, step-parents, in-laws etc to start the fund off.

Can you say exactly what the specialists are saying that can do? Eg help a child who can’t walk, walk?

I'd not be paying a single penny at all.

I grew up poor and people cope with what they have. Whatever you give, it won't be enough. When this magical cure doesn't in fact cure the condition, she will be back asking again for more. There's no end for this type of thing. If it has moderate success she will want more money to pay for further treatments with diminishing returns.

You can't bankroll private medical treatments unless you are very very very wealthy. It will easily stretch into hundreds of thousands.

Yes

what improvements are they offering @redwhitegreen in the things you looked at

It's your husbands grandchild! I would give anything to help mine!

But there is help and then there is quackery.
I wouldn’t spend £500,000, leave me in penury and having to work on into my 70s on unproven experimental treatment that promises a 5% improvement on quality of life. But I would spend £20k on proven treatment that promises 50% improvement of quality of life

there is reality and fantasy

No I wouldn't pay for this. Unless it was a treatment recognised in the uk for greatly improving quality of life but the cost meant the nhs doesn't fund it.

Sam’s condition does not affect his walking

But would you bankroll someone else’s grandchild to the detriment of your own retirement?

I think your right to have reservations, when my son was diagnosed with a terminal illness I started the internet research route. Immediately there are websites claiming they have the cure our doctor had said doesn't exist. All claiming for the right amount of money my son could walk out of the hospital in America with his genetic mutation removed. It was a powerful moment and I was very tempted but something stopped me but I wouldn't blame anyone for being conned. But take a very close look at what treatments there looking at, search the NHS website which could help fact check. They will probably try and raise the money no matter what so maybe cautiously support them but to give money you need to see the science.

I don't blame you for not wanting to fund it. If it was, say, a years extra work for DH and was likely to result in significant improvement for Sam, I'd say he could go ahead and work an extra year (or 6 months each if you're feeling generous). But the fact that it is incredibly unlikely to help at all, it's just throwing money down the drain so that Jane feels supported.

I think for now, I'd just say to DH that you don't want him to offer or agree to anything that you haven't discussed. Then watch and wait. As Jane researches, she may discover for herself that these "cures" are incredibly unlikely to help at all.

If it's snake oil these people are peddling, you'll be doing her a favour not to let her pursue it tbh. That's the angle I'd be taking with DH.

I think it entirely depends on how much money and how much ch better the child would get. E.g. £20k or £200k.

A proven treatment with evidence written about it or just someone wanting to test a new treatment.

All this makes a difference to the answer.

No idea how much money, but I doubt overseas medical treatment is cheap.

As for how much better he’d get - the UK specialist says the condition is not curable. There are therapies available in the UK (on the NHS) to make things a bit easier but Jane seems very keen to go abroad to find a cure

Personally I think deferring your and/or your DH's retirement for a limited period to help a child without impinging on your lifestyle beyond delaying your future fun would be kind, moral and not that big an imposition, but I like my job. The child can't help his mother's behaviour, after all. You obviously have no emotional connection with him though, which is sad. He's not a stranger's child - he's your DH's grandson.

Put it this way - will it come between you and your DH if you don't do something to help (not necessarily this treatment but maybe paying for non NHS assessment)? Are you happy to choose your way and face the consequences? You can't assume everything will go back to being lovely if you insist on hanging on to the money. The situation has changed and it won't change back.