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'd just say the money is not for the daughter, but for the child.

Is the treatment a one off that will provide long term relief of is it an ongoing treatment required for life?

Assuming that it’s legitimate treatment he would be receiving abroad, your DH owes this to his child and grandchild.

This may be a wild hunch but I wonder if your GC suffers with extreme challenging behaviour/ severe autism or similar?

My DD does and I know there are loads of US sites offering therapies, swimming with dolphins etc. which we also considered when DD was younger but never went further than that.

I now know, many years later, it would have been a complete waste of money as, after a battle, the NHS finally agreed to genetic testing - had I known how relatively low the cost would have been for this we would have willingly paid for this in the UK years ago 🙄. Turns out our DD has an extremely rare gene mutation so any of these expensive therapies would have proved useless.

If it is anything to do with the child's brain, OP, I feel your SD would be much wiser pushing for genetic testing instead before going on, what sounds like, a wild goose chase.

Sorry if the issue is not neurological but thought it may be worth a mention.

Are the treatments she's looking into complete woowoo, or has there been good initial results, but his doctor needs more proof before he can recommend it?

Is the provider a legimate health care provider in a clinic or is it a reiki guru who sees angels?

Would the treatments be life alternating if it worked, or would it make him potentially slightly more comfortable?

Sorry, the NHS deliberately withholds information on many proven effective treatments because of cost implications, for example, whatever is regularly prescribed for Spanish pensioners, is not even mentioned for ours in the UK. Anti-anginal agents being only one example.

Nailed my thoughts exactly. The fact that she treats your DH like dirt would cement it for me although if this was my son who treats me very well I'd be having a gentle discussion about why this wasn't a good plan and to talk about how else we could support them

I think the key point here to argue, is not whether you have to contribute, but whether anyone should be spending on private treatments abroad (including child’s parents etc).

the uk is in a fairly unique position in the world becuase of our nhs process re treatments. Whilst drugs/treatments csn be approved for use in uk through the authorisation by our regulatory body (MHRA), in exactly the same way as it may be in other countries like USA, this doesn’t mean it will be available under the nhs. The fact the nhs is a national, single body , centralised service, means we have a pretty robust state Clincial body to assess the value of new treatments as they come along. And the risk vs benefit profile can be assessed across the nation as a whole with accords to a nationwide data base and epidemiological information (e.g. how common is that illness, population group impacted etc). This is NICE. most countries simply don’t have a national organisation like this. It is way more common that those assessments are made by individual health insurance companies, who may come up with different decisions depending on what you pay for your insurance.

now on an individual level, NICE comes in for a hammering, it prevents access to nhs patients for approved and authorised treatments, available, that have been demonstrated to work in SOME people. It is pretty common for NICE to block use in nhs until much later after launches, for it to gather far more reliable population based data to effectiveness vs costs. NICES job is looking at overall population and saying overall what % of patients will benefit. And that’s an entirely different approach to individual patients deciding to purchase treatments directly themselves in countitres whether thst is the model.

so, treatments aren’t available in this country, not because necessarily they’re unsafe, but becuase on balance not enough people will be successfully treated with it, for the cost and possible side effects that impact the whole population treated.

however, in that cohort of population, there ARE people who will benefit. Just not enough for NICE to treat the population overall, at high cost, for the benefit of the small minority of “lucky” patients.

so, question then becomes, will you go private for treatments that are more likely not to work, very costly, and probably with higher side effects, Becuase you hope you will be one of lucky minority of those with positive outcomes? That’s a gamble

and of course the private providers are going to put positive spins on your individual chances to ensure you hand over the cash. providers know that “hope” is a powerful paersuasion to people, without very much hard selling at all, especially when terminal illnesses or severe disability will be the outcome

it comes down to whether you want to spend money on hope, or not spend money and rely on NICEs population reviews to decide on basis of probable outcome.

I don’t think anyone can say what the answer is to anyone in that position- unless you’ve faced such life and death decisions . If you, op, want to trust empirical studies reviewed by NICE and their decison , versus google and hope from a grieving mum, then no one has right to make you spend your hard earned cash and future security on that.

personally, I wouldn’t touch a treatment for anything NICE has not approved for use in nhs, but then I’ve worked in pharma for 40 years, and know about how regulatory process work long before it gets to NICE.

I’ve also seen the impact on family of a few families chasing down private treatments abroad that aren’t a visible in nhs, and watched them waste the last months of someone life, travelling, staying in hotels, paying loads on insurance cover becuase of high risk patent travelling, and not being at home, in their own house, surrounded by friends and family for last few months of their life. It comes down to quality not quantity of life.

as I say, HOPE is a powerful emotion. People view it as a positive little emotion. However, hope most often is a survival mechanism, to protect us from taking riskier decison to change. In these cases, the change that is often needed, is a grieving process to reach acceptance on the outcome of not chasing down treatments that will only help a lucky few. And that’s a huge emotional shift for families, especially when a child is involved. Hope is easier.

You split your fund 50 50 and each do as you wish.

You may find he spends all his on his daughter amd then it's up.to you whether you retire early while he carries.on working or whether you fund his share of holidays or not.

Haven’t read beyond first page but if I’ve read correctly - a grandfather wants to help his grandson? I don’t see how his daughter’s behaviour should influence how he treats an innocent grandson……. Gosh if people judged/helped me solely based on my mother’s behaviour I’d have had a terrible life!!

Why aren't they doing a fundraiser or something like a GoFundMe? Or getting a bank loan?

I just wouldn't be asking my aging parent for a sizeable portion of their retirement money.

Hi OP, I hope you're still reading.

My DH, who is my 2nd husband, and I had a similar issue with his DD's child, DGS. We both have 2 adult children each.

I have always had a difficult relationship with this SD 1, though not with her sister.

SD 1 has been wayward, extravagant and has fallen out with the rest of her family. She had a baby with a quite vulnerable man who takes her orders.

My DH suffers from extreme divorce guilt and has always given her secret supplies of money which I have tolerated but which her sibling has been enraged by. DD 1 has not worked in her adult life because of financial support from both my DH and her mum. Her sibling, who I love dearly and has always been lovely to the whole family, has not received the same help and feels that her parents have caused a lot of DD 1's issues.

SD 1's child was diagnosed at the age of 3 with a very vague sounding diagnosis from a "proper" doctor who had left the NHS. My DH was convinced by SD 1's calls for help for DGS and has funded IMHO some very questionable treatments. The request for more money is constant. SD 1 regularly shows up at A & E with DGS and asks for medical investigations for a range of conditions. Most recently a health visitor was asked by her GP to visit to investigate. SD 1 was outraged. DH was concerned to hear of the issues and even he had begun to notice SD 1's escalating health concerns for DGS. Recently SD's GP has told her husband, DGS's dad, that he believes that SD 1 has a disorder that involves her believing her child has medical problems in order to make her special and get attention.

It's been very difficult all round even though DH and I have a good relation ship with SD 1's mum. She's been concerned for a while about all the medical/alternative practitioner hubbub around DGS.

Knowing what I know now I would insist before any money is handed over for treatments that your SD's GP and appropriate medical specialists endorse the need for treatment and I would be working with the whole family - including all the grandparents to provide cautious support and to share information.

YANBU to hold a cautious position. This can all escalate and be very hard to manage.

It's not about her, it's about the grandchild.

If your husband chooses to donate a sum to the cause, that's up to him. No doubt he will still have enough, plus pension, to live comfortably in retirement. However I urge you to urge him and his daughter to find out more about this treatment and get an estimate of costs before he decides to give. He can't be expected to fund it all, a set amount only.

Poor little lad. If any of us had a child with a health problem we'd do all we could to make things easier. However I am sceptical about some of the wonderful clinics advertised in America and other countries (no doubt there are some here too), for all sorts of conditions, which raise hopes but do not achieve desired results. That's why I say it should be researched thoroughly before anyone takes a expensive decision.

I think in your husband's shoes I would want to help my grandson if at all possible.

As long as your security is not affected I think you should stay out of it. The little boy is not responsible for any strained relationship between his mother and grandfather. Do you like the child? I don't have any grandchildren, not complaining because my life is fine but I do have a soft spot for children and little ones melt my heart.

Good luck.

Exactly. Their child, their responsibility.

The grandfather has no right to disadvantage OP.

If this is unevidenced treatment, I would have no qualms at all about telling him to do as he wished, but however much he took from our joint savings to do this, he needs to transfer the same amount into your separate savings. What you do with it then is entirely up to you.

I think you’re confusing hte role of the regulatory bodies that approve medications with NICE (the national institute for Clincial excellence)

no one withholds stuff- there’s no massive conspiracy.

any drug company or medical device company csn submit for regularity approval to be licensed to sell that medication in whichever country they apply to. That requires a submission document . That literally can fill a room with the results of the clinical trial studies, validation and verification; documentation, stabiblty studies and a huge massive amount of information.

in most countries, with non coentralised health care systems that’s enough for people in that country to demand this treatment. It is approved..therefore it can be available.

but we have the nhs. Which is a centralised service provider , and a single source of funding for the government. NICE is therefore the body that decides whether it becomes a viable on nhs. NICE may not publish its own studies into those decisions, but this is more an epidemiological and cost decison, it ceritnwly isn’t looking whether it is safe etc - it doesn’t even get in front of NICE unless regulatory authority MHRA have approved it. It’s MHRA that reviews the Clincial evidence.

NICEs decisions are hard ones. They’re looking at overall population, not whether a single patient may benefit. No drug or treatment is without a risk benefit profile, so often NICE will decide that more established, cheaper, treatments , on balance will help more of the population, than a new treatment that has massive beneifits to a minority of patients. It comes mostly down to money, and not plugging resources into a small section of population with that condition that may benefit

itnis not unusual for NICE to revise decisions, later on , on drugs it blocked intitally, as profile of risk and benefits become clever over time

but on an individual patient level, those population based decison can be frustrating, hopeless and demoralising.

To answer a few questions. Jane hasn't asked us for any money. She is considering overseas options and has mentioned the extortionate costs and DH mentioned (to me) that he would like to help.

DH has another adult child from his first marriage. I don't have children.

I can't name the medical condition in case this thread gets into the media, but its a relatively common condition, and we all know that (sadly) there's no current cure. It is not life threatening.

Are we talking about £10k or £500k?

You can not make decisions until you fully understand the costs. Are you talking about £1000s or £10,000s or over £100k? If step daughter wants to take the child to the US are we talking about one trip or multiple trips? If you pay for one trip will she expect you to fund multiple trips.

You need to talk to a financial adviser to fully understand the impact on your retirement plans. Is step daughter expecting dad to handover his lump sum or both of your lump sums?

You need to protect your retirement income. The child’s situation is not life threatening and you need to know if the therapies actually work before embarking upon any agreement.

I guess your DH and you have been on the hook for her expenses in the past ? @redwhitegreen Step daughter wants you to pay more. Tread with caution as you do not know what you will need to fund in retirement or what challenges lie ahead. I have a friend who is now in a dementia care home as her husband could not cope. She is only in her early sixties and he will have to sell their home to fund her care.

sounds like the treatments are unlikely to work, at least far as the NHS thinks, and the condition isn’t life threatening. Not exactly screaming “give up your pension”.

is there an amount your DH could give a kind of goodwill gesture that you’d be ok with and she’d be ok with?

@redwhitegreen if there is no current cure and condition is not life threatening then I really dont see the need for overseas visits which might or might not help. overseas treatments can run well in to the multiple tens of thousands!!

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?

This is a scenario where it would have been better for you to have separate finances and savings. He has separate family responsibilities as he has children from a previous relationship and now has grandchildren.

You need to be realistic here. Your husband will not be able to walk away from this and enjoy his retirement and this will have serious consequences for your relationship.

Are you kidding me? The child is a nobody to the OP. In the same situation I would definitely help my own daughter and my actual grandchild. But hell would freeze over before I spend my life's savings on a kid unrelated to me. I don't consider step-anyone family.

Don't do it, OP. She's not your daughter and he's not your grandchild. Don't waste your retirement fund on them. They can take a loan. And if they can't - well, tough. Not your problem. It's ridiculous to work and save all your life and then donate your savings to some kid.

However, you cannot dictate what your husband does with his share. She is his daughter. That said, if he'd give her all his savings and would rely on me to fund his retirement - I'd divorce him. Before he gives the money away.

Yes. This was always going to be possible when you married a man with children. It’s no use now, but the fact is that if you wanted a retirement untroubled by familial responsibility you would have been better off settling down with someone who had no previous obligations. That’s not to say I think she has the right to take all your money and leave you potless, of course.

Are all your finances Joint? If your husband wants to give a donation to his daughter then it is only fair that you have the same amount for yourself to put in a separate account.

Sorry but you dug your own grave marrying a man with kids when you don’t have any of your own. You should have made sure down you kept your finances separate.
Far too many stepparents act shocked when their partner wants to help their own flesh and blood. If I had a partner try and dictate that I couldn’t spent my hard earned money on my ill grandchildren, I would be telling them where to go.