To think this mother deserves to keep this money?(125 Posts)
You may have heard of the mother who has been asked to repay over half the compensation payment she received to care for her son, who had spina bifida which the hospital did not spot during her pregnancy, after his death.
As a disabled person who has heard of several people getting similar payments, I've never heard of anyone having to repay any such money in this situation.
I don't think she should have to repay the money. I've written on the case at my website: samedifference1.com/2013/05/16/mother-asked-to-repay-compensation-after-son-with-spina-bifida-dies/
This is not advertising for my site- I simply want opinions from people who hopefully have no personal connection to disability.
After writing the linked post, I read a Daily Mail article saying that the compensation was fought for because the mother was not given the choice to terminate her pregnancy.
what an awful time for that family. they really dont need the extra stress of this.
what i dont understand is the NHS trust's point about 'managing the public purse'. surely that money had already been paid out and so was already 'lost' to the NHS (as in the budgets have been worked out without that money being factored in as it was already gone). the fact that the child has now passed away does not suddenly cost them more. it will actually cost them less as he wont need the use of NHS services anymore. and what's to say it hasn't already cost the family over £705k to care for him until his death?
I'm in two minds over this one.
I'm not convinced that compensation should be paid because her sons condition wasn't spotted before he was born. As a result of this compensation, she has an adapted house that she wouldn't otherwise have, specifically to help care for a child who no longer needs those facilities. The compensation was gives for a specific purpose and length of time, and sadly they only need it for half that length of time.
It's an awful situation, I feel for the mother - but I can see why, in this case, clawing back the money might be seen as appropriate.
I don't agree with compensation for having a child born with disabilities. It's too much of a slippery slope for me. You take a risk when you have children, and there are many many situations you cannot foresee. Your child could develop an illness, or be injured in an accident. It's something you need to accept when falling pregnant, and no one can tell the future. I think that "compensation" implies that someone has been wronged, and I can never believe that the life of a child can ever be wrong.
That said, I think that anyone with disabilities (or parents caring for children with disabilities) should be able to access funding for their needs. I'm so proud that Australia (that horrible redneck country!) has just passed groundbreaking legislation, the NDIS, which will do just that for its citizens.
I can see both sides to this one.
The money was paid for the childs ongoing care needs. The child no longer has these needs so the money should go back to pay for the care needs of another child.
What Midnightscrubbler said.
I would imagine that there was some sort of claw back provision in the original payment made, otherwise legally the trust wouldn't have a leg to stand on. In fact as NHS compensation is paid for through a national pooled scheme it would not be up to the trust in any case, this will be a legal process run by the NHS Litigation Scheme. I don't think that they are particularly playing hardball, as they've said they will give her reasonable time to repay them but the money was to compensate the mother for the unexpected cost of looking after her son, and sadly it is a cost that she will no longer have to bear.
Here is a source for the background that's not Daily Mail www.teeslaw.co.uk/case-studies/medical-negligence-wrongful-birth.aspx
My initial thought was how horrible to sue for 'wrongful birth' but the mother was at higher risk of birth defects because she was taking epilepsy medication so the trust probably should have taken better care with the prenatal checks (it was a settlement though so difficult to tell if there was actual negligence). It sounds as though the little boy was very seriously disabled.
From a strictly unemotional viewpoint. The money was not given to compensate the mother , it was payment for her son's ongoing care needs. sadly they no longer exist. Why would she then need to keep 375,000 pounds?
Currently the NHS is under huge financial pressure and that money can be used for treatment for others who need it. Who's operation should we cancel to allow her to keep these funds that she no longer requires?
I feel for her, its a terrible thing to lose a child. but that doesn't entitle her to keep 375,000 pounds of public funds because of it.
A relatively short time ago, the claimant had one bite of the cherry and had to try and assess their lifetime care needs in one lump sum. This was wrong, given the unknowns eg the effect of inflation, actual life span, the cost of care and assistance, aids etc. So the system was changed to enable insurers to fund lifetime care needs and for claimants not to have to do complex deals. Even the most lifechamging injuries attract only around 100000 in compensation for pain and suffering. The headline grabbing figures reflect future loss-such as earnings. This has to be a 2 way process. A settlement for care and assistance that is not needed should be repaid.
And having read the non daily mail link its clear that her sols agree-the payments being described as interim. Won't read the mail but I fail to see the controversy?
I agree with Meddie - whilst very sad for the mum the money was for her son not her. It should go back to the NHS who need the funds.
The NHS does not have a bottomless pit of money. If the "need" for the money is no longer there then the money should go back to the NHS.
There was a case locally where an adult, brain damaged at birth, won a massive negligence case. Some of the money was used to buy a huge house where she could live "independently" in an annex - with her parents and one sibling living in the rest of the house. Her parents and sister were also her carers, taking turns to sleep in the annex.
Sadly she died not long after they moved in. The house, willed to her parents, sold for £750,000 and they also inherited the rest of her cash payment. It had been estimated that she would have a normal life span when the compensation was awarded. So it really was a huge amount of money.
It's right that compensation was made but I don't think it's right that the family made a profit - the cash was not awarded to them.
I know someone who's daughter was awarded a vast sum of money as the hospital screwed up and the daughter has serious disabilties because of it. The money was paid into a trust and a commitee hand out money to her and her family every now and then (not sure how often it is) to pay for her care. No one else in the family directly benefits (its not spent on big tellies and holidays basically but hoists and wheelchairs and physio sessions for the disabled child).
Was this money given in the same way? if so while I can see the mothers side of things I do think the NHS should have it back now that the boy has sadly died. It was his money to pay for his care because of their fuck up. He is no longer alive so doesnt need it.
Maybe monies won through a case of wrongful birth/neglect in.labour etc wjere a baby is left disabled, should be paid per month for every month it is required.
No claiming money back - simply "we agree this disability requires X amount per.month to cater for their specific needs" and it is paid every month the recipient is alive?
This is not a case where there was a final settlement figure that the NHS are now trying to claw back - the monies paid have all been interim (ie paid before the conclusion of the case) and as I understand it Calum died before the final settlement - hence the ability of the NHS to get the money back.
The money should be clearly for care needs, not as some sort of monetary 'compensation ' for the mother. Therefore I don't see that she 'deserves ' to keep it: in fact the whole concept of her deserving something is quite distasteful. She lost a child which is heartbreaking but no money can ever compensate that.
There is no reason for her to make money out of this now that the baby has died. I am not sure why it was awarded in the first place, spina bifida was missed on the scan which meant she couldn't decide to have an abortion on the basis of spina bifida but while the sonographer should have seen it, in fact no guidelines claim it is detected 100% of the time.
I read yesterday that the house she bought with the money was worth £450k before being adapted. i wonder if anyone gave her advice on the best way to use the money as i wouldnt have thought using that much for a house is a good idea, as now she has to try and sell it. and no she doesnt "deserve" to keep the money, its not for her.
I have a DD with a disability and find wrongful birth cases hard to get my head around emotionally.
Sad as it is, the money should be returned. It isn't the nhs's fault that she bought a house with it.
No, I don't think that she deserves to keep this money and, yes, I have heard of other cases where part of compensation award has had to be returned when a child has sadly died.
It was unfortunate that the mother chose to spend a such a large part of the settlement on buying an expensive house, but if she owns the house outright, while it is sad that she may have to move, it is excessively emotional to talk about being made homeless - homeless people are people who have nothing to pay for another home.
Depending on where you live £450k is not the hugest amount of money for a house.
I read that the NHS is not forcing her to sell her house, and other options are being worked out. I also saw that she's not the sole owner of the house't there are trustees involved.
I haven't seen if she's spent the whole payment, is that the case?
Horrible horrible situation.
The money does have to be repaid, as sadly the mother does not have a reason to need it any more. It's wrong that it had to be paid in the first place, if we had a system that provided for disabled people and their carers properly she wouldn't have needed to fight for compensation because she didn't have the opportunity to abort. She shouldn't have had to have that fight in the first place, and it shouldn't be called compensation. She would have needed the money whether his spina bifida had been diagnosed in utero or not had she decided to still have her baby.
I can see that 'compensation' may be fair when disability is caused by a mismanaged birth, but that should be on top of the money that should be received by a disabled person and their carer as standard.
If a disability isn't caused by medical negligence, then I'm not sure why the NHS would be compensating anyway.
She should have had adequate financial support from the government, but not in the form of compensation because the NHS was not responsible for it.
It's not supposed to be an 'apology' payment to the parent.
The money should be repaid. It was for the ongoing care of her son who sadly is no longer in need of it. I dont see why she needed to buy such a big house either.
"Wrongful birth" just sounds so wrong. So not being told to abort gives you a payout but choosing to have the baby doesn't?
She no longer needs the money. The money wasn't to compensate her, it was for him. She should pay it back.
Well the fact that the NHS had paid £750,000 shows that there was obvious mis-management of ante-natal care to this woman.
I'm surprised that there seems little in the way of monetary advice from the solicitors to the woman in question. I thought that in a big-payout like this that the proportion of the compensation for the ongoing care costs of the child would have to be put in a trust. How she has managed to blow all the money that should have been somehow ring-fenced for ongoing care till adulthood is unusual. Agree that the NHS has every right legally to try and claw back this part of the compensation
Surely the money was to support the child and help fund the extra help he would need to cope with his disabilities? It would have been based on how much a year was needed to support him multiplied by an estimated life expectancy. I would be surprised if somewhere in the terms of the settlement there was not a clause which stated that it would have to be paid back in the event of his premature death.
I have not read the article btw because I think it might make me cry.
However, I would say that if the family moved to a home where there was lots of room for a downstairs bedroom and bathroom, I don't think they should be expected to sell it and move to somewhere smaller to pay the money back, I think that should be written off by the NHS.
"However, I would say that if the family moved to a home where there was lots of room for a downstairs bedroom and bathroom, I don't think they should be expected to sell it and move to somewhere smaller to pay the money back"
She is a single woman. There is no other family.
I agree with midnight scribbler totally, it is one of those risks tat you take when having children, what would she have done 60 years ago! It's not the NHS fault she ad a boy with a disability!
However I agree with booyhoo, that money has already been budgeted for, and some of it was also compensation to her for te scan failing to detect spina bifida, and the stress that she had To go through.
Depending on where you live £450k is not the hugest amount of money for a house.
It's a 5 bedroom detached house, which is fairly big and probably wasn't the best investment of the money given that she was always going to have to fund his care after the age of 10, as supposedly that was what the award was due to cover. However, I can appreciate that buying a dream house and never having to worry about mortgage payments was probably a big weight off her mind when it came to focussing on her son's care, although I think saying she might be 'homeless' is a bit misleading given that there will be a hefty amount left over when it's sold even after the money is repaid to the NHS.
I don't understand why the NHS pays out because they didn't notice. If it's mismanagement on someone's part, fine, but I have a dc with a congential condition and the costs are the same whether you know beforehand or afterwards.
Personally I think it would be better if the money is going to be spent on housing that the NHS buys and adapts the house that they can live in for X years at, say cheap or no rent. The NHS then has a house they can then either use for someone else in that position or sell and use the money to help other people, maybe another child in the same position.
Also (speaking from experience) the NHS has more experience in adaptions that would be useful. I know when dd2 was diagnosed (at scan) one of the things I did was panicky looking round the house thinking of adaptions that would "need" to be done. We didn't have the money, and none of them were done-and actually none of them were needed. i was overthinking what would need to be done.
The house did look rather bigger than necessary for two people, and if they would require her to pay back the money if she had saved it, it would be giving a wrong message to others in that situation. People would feel that they would be best to spend as much as possible, which then could mean that they ran out of needed money later, causing different issues.
It is mean to throw her out of her home, te government will end up paying her housing and income support. dojo she did not buy a dream home but a house suitable for a severely disabled child in a wheelchaire. It would have to be large to enable the wheelchair to get about properly and for a lift to be installed so tat te boy can access all of the house.
Even if she doesn't get back the full amount of money she spent on the house coupled with the adaption costs she still has a substantial asset and isn't likely to be needing housing or income support if she sells. I don't think she is quite on the breadline
It does not take into consideration how much funds had been used especially to set the house up caring for the child at home, and how much was supposed to be for continuing care.
I dont agree with claiming the money back. But if the money were to be repaid, they would have to work out how much had been spent on setting the family up in order to care for him, and how much it would cost annually, and then only claim back the amount for care over the remaining years. Not the set up costs, not for the years care was given, but only claim back the amount allocating care for the years he did not live.
So, hypothetically speaking, if this was a care of a £20 k annual salary for a carer, rather than mum, they should claim back for £20kx the years this "salary" was not needed.
One could also argue that in determining how much to 'claw back', consideration should be given to the mother's previous earning potential and the effect that being out of the job Market for the time she was caring for her son had on her ability to get back to that level and the difference should be ring fenced and put in trust to be paid out annually to her until she resumes her previous earnings.
I went to have a brief look on Rightmove to see how much house you can get for that money in that area, and her house is actually on there for sale. It certainly looks more like a dream home than one purchased purely for its practicality for a wheelchair user. I'm not saying it's not suitably adapted to his needs, but five bedrooms, two with en suites and one with a dressing room, a formal dining room and a completely refitted kitchen is a little more than I imagine would be needed just to care for a child with disabilities. I don't begrudge her at all, but I do think that she possibly overreached with her choice of house and would have found herself in difficulties when it came to paying for his ongoing care once the money ran out anyway.
I'm on the fence with this one. I know how horrendous it is to lose a child so wouldn't want to comment on what i think is the right thing to do about the compensation.
I had my first child at 19, he was born with a GBS infection that was missed by the midwives/doctors for four days, even though he was clearly unwell and i kept telling the medical professionals he was ill, i was a 'young first time mum'. By the time they listened to me, he was rushed straight to intensive care fitting. He was found to be totally brain damaged, blind and deaf and then developed a rare type of Epilepsy from the brain trauma. He spent a month in hospital and then i bought him home to care for him for 3 months before he died. Everyone told me to sue the NHS but i didn't, i didn't want money from the death of my child. I just wanted to deal with it my way.
"It is mean to throw her out of her home, te government will end up paying her housing and income support"
Rubbish.. she is 33 years old and there is no reason why she wont be able to work, plus she also has the equity from her house sale too. She wont be on the streets.
Of course she should pay it back!She doesn't need such a big house now.
It's such a sad situation but I can totally understand why they want the money back.
It was paid for ongoing care and that's no longer the case.
I don't like the term 'wrongful birth'. It doesn't sit right with me. I think she should pay it back. I would be surprised if there wasn't a clause, or some small print somewhere that stated this when it was awarded.
I have just had a look at the house on Rightmove
because I am a nosy cow and I live in an adapted house, paid for by an outside agency, next door is adapted for someone totally confined to a wheelchair and I wanted to see how it could be done well. I have to say it doesn't look adapted at all. There is no mention of a through floor lift, there is no wet room just shower cubicles and a bath, the front door and patio doors have a small step to each and the patio is not level to the garden.
As for space, I have a family of four,as do nextdoor, they have a through floor lift in their dining room and I have a stair lift, we cope with far, far less. I can totally see why she wanted the house, it is absolutely gorgeous, who wouldn't?
landofsoapandglory I thought that too, although I don't know enough about it to know what to look for, there didn't seem to be any obvious adaptations and there was no mention of any in the description.
If she got a lump sum then it's hers to keep. If she got money on a schedule to provide for her son then she doesn't need the money now sadly so why would she need future payments.
To the poster who said they should have maybe been monitoring her closer as she was at higher risk of birth defects due to epilepsy medication, why? I don't think they do that, I am pregnant with my second child and have been on epilepsy meds for both pregnancies and have never had any additional screening/monitoring because of it.
If I had a child with Spina Bifida or similar I wouldn't expect to receive compensation as there is only so much they can tell ante-natally.
But she has received the money.
I do think it's a bit of a kick in the teeth to ask her for it back though, this must be an extremely difficult time for her and I can imagine being forced to move from the home she shared with her Son being pretty heartbreaking.
Another one who doesn't "get" the compensation thing - costs of care are the same and are provided for by the state, why should one family be given compensation because a condition was theoretically preventable, while another child with the same needs, just different birth scenario gets nothing?
Such a difficult moral dilema.
I think the trust are at fault for not drip feeding the cash through. A compensation payment should be full and final or x per year with a chunk upfront to buy the house, car, equipment you need.
I think the house is excessive for two people, disability or not. A nice bungalow would have been more appropriate surely.
I'm not really comfortable with suing the NHS for situations like this. I went for my scans, i knew that they are not 100%, nothing is.
She should pay it back, others will benefit. I hope that the trust learn from this.
The house is large and luxurious and I don't blame them for wanting to live in it and I understand that they must be feeling sad that they have to leave the place they shared with him.
However, the family must have been well aware of this possible scenario when they bought the house and they chose to put themselves in this position. This was a child with significant health problems and they would have known that his condition could easily become life threatening. The terms and conditions of such a payout would have been put in writing to them at the time.
The money was only to pay for his first ten years of care so it is reasonable that none was put on one side for his adulthood.
If this money were, in part, compensation for the parents they would be reasonable to keep it but it wasn't. It was to cover care costs that the family would not have incurred had they been able to terminate the pregnancy. The money allowed them to live in a much nicer house than they could otherwise have afforded. They are no longer entitled to the money or the house.
It's harsh but so are lots of other situations like this and many, many parents of children with disabilities are left in far worse financial situations than this lady will have to cope with once the money is repaid.
I am not sure this is a moral issue. it is a legal one.
Either she was provided with interim payments on the basis that the case was worth a certain amount (based on the life expectancy of the child) and now the child has died, the value of the case (as it would have been based on his care needs for life) is much less. The NHS are entitled to seek repayment of any amount over and above what the case is now worth.
Or, the amount paid was part of a settlement package that was based on certain contingencies, one of which was life expectancy. and there was provision for repayment.
If she was awarded a lump sum by the court at a final hearing then there is no legal mechanism for paying it back. AFAIK
Any award in respect of the future care of her child would have been on a periodical basis anyway (i.e. the care paid for annually or periodically) so that just ceases once the person dies.
I think the reporting of this case has been poor, there are not enough facts about the legal basis of the amount paid and the legal basis of recovery, but of course that doesn't make for good headlines in the DM does it?!
I feel for the woman I really do but there is more to this story than moral issues.
I agree with Booyhoo.
Midnightscribbler- compensation is awarded for disabilities where a hospital is at fault in some way- where a child would not have been disabled if the hospital staff had acted to prevent a difficult labour/operation gone wrong, or, in this case, spotted the disability in pregnancy and given the mother the choice to research it/be prepared/or terminate.
That is not to say that the life of a disabled child is wrong, but as a disabled 'child,' now an adult I'll tell you my personal experience.
I lost my severely disabled best friend when he was 17. He had compensation because his disability was the fault of the hospital. It was used to give him the best life possible. He was much loved exactly as he was by all who knew him.
But he- and his mother- were wronged because, had the hospital not made those errors, he would not have been disabled, and there's a very good chance he would be here today.
Compensation can never reverse the error. What we need to do is improve the care given to women in pregnancy and labour and to newborns after birth. But compensation is a great help to families who face high costs to give their children a good life. It is deserved- by children and their families.
I know someone whose DS got compensation because his spina bifida wasn't diagnosed until after birth. Being diagnosed later meant surgery that normally happens at birth was delayed and he ended up more severely affected than he would have been. So it wasn't a wrongful birth, but medical malpractice/negligence
The money is in an account that can only be accessed for his equipment needs though. So he has used some to buy a really good quality wheelchair that is much better than the nhs ones and a special needs bike but he couldn't have used it to buy a nice house.
It's such a sad situation. I don't think she should have to pay the money back now but I do think it should have been awarded differently in the first place eg a certain amount per year to stop if the child dies, similar to dla.
That's what I wondered Ellie - where I work we perform the operation to close the spina bifida, and we are trained in how to nurse the baby from delivery until they are ready for theatre - we wrap the exposed area in cling film and damp gauze, and nurse the babies on their fronts completely flat for example. A baby born in a hospital where the nurses aren't trained to care for them will have to be transferred to a surgical unit, and this obviously leads to a delay getting them into theatre. Usually for spina bifida though the baby isn't regarded as an emergency case - they are put onto a routine list and done in normal hours, unless there is some reason to go earlier. So there is a possibility that if he was born in the 'wrong' hospital there may have been consequences, but he would presumably have had disabilities wherever he was born. There must be more to it, surely? Is she saying that had she known she would have terminated? Because scans aren't 100% accurate as has already been said, you're told that when they do it . I didn't realise that you could sue for 'wrongful birth' in this country
As for keeping the money, then no, she shouldn't, although it is of course very very sad.
Yes her claim was that she would have aborted if she had known the extent of his disabilities. The hospital said that they would only have been able to detect the spina bifada and not his other disabilities and they settled. The settlement was interim, with the plan to do a reassessment when he was older and then make a final settlement then (I saw something suggesting a full settlement of $6M was anticipated). The negotiation was not for pain and suffering (this isn't really used in UK law) but for the costs over and above raising a not disabled child.
I don't know, the money has already been spent on buying an appropriate house for th child's needs, it is very unfair to turf her out. If there is any money left she should pay it back.
Mabey she could buy a much smaller house and give the rest back.
Samedifference, the situation you describe is to the same as the one we are talking about here.
There is a very very big and significant difference between hospital care causing a disability, and hospital care failing to pick up a disability before the child has even been born. With the latter, the disability would have been present no matter what the hospital did or didn't do.
I find it very distasteful that this woman was given 'compensation' because she didn't have the chance to abort in the first place.
CloudsAndTrees- I know the situations are different. I was responding to a poster who said that they do not agree with compensation as the life of a child can never be wrong. That compensation suggests people have been wronged.
In this case the mother clearly felt she had been wronged by not being given the choice to abort.
I know she felt she had been wronged, but that doesn't neccesarily mean she was. I don't know, maybe her child wouldn't have been as disabled if they had known before the birth and had been ready for his arrival.
My main issue is that she shouldn't have needed to try to sue. She was put in that position partly because our country does not adequately provide for disabled people and their carers. I just can't get my head around the horror of having to say you would have aborted your child just so you can get adequate provision for them. Maybe she genuinely felt it, but she might not have done.
She no longer needs the money. It is not there as "compensation" for her, but in order to give her child the care he needs. As he is sadly no longer in need of it, she has to give it back.
I can't believe how many saps believe a woman should be able to hold onto what is effectively a lottery win because the family member who the money was intended for unfortunately died earlier than expected. It's exactly the same sappy emotional blackmail techniques that many 'charitable causes' now operate with to extract money which very often makes the wrong people very rich.
Gosh, what an emotive case. My heart goes out to her, but I can't see on what grounds she should keep the money.
OP, can you explain why you think she 'deserves' it exactly?
She gave up 6 years of her life to care for her son. Anyone who does that deserves as much money as they can get for loss of earnings, and the emotional stress of having a disabled child.
I've been disabled since birth and if she was my mother, I would want her to keep the money and use it as she wished.
I don't think she should be able to keep the money.
What she said in court, to get the money in the first place, was "I want money because if you had notified me of this condition before birth I may have had my child aborted". Which to some people would be fine. But not clever people, surely?
She wanted money because she may have aborted her child had she known.
She got money. Which she used to buy herself a £400,000, GIGANTIC house.
Now she's saying she doesn't want to give the money back because it was given for her to look after her child etc etc. But.. she bought a house. A fecking huge house.
I could understand if she'd used the money to buy a bigger house so's to be able to make changes for the kid, like if he needed a walk-in shower room for example or other needs based on his disability. But looking at the photos, this hasn't been done. It's just a great big fancy pants house. She claims she'd be "homeless" if she moved out because the NHS wants £300,000 from her.
£420,000 (asking price) - £300,000 (NHS) = £120,000.
How many homeless people do you know who have £120,000 in the bank?
I don't think she should have gotten the money in a giant lump sum in the first place. On top of that it seems she used the majority of the money on herself (I can't imagine a 6 y/o would have picked out that exact house on their own...). On top of THAT she now wants to keep money that was intended for the child's medical bills.. a child who has sadly passed away. If her child had been 18 or over it's possible the money would have gone to him seeing as he would have been an adult. So.. why does she think she should keep it?
All my condolences on the passing of the child. all my WTF's on the claim to keep the money.
Also, op said
"^She gave up 6 years of her life to care for her son. Anyone who does that deserves as much money as they can get for loss of earnings, and the emotional stress of having a disabled child.^"
Well. This is true. But unfortunately the world doesn't work that way, so it's sort of tough luck for her in terms of keeping the money.
True but no one actually gets money for.
My DGM has looked after me since I was 11, there has been many many times where I haven't even been able to sit up in bed or get up and she has never got a penny and she didn't even choose to have me.
Unfortunately the money isn't there and although it must be heartbreaking for her, I can see why the would want the money back. It could go to someone else who needs it.
Sorry, she has looked after me since I was 3*, I've been obviously disabled since 11.
Eatenbyzombies- she did say the house was adapted to meet the child's needs...
It is really sad that her little boy has passed away, but what is she going to do living in a large house with has been adapted for a disabled person?
She is young enough to look for work and start continue with her life.
The compensation was there to provide for her son's health needs, she needs to give it back.
deserves as much money as they can get for loss of earnings
I disagree. They 'deserve' as much money as they and the child need. Loss of earnings has to take into account how much that person actually earned and could reasonably expect to earn in future. i.e. someone who usually earns £15k a year and has to give up work cannot claim the same loss of earnings as someone who usually earns £60k. She lived in a bedsit when he was born so I'm assuming her earnings were minimal.
and the emotional stress of having a disabled child
Her son's disability was not caused by the NHS or through negligence. It is possible that she could've had the option to abort had she had the opportunity, but that is not the same as them causing the disability he was born with.
I couldn't guess how many thousands of people there are in the UK living through as much heartbreak and caring for their disabled children without the financial help that she has had. Even after she has paid back the money, she'll be left with a capital amount that most people in this country will never have and she can use that to train for a career or start a business and look after herself financially.
The compensation was award to the child, when he died it should go to his next of kin,
unbelievably vile to make someone lose their home as well as their child.
Why should it go to his next of kin? The money was awarded for the needs of the child. It is not an inheritance or a lottery win.
There are thousands of disabled children and their carers in desperate need. She does not NEED a big, specially adapted house any more. It is very sad, yes. But you need to look t the bigger picture.
It is a very sad case. Emotion tells me that it would be cruel to turf her out but logic tells me that it's not her money, it was her son's money. She did not need such a big house, simply an adapted or accessible one.
even if anyone felt that some money should be repaid it definitely shouldn't be half.
eg the house and the adaptations, loss of earning to care for ds for 6 years, loss of future earnings due to loss of any career etc would mean that probably only a tiny proportion would cover care for the remaining 4 years to cover more basic care (As adaptations already done regardless of how long he lived) would be a much smaller percentage.
I know a young adult who grew up in care and won compensation for medical negligence. Social services are now trying to claim back the cost of past care. Never mind that the award was given to cover the cost of future care which social services will no longer have to provide.
I hadn't read of the case of the child with Spina Bifida but what I do know from experience is that adaptations do devalue a house and as other posters have stated the money would have been paid by annual amounts which will have ceased on the childs death. There might have been a lump sum paid to the mother as compensation and maybe it was well invested, if so I think she is entitled to keep this.
Well fuck me, she's said she adapted the house for the child's needs? I call bullshit based on what I've seen/read. It looks too much to me like the money was used for personal gain than the child. There is absolutely no sign that any child has lived in that house, and if she's lost her child she's not exactly going to be throwing their stuff away and redecorating so soon.
Basically, she shouldn't keep the money, she seems to be thinking more of herself from my point of view, and this thread seems to be more of an "agree with me - she should keep the money!" thread than a discussion thread. Me and others have brought up other points and you just go "yeah but..."
I think it's easy for disabled people to feel entitled when they shouldn't be. I've had Aspergers since birth but it took 16 years and a foreign health system to actually diagnose it. I feel like my parents should have compensation for all the years my mother was ignored when told doctors that there was something wrong with me, but that doesn't mean she's actually entitled to compensation. there's a difference.
I loathe this kind of compensation culture, the taxpayer and non-taxpayer paying for her 4 bedroom house, and now she goes to the papers to complain.
The money was to use for a child who is no longer here.
It is only logical the money be returned, (that was not used on the child's needs).
As far as a mother giving up 6 years of her life to care for her own child, that is just nonsense. That is a parents responsibility.
My friend's brother was disabled, and required adaptations. After he died, they were advised by their estate agent to remove the adaptations before trying to sell the house, as they didn't give of the right impression. As the son passed away in November 2011, it's reasonable to assume this mother may have done the same.
I don't really understand why the money was paid out in the first instance.
Of course she must pay it back as the child, sadly, is no longer alive and requiring the funds.
The money was never for the mother.
It's quite easy to see how the lady's antenatal care could have been mismanaged. Anyone on ANY epilepsy meds that falls pregnant, for a start, should be put on a FAR higher dose of Folic acid than normal - 5mg as opposed to 400 micrograms - more than 100 times as much.
If she wasn't advised by anyone overseeing her medical care to do this, then they ARE being negligent, and raising her risks of having a child with Spina Bifida IMMENSELY.
Also, you then get into the fact that Epilim in particular (sodium valproate) has LONG been known to be teratogenic by the pharmaceutical industry, and also my the medical professionals, and in particular raises the risks of Spina Bifida hugely.
There have been plenty of legal issues surrounding this, but it should have been advised to her that to lower the risk of Spina Bifida, once pregnant, she should be on a 5mg/day dose of Folic acid.
And if her pregnancy was planned rather than accidental, then any medical professionals should have referred her to her Neurologist to discuss alternative epilepsy medications due to the teratogenic risks of Epilim in pregnancy.
There are plenty of other epilepsy medications that have a far lower, barely higher than normal, risk of birth defects than Epilim.
It is for this reason that the Association of British Neurologists doesn't recommend Epilim as a first line treatment for a woman of child-bearing age now.
And then there is the fact that the Spina Bifida was not picked up on her anomaly scan. Which it SHOULD have been, as the Mother was known to have both epilepsy and be on Epilim, thus raising her risk factors dramatically.
The anomaly scan should have been performed by a senior sonographer WITH a Paediatric specialist present to look specifically for any signs of Spina Bifida.
So IMO, the woman's medical care WAS negligent.
And, harsh as it is, and I'm sure she loved her son dearly whilst he was alive, she has stated that she would not have continued with the pregnancy had she known prenatally that he had Spina Bifida.
And this is ENTIRELY her choice. It is a difficult decision, you only have to look at some threads in here to see how conflicted these decisions are when it comes down to it, but she feels, rightly or wrongly, that she would have had a termination.
I personally wouldn't do that, at least not with my first 3 DC's, but by the time I was pregnant with my fourth DC, I really wasn't sure whether I would continue with the pregnancy had I been found to have a DC with a disability, as two of my older 3 DC's ARE disabled, and have SN's, and I didn't think I would be able to cope with another DC with disabilities, given the fact that I am also disabled.
OK, it has ended up that my (much loved) DC4 HAS got SN's and disabilities that CAN'T be found out prenatally, and I'm having to cope, but I can't castigate her for her feelings. They are as valid as mine.
I say all this as someone who HAS epilepsy, and has in the past been on Epilim, though NOT whilst pregnant, but has had two pregnancies whilst being on epilepsy medications.
However - do I think that she should have to pay this money back? Well, that's debatable. To be perfectly honest, I feel that these awards of compensation for medical negligence shouldn't all be lumped together as one payment.
I feel that she should have got amount 'A', as a lump sum, as set up costs for ongoing care - with support on finding the best possible adaptations and adapted property for what would become her DS's ongoing needs.
I then feel that she should be given amount 'B' to cover HER lost earnings and earning potential. NOT as a lump sum, but as a monthly or annual amount that would match her previous earnings + wage progression that would likely have been expected for her career. As this is monthly or annual, this should be ongoing (as a top-up when work recommences) until such time as her earnings match that amount. If her earnings never fully recover, then she should continue to get a small amount each month or year.
As her earnings and earning potential would have been directly affected by the NHS's negligence.
I then think there should be amount 'C', paid into a trust, to cover her DS's lost earnings. Taken at an average wage, paid annually and therefore up rated to whatever that year's average wage is. For his lifetime. This will pay for his care as an adult. THIS, and only this, should be repayable in it's entirety if the recipient died before their 18th birthday.
Then amount 'D', paid monthly or annually, to cover his care costs between birth and 18. This then would not need major repayments if he died earlier than expected.
If the majority of these are paid annually or monthly, then there won't be huge repayments due in the event of an earlier than expected demise.
And the set up costs should be unable to be clawed back.
I DO think her choice if house was unsuitable and almost like profiting from her DS's disability at the expense of properly adapting a house for his needs, though...
<<Splinters in arse>>
As I said, there IS a high chance that if the NHS hadn't been
in the pockets of the pharmaceutical industry, just Google sodium Valproate syndrome negligent by not advising her correctly on ways to minimise risks to her foetus during pregnancy, that her DS's Spina Bifida could have either been avoided, or have been nowhere near as severe.
That IS negligent. And while it may not have prevented her DS's disability, it equally may have, had she been advised to take a far higher dose of Folic acid from pre-conception, and been advised NOT to fall pregnant whilst on Epilim.
The medical professionals WERE negligent for a VERY long time wrt Epilim and birth defects, they have known if the risks for at least 15+ years, yet were not advising women of the teratogenic risks of falling pregnant whilst taking Epilim (or generic sodium valproate), OR advising them to take a higher dose of Folic acid pre- and post-conception to minimise the risks.
This is a tragedy, but maybe it will bring to the country's attention how the medical profession and the pharmaceutical industry HID the risks of Epilim for years, despite full knowledge, and WERE deliberately negligent in not just this woman's case, but literally thousands of others too.
Information about the class action that had to be abandoned due to changes in legal aid
It's all out there on Google - go and educate yourselves!
The very fact that the NHS HAVE paid out this money is an admittance of negligence.
Far better to pay out in two or three cases than have a class action by 100 parents won, opening the floodgates for ALL parents whose DC ended up with birth defects as a result of Epilim/sodium valproate to claim for future care costs as they weren't even INFORMED of the risks of taking Epilim (the Patient Infirmation Leaflet was only changed in 2009, despite the fact that the pharmaceutical companies and the medical profession KNEW of the risks in the early 90's...).
I absolutely CANNOT stand by whilst people say that she shouldn't have got compensation in the first place, when her DS's care needs may have been avoided, had she only been given advice by the medical professionals in her case about the teratogenic risks and ways to minimise those risks.
I can't believe how little most people know about this issue.
When I was pregnant with the baby that I lost (for a reason unrelated) in 2008, I had been on Epilim just prior to conception. Not ONE medical professional informed me of the risks.
As I was concerned I had to research in worldwide epilepsy fora , Epilepsy Action and heavily medical papers to find out the teratogenic risks of being on Epilim so close before my pregnancy, and of my new (back then) medicine of Gabapentin.
Because EVEN WHEN ASKED, nobody in the NHS would answer my questions about teratogenic risks of either drug, and none if them advised me that I should be on 5mg a day Folic acid rather than 400 micrograms.
I took what I had found to the GP, and he admitted that it would be in my best interests to be on the higher dose of Folic acid, and prescribed it.
THAT is how hard it was to find out the risks of Epilim. And that was only in 2008.
It was a year later, just 4 years ago, that the teratogenic risks were put on the patient information leaflet.
(Can you tell this is something I have very strong feeling on?!)
I posted threads about this a couple of times over the years, under old names, and only got a handful of responses each time.
So while this is a terrible tragedy for the Mother concerned, I can't help but think that it is in some small way going to raise awareness of the lengths the pharmaceutical industry went to to disguise the harmful side effects of their drug.
It's not the first drug that has had serious side effects known about, but hidden from patients, all in the name of profit, either.
Really informative posts CouthyMow
how nice for a child when their mother sues the nhs because she wished she had aborted : (
You are saying that her doctor (who might not have known she was trying to get pregnant) should have told her to take a higher amount of frolic acid, especially because of the drug she was on (when the information wasn't widely available and the doctor might not have known the risks as it wasn't included in the drug information).
I am a huge believer in personal responsibility for healthcare. I never just accept what I am told by the doctor. I take that information and do my own research.
Your posts seem to imply that the medical negligence goes further than not spotting the problem on the ultrasound scan. There is no reason to believe that that is the case.
While I truly understand what you are saying, and agree that there have been serious wrongdoings in relation to the drug, there is nothing in this case (from what I have seen) to suggest that she was given incorrect information ref folic acid, and to suggest otherwise IMO is wrong.
Xylem I don't think it is as simple as that. Some people wouldn't be able to/felt they couldn't cope with a child with serious disabilities.
While I wouldn't personally abort, I don't think it's right to judge those who would, especially in this situation.
As someone who is disabled and needs help quite a lot, I can see why someone would make that decision.
I've given up 6 years of my life to care for my child, does that mean i deserve a big pay out!? Silly argument. That is what you do when you have a child. The money was for his care , not compensation for her loss of earnings. Sadly, he no longer needs it, so give it back so it can be given to someone that does.
As for the choice to terminate, it still doesn't mean money is the answer, money is not related to a life lived.
but pendip - if your dc was severely disabled you don't have the choice of working - whereas I with my nt dc have the option of using childcare while I work.
I don't think she should keep it. At all.
The money was for the child, not her.
I don't believe she wants to stay in the large house 'for the memories', she wants to stay because its a large house that she couldn't afford otherwise.
newatthis - like in financial situations customers have greater protections as they are to be assumed to have less financial knowledge - the same is true in the medical world - it should be assumed that the patentable a lay person does not have medical knowledge. Nor should it be assumed that they have skills to research the case themselves to ensure that the Dr has done their job correctly.
additionally - Drs are paid enough to assume that they do their own research to ensure that the advice that they give patients is whole and correct - failure to do so costs people their health and sometimes their lives and should not be tolerated with the argument "well they should do their research"
but pendip - if your dc was severely disabled you don't have the choice of working - whereas I with my nt dc have the option of using childcare while I work.
ps surely the impact of the drug on potential pregnancy should be advised to any woman of childbearing age as a matter of rule - no assumptions should be made of the woman's intentions relating to potential pregnancy.
Maddening, read what I wrote.
The information that CouthyMow was giving was not widely available at the time. There is absolutely no reason to think that the doctor had the information. Indeed there is absolutely no reason to think that the doctor was in any way at fault. So suggesting that this 'may' have helped is misleading.
She also suggests that this information might have been accessible online. It is not a doctor's remit to be googling all the medicines that s/he prescribes in case there is some problems that are being observed that have not been passed on to the medical profession.
If that information was ''googleable" then that would be up to the patient to find. I don't want my doctor to go by hearsay found online. I do think though that every individual should have a stake in their own healthcare. If someone with health issues is planning pregnancy, they shouldn't assume that their gp will be an expert in that combination. GENERAL practitioner. GPs are not specialists. I have previously given my GP info on my specific health issue. My GP is fantastic. I moved to a practice a few miles from my home specifically because she is so good. But she acknowledges she doesn't know everything. Research means information can change rapidly. And sometimes I get information quicker than my GP.
Maddening - the information wasn't widely available at the time. It only went in the leaflet in 2009.
Malarky It is only since this thread that I have learned there is an increased risk of Spina Bifida/disabilities when using epilepsy meds and that you should be on a higher dose of folic acid.
I'm 30 weeks pregnant with my second child and on max dose pregabalin, just as I was with DS. Am on normal dose of folic acid after blood results came back that I am low on it, I wasn't on it previously.
If there are specific problems that are associated with these drugs, surely we should be given the information.
I was told it's a "benefits outweigh risks" situation but that's all I have been told.
Schro, I'm glad you read this thread, and got the information.
Nowhere did I state that CouthyMow was wrong to give the info she did.
I think it is wrong that she has suggested it might be relevant in the particular case we are talking about.
And thank you for confirming what I have been saying - that it is in people's best interests to take an interest in their own healthcare and do their own research.
No, I didn't say that you thought she was wrong for it.
I was just addressing the fact that we are now in 2013 and Doctors are still not giving proper advice about these drugs.
I normally do my own research but seem to have missed these points about anti-epileptics as guidance normally always just says "if benefits outweigh risks" without going into detail.
Glad I read it too!
However, I guess this is a bit of a thread de-rail on my part
Schro - I've just googled the pregabalin information sheet, and it specifically states that you should speak to your doctor if you are planning on getting pregnant so that you can be referred to a specialist to be given advice.
I don't understand how a decision that most people would not judge (having an abortion because you find out from your scan or similar that your baby has a severe birth defect) becomes totally distasteful when taken in the context of post-birth.
It doesn't mean you don't love your baby, it just means that you can recall how you would have decided differently.
I did, I was just told "if benefits outweigh risks" and was given no more info on that or why that was the case.
Now that is poor Schro especially as there is something cheap and easy that could help reduce the risks.
Still not sure if this is just concerning that one particular anti-convulsant though? Not mines so maybe there isn't much to say about it?
I disagree - if a medical professional os prescribing ANYTHING they should be fully aware of any side affects. If the gp had not got the knowledge to ensure that they prescribe and advise correctly then they should refer to a specialist or seek advice.
And if a dr should not be googling "hearsay" why on earth should a layperson be expected to google with no medical knowledge - and why is it assumed that the patient is computer literate with access to a computer?
The responsibility I am afraid ends with the health professional - that is what they aree trained and paid for.
Ps not necessarily relating to this case but to this attitude in general re the responsibility of prescribing GPs and the responsibility of the patient.
Schro - you should be on a 5mg a day dose of Folic acid if you are on ANY epilepsy meds.
I had to take it whilst on Gabapentin.
Thanks Couthy, I will speak to my GP about that as I don't see a Consultant this time.
Maddening, how can they be fully aware when, in this instance, the Information had not been made available?
And I find it awful that you weren't told of this.
And as for the GP's 'not knowing', that is a pretty poor show on the part of the GP, when the effects of Epilim have been known to the pharmaceutical industry and the medical profession since the early 90's.
And when you consider that these anti-convulsants MUST originally be prescribed by a Neurologist, you would hope that a Neuro would have up to date knowledge about the drugs they were prescribing for epilepsy.
And in fact, the medical profession DID have this information - but were told NOT to tell patients by the pharmaceutical companies. Look into research funding agreements etc - the majority are funded by the same pharma companies that were trying to keep this under wraps.
Research institutes were threatened with having funding pulled if they made this public.
And yet STILL women of childbearing age with epilepsy are not being told by the medical professionals involved in their care to take a higher dose of Folic acid, a relatively cheap drug, especially when compared to the cost of care needed for a DC with Spina Bifida.
and to hear about that.
Why aren't you under a consultant this time? With epilepsy, you should be. Anyone with a pre-existing chronic health condition would be in my PCT.
The GP may not have known - but should have. It WAS common knowledge in the medical profession from around 2000. It just wasn't (and obviously still isn't) communicated to PATIENTS until 2009.
It's max pregabalin I am on, it's not for epilepsy but for neuropathic pain relating to my Ehlers-Danlos.
I was booked in with a Consultant but he said he didn't think there was any need for a repeat appointment unless there was a specific reason. He did acknowledge that I am on Pregabalin but didn't say anything about it.
Just wondering a bit now as both DS and I have those weird dimples at our bum crack [TMI!] and I don't know if that means genetically a child of mines would be more at risk of Spina Bifida?
No idea about this area of medicine tbh. Thank you for the advice.
Eaten ByZombies- I was looking for discussion and views from this thread, not agreement.
I'm not surprised by your view, I was expecting many others to share it.
To the person who said adaptations devalue a house, I say 'what on Earth?' Personally I would've thought adaptations add value to properties.
To the person who said estate agent advised adaptations to be removed as 'would not give the right impression' I say 'how rude of that estate agent' almost disablist.
Horribly cruel case. The NHS was clearly negligent - repeatedly so. That is accepted as a fact, otherwise they wouldn't have paid out. (I have epilepsy and fortunately was properly looked after before, during and after pregnancy. There is no excuse for what happened in this case, none at all.)
The lawyers are being cruel by clawing back the money. Had the doctors not been negligent and frankly unfit to look after any patient, this women's life wouldn't have changed to such a huge extent. It's not just the costs of looking after her son, it's the impact on her life, her earning potential, her housing... I doubt her son would have died without this almighty medical fuck-up.
I hope the doctors involved were struck off, or at least disciplined and had restrictions put on their practice. And in a sensible, practical, fair world, the NHS Litigation Authority would be firmly told to fuck off as well.
(And yes, adaptations do devalue a house, because people who don't need hoists or accessible bathrooms or whatever don't want them.)
edam The payment was "sorry we fucked up, we'll cover for your son's care" not "sorry we fucked up, here's a lump sum of money for you to spend". As sad as it is, she is not legally entitled to the money and if she sold the house, she would not be homeless as she would be entitled to some of the money.
To be fair, OP, I do agree with you on that adaptions should (surely) add value - another family has no need to make the adaptions! Although this can depend on what sort of adaptions have been made.
Wanting a discussion or not was just what I felt. No hard feelings
No hard feelings at all, Eaten byZombies. This is the point of blogging and discussion!
To be fair, OP, I do agree with you on that adaptions should (surely) add value - another family has no need to make the adaptions! Although this can depend on what sort of adaptions have been made.
That is not the case. I've been involved with running a city-wide register of adapted housing and it is very hard to match needs to existing adaptations.
This is a large, expensive house and, in reality, the numbers of people with a family member with this sort of disability who could afford this sort of property would be very, very small.
However this is also a scenario that the family in question should have made allowances for when planning how to spend the money.
A very emotive case. But she was awarded this money to see to her sons care needs, and sadly he has died. There are many many children with spina bifida and other severe disabilities who are in need of the money. For goodness sake there are some hospitals which are in need of vital diagnostic equipment but the government won't cough up so individuals are fundraising (paediatric MRI scanner in my local hospital)
My close friend has a seven year old son who has the same type of spina bifida in question. She is in receipt of benefits due to his care needs (he is a fantastic boy by the way) but now that he is older she needs a house that is adapted for wheelchair use, wet room, ground floor access (he is over weight and my friend can't lift him anymore) Anyway she found a house to rent that is adapted but has to pay nearly £400 out of her own pocket (the DLA does not cover this) to make up the rent. Her son also really loves swimming but she needs a specialized swim nappy for him that she can't afford (and the NHS say they are not responsible as it is not a necessity).
I can't see why she would need to keep the money, but of course she wants it. I also don't see how a five bed luxury house was necessary for her son's needs. I most certainly wouldn't begrudge her the money whilst her son was alive, but sadly he isn't now so I do think it should be repayed. A newspaper article said a forced house sale has never been mentioned, and I can't see her being homeless if she has the cash proceeds.
Adaptations only add value if another family looking for a home at the point when you are selling need them. That's a pretty niche market. All of the selling your house advice tends to be about how to make your home appeal to the largest number of people possible. So I can quite believe an estate agent might recommend removing major adaptations.
For example my cousin is severely physically disabled and has a special bathroom where he can get into his shower in his wheelchair. The shower is not like a normal shower at all, it's much more like hospital equipment. I doubt anyone would think it attractive or appealing, and very very few families would need it.
It might also be worth bearing in mind that spina bifada can manifest differently (for example I knew a child with spina bifada who walked with calipers but had learning disabilities and another who was very intelligent but paraplegic) and that this particular child had other significant disabilities (the legal reference includes a dispute about another disorder, but it is a direct result of taking valproic acid, so again linked to the epilepsy medication).
Yes, maddening, but now her son has died, she Can go out to work, can't she? Sad, but true. The money was to pay for his care , now she doesn't need to pay for care , she shouldn't have the money.
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