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Share your dilemmas and get honest opinions from other Mumsnetters.

To think this mother deserves to keep this money?

124 replies

SameDifference · 17/05/2013 01:18

Hi all,

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.

OP posts:
EatenByZombies · 17/05/2013 23:30

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.

Biscuit
OhLori · 18/05/2013 00:52

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.

MusicalEndorphins · 18/05/2013 01:38

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.

MrsFionaCharming · 18/05/2013 01:41

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.

Selba · 18/05/2013 02:06

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.

CouthyMow · 18/05/2013 02:20

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...

ClocksInALine · 18/05/2013 02:31

No she doesn't need it.

CouthyMow · 18/05/2013 02:38

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.

One case

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!

CouthyMow · 18/05/2013 02:53

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.

CouthyMow · 18/05/2013 02:58

(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.

cinnamonsugar · 18/05/2013 07:40

Really informative posts CouthyMow

xylem8 · 18/05/2013 07:56

how nice for a child when their mother sues the nhs because she wished she had aborted : (

NewAtThisMalarky · 18/05/2013 07:59

So, CouthyMow

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.

SchroSawMargeryDaw · 18/05/2013 08:01

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.

Pendipidy · 18/05/2013 08:15

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.

maddening · 18/05/2013 09:17

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.

Astley · 18/05/2013 09:19

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.

maddening · 18/05/2013 09:24

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"

maddening · 18/05/2013 09:28

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.

maddening · 18/05/2013 09:30

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.

NewAtThisMalarky · 18/05/2013 09:44

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.

NewAtThisMalarky · 18/05/2013 09:45

Maddening - the information wasn't widely available at the time. It only went in the leaflet in 2009.

SchroSawMargeryDaw · 18/05/2013 09:49

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.

NewAtThisMalarky · 18/05/2013 09:52

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.

SchroSawMargeryDaw · 18/05/2013 09:56

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 again.

Apologies.