To think this mother deserves to keep this money?

(125 Posts)
SameDifference Fri 17-May-13 01:18:54

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.

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.

NewAtThisMalarky Sat 18-May-13 09:56:53

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.

Saski Sat 18-May-13 09:59:01

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.

NewAtThisMalarky Sat 18-May-13 10:17:21

Now that is poor Schro sad 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?

Gah! confused

maddening Sat 18-May-13 10:29:25

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.

maddening Sat 18-May-13 10:32:48

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.

CouthyMow Sat 18-May-13 10:39:04

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.

NewAtThisMalarky Sat 18-May-13 10:42:23

Maddening, how can they be fully aware when, in this instance, the Information had not been made available?

CouthyMow Sat 18-May-13 10:45:40

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.

sad and angry to hear about that.

CouthyMow Sat 18-May-13 10:47:33

<<Thread derail>>

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. confused

CouthyMow Sat 18-May-13 10:49:07

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.

SameDifference Sat 18-May-13 12:34:25

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.

edam Sat 18-May-13 12:57:43

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.

edam Sat 18-May-13 12:58:26

(And yes, adaptations do devalue a house, because people who don't need hoists or accessible bathrooms or whatever don't want them.)

crashdoll Sat 18-May-13 14:49:00

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.

EatenByZombies Sat 18-May-13 17:31:59

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 grin

SameDifference Sat 18-May-13 17:45:11

No hard feelings at all, Eaten byZombies. This is the point of blogging and discussion!

Goldmandra Sat 18-May-13 17:57:23

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.

Madmum24 Sat 18-May-13 18:40:34

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.

nooka Sat 18-May-13 20:51:54

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).

Pendipidy Sat 18-May-13 22:03:12

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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