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Problem with NHS and Child Social Services


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This is difficult.

 

It sounds to me that the NHS was brilliant in many ways. I totally agree they were, individually, as a team they were uterly useless but that starts a whole new chapter so I won't go there.

 

Your story, however, rings so many bells for me.

 

I am almost convinced by your description of your wife's symptoms - stupor, almost dementia like - were caused by the dosage of Epilim being increased too quickly, because the medical staff were acting upon results of the standard blood test. It went up like a rocket but there was hesitance to bring it down as quick, that also speaks a million words....hmmm

 

Your wife's and your own wishes not to increase the dosage were ignored. Please don't read too much into this, I had to mention it because that is how it happened but we DO have a fantastic relationship with the E.S.N and she was doing what she thought best for both my wife and unborn child - My wife and I had/have a different opinion but that was based on emotions not medical knowledge and I cannot honestly say that if the roles were reversed that I wouldn't do the same. Medically, she was right and we had a lovely, healthy baby girl and I don't think for one second that the E.S.N anticipated the reaction or indeed the referal being made.

 

I can only suggest that you ask for the blood test results just to confirm that unbound levels were not checked and then make an appointment to see the neuro to discuss your concerns. I am on this You will not be able to prove now that your wife was suffering the side-effects from toxicity. We'll see what the notes say but proving there was side effects will be easy, proving it was due to the epilum wont, unless I can get the E.S.N to confirm it but as it was her/the neuro's call that may be a little difficullt.

What I find so frustrating about the medical profession - and I am sure that it exists in other professions too, but most of them are not life or death - is the unwillingness to listen to the patient and their families and an inability to acknowledge mistakes and learn from them. I'm starting to find this out.

 

I don't know what your relationship with your neuro is like, but I do hope that something positive comes out of this and that policies and procedures with regards to patients with epilepsy change so that others do not suffer the same fate. I have total respect for him but as for realationship, there isn't really one. We speak to his secratary more than we speak to him but like I say, our first port of call is the E.S.N who has direct access to him but she also has a wealth of knowledge

 

I know I keep banging on about this but it is the lady (BTW I do know who this is but don't want to name names on a public forum at this stage) who made the referal who in my opinion should be made to justify her actions. She did something with complete ignorance to the facts and didn't see past the end of her nose, I strongly suspect that it was purley a time thing and rather than study pages of documents and have numerous conversations she just though a quick referal would cover her bum without even a second thought to the implications that has.

If mistakes were made by people in the NHS (IMO they were) they were that, mistakes, they can be forgiven and forgotten. However making a referral just because a situation is out of your remit (in her case epilepsy) then I find that completly out of order.

When I recieve the SAR back I suspect I will not find many notes on her reasoning when making the decision for a referal.

Regards

Chris

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Sali, when I said "My wife and I had/have a different opinion" i meant we as a couple had a different opinion to the E.S.N - not each other.

 

Just re-read my comments on your post and that wasn't very clear:-)

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I would be very interested to hear the outcome of this.

 

I remember being told by a consultant that I couldn't prove toxicity. I was almost tempted to get a hair sample tested. Yes, the notes should list the symptoms (although I often found big chunks missing because the nursing staff have so little time) but getting a medic to admit failure/lack of knowledge will be the hardest thing.

Edited by Sali
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Your ire at the lady who referred your wife to social services is justified, but also question the system that allowed her to unilaterally make such a decision. It also reeks of poor communication within the department and management failure.

 

And, at the end of the day, it may be proved that the whole situation only arose because the symptoms of toxicity were not recognised.

 

I suspect your enquries will hit a brick wall or everyone will blame everyone else and nothing much will change. Take my word for it, don't just accept their word that procedures have altered (standard practice to complainants), ask to see the document.

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One last question.....

 

Assuming the communication doesn't go...

 

Me - Can I have your notes/reports

Hospital - Here you are:)

 

What exactly MUST they give under a SAR?

 

I expect this to take a few weeks to sort out and I intend to send a SAR to the GP, E.S.N, Hospital, Lady in charge of Child Protection and the Social Services.

 

If they are all forthcoming that would be great as it should build a "real-time" picture from everyone involved points of view and in theory one report/note should lead into another and "marry up".

 

I just get the feeling that the first responce is going to be "due to some Act or another - we don't have to supply you with that"

 

Are there any ideas on what I am likely to face over the next few weeks in responce to my request for the information pertaining to the pregnancy?

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Ask PALS for the form. It is your wife who should make the request (Subject Data Access request) and basically she is entitled to any document of which she is the subject. So it could be a letter from social services to the hospital consultant, but if your wife is the 'subject' of its contents, a copy of that document should be provided. There is a caveat in which data can be withheld if it is deemed to be damaging to the individual (I cannot remember the exact wording but it's something limp about may cause mental suffering blah, blah, blah). The other point is that you may not know that a crucial document is being withheld because you are unaware of its existence. However, you should get all the drug tests, nursing notes etc and you will know if these are missing. Applying for the data from so many different organisations may be costly. They can charge a maximum of £50 - or it was that one year ago.

 

If you are going to make a formal complaint against the hospital (it may be the same for other organisations) you need to do this within six months of the incident.

 

I think once your wife makes the request, there may well be a suspicion that you are intending to launch legal action and you could find that they 'circle the wagons.' So if you intend to have a face to face with anyone to innocently glean information, do it beforehand.

 

Good luck. As I said before, I am extremely interested in the outcome.

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What I am getting at is SHOULD THE REFERAL HAVE BEEN MADE? There was clearly enough professional support and close family support available, combined with the fact that the over medicating was done under their roof against our wishes. The E.S.N at the meeting even told of single parents she has as patients with worse Epilepsy stability than my wife who cope well with having a baby. Of course, it was too late for the social services to back away now, they were legally obligated to investigate.

 

Yes definetly - The referal was not made on medical grounds but on the basis that your wife has previous history where she was injured during a fit and the way that she presented following the medication. The person referring from the hospital and the social worker would need to be satisfied that your baby could be left alone with your wife without being in danger if your wife had a fit. I don't see what your complaint is here.

Consumer Health Forums - where you can discuss any health or relationship matters.

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I used to work in Child Protection and the referral made was quite correctl and in line with current procedures.

 

Without doubt Social Services and the other professionals are ensuring that your beautiful little girl is safe - given your wife's medical problem. There is no way your child would be removed into care, as you are fit and healthy and your wife's medical condition can be managed.

 

Accept all the support to show that your daughter will be in a safe environment.

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I think it always good to have other points of view, but I wonder if they would hold the same opinion if they were put in a similar position.

 

Think if your neighbour saw you lightly slap your child for example and reported you to social services. How would you feel if they then interfered in your life, questioned your ability as a parent? Would you just see it as them doing their job or would you be mortified and humiliated? Yes, there are good reasons to call in social services in certain circumstances, but this scenario, from the facts we have, was definitely not one of them. Social Services seem to be stretched to breaking point already, without adding unnecessarily to their burden.

 

If - and it's a big IF - the medics were purposely over medicating the OP's wife to protect her, then why did she get 'assessed' in this condition when logically, considering the side-effects of AEDs, the results would so obviously be defective?

 

Is it possible that one lady (we don't know what role she had) was unilaterally allowed to refer the OP's wife to social services, without any discussion with the OP, other members of staff caring for the patient, with the consultant or neurologist?

 

There's something rotten here. Poor communication is certainly one of them. My bigger worry is that there is an ignorance of epilepsy in the general medical population (outside of the specialists) and the drugs used to control it.

 

I do think the OP should make a formal complaint. I would like there to be an investigation to review processes and procedures dealing with patients with epilepsy and if there have been failures to ensure that they are not repeated for this or any other patient. Theoretically, this is how we improve services.

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