Problem with NHS and Child Social Services

[Chris1933]

I have a bit of a situation and any help would be appreciated.

It’s quite a long and ongoing saga so in the interests of not having a ridiculously long introduction I have summarised the basics below and will elaborate if required later.

I suppose the best place to start is 2 years ago, my wife is Epileptic and at that period in time the Epilepsy was poorly controlled and in September 2008 she had a tonic clonic seizure whilst using an electrical appliance and burned the house down and sustained very bad burns to her lower body.

After several skin grafts and therapy combined with my wife Epilepsy becoming stabilised I am pleased to say we have moved on and made the best of a bad situation, In fact we have bought a new house and had a little baby girl who is beautiful.

Ironically, the birth of our baby girl which is the best thing that has happened to us since the fire is also the reason for all the heartache that my wife and I are being subject to by the Social Services (Children’s Department).

It all started during my wife’s pregnancy when, out of the blue, she had a seizure whilst in bed with no warning at all. Without going into too much detail this was very bizarre as even when my wife was having frequent seizures the year before they didn’t happen in her sleep. After several more identical seizures combined with the fact she was in the later stages of pregnancy, my wife was admitted to hospital on “bed rest”.

From this point on things went from bad to worse. In an attempt to control her seizures the doctors dramatically increased her medication (I made several objections to this as it is highly toxic to an unborn child) but the hospital kept increasing and increasing. Granted the seizures stopped but the problem with Anti-Epileptic drugs (Sodium Valporate and Lamotrogine) is that essentially they are sedatives and the fine line between finding the “therapeutic level” and sedation is very thin. Needless to say, they crossed it by a mile and my wife was like a zombie.

I am fully sympathetic to the fact that stabilising my wife was no easy task but I simply cannot forgive the events that unfolded after this. After intoxicating my wife to the point of not being able to have a sensible conversation with her, the nurse in charge of child protection then conducted an assessment of my wife’s capability to look after our then unborn child and saw it necessary to make a referral to child social services as she deemed my wife not to be in a fit state to look after our child. The cold facts of the matter are that it was her colleagues who increased my wife’s medication from 300mg daily to 2000mg daily and put her in this state.

At present I am handling social services and we seem to be in an email ping-pong situation as I am dealing direct with the head of social services for our area. I am please to say that I have so far managed to persuade them that a section 47 investigation is not necessary and the talks are now focused on a section 17 which is a voluntary program.

To conclude, I would like feedback as to whether I have a case against the NHS as I personally feel that their actions were negligent and vexatious................. Your views would be appreciated.

Thank you in advance.

PS Mother and baby are doing fine and the medication is back to what it should be with no seizures or sedation.

[Night Owl]

Hi Chris,

 

I hope I can give just a little bit of advice here.

 

Thankyou for sharing your story with us here on CAG.

Your wife has obviously got great support in you with her Epilepsy, and you have both got the joy of a new child.

 

Firstly I have some knowledge of the NHS but I don't work for Social Services!

 

You say your wifes Epilepsy was poorly controlled when she had her siezure and the fire. Was her Epilespy and her medication being monitored on a regular basis? With Sodium Valproate it involves a simple blood test.

 

During the latter stages of your wifes pregnancy her medication was increased to gain better control of her siezures. This increase in medication would over the short term ultimately benefit your wifes siezures against the side affects of sedation. As you rightly say there is a fine line finding the theraputic level of anti-convulsants and sedation but at that time your wife and her unborn childs safety would have been paramount, so the increase in medication would have been warranted. You state that this increase in medication has now been decreased since the safe birth of your daughter which is the correct thing to do and your wifes theraputic anti-convulsant levels should be continually monitored to make sure that she is stable and effectively well controlled.

 

I can only say that Social Services have a duty of care for the safety of your daughter until your wifes condition is well controlled.

 

They will be dammed if they care too much and they will be dammed if they don't, but at the end of the day it is for the safety of your daughter and to help with the care in the short term that your wife may require as a new mother.

 

I'm glad to hear in your PS that mother and baby are doing fine.

Enjoy every moment with your daughter..........they grow up so fast.

 

Night Owl x

[Sali]

Whilst I agree with the previous post, I have found that there is a general (and dangerous) ignorance of epilepsy and the drugs used to treat it within the general medical population. There is often one specialist covering several hospitals and the local consultant is either too proud to ask for help and/or has not the time or inclination to read the BNF or NICE guidelines.

 

The situation is as it is. Social services will 'interfere' for however long they deem necessary.

 

Still, I would be hopping mad and feel, rightly or wrongly, that an indelible stain had been placed on my character and ability as a parent.

 

Was your wife's blood monitored carefully whilst the drug dosage was increased? I am familiar with the anti-epileptic phenytoin and know that the 'unbound' levels of the drug should be tested under certain circumstances, such as pregnancy, but also for people with certain illnesses and for certain demographics. This blood test has to be sent off - there are I think only a limited number of places in the country that carry this out; one is Guys in London and the National Epilepsy Centre has its own labs. The simple in-house test is not adequate.

 

If this was not done, it would be somewhat worrying, especially as the signs of toxicity were so apparent.

 

Get your wife to ask for her notes under a Subject Data Access - you only want the blood test results so it shouldn't cost much.

[Night Owl]

Hi Chris,

 

any hospital Haematology lab. can process a Sodium Valproate level within hours for inpatients.

 

Your GP would have been sent information of any increases made to your wifes medication and blood results, if taken, on your wifes discharge from Hospital.. You can make an appointment with your GP who should be able to give you that information.

[Sali]

Sadly, I can say with some experience Night Owl that you are wrong. Sodium Valproate like Phenytoin binds to plasma protein and only a blood test that shows the unbound levels can be accurate. I know that my own local hospital do not have the facility to test this and the serum had to be sent to Guys/NES for testing.

 

Also, often GPs are not getting discharge sheets from hospitals in a timely manner. The potential impact for the patient is scary.

[Night Owl]

The Haematology lab. at the hospital I work at does it no probs! not London either!

[Sali]

I can only say that I know my local Acute Trust does not have the facility to test for unbound levels and that the consultant when pressed told me that there were very few locations the country that could carry this out - Guys was the one he suggested but they have a very slow turnaround and the NES - private and you pay - offer a 24 hour turnaround.

[Chris1933]

Thank you for such a detailed responce Sali and Night Owl.

 

I can confirm that before the fire my wife was not monitored very carefully i.e blood tests, however as a result of the fire my wife spent several months in hospital and the only possitive outcome was that when she was discharged her epilepsy was controlled to the point where it did not affect her on a day to day basis. I know this will sound awful but i suspect that a major contibution to this was that my wife didn't have to think for herself for several months and there was no stress or work etc..

 

Then out of the blue whilst pregnant she had a fit in bed (very unusual). When she was admitted to our local hospital there were several blood tests (yellow cap i think if i remember right) but the results kept showing that the Sodium Valporate was too low. It was fully expected that with my wifes body changing that the levels would have to be altered but it was always assumed that it would be the lamotrogine as apparantly your body does overtime when pregnant and processes it more rapidly.

 

As for the the sodium valporate, it kept going up and up and we were fully aware that it can cause all sorts of nasty things for our unborn child.

 

The intoxication started with my wife being a little absent, then drowsy and then she got to the point where it was a waste of time even trying to talk to her.

 

I have no malice towards any nurses or doctors for this, everyone was doing what they thought best. Equally although i find the social services very stressful to deal with they are legally bound to investigate fully (i do accept this)

 

Where my anger lies is the fact that my wife went to hospital, was over medicated, then effectivly told she was not fit to be a mother. None of this was her fault and it's time she was given a break - she has been through enough.

 

I'm gonna stop now as im starting to moan:( thank you for you support, it is appreciated.

 

Chris

[Chris1933]

Sorry spelling is terrible on the above post, I'm very tired:)

[Sali]

I do understand where you are coming from. I would be angry too. I am also keen for medics to be better informed about anti-epileptic drugs. Normal blood tests can often show a drugs levels to be below or normal, when infact they are not because of other factors. I know this to my detriment and relate to the cognitive impairment you mention as a sign of toxicity. I know also that medics who are not specialists in epilepsy fixate on the standard blood tests but are ignorant of the pharmacokinetics.

 

Check that the blood tests were for the unbound levels of the drug. It should normally show up on the printout, but specifically ask if necessary. It may be important for the future and it may prevent another person being misdiagnosed or suffering.

[Desperate Daniella]

Chris,

 

I can't add to the advice you have been given as I have no knowledge of epilepsy, but I just wanted to say that your wife is a very lucky girl to have such a loving and supportive husband, and I am so glad you both have the joy of your new baby after everything you have been through together.

 

I think it must be very difficult for you both to have to involve social services in your life, but hopefully they will not be too intrusive if they can see that your wife is doing well now and your baby is thriving.

 

Good luck.

 

DDxx

[Chris1933]

Thank you for your kind words DD, they have cheered me up somewhat.

 

I cannot be too harsh on the social services becuase I understand that when they recieve a refferal they do not know what they are getting into and I suspect that they must see some very sad and disturbing sights and I suppose to be able to deal with this they have to have a certain mental attitude and leave no stone unturned and only leave once 110% sure that there is no reason for them to be involved.

 

However, "intrusive" isn't the word, we feel like we are living in a glass box and my only complaint with them is that they blatently do not understand (or perhaps not care) what effect they have on the parents whilst doing what they do. They are always very polite and proffessional but I always feel very mentally drained after any dealings with them.

 

Chris

[Chris1933]

Sali,

 

I am going to send off a SAR to find out about the bloods.

 

Do i just send this to our local hospital? also do I just ask for anything pertaining to blood tests or should I get the whole medial file for the last few years?

 

Thank you in advance

 

Chris

[Desperate Daniella]

Hi Chris,

 

I would imagine that this is the first time in your life and your wife's life that you have had any dealings with social services and you probably never thought in a million years that they would have any involvement in your lives at all. It's a very tough situation to be in, and I'm sure that every time they are due you and your wife get stressed and just want them out of your home.

 

Unfortunately you are going to have to deal with this for a while yet, and you will get through it. Keep looking to the future. Social services aren't going to be in your lives forever, and hopefully it won't be too long before your case is signed off and you can get on with your family life. Just hang on to the thought that you have a beautiful, fabulous baby girl. You and your wife have got through so much bad stuff together you're strong enough to get through visits from social services.

 

DDx

[Chris1933]

Hi DD

 

I'm not too concerned about their involvement and hopefully it may not be as protracted as you think. They are here to ensure the saftey of our little girl and I have to remember that.......however......

 

This is the happiest time of our lives but when I'm old and wrinkly and thinking back on all the precious "firsts" there will still be the memory of how much heartache there was at the same time.

 

I am not looking for someone to blame but I wasn't that clear in my first post about my reasons for asking for help, To clarify... I am not seeking to challange Social Services or any of the nurses and doctors involed in my wifes prenancy. What I would like to challenge is whether the refferal should have been made in the first place.

 

The fact that my wife was over medicated wasn't the issue, it was just one of those things. What I am hopping mad about is that the lady in charge of child protection conducted an assesment whilst ignorant to the fact that my wife was over medicated and made a refferal based on my wifes state at that time. My wife clearly was not capable of looking after a child at that time but why on earth did this person not have the common sence to look at the medical notes or ask close family members or me what my wife is "usually" like. In my opinion she just took one look at my wife and thought "I'm going to cover my bum and make a refferal".

 

What I would like to find out is whether the lady in charge of child protection has criteria to work to and if a person "ticks certain boxes" then a referal has to be made. If this is the case, but more improtantly if it turns out that my wife met the criteria for a referal as a direct result of the over medicating then I see this to be nothing short of gross negligence.

 

Sorry for the strong point of view DD but something clearly went amiss and if I can stop it happening to someone else at least something good will come out of it.

 

Take care

 

Chris

[Desperate Daniella]

I would agree - she was covering her bum, as you say.

 

Are you thinking of getting legal advice about the gross negligence in your wife being over-medicated?

 

I don't know if they will give you the whole file. I'm sure Sali will advise here.

 

Have you written to the Head of Social Services asking about the criteria and the notes the child protection lady took? You should be able to get this under FOI.

 

What does your GP think about this?

 

DD

[Chris1933]

Just noticed this is my 100th post, I can't have doom and gloom on my 100th post we need something cheerful........

 

Theres a certain little person who always cheers me up.......

 

(i'll answer your question in a mo DD)

[Chris1933]

Hi DD

 

As for legal advice, before I go hell for leather I thought I'd post on CAG to see whether others have experianced anything similar and what they did and the outcome.

 

We've not asked the GP, I didn't think of that.

 

As for the social worker I did touch on the subject but her answer wasn't exactly thorough. (In fact I had a booklet thrust at me detailing how to make a complaint:confused:)

 

I will be writing to everyone involved (SAR) and take it from there to see what the best course of action is.

 

Incidently, as this is our first child I wasn't sure what was "normal" and what wasn't. There are Midwifes, Health Visitors & various visits here and there and I just assumed that the first few visits with social services were fairly routeen. It was only when friends and family started to mention that normally you dont have social workers that I started to wonder what was going off. looking back I should have nipped it in the bud there and then but like I say, at the time it all seemed like it was just how it worked.

 

Chris

[Desperate Daniella]

What a beautiful dolly!

 

Thank heaven for little girls.

[Night Owl]

Hi Chris,

 

I love the photo of your bundle of joy. Enjoy evey minute.

 

I do think you should go and see your GP for some answers to your questions. Write down the question you need answering and don't be afraid to ask for clarification from your GP if you don't understand something. If you believe you need extra time with your GP ask the receptionist for a double appointment so that you are not rushed.

 

 

 

The fact that my wife was over medicated wasn't the issue, it was just one of those things. What I am hopping mad about is that the lady in charge of child protection conducted an assesment whilst ignorant to the fact that my wife was over medicated and made a refferal based on my wifes state at that time.

 

I would have believed that they would have had been contacted BECAUSE your wife was, at THAT time, over medicated. At the end of the day they have a duty of care to your daughters safety.

 

My wife clearly was not capable of looking after a child at that time but why on earth did this person not have the common sence to look at the medical notes or ask close family members or me what my wife is "usually" like. In my opinion she just took one look at my wife and thought "I'm going to cover my bum and make a refferal".

 

As I said before,

They will be dammed if they care too much and they will be dammed if they don't, but at the end of the day it is for the safety of your daughter and to help with the care in the short term that your wife may require as a new mother.

 

What I would like to find out is whether the lady in charge of child protection has criteria to work to YES THEY DO! and if a person "ticks certain boxes" then a referal has to be made. YES THEY MUST! If this is the case, but more improtantly if it turns out that my wife met the criteria for a referal as a direct result of the over medicating then I see this to be nothing short of gross negligence.

 

Your consultant, I believe, was aiming to control the seizures your wife was having which would endanger your wife and unborn child. The anti-convulsant medication was adjusted SHORTTERM to correct this and reduced after the birth.

 

 

I really do wish you luck in resolving the answers to your questions.

[Sali]

If your wife was deliberately (and you'd have hoped that the doctors would have discussed this with the patient and family beforehand) over medicated then it will appear in her patient notes and the signs of toxicity should have been noted by the medics and the nursing staff should have been made aware also. Did the social worker have access to the notes? Did he/she speak to the (nursing) staff/consultants caring for your wife and was he/she made aware that the cognitive impairment was temporary and purposely done to protect mother and/or baby and an assessment at that time would be misleading to say the least.

 

I think it worthwhile to apply for Subject Data Access from the time of your wife's admission and specifically ask for drugs charts, nursing notes, computerised drug test results.

 

What happened when you raised your concerns about toxicity?

 

When did your wife last see a neurologist specialising in epilepsy? New drugs maybe available. There could be new advice for those on certain drugs, especially for women of child bearing age. I know, for example, that phenytoin interferes with the metabolism of Vitamin D. Therefore it would be sensible to take a supplement to lessen the chances of osteoporosis later in life. A GP and non-specialist consultant are unlikely to know these kinds of things.

 

It's up to you what you do if you find that the medics were mistakenly over-dosing your wife. However, you could have the opportunity to influence the hospital's policy on the way your wife and other patients with epilepsy are treated in future.

 

It could also mean that social services alter their approach when assessing pregnant women with epilepsy.

 

What I have learned is that it pays to be well-informed and not to hesitate to challenge a medic persistently if you feel they are wrong. We are all fallible, regardless of how many years we have studied, in whatever profession.

[Night Owl]

If your wife was deliberately (and you'd have hoped that the doctors would have discussed this with the patient and family beforehand) over medicated

from what I understand she had her medication increased because of the increased seizures then it will appear in her patient notes and the signs of toxicity

for that specific time, from what I understand, her siezure control was poor so her medication was increased to obtain better control. A side effect of drowsiness was noted. This was temporary until the birth when the medication was then decreased. Toxicity would have to be proven by simple a blood Valproate level. should have been noted by the medics and the nursing staff should have been made aware also. Did the social worker have access to the notes? Did he/she speak to the (nursing) staff/consultants caring for your wife and was he/she made aware that the cognitive impairment was temporary and purposely done to protect mother and/or baby and an assessment at that time would be misleading to say the least.

The social worker would have been informed through a referal made by the hospital for the concerns with your wife and new daughter. They are there to support temporarily.

 

I think it worthwhile to apply for Subject Data Access from the time of your wife's admission and specifically ask for drugs charts, nursing notes, computerised drug test results.

In my opinion, you should try and get this information from your GP initially, as he/she will be able to discuss the results with you and the reasons for the increase in medication.

 

What happened when you raised your concerns about toxicity? The control of seizures may outway the side effects of temporary drowsiness.

 

When did your wife last see a neurologist specialising in epilepsy? New drugs maybe available. There could be new advice for those on certain drugs, especially for women of child bearing age. I know, for example, that phenytoin interferes with the metabolism of Vitamin D. Therefore it would be sensible to take a supplement to lessen the chances of osteoporosis later in life. A GP and non-specialist consultant are unlikely to know these kinds of things.

 

It's up to you what you do if you find that the medics were mistakenly over-dosing your wife. This statement is a little harsh?

However, you could have the opportunity to influence the hospital's policy on the way your wife and other patients with epilepsy are treated in future.

 

It could also mean that social services alter their approach when assessing pregnant women with epilepsy.

 

What I have learned is that it pays to be well-informed and not to hesitate to challenge a medic persistently if you feel they are wrong. We are all fallible, regardless of how many years we have studied, in whatever profession.

 

Good luck Chris, keep us informed of your progress.

Edited July 3, 2010 by Night Owl

[Chris1933]

Hello all

 

This post is a little on the long side but it gives a better breakdown of events and answers some questions previously asked a bit more thoroughly. I typed it in WORD and pasted it so please excuse any layout problems.

 

Here goes.....

 

When my wife discovered she was pregnant she immediately notified her Epilepsy Specialist Nurse and went to the GP, both of which were extremely helpful and full of information of what to expect during the pregnancy. My wife was 2 months gone but she was given a high dose of frolic acid as this helps prevent the Sodium Valporate from causing Spina Bifida in the first trimester, after this I understand that the spine “closes up” and the risk is considerably reduced to the level of a “normal” pregnancy.

 

Several months pass without any issues and it is in the third trimester where she starts to have seizures and was admitted to our local hospital. It is important to note that my wife was on a maternity ward and the nurses were only trained and equipped to deal with standard pregnancy, all decisions and communication regarding the Epilepsy was done via the Epilepsy Specialist Nurse (E.S.N) who liaised directly with my wife’s Neurologist. He is based at a hospital in a city adjacent our town and I would like to add that my wife only sees the neurologist twice a year but this Dr is absolutely without doubt one of the most experienced in his field and his speciality is Epilepsy, he also lectures at the University. (It took a lot of screaming and shouting after the fire 2 years ago to get him to “take her under his wing” and it was this Dr who finally got the seizures under control pre-pregnancy).

 

Unfortunately, when decisions had to be made that were outside the scope of the Epilepsy Specialist Nurses authority the situation meant that a call would be made to the Neurologist and the information would then be relayed back to my wife and I through the E.S.N who would then instruct the Sister/Matron??? to implement these changes in medication to the frontline nurses (who are trained only in pregnancy issues). This meant that all day to day monitoring of the situation was done via the nurses and midwifes and we saw the E.S.N approximately once a week. We only saw the Neurologist AFTER the pregnancy on a routine pre arranged appointment.

Had I have known what was to come I would have insisted this arrangement be altered and this is what I meant in my previous post when I talked of “nipping it in the bud”.

 

I will now explain the increase in medication........ Blood tests were done but I do not know if they were measuring “unbound” levels but I do know that they were showing insufficient levels, consequently the medication was increased. At this point I made no objection but started to get anxious as it is extremely dangerous for the baby. Further seizures occurred followed by further bloods, and again, insufficient levels. Now the Epilum (Sodium Valporate) was to be increased above 1000mg and I was now very worried and my wife and I spoke about our options.

 

(Please note that the contents in the next paragraph are not easy to talk about and please respect our decision as there was no right or wrong way of dealing with a terrible dilemma)

 

If my wife continued to have seizures during the pregnancy there was an elevated chance of a miscarriage or putting the baby in distress during birth and subsequently my wife would have to have a caesarean. A high level of medication would almost certainly stop or drastically reduce the frequency of seizures. However, the medication has been tested to increase birth defects to 3-9% above national average when below a dose of 1000mg daily. It was our understanding that anything above 1000mg daily was “uncharted territory” but it doesn’t take Einstein to work out that the % will increase also. My wife ended up on 2000mg daily but obviously we didn’t know the final dose at this point as that happened later. It was our wish for the medication to NOT be increased, this was not a decision taken lightly but it was our opinion that the risks were too great as the medication could affect anything from limb/body development to brain development and we took the view that although the seizures were very violent to witness, a foetus has multiple layers of protection in the womb and having seizures over having what is effectively poison in the blood stream felt like a safer option to the difficult situation. (Please remember that although this is a sad subject, the outcome was a beautiful, healthy and happy baby girl)

 

Moving on..... Our wish didn’t happen but there was nothing sinister in that we were not ignored or anything like that, it was just everything happened so quickly, my wife’s condition deteriorated and as mentioned with no Epilepsy trained medical professional present on a day to day basis, some decisions had to be made by the E.S.N or the remote Neurologist without sitting down and having a long chat about it as there simply was not the time. I am very angry but also very fair and I do understand the difficulty in these circumstances, I would also like to add that we have a very good relationship with the E.S.N who was involved with my wife way before the pregnancy.

 

Was the increase in medication deliberate? - YES

 

Were the side effects anticipated? - NO (only drowsiness for a day or two whilst my wife’s body re-adjusted not the state she ended up in)

 

Did the E.S.N anticipate a referral to SS as a result? – IMO NO (I’ll come back to this in a mo)

 

Birth......... It was decided by the midwife to induce my wife (started at 35 weeks but was moved to 37 weeks) as the benefits outweighed the risks. Incidentally both my wife and I totally agreed with this decision. A pre-birth meeting was held with 10 people present Midwife, health visitor, senior nurse, E.S.N etc... and the social services (Yes the referral was made prior to this WITHOUT our knowledge). With so many things being discussed and people present, I didn’t at that time understand the gravity of having the social services involved and just assumed it was all part and parcel of preparing for the birth and the first week following the birth.

 

This meeting amongst many other things started to focus on child care after my wife had been discharged. The E.S.N at this meeting categorically stated that there was NO reason why my wife would not regain her previous level of control once her body started to get back to normal. As a result, I agreed that as I was working full time and couldn’t have any more paternity leave that my wife would be discharged to her parents for the first 2 weeks where it was agreed the E.S.N, Health Visitor, Midwife and Social Services would make regular (nearly daily) checks on her well being.

 

All of this I totally agreed with and incidentally it was this compromise that stopped the social services from doing a section 47 investigation and focused on a section 17. Co-operation with them is key, however my patience is being severely tested, but that’s for another time.

 

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.

 

The lady who made the referral has no experience in Epilepsy and did not liaise with the E.S.N BEFORE making the referral and did so purely on my wife’s “assessment” during a time when she was clearly not well through no fault of her own. Would it not have been prudent to get all the facts before doing something as drastic as making a referral, she must have been aware of the negative implications an investigation from the social services has on the family involved and in my opinion these implications MUST be weighed against the positive benefits of child protection. Had she done this, she would unequivocally have seen for herself that our child is and will always be, smothered in love and protected from harm while ever we have air in our lungs. It is not a crime to have epilepsy and I do not see it as a good enough reason to make a referral.

 

Sorry for the long post but it does explain thing in more detail, but there is still ground not covered but essentially this is the timeline of events.

 

Please discuss as openly as you like, I do very much appreciate your opinions and inevitably they may differ from mine as I am too close to the situation to not have an unbiased view.

[Chris1933]

Hi Sali & Nightowl

 

Just one last thing to clarify on your last posts;

 

The side effect wasn't drowsyness, I see that occasionally because my wife gets drowsyness if she is late taking her night tablets and too early taking the morning ones. (They should be 12 hours apart). The side effects at their worst were nothing less than being a "zombie" when she was in hospital.

 

Regards

 

Chris

 

Additional - just to demonstrate how little the maternity ward knew about Epilespy or more importantly the medication, they even took her for a mental ability test as they must have though she was an idiot (I can assure you she is not - she is a very talented artist!) This was before the worst of the intoxication but they obviously observed that she couldn't communicate properly (like is say, even I struggled to have a coherent conversation with her when she was dosed up) and YES I did go ballistick when I found out about this.

Edited July 3, 2010 by Chris1933
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[Sali]

This is difficult.

 

It sounds to me that the NHS was brilliant in many ways.

 

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.

 

Your wife's and your own wishes not to increase the dosage were ignored.

 

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. You will not be able to prove now that your wife was suffering the side-effects from toxicity.

 

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 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.