Jump to content

Chris1933

Registered Users

Change your profile picture
  • Posts

    107
  • Joined

  • Last visited

Reputation

12 Good

1 Follower

  1. 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?
  2. I'm sorry to put a dampner on this but if the above statement was true he would not be in liquidation. I do hope you get your money back - Good Luck
  3. 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:-)
  4. 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
  5. 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.
  6. 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.
  7. 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
  8. 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)
  9. 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
  10. 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
  11. 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
  12. Sorry spelling is terrible on the above post, I'm very tired:)
  13. 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
  14. 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.
×
×
  • Create New...