Epilepsy

Having a son who was diagnosed over four years ago with this, I thought I would write about it..


Lets start at the beginning..my son was born prem died and was resusitated. He suffered with brain damage as a result. He has moderate to severe learning disabilites. When he was about 12 we had a consultation with a consultant about Absence seizures, but was told no he didn't have these (even though he used to blank out). Roll forward a few years.... he has a Generalised Seizure (Grand Mal/Tonic Clonic) seizure. After another one he is seen by a neuroligist yes he has seizures..put onto meds that do not control these, go back to neuro and meds are increased. Still not contolled!

Fast forward three years..son decides he no longer wants to take meds, I am not allowed ( UK Mental Health Act) to force him to take these, resulting in a few months later an admission to a psychiatric unit (voluntarily because once the Dr had gone I told him he was going in full stop!). This by the way is 11pm.

Now because he has learning disabilites was told that in the morning he would be moved to a place more appropriate for him..yeah okay! Phone in the morning to be told he has not beeen moved, go up the the unit speak to a nurse who tells me that he will be moved just not yet. The next day I go to the unit to find son still in same clothes he was admitted in...ask to see a charge nurse,l who then says if he had a change of clothes here then he would have been in clean clothes..point out I brought clean clothes everytime I come up...she then tells me they cannot force him to have a shower or get changed (UK Mental Health ACT!.) So all I say is you actually have to tell him he needs a shower etc...as he has special needs...told not the appropriate place for him! Once again ask why he hasn't been moved....gobsmacked by the answer...The Learning Disabilty Team and /social services have lost him! HE IS NOT ON THEIR SYSTEM....and his assessment to get him moved will take weeks!!!!!!
Told nurse no it won't he will be assessed before the end of the week.

Go home search net find where he is meant to be plus phone number, phone them up. Speak to person in charge to be told the same thing again! By now I am frustrated and very very angry (especially as the year before I had phoned up Social Services asking for help). he gives me the phone number to the person who is charge of the learning diability team in my area. Phone her in the morning (but of course he had already phoned to warn her I would be phoning). She basically told me the same thing plus she added.." I have worked here for 10 years and never heard of your son"..my answer " I don't care if you have worked there for 20 years you have lost my son off your system ONCE AGAIN (they lost him when he was 14 ), I would like to speak to someone in charge"...reply " I'm the boss!!!"...reply " For every boss there is someone else in charge" and I put the phone down.

I decided to contact my MP (what a waste of space you are Mr Wayne David!!!), he or his office told me no more than what I had already done!!!! NO HELP OFF HIM THEN.

The next day was phoning all kinds of people that I found on the net...wouldn't go and see son today as he kept saying he was coming home but still not right..still saying he was going to kill himself etc...head of unit told me she had no choice but to let him home if that is what he wanted (UK MENTAL HEALTH ACT!!!). Told her that was fine but when I walked out of the doors I would phone 999 and have him committed,answer there was no Dr on duty..reply " There would be once I phoned 999". result son stayed there.I also emailed a local councillor Lyndon Binding, he emailed me back almost immediately, what a godsend he is :)

On the Thursday I phoned up Mind, they phoned me back within the hour and put me in contact with Mencap,who worked wonders.
Still on the Thursday, had a phone call off the Learning Disability Team, they woluld assess my son in the morning and could I be there..of course I could.

He was assessed and was told I have no idea why we have never seen your son before ...DUHHHHH you lost him!!!!! She then told me would take a few weeks to get a Social Worker assigned to son..."NO WAY" was my response, " There had better be one by the end of today or by Monday lunchtime". Phonecall in the afternoon a Social Worker had already been assigend to him through Mencap (they may be a charity but they carry a lot of weight).

To be continued....................