A New School Year Begins….

First of all I have to apologise for not writing an update sooner than this!  I could swear that I created a post via my iPod and published it here a couple of weeks ago, but for some reason it’s disappeared!  Technology is sometimes not all it’s cracked up to be!

Paul and I had a meeting with the manager from Continuing Healthcare a couple of weeks ago, also Jill, who did Jack’s original assessment – which went on to be refused.

I have to say neither of us were looking forward to this meeting – I had certainly had enough of meetings in the last few months, and the summer holidays had given me some breathing space, so to know that the new school year was going to commence with yet another meeting was not a prospect I relished.

To cut a long story short, we were given an apology at the meeting for the way we have been treated by all the agencies concerned with the one big mess that is Jack’s transport to school, and we were asked if we would consent to Jack’s case going back to panel in the next couple of weeks.  Since the last meeting, letters had been sent and received detailing the severity of Jack’s seizures and in light of this, CHC wanted to see if they could put Jack forward once again.  We agreed.

If Jacks case in unsuccessful again, CHC have proposed that they will pay for a carer to be trained to come at 8am to our house and help me get Jack ready for school, to wait with Jack at home while I take M & H to school and then to travel with Jack on a bus/taxi to and from school.  The carer will be trained how to deal with Jack’s seizures.  The problem is…they are having trouble finding a carer!  The last I heard, the manager was going to contact various Home care agencies to try to source someone, but as she admitted herself, it was going to be no easy task!  Jack’s school was approached too, but they refused to supply someone, and baring in mind that they provided an escort for much of the last school year, I can understand why they have refused.  If  they are seen to be providing escorts for Jack – paid or not – then they will have to be seen to be providing it for anyone else in Jack’s situation.  Totally unfeasible.

At the moment, and until the escort/carer matter is resolved, I am transporting Jack to and from school – as well as my other two children.  The first week was quite stressful, but I have the timings down to pretty much a fine art now.  unfortunately fate let me get settled and organised and then decided that Jack should start having a few seizures here and there!  Fortunately these moments have struck when I have been parked up, but I dread to think what will happen when a seizure occurs while I am stuck in traffic in town…you can just picture the scene can’t you – nose to tail traffic…no where to stop or pull over…no one to administer oxygen to Jack.  It will happen, it’s only a matter of time and I live in dread of that.  But I have the funny feeling that when it does happen, I will suddenly gain the strength to announce to all agencies concerned that I am no longer putting Jack or myself in that situation, which actually is life threatening for Jack, and that I won’t be transporting Jack to school anymore.  Therefore – Jack will no longer be attending school.  I just hope – to be honest I pray, that Jack will pass the next CHC panel, which I believe is this week sometime, and then something will be put in place pretty as soon as possible.  If not, then we still we get a carer as opposed to a nurse, but when that happens will be anybodys guess really……when someone decides they want the job!

So, when I know more, I will post more…but until then please keeps good thoughts coming our way and keep everything crossed that we soon get some good news.

The Week From Hell…..

Oh where oh where do I start with this entry….

Basically the whole week off was an utter disaster which culminated with Jack being taken to hospital on friday afternoon.  I am not really in the mood for spilling all on here just yet, but all I will say is that there is an ongoing “urology” problem with Jack that is supposed to be resolved with surgery.  When the problem first occurred with Jack last year he was taken into hospital and I was told he would be put on the waiting list for surgery.  Six to eight weeks max.  Well we are now in March…the problem has occurred again (funnily enough whilst he is not in my care…but I will reserve judgement on that right now until I have had meetings with all involved).   It turns out Jack was never put on the waiting list. 

Now while Jack was on the children’s ward (for about 4 hours in total)  it turns out that apart from the fact that Jack wasn’t actually put on the waiting list for surgery (and oh yes there will be an official complaint being made), I also discovered that the local children’s ward have taken to employing nurses that have the bedside manner of…well…no words to describe the beside manner cos there is none with this nurse I am about to talk about!  The urologist refused to visit Jack on the ward, the ward doctor didn’t even examine the affected area – just listened to his chest and when I went to the nurses station to ask what was actually going on I was met by blank expressions….at which point I have to admit I did blow a fuse – but only to the point of telling them that what was going on was not acceptable – and I swear that’s all!  One of the nurses (We’ll refer to her as Nurse B….you can all insert whatever word u want for the B) looked up – but didn’t actually look me in the face and snorted

“There’s no need to get aggressive about it is there?” (add your own patronising tone at this point)

There was a two second silence after which I announced in no uncertain terms that I wasn’t actually being aggressive by my own standards, I was actually extremely annoyed that my son was being sidelined and nothing constructive was being done!  All nurse B did was announce that I should just go through the “normal channels like everyone else – visit the GP”.  She didn’t seem interested in the fact that the last Urologist Jack saw told me in no uncertain terms that what was happening with Jack is classed as a medical emergency and he should come straight to hospital.  Also if Nurse B had half the sense she was born with (or if she’d even bothered to look at the problem) she would have known that any GP would have sent him straight to the hospital anyway!

Erm….Jack has open access on that ward.  Now it also came to light during that conversation that Jack should not have been admitted via open door policy on this occasion and should have gone to A&E.  Well why didn’t anyone tell me that when I rang up??????? 

By this point I was on the point of losing it, and I don’t mind admitting that I did go on a bit….not aggressively…but in the way that any parent of a special needs child who is not getting the care that he should would go on.  The other nurse who was there is one that I have known a long time – and she did what that other silly cow should have done….tried to explain what was happening and what they would try to do…not snort at me in contempt.  The ward doctor also said she would consult her senior to come and see Jack and see if they could force a urologist to come and see what had happened to Jack.  I have to say – they were really good….but unfortunately Nurse B had just sent me off the edge. 

They episode ended with me sobbing next to Jacks bed and Paul arriving somewhat irrately on the ward….I had let him know what was going on.  As soon as he arrived I left the ward cos I just needed to get out of there….I don’t like the fact that I ended up in distress.  I don’t usually let anyone get to me like that, but it was just the topper of the week for me.

While I was away, Paul managed to rectify the “medical” problem and then went to the desk and basically in no uncertain terms told the staff we were taking Jack home, and where was Jack on the list for his op….that’s when we found out urology hadn’t even bothered to put him on the list.  When I came back to the ward Jack was sitting up in his wheelchair ready to go home.  Jack is now safe and sound at home.

For the last 48 hours I have been in a bad way.  A lot of people have a lot to answer for in the next few days and I am just gathering my strength to deal with it.  Paul will be taking an active part in any meetings that happen…and he doesn’t deal with fools lightly.  The Children’s ward are aware of how unhappy he is, Respite will also be getting a call from him in the next few days too.  They were informed that Jack was in hospital – funnily enough they have gone very quiet.

As for Nurse B…..I am considering making a complaint about her, but I am sure she would do her best to probably get me banned from the ward if she considers me aggressive.  However, I know the ward manager quite well and she is very approachable, so I will give it a bit more thought and then decide.  I don’t like making decisions based on how angry I am, and I need to calm down a bit first I think!  Nice Nurse N (the one who has known us for years) did say she would talk to her and tell her how much stress I have been under, but to be honest I don’t give a damn.  Her attitude sucks….I pity anyone who has to deal with her.

I really really hope one day she is in the position where she has to deal with a nurse  like herself when one of her loved ones is in a vulnerable position.  Seriously….I have never wished that on anyone before….but for her….full force. 

Jack, as I said, is home.  He’s fine.  We took the kids out to a local country park today, it was a nice break for us all.  I haven’t been in the best of moods with everything that has gone on….but I hope that everything will settle down soon.  As for Jack having future respite – I don’t know.  How many meetings and care plans does there have to be?  What good are they if no one is going to stick to them (and I am not just talking about respite now – but all agencies concerned with Jack).  I sometimes feel we are banging our heads against a brick wall….I am so tired of it all.