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.
