Re: What I've been up toNot good. He is ready for discharge and the CCG are taking a lot of time setting up a new care package (which is in the process of being set up) They are not communicating with us or the hospital. In theory Michael is bed blocking and the hospital want to send him to a placement in the interim. Due to the complexity needed these places are few and far between and could be 50 plus miles from home. Also, as happened once before, as soon as he went to the placement for respite the CCG cancelled his package. He was trapped in a unit where all the other patients were in a vegative state, for 7 months. We had a major battle to get him home. As the CCG are not communicating with the hospital trust then we are the cats that are being kicked by the Trust. It has come down to incessant bullying and making visiting very stressful.
Re: What I've been up to
Re: What I've been up toOh Celyn, why oh why does this keep going on? I ask myself what on earth did we do to deserve everything that has happened. We feel quite supported but really we are only one step away from falling through the cracks if we don't keep up with it all. My heart breaks for you Celyn I can feel your pain. What the hell are these people trying to do. I would not wish this evil disease on anyone except may be those idiots who do not see Michael through this illness and put him with people who cannot move or speak, for Christ's sake he is an intelligent man who needs outside stimulation, and not always from family who are tired and worried.
Re: What I've been up toCate, it's hunky dory in the initial stages. When the going gets tough, as you say, the cracks appear. It's chase, chase, chase. Sometimes I feel so lonely, as its me fighting non stop for what we consider our rights.