Well its all over for the moment. There were only two people on the panel as the Devon County representative for social care did not turn up . However the two other people were both qualified nurses and both had experience of PSP . The meeting was conducted very informally ,they listened intently to everything I had to say and seemed sympathetic and understanding . They went out of their way to make my daughter and me relaxed and comfortable in the situation and asked pertinent and informative questions . They were not happy about the way things had been conducted and said they would be looking into certain aspects of the process .There was an emotional moment in the middle ( you will all be proud of me and Kate as we reached for the tissues ) . It was a very genuine one - I don't think I quite realised how close to the edge I was on the emotion front .When you have to give a very black and white picture of the person you have lived with and loved for nearly 50 years - it is so hard as you seem to be describing someone you don't know- it is so very raw and I had to describe one particular incident which occurred before we even had the diagnosis and it finished me off .All my stoicism dissolved in an instant . The panel seemed to take on board the progressive nature of the illness in that they realised any judgement they made on any particular date would not necessarily be valid may be two weeks later or even a day later . We were in there for nearly two hours and I can't tell how important it was for me to have my daughter by my side - she was so supportive .
Right at the beginning of the meeting the chairwoman stated emphatically that in no way would any budgetary consideration impinge on their conclusions and I believed her . She said it would be solely judged on a primary health care need . She also accepted that that was a difficult concept and caused endless problems as it was not clearly defined .
It will however take them a further three to six weeks to reach a decision and she advised starting a new assessment immediately ( they did ask questions about how things are now and have been since the last assessment was put in .
Anyway ,I do feel the panel conducted itself in a very fair and thorough way towards me - so now all we have to do is wait .
Once again thanks for all your support - by the way they asked if that could have a copy of my notes relating to Needs , Unpredictability ,Complexity, and Intensity -- good sign?
love to one and all .... a wrung out Georgepa