Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
Oh, where to begin?
I suppose we begin with the opportunity; Jake is currently benefiting from a window where his brain is still receptive to making new pathways, he is very motivated to continue to improve and we have an excellent funding package through the NHS named patient programme. So the opportunity is most definitely for hope to go up; it is huge.
Currently that opportunity is in the hands of a transitional rehab unit that you will have heard me refer to as the student house. So, what's the problem? The problem is that they are not maximising that opportunity.
The purpose of Jake moving from the rehab hotel to the student house was that it is closer to home and the rehab package would be specifically designed to focus on integration back into our local community and making the successful return home in the Summer. He would gain the life skills to have some Independence in our home and the confidence and familiarity to access local amenities. This was very exciting to us all and felt like a real step forward. Progress.
So why are they not maximising this opportunity? Honestly? I don't think they have the capability or the resources. Seven weeks in and the life skills gained at the rehab hotel have gone and no progress has been made in accessing the local community. Don't get me wrong; the staff are warm, caring and supportive, there are lots of internal group activities that they have managed to get Jake to join and enjoy and he has a lovely big room. If we had reached a point where Jake had plateaued and been assessed as needing long term residential care, then the student house would be perfect. We have not reached that point and what makes it so much worse is the lack of accountability being taken for this failure to deliver against the promises made; never have I experienced such a practised and skillful avoidance strategy! It's like accountability is something toxic and they don't want to get any on them.
This is maddening as I cannot express enough how utterly lucky we are to have this perfect storm of opportunity that so many don't. I will not see it wasted, you can be sure of that.
Yesterday I had the chance to 'express' my feelings face to face (not a terribly 'clean' communication!) to those funding this opportunity. I felt like I had been truly heard for the first time and in the review meeting with the student house team that followed a very clear plan was drawn up for the next 4 weeks of rehab. I'm afraid my confidence is not particularly high.
So, I suppose that means we end with a question; if the opportunity is currently being wasted and the student house team can't get their act together, what should we do next? The answers are complex and pretty daunting and, with the excellent support of Jake's case manager and the Poole NHS brain injury support team I am sure we will find them.