What a waste

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.

8 Replies

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  • frustrating as it may appear to ne but if i had been funded t go to transitional living i wouldnt hav had to suffer a furtherv 6 months in hospital cut off from family and friends i was in dover all family and friends in london if i had goneto transitional living i would have received badly needed physio life skills etc sadly lacking once i was discharged as well as regaining my driving licence was delayed 6 months and i missed enrolement for a degree course

  • so sorry to hear that they are wasting the chance to help jake.i hope you gt it srted asp.and from reading your blogs i know u wont give up n let them carry on like it . i wish u all the luck in the world with this take care.

  • copy your post and send it to your MP..see what happens hun. x

  • I have decided to bring Jake home and continue his rehab there. Clearly I need to get support from the PCT to achieve this, but they've been brilliant so far, so hopefully I won't need my MP :)

  • I really wish you luck with this and hope you are able to get all the support you need. It is a shame that the promising resources are not living up to the full potential. We will be rooting for you and Jake as you embark on this next leg of your journey.

  • This post just made me feel like crying. We are just starting on our rocky road. Brother in law has severe front temple lobe damage, almost child like state, unsteady on feet, double vision. I am fighting for his not to be discharged back to his own flat on Friday.

    He has no family locally, he is in london, we are in Dorset. I am travelling up tomorrow to ask for copies of assessments, minutes of minutes, care plan ha! ha!

    Why dont the professionals realise that we care more about our family than they do - they are not just a tick on an OT's list!!!!

  • Please get on to Headway - they are brilliant and will have a much better idea of how to manage the professionals than we ever will! Where is his Dr registered?

  • Hi charlie,.

    he registered in Ealing, had meeting, went better than expected, I did go loaded with direct questions, and lots of advice I had got from Adult Social Services Team. I havnt agreed to any discharge yet, they want it to be tomorrow!! Hadnt seen my BIL for 2 weeks and I have to say the improvement was noticeable, his speech much better although understanding has been affected, and memory. He should be dead so we are eternarlly grateful that he is in the shape he is!! Others I know, not so lucky. He is starting to write in a diary so he can remember things. they have verbalised an extensive care plan for the next 6 weeks if he goes home. which I have asked for in writing. Say he will be continually assessed, I will be asking for copies of those. He is desperate to get back to his flat and I think his recovery will be better as long as they are going to visit him 3 times a day to help support him with cooking, shopping. The minut they slip I will have them under safeguarding. He being supported by a Renablement team of OT, Speech, Psychiatrist as well as specialist rehabilitation carers (I am almost not buying into this as I write!!) we will see!!!! Cant go til they sort out his money and problems with the flat anyway. Said I wont even talk about til this is done, I will have thought of another reason by then too.

    Thanks for support charlie, Jake lucky to have you.

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