No news this week

I have just psyched myself up to check my emails in the hope that there might be some news on

1/ Armchair
2/Wheelchair
3/ House adaptions
4/Hospice

Would anyone care to guess the progress that has been made? You are probably right in assuming its absolutely zilch. Following my email to the hospice I was surprised to get an out of office on leave auto response . Whilst I appreciate that people go on leave it would have been nice to at least know the outcome of the panel which was now 10 days ago. I also chased this with their CEO but no response there either.
There is no news on any of the other items either, well one piece of news in that the supplier of the chair phoned asking for our OT(twice). From what I can gather he thinks the chair may be in the stock area, does this mean that their panel has ok'd the chair ? Your guess is as good as mine but here's hoping.
I was really touched by an offer from one of my closest friends saying if we really cant sort things through the NHS she wanted to help with the wheelchair. I am always amazed when people are so kind and it is that sort of thing that really keeps us going. I hope that it doesn't come to that but I think that we are reaching the point that we really need peoples help. I have always said that I wouldn't fund raise for things that Tyler needs and it is for us as a family to manage, I have never really understood how people contact the press and start raising funds for themselves within almost days of being diagnosed. But we are 8 years in now and I have accepted that the only way that we may be able to get Tyler what he needs to live a full and independent life is to fund raise. The house adaptions s are likely to be in the region of  £20,000 above the council grant .
However I don't think that fundraising is solely the answer because so many children and young adults need support. It is really up to the government to ensure that this age group is fully supported , support at this stage will reap personal and financial dividends in the years to come. They need a chance to become independent and confident members of society .
Please raise this with your MP and anyone else that you can think of .