Plan of action to get people to listen

Tyler needs several things to allow him a return to college hopefully after the next risky operation.
He needs house adaptions, these apparently can take a year from now, he also needs the already mentioned chair so that we can loose the bed in the lounge, he most definitely needs a powered wheelchair with proper ramps. The temporary ramps that they have give are simply too heavy for me to lift. When I mentioned this they said that permanent ones would come with the DSG grant which is a year away!   I have spent the afternoon trying to get hold of our GP and any of the OT's involved in his case , they were all too busy to return my calls. The next port of call had to be to the MP who does his best to help, but this needs some joined up thinking at a higher level to get this resolved, my next wonder is how do  I get some one high enough up to listen. Needless to say I have already sent messages to Theresa May and Jeremy Hunt unsurprisingly I have had no replies. I also have on my list of jobs to chase the local childrens hospice to see if they will offer him any help.
In addition to all of this Tyler needs appts at Southampton for 6 different clinics, Surgery,oncology,radiology,visual,MRI,endocrine.  and narcolepsy. The drive to Southampton can take up to 2 hours and we then have to pay an extortionate amount of money on parking. It is hugely annoying that families in our position have to spend thousands of pounds in parking. Having a child in hospital is very expensive and in most cases at least one parent has give up work, so at the worst times of their lives they are having to think about money.
I need people to highlight the issues that we are facing far and wide not only for Tyler's sake but for all those other young people that are unfortunate enough to turn 18 and still be ill. politicians have to join these services up, it is false economy to not help these young people and leave them to rot on benefits. I wonder how much I can achieve before we go into hospital on the 14th, I wonder if it needs to go to the press before any one will listen. I will share more of Tyler's journey over the next few days which will highlight issues that we have faced, things like one day being on a children's ward and the next on a geriatric as there was no where else to go.
We need to get the wheelchair and lounge chair as a priority if anyone has any ideas please share them and share this blog as far and wide as possible. I had to do this or go grey I think !!!!