Why is it so hard to get the help that is needed for seriosuly ill young people

My son has been fighting a brain tumour for 7 years and we have seen the best and the worst of the NHS. It has been a constant struggle to ensure that he gets the help and support that he needs, this has become my full time job as we battle the red tape that surrounds services. Today has been a particularly frustrating day with a phone call  from a professional who clearly didn't give a damn about paitents but was only concerned with being in acceptable time frames. But let me explain a little my son was diagnosed with a brain tumour at the age of 12 and to date has had 25 operations and radiotherapy. Due to the location of the tumour we were advised that is was too risky to remove it all and unfortunately the tumour bled in Jan 16 causing in effect a stroke. This left him with significant disabilities, including mobility and visual ones . We were initially told to be prepared to loose him and were just so grateful that he came through we didn't really appreciate the damage that the bleed had caused. After weeks in hospital it was decided that he would come home to a bed in the lounge, ideally he would have gone into rehab but as he would have been the youngest person by about 50 years it was agreed that he would be a day patient and I would take him in. As I always stayed with Tyler in hospital I was happy to do this but it did mean that I would not be able to work and become his full time carer. It was at this point we suddenly realised that we were pretty much on our own and the battle for help began. As Tyler regained some sensation he developed an awful Parkinsons type tremor which meant he couldn't write and his mobility became much worse, due to this he has been unable to attend college although we do hope he will go back. Over the next few weeks I will share some of Tyler's journey as he faces more surgery and the challenges that we have to face. Over a year on from the stroke we still have the bed in the lounge and are waiting on a chair that will offer sufficient support to allow Tyler to actually sit up and have a meal. We have been waiting for this for some time due to red tape and complicated funding processes, so at present Tyler has to continue on his bed. To date we have been assessed by hospital occupational therapists, community ones, council officials and now we need further wheelchair assessments. Each of these teams have waiting lists   and don't link up, this seems a huge waste of official time surely one report could be shared by all. Tyler has been trying an electric wheelchair at the hospital and we thought that it was only a matter of time before he could get one. Apparentaly this is not the case he has to have this extra assessment and may not qualify anyway. Despite the fact that he is housebound he may not meet the criteria , this is due to the fact that being a detrmined young man he manages to move around the house with some aids taking several falls but wanting to be as independant as possible .When I tried to explain that Tyler was a teen who had been through so much I was cut short and told processes had to be followed but why do the take so long. We have been passed from pillar to post and as ateen who has gone from childrens to adult services fallen through eveyr gap in provison that there is. All this was being dealt with whyn we found that Tyler's tumour had grown and the op that they always said was too risky had to be done or he would go onto palliative care. Being the brave ,amazing and inspirational young man that he is he quickly opted for surgery, this meant many more weeks in hospital and further disabilities. Everywhere that we have tried for help we have been turned away from , too old for a childrens hospice, too young for an adults, out of area for the only teen one and so it goes on. I spend my life fighting to get him some chance of a indepdant live because he has fought so hard for one. Tyler has done so much for other children setting up his own Chairty Tyler's Trust . He always thinks of others first , even delayng his brain surgery to host a fun day for the families that the Trust support. We can not be the only ones to face these issues and they have to be highlighted and dealt with