What a few days

Well things have been really chaotic for the last few days, red tape is such a nightmare ! On a positive note Tyler is going in for his op next week which will hopefully really help to improve his quality of life, so I am trying to sort out as much as possible before that . I was impressed yesterday when we went to Southampton hospital to find that 3 Consultants were seeing us together. They didn't rush us and we were with them for nearly an hour. Things remain somewhat unsettled but they have written to Boston for advice, so we will have to wait and see what they come up with. On not such positive notes apparently the chair that Tyler needs so that we can get the bed out of the lounge is still with the panel. Having been once they asked for further information and we now have to meet until they meet again for further information, I had thought that this was going to be sorted out much more quickly but there seems to be no way of speeding up this process which doesn't help Tyler much. The same appears to be the same for a wheelchair we have to wait for an assessment on which there is a waiting list. Whilst I understand waiting lists we have had a bed in our lounge since Jan 16, and although we don't mind it would be much nicer for Tyler to be able to sit in a chair for his meals. We are still waiting to hear about our appeal to Chesnut Tree house children's hospice, although they help youngsters to 24 they must be ref'd pre 18. We have asked for the panel to relook at this but if they agree it has to go to another panel for the ok. This delay is a real shame as they have a small pool which could really benefit Tyler. Our MP has been great but there seems no way for all these different services to join up. We also had a call today to say that a council official needed to asses the house again with regard to suitable adaptions, I think that we have been assessed about 8 times now by various organisations. There has got to be surely a way to save time and money by taking a co-ordinated approach whilst using a big dose of common sense and realising that there is a young man in the middle of this . Although I will always do all I can to get Tyler the help that he needs by addressing these issues, I am also aware of when to say thank you. Tyler's physio is fantastic and we wanted his efforts to be recognised and so nominated him for employee of the month. We were thrilled when he won and it was lovely to go and meet the CEO of St Richards and be present when he got his award.    I know that the NHS is stretched to breaking point but genuinely think that some sound idea's could come from the service users which would save time and money. This can only be done by joining up processes as opposed to each team working in isolation. Whilst saying this most of the people that we have met within the NHS do their utmost to help their patients and just have certain constraints upon them.