Limits

When we first found out about Daniel way back in 2006, we were told that we could expect to be in hospital for 2-10 weeks. We did’t know Daniels airway was floppy granted but why does that give the NHS the right to keep Dan in hospital for 2-10 years. He is as well as he will be for the time being so why does our son have to stay in hospital when he doesn’t need to be there??? I’ll tell you why, money thats why.

We were also told that Dan always need a second person to phone for an ambulance in an emergency but now those goal posts have moved also. Now it is to help out during an emergency should one arise and ring an ambulance. None of them really know me if they think I will let the second person, unless it was Rob, lay their hands on my son at anytime apart from night time but certainly not during an emergency. I only let certain people deal with him now because I have to and thats a fact!!!

I asked Dan’s consulant about a panic button and her arguement was they still have to ring you back and what if I couldn’t get to the phone. I can see what they are saying but another family with a ventilatored patient are allowed to use hands free in an emergency so why can’t we because I have rang about a panic button and according to them all I would need to say is I need an ambulance. In an emergency we have been taught what PICU want us to do if such an emergency was to happen. I have a computer bof head as a partner, he doesn’t just have run of the mill hands free. He has the ones that postion on his ear so I wouldn’t need to get to the phone because it auto answers.All I would need to say ‘get me amubulance’ and hang up. The rest the panic button place would deal with as they would have all Dans details on the screen including what is wrong with him and they respond straight away but none of this is good enough in the eyes of his consultant. They would prefer I sit in my house with any random stranger they can find, this is perfectly exceptable even though Dan isn’t the only child we have. We have had 20 months of making small talk with people we don’t know, don’t get me wrong we have met some lovely people but I am tired. I just want some quality time with my children and the nhs only have them selves to blame because they have taken so long to sort a perfectly simple task and because when ever there is a problem they just ignore it and hope it will go away.

I have been offered a person once a week who will supposedly be in Dan’s team but there are 5 days during a working week and they have had 13 months to work on Dan’s discharge so it’s not like we haven’t given them plenty of time. As far as I can see the NHS has no intention of discharging our son anytime soon and they just present excuse after excuse. Well Rob and I are fast reaching our limit of how much more rubbish we can take from the national health service. Anyother situation people would not get away with this but because it is a child with special needs then they think they can do what ever they want and we just have to go a long with it. We just want our child, is that to much to ask for.