Standards is as standards do

After a bit of pneumonia and flu, Danny is now back on form and back to telling everyone to ‘get out’ and ‘get off’. I have tried my best to teach him other words but he seems to like these ones so much. Rob has been trying to teach him ‘bog off’ but Danny thinks that is rude so hasn’t bothered learning these ones.

My friends have been good these last couple of weeks and so we have been home with Dan which has been great. The PCT were supposed to be providing someone once a week but true to the NHS’s form, there is no urgency to it. I have also explored other avenues myself which means with the help of my family and friends and a different organisation I should after next week be able to have Dan home on Thursdays too.

Kyle and Bridie were here for half term last week which cost us eight pounds a day in bus fares and this week we got another blow financially when the disabilty living allowance stopped paying for Daniel stating that they didn’t know he was in hospital which I don’t understand as this I put on the first form and the second. I only actually reapplied because the community nurse said Daniel should be on a higher rate, I wish I hadn’t bother as quite frankly right now getting the middle rate was keeping us afloat. This maybe the straw that breaks the camels back as the NHS do not seem to be in a hurry to discharge Daniel which is crippling us financially due to the cost of bus fares and diesel. In a 12 month period alone Rob has spend 1,500 pounds and I spend 20 pounds a week on bus fares which again exceeds a thousand pounds a in 12 months and the people that are in charge of Daniels discharge think it is alright for us to foot this bill even though we have told them that we can’t afford it.

I saw a television programme today about babies at risk and one baby on it was described to have been in hospital a long time and they stated this baby had been in hospital three months. If only Daniel had been in hospital 3 months, I would be over the moon. He has been in hospital 19 months and the NHS think it is fine to take away our little boys human rights. Not to mention Tom’s and ours. Tom is still struggling with this and has been for nearly two years.The interviews for the staff nurses for Daniel’s team are supposed to take place tomorrow and even if they do, it will still be months before he is discharged.

Tonight Danny is being looked after by a stranger again, by that I mean a ward nurse which I do not understand as we are told Daniel is one of a kind and required people that know him; away from PICU he requires two people. The other long term ventilated patient only requires one person yet he always seems to get a PICU nurse which again if Daniel is a complicated case, why does this happen? There seems to be one view one day but actions speak louder than words. By this I mean when he is given someone that doesn’t have a clue about his care and it deemed to be ok, I cannot help but wonder if he really is so complicated then why does this happen or is it simply duel standards to fit the situation?