Suffering the System

Hi All,

Please excuse another lengthy silence - I know some of you worry when there is no news. No need; we are all fine and still talking to each other! It's an extremely busy time getting to all of these appointments for Rory's disability needs assessment. It is also probably the most stressful experience to date for me, in all the years we have been dealing with Rory's health needs. The process in painfully slow, it doesn't seem to follow any chronological order. I don't feel like we are systematically working our way through any issues here, what's assessed this week is absolutely the same as what was assessed last week and there is certainly no joined up thinking going on between those who are doing the assessing. I even have to endure questions from one therapist asking me about the status of assessment being carried out by one of their colleagues, as clearly no one seems to be talking to anyone here. It's like dealing with the Fawlty Towers approach to child therapy!

I feel completely deflated by the whole ordeal, I can't believe I have been fighting so long to be met with this kind of "make it up as we go along "type of approach to treating Rory's developmental delay. Naturally, I've been informing myself on what happens elsewhere worldwide in these situations, and it is pretty much universally accepted that kids with a history like Rory's need a multi disciplinary team approach where everyone sings from the same hymn sheet. Unfortunately, this is a cultural impossibility within the Irish community health care system, where the mission statement is never to let the right hand know what the left is up to, and most importantly never put patient care before the preservation of the system. The system is an immovable feast of fear, frustration and frantic red tape where the passing the buck is an art form and fudging the issue is the key to survival. It is a constant source of amazement to me how these people actually manage to get up in the morning.

I will continue this process to the bitter end, because a) the end is in sight, and b) I have no choice, we can't move forward without a statement of need. This prized piece of paper will be complete by the end of May - by which time I will be already incarcerated in a home for the mentally bewildered! Meanwhile we continue to work on Rory's oral aversion ourselves with the help of an amazing Speech Therapist who we see privately. I dread to think of where Rory would be now if we hadn't gone down this route. We are seeing improvements everyday, he is willing to challenge himself more and more, becoming braver with each passing day. Today he sat with us for a meal, he didn't eat anything but he was happy to play with our cutlery and didn't have a complete melt down when he spilled spaghetti on his jumper. He quietly picked it off and dropped it in his dish. Seeing him able to actually handle food without becoming stressed gives us great hope.

I am convinced that Rory's aversion is rooted in issues of trust and control. He has never felt hunger, never had to engage with others to have that hunger need met. To cap it all, anything that came near his face was, at best, deeply unpleasant and at worst, downright painful. We need to work around his feeding regime, making sure his kidney gets the daily fluid allowance it requires but also allowing him time to feel hunger. Then we need to educate him that food is good and not something to be feared. But we have to follow his lead on this, he must choose to eat we cannot force him. He needs the support of a very experienced team to encourage him to make this most basic of life choices. I have yet to find this team.

I am optimistic for Rory's future, he will eventually make that choice, it's just so difficult when meeting his needs is such a struggle within this insane, cruel excuse we have for a health system. It shouldn't have to be this hard.

Cheers,
Ann