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From Crohns Disease to a Bowel Transplant how did it happen? 110512

Posted May 11 2012 2:08pm
I always wanted to be in The West Wing. It was my favourite ever TV series and I fancied myself as Sam Seabourbe script writer to the President.

So today my dream came true, I did go to the West Wing. The only problem was that it was the west wing of another hospital in the trust and it was to have my eyes checked following my shingles.

Throughout my time as an NHS patient I have tried to separate the medical side with the administrative side. I do this because the two don't always work in tandem. Whilst you know that I think the quality of my medical care has always been excellent the same cannot be said of the admin. What happened today summed it up perfectly.

I had been booked to have my eye exam a couple of days ago and was always told it was just after 3pm and that transport was booked to collect me at 2.30pm and bring me back at 4.30pm. Simple and very efficient. Oh no. Transport arrived at 3.30pm got me to the clinic at 3.40pm and as I was wheeled in there was a transport crew in front of us who had arrived to take me home. They had got there to collect me before I was even due to arrive.

We sort that out, the nurse says I will be about 30mins and asks for transplant to come back then. It then transpires that this nurse had talked to my ward yesterday, told them that the car was booked for 2.30pm and the eye clinic had asked if I could come a bit earlier. The two of them agreed 1.30pm and transport was supposed to be brought forward to 1pm ish. No one told me. My notes still had the original time so I was totally oblivious to this change. No one had obviously told the doctors because when they came in this morning they too had it down for after 3pm.

After I was dropped at the clinic the nurse asks why wasn't I here at 1.30pm, I shrug and say I don't know. Wind the clock forward to 4.30pm and I ask the receptionist to chase up my transport. He held on for exactly 31 min and 10sec (I know because he told me exactly) before an operator told him that I was in a queue and would be collected soon. At 5.15pm I was asked to leave the clinic and wait downstairs as the clinic was closing. The kind nurse phoned again to say where I would now be waiting. As I write this its 5.50pm and still no sign of anyone.

The icing on the cake was that the nurse at the eye clinic said I was collected because they went to the wrong transplant ward. Stop press news there is only one at my hospital. Yes the drivers said they were late because they were given 3 jobs in the sane time slot and I was last on the list.

So there you have in one why the NHS is such an administrative nightmare.

From my own health I seem to be finally coming out of my shingles slump. The he's continues to bang beautifully but the red blotches are fading. I finally escaped from my room with my sister this morning. I figured that if I was allowed out this afternoon then I can do for a walk this morning.

My kidney function level remains a constant up and down work in progress. If I don't have the drip over night then I feel myself getting dehydrated in the otherhand I want to be able to cope without it. At the moment the water is combined with 8 dyralite sachets and output has remained at just under 2 litres which is positive. The awful odour has returned in emptying the stoma. In fact so much so that even I won't go back in my own bathroom for a while.

Finally I am hoping to have a few trouble free days without infections. The radiation eggs and toast is now planned for Tuesday morning. Ironically that was the date I had been given originally for my stoma reversal. I wonder when it will be now. Not too long I hope. I have to say though it will be nice to have a few trouble free days. I only came on this time for what I thought was a few days and today it is 4 weeks exactly.

On a lighter note some of you may have seen me tweeting about the fact that this month is Crohns and Colitis month. Next week is World IBD Day. Quite how I don't know but I got asked to go to Brussels with Justine on monday to address the European Parliament on IBD day. Sadly I am here although I would have loved to be there but they are currently trying to set up a skype link so that I can make my speech from hospital. Feel very chuffed to have even been asked.

So that is all for today. Hope you like the view from the other side of the NHS. Having said all of this I wouldn't swap my transplant team for anyone.

Oh and as for the eye well there is a little scarring at the back of the eye but that will settle and hopefully these permanent headaches will go in a few days.

Crikey its 6.15pm and still no transport. I had better go and thumb a lift.
Michael Seres

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