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Yesterday was a day of disasters that actually turned out to be one of the best. It was Jamie’s long awaited appointment with a very eminent gastro-enterologist who I had carefully researched and selected 2 years ago. Yes, it’s taken that long for an appointment, not because he couldn’t see us, but because Jamie’s GP would not refer him – reasons – how will you and his carers cope with the visit to hospital!! Honestly I despair, I had to wait months to actually get to speak to the man (GP), and after we agreed he would do the referral it still took months for him to write the actual letter. It is very frustrating being the mum or dad (or sister, brother etc) of an adult with special needs as we have no voice, I couldn’t even get past the receptionist to speak with Jamie’s GP. But anyway, yesterday was the big day, everything started off well, I didn’t oversleep, all animals fed and watered by 7.30 and we left on time. We had a good drive to Barnsley – it normally takes 2 hours 20 mins, so 2 hours into the journey the phone rings. Jamie has had a seizure!! Oh no I thought, we won’t be able to go, so we discussed all the contingencies we could put in place to sort this out. But when Andy and I arrived, having stalled our journey a bit, he was already awake and sitting on his bed. As soon as he saw us, he put his clothes on -success. Although he was really groggy he was fine and so we set-off. We arrived in perfect time – about 3 minutes before his appointment which was supposed to be first in the clinic. Then everything went pear-shaped. We waited, and waited….waited and waited. Jamie became restless, so we asked and were moved to a tiny room which was really stuffy. And we waited and waited…..We asked a couple of times how long it would be – Jamie worked his way through his stash of sweets, carefully selected so each one took an age to get the wrapper off – Starbursts, they are great in this situation 🙂 He even looked like he was going to sleep at one stage 🙂 But then, after an hour of waiting!!!! Professor saw us. And it was worth every minute of the practice runs every Thursday, which entailed us driving down to Jamie’s, taking him to the hospital, sitting in the waiting room with snacks and driving back, not to mention the trials of the actual day. Not because he can wave a magic wand or make Jamie’s chronic constipation disappear but because he understood the problem and he cared, he really cared. I’m sure Jamie knew he was helping him, because he stood there as good as gold. I’m sure he was spaced out from his seizure, which helped us keep him calm. So we are starting with changes to his meds, and going to work out how we can make him more comfortable and safe, and possibly how to remove the concrete-like blockage in his bowels. I hope now we can help Jamie to be healthier, happier, and as Professor Saunders said, the circle of constipaton, self-harm and seizures may be broken. I’m sure Jamie is really tired today, but he deserves the best and I’m so proud of him.   

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