Up at 5.30am. I just can't sleep, am on worry overload at the moment.
Last week, I was worrying that the hospital were planning on operating on my son without checking how the stricture he has is doing. He was admitted to hospital at the end of May with high inflammatory markers, pain and vomiting. Things had settled down fairly quickly, but not before he had had a barium enema showing a stricture.
He has active inflammation at that point, and so I was glad that the surgeon ordered a barium follow-through, thinking this would show what was going on, whether the stricture was improving or getting worse. Unfortunately, when we arrived at the hospital last Monday, it became clear that they were only going to look at his small bowel, to ensure there weren't any other problems going on, and they didn't plan on looking at the area of the stricture again.
He was really upset, thought that if there had been any improvement, the first time they would find this out, would be when he was on the operating table, and it was too late. I phoned the consultant from the internal phone on the reception desk, but got a very obstructive and unhelpful secretary who was very unhelpful.
"What do you mean you want your son to have other tests? Have you seen the surgeon?"
"Well yes, but when he said that he was ordering a barium follow-through, I thought in my ignorance that this would show the area of the bowel where the stricture is."
"So...does he think the operation is necessary?"
"Well, obviously he does, or he wouldn't have scheduled it."
"So...you disgree with him?"
"No, I am not saying I disagree with him, just that I think it would help my son to be reconciled to the fact that it is necessary if he felt reassured that they had checked that the stricture hadn't improved. We thought they would check that today; they aren't going to."
"So...did the surgeon say it was necessary to check it?"
"No, obviously not, because they aren't checking it. But I would have discussed that with him if I had understood that."
"So...what are you asking me to do?"
"I would just like to ask for some sort of test to reassure him that the surgery is necessary...maybe an ultrasound, as the narrowing has shown up on the previous ones?"
"So...you want me to ask if he can have an ultrasound, even though none of the doctors think that is necessary? I just want to be clear on what you want...."
AAAARGH. She wasn't rude, but she made it perfectly clear she thought I was being ridiculous, and somehow managed to convey a sense that I was being unreasonable and demanding as well.
I waited to hear from them and nothing happened and so I contact the PALS people. These are the Patient Advisory and Liaison service in the hospital. I wasn't optimistic.
I sat on the local Maternity Services Liaison Committee at the local hospital for a couple of years, and also on the Patient Panel locally. A friend was chairman of the local Community Health Council too. I gradually became more and more sceptical that these committees actually achieved anything - I thought they spent a lot of time patting themselves on the back and achieving very little.
An example: the sub-committee which had been formed to look into seasonal bed shortages reported to the patient panel. There was a long report, with a lot of figures, and they declared their committee's investigation a success. I looked at it, and it appeared to show that seasonal bed shortages were worse than ever, and the sub-committee has provided no solutions to that problem, and had effected no change in the situation. I asked by what criteria they judged it a success?
I got some old-fashioned looks and a lot of shifting in their seats. Normally it seemed that they tended to pat each other on the back for a job well done, and didn't consider whether the committee had achieved what it set out to achieve, or had changed the experience on a single patient. They had successfully gathered information and report back with it. That's why they were a success. I found the people generally to be obsessed with their own pet subjects, self-satisfied and unable to judge objectively what was going on.
The only people who seemed to be looking at things the way I did were the Community Health Councils, who did seem to me to gain a pretty good overview of what was going on in their areas, and to be committed to changing those things which needed changing. I was pretty pessimistic when the government disbanded them all in favour of Patient Advice and Liaison Services within hospitals. for a start I thought it was unlikely that the PALS services would have the required independence to be able to investigate internally, and I was also pessimistic that no-one would have an overview of the services in an area any more.
I am still sceptical about that - I think that the government aimed to reduce the amount of critical responses it gets to its changes in health care. But as for the second, I have been pleasantly surprised.
The PALs in the hospital took up our case very quickly, talked to the people concerned and said that there was some merit in what we said. They agreed to cancel my son's operation and to do some more investigations and I heaved a sigh of relief. My son was also more relaxed and happy than he had been since they talked about operations.
So...we are due back for another barium enema, and of course, he has started to flare up again, and now I am worrying that I did the wrong thing. Had I not interfered, then he would be scheduled to have his operation in less than a week. As it is, we are supposed to go in this morning, but if he is flaring again, then the likelihood is that the stricture is still there and as bad as it was before.
It is difficult to know who to go to because he seems to be caught in a no-man's land between medical and surgical which means that he has two sets of consultant, registrar and a medley of House Officers and Senior House officers, all involved in his case.
He is feeling ill, was hot last night, and I have no idea if I will be doing the right thing to take him in for the test or not. He has diarrhoea, and that will make the train journey difficult and stressful. Bloody Crohn's disease...I hate it.
Add in the fact that our financial problems seem to be getting worse and worse, and you will see why I am up and typing into this Blog at this time in the morning. Hell's teeth.