How not to spend a fortnight with the nhs

Well last two weeks been extremely not fun, have seen the best and worse sides of the nhs. Left in rather a hurry last Monday morn from home to catch the train, wondering whether or not I was going to reach the hospital in time. My brother had been taken in over night having had unexplained seizures. He's 20, so any number of possibilities presented themselves. the most worrying being meningitis.

By the time I arrived they hadn't discounted meningitis and I was left in the waiting room not allowed to go in. He was by now stable though and after having induced a coma the previous night to save his life as the seizures would not stop they were now bringing him round. Finally they discounted meningitis and I was allowed to see him. He also has aspergers, a form of autism which a lot of people wouldn't notice because they are very high functioning. The best way I can describe it is like Sheldon on big bang theory, but with extreme mood swings. So when the hallucinations kicked in (apparently a natural reaction to coming round and having so much medication put through you) they had to be handled with care. My mum was terrified having me there to worry about as well in case he lashed out and hurt the baby, however thanks to one of the nurses shouting at him instead of simply explaining I became the only one who could calm him down. They then moved him on to a main ward whilst still hallucinating that only had 2 nurses and a psych patient that was also hallucinating.

I have never been so afraid to leave someone in hospital and neither me or mum slept well. IN a private room my brother had settled and slept, meaning his hallucinations were subsiding and he was becoming more coherent. However, during the night he had been attacked by the psych patient as had three other patients, allowed because of understaffing.

Yes my opinion of the nhs was not very high particularly when we were informed he kept pulling his drip needle out, and if he kept doing so he was in danger of dying as his kidneys were failing. When I asked my brother why he kept pulling his needle out it was to discover that they were leaving it empty for hours at a time. I talked him back into allowing them to treat him, and a doctor reinserted a needle ready for the next drip, it was another three hours before one arrived! The icu doctor that follows up came round and my mum asked why they kept leaving it so long. He went mad and after that the drips were changed when they should be.

As if to make matters worse I than discovered the reason it had taken them so long to check for meningitis or even do any kind of epilepsy test was because the first doctor had decided it was drugs and pursued no other course, thank goodness for the nurses following a standard procedure because it was them and the ambulance paramedics that had saved my brothers life. It was only when a more senior doctor had come in at 6 am that had other tests done, and bloods proved there were no drugs in my brothers system. they also weren't telling us anything except the bare minimum, we had no idea why he was so ill, what had caused the seizure or whether his kidneys would restart. we were left in the dark despite asking, and my brother wasn't told either.

So what was the plus side of the nhs?? The icu nurses and most of the nurses on the ward, even though they were over stretched. Also I have to say I wasn't coping particularly well. My antisickness medication and iron tablets were running out, I was in agony from the uncomfortable chairs and stairs from my back that some days I could barely walk, I'd become extremely exhausted, lost weight and had begun to experience chest pains. even taking days off from hospital wasn't helping. I contacted the local gp surgery and was seen in less than an hour, run through an ecg and had a prescription for the medication as well as being told I was suffering from anxiety. he told me I needed to relax, he understood why I was unable to but he really didn't want to medicate me if he could help it, however he prioritised me as a patient, informed me when the midwives were in should I need them, and explained what he could do for me should my brother remain in hosp. Thankfully my brother was able to come home a few days later and following a gps app had everything explained. They'd concluded it was an epileptic episode, and whilst probably a one off were sending him to a neurologist to be sure, he has an appointment in two weeks. His kidneys had shut down due to whatever his body had released during the seizures and had the drip been running constantly all the way from day one it would probably have saved him two days in hosp. So, not really a pregnancy story, a bit of a rant. I praise those in the nhs doing such a good job when they are overstretched, but there are also an awful lot of staff that leave a lot to be desired, and its certainly made me much more cautious.

6 Replies

  • Flipping hell what a nightmare. ... ur mum should def complain to pals... so glad he is home and luckily his kidneys are ok u must of been so worried about him. ... glad everyone is ok andhope ur feeling better x

  • thank you. My mum is making a complaint, he's been so lucky. I'm back home now and feeling a lot better, sleeping more than anything x

  • Whew! Glad you're back home now, but what an awful time you've had of it :-( I can sympaththise to a degree as my daughters (13 & 15) both have Asperger's and I know how badly they cope in an alien environment. I hope you and your family are all feeling better now and you can enjoy the rest of your pregnancy now x

  • thank you and Wow, hats off to you for coping with two. I know how hard it is for my mum with just my brother. It does get easier as they get older, but not in everything. My brother coped remarkably well considering, especially after the attack from the other patient. That seemed to bother him the least, I think because he understood there was something wrong with the man. I think we are all feeling a lot better now, and I can go back to concentrating on the baby's room and all those other things that should be important right now :) x

  • It is good to hear you are all feeling a lot better now.

    It seems very few people understand about Aspergers and even fewer people understand how to react to and deal with the mood swings.

    My girls are quite variable from day-to-day and some weeks pass with very few difficulties. However, sometimes things can be pretty challenging and I don't always cope well - especially with pregnancy hormones thrown into the mix! I love my girls the way they are and wouldn't wish to change them :-) they have amazing insight and intelligence which I believe is down to being autistic.

    I hope your brother's neurology appointment goes well and you have good news. Also that you can relax sufficiently to enjoy the rest of your pregnancy X

  • Relaxing is something I'm not good at, but I'm learning. I think people don't understand it because they 'look' perfectly normal. my brother is amazingly clever too, he just won't put it to use because he is soon bored by everything. Think that's due to the stop start education he had, we didn't live in a place where aspergers 'existed' according to psychologists making getting an education for him difficult. I wouldn't change my brother, I love him the way he is but if I could I would change his temper. I know how much he hates the fact that even with all the work he's done on it he still can't always control it. At least its prepared me for pregnancy as taking things one day at a time seems to be helping me cope x

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