Healthcare minus the true care

Weekends are the strangest animals and by far the biggest oddity of illness, when it comes to the day of the week. I know that my own personal, skewed view of them, is outside of the norm, I know this, from what I’ve gleaned from others. Most see them as important, a party time for families and friends, to be enjoyed as one, but without a doubt, it was family and their impact on my as a child, that set my view. My childhood was extremely regimented. There didn’t feel as though, there was a moment of my time, on any day of the week, when I wasn’t doing something, usually something I didn’t want to do. School, obviously; followed by either piano, lessons and/or practice; working in my grandfather’s shop, both before school and on Saturday; doing chores; art classes; visiting relatives, always boring; Sunday school, church and walking the family dog. I never had an afternoon, far less a day, even at the weekend, when life wasn’t totally regimented. Time with friends, actually, what friends, at least not until I was a teenager, and even then, none were allowed to come home. From 14 to 16, I had a brief window of freedom, when weekends were as close to what I thought they should be. Then they vanished again. It wasn’t enough for me to work all week, so I had my first stint as a nightclub DJ, which brought weekend fun and then all too soon, my first husband into my life. With him being a Royal Naval Officer, life was once again regimented and weekends, what on earth was one of them, they were all once again, just days, especially when we had two small children. When we split, I first worked in a bar. No weekends off there either, then I went back to years of working as a DJ, enough said, followed by working for British Telecom, who’s lines never close, so no weekends again. I was well into my 30’s when at last, I was an Operations Manager for a normal Monday to Friday company. What did I do, I brought in weekend working. My PRMS, actually at first brought weekend, proper weekend. I was forced into taking time off, no work and better still, without anyone telling me what to do, but note I said at first.

As I said, people around the world, look forward to weekends, in one way, I do, it means Adam is at home, but there is now something that hangs over them, that takes that shine away, especially if I’ve had a tough week. Like anyone with chronic illness, I have done my fair share of time in hospitals. There is one thing about being an inpatient that strikes you quite quickly, weekends are completely different from weekdays, but not in a good way. There is no comparisons, the cleaners who usually annoy you by keeping you awake using noisy machines, are gone; anyone who could be, has been sent home; not just are there fewer patients, there are fewer nurses; and the snap to attention visit from the gods, otherwise known as consultants, have gone too. There are no consultants, often no registrars either, just junior doctors, all rushed off their feet, as they try to cover whatever ward needs them right then. Well spotted, I’m not in the hospital right now, so why is this of any importance. It’s that nagging knowledge; there in the back of your mind; that statistic you heard from the evening news; about how your more likely to die, if you’re admitted to a hospital, at the weekend, than any other time. Every weekend holds those threats, the knowledge that if an ambulance needs to be called, and that should the Accident and Emergency staff decide you need admitting, you’re just going to lie on a ward, waiting for Monday, not fully treated, just watched for the gods to return.

The working practise of our hospital system never bothered me that much until recently. It was my COPD exacerbation back in June that first put it in my head, where it has been festering ever since. I am not sure how I would do it, but without a doubt, I would find a way of not leaving the house before Monday, even if I thought I was dying. In fact, if I thought I was dying, I would wait until I was sure, as my chances are higher of living, while in the care of the ambulance crew and the A&E staff, than on any ward. I never felt this way until recently; yes, I have always known that nothing happens in any hospital over the weekend; no surgery; no consultations; nothing major; but I did always believe that it was the place to be, if you are truly ill. A ghostland or not, I have always believed that you were always taken care off and there was always the right people called if needed, yet now, I have my doubts. I don’t know what the stats were in the past, but the ones bandied about now, sound horrific. Then when I heard a doctor saying that it was the parents faults for not coming in during the week, I really began to wonder. Apparently, people don’t want to take time off work, get too ill, and then die at the weekend in the hospital. Really? Personally, I would have thought most don’t want to waste their weekends, waiting for none existent Doctors.

I am usually a reasonably level headed person, yes, hospital staff need their time off with friends and family like everyone else but is this practice, of virtually closing down at weekends, really safe, or in line with the rest of our 24/7 world. As I laid out in the first paragraph, there are loads of reasons why weekends don’t exist, surely medicine should be one of them. I don’t understand, how anyone would enter the medical profession at any level, expecting to have Christmas day or New Years off, any more than I did, when I started working in a bar or as a DJ. When I was DJing, the second time around, I didn’t even have a day off at one point, for a whole 3 years and not a single holiday for 7, it goes with the job. You take the money where ever it comes from, whenever it’s offered. Neither of those roles is exactly life-saving, or vital, medicine is. I’m not saying our hospital staff should work that way, but I’m saying for the umpteenth time, that the system needs changing. Any system, that leaves people actually worried about becoming even more ill than normal, on certain days of the week, has to be wrong. It doesn’t matter if it is the hospital, or my normal pitfall, a GP surgery that has a half day mid week, isn’t working for their customers, the patients. The greatest problem with the NHS is the very thing that we all love about it, it’s free. If all hospitals and GP’s were commercial enterprises, rather than funded through government, they would be very different. It isn’t always about throwing out what is there and starting again, but in the case of those who are managing the NHS, I don’t think that would be a bad thing. If they brought in several of the CEO’s from big business to run and restructure it, along the line of good practise and good business, ultimately, it would become a safer and better place for both patients and importantly, the staff.

Any medical system, where ever it is in this world, if it leaves it’s patient fearing the days of the week because they can’t get the care they may need, is failing. From documentaries, social media and personal experience and feelings, that is exactly what is happening in the UK. I dread every weekend. I never used to look forward to them, but until now, I never dreaded them either. In June, I remember all too clearly, literally lying in my bed on Friday morning, trying to work out, if I should give in there and then and call an ambulance, or could I make it to Monday, that’s wrong. Right now, I am not that ill, but I still look at the weekends as a danger zone, somewhere to not enjoy myself, but to take extra care of myself, simply because I know, the care I might need, just isn’t there. That can’t be right.

Please read my blog from 2 years ago today – 08/11/2013 – Where to next

I swear this house is dropping 10 degrees daily. Despite giving in and putting on the heating a last weekend, I have been forced to tweak it up slightly each day in the hope of finding the point where it can…..

The Medics descend

If life was predictable then it would be boring, right? well I would really like some boredom right now. I had a call this morning as I expected from the District Nurse, I have a greed for her to come here on Monday to try the suppositories again as they worked better. I also agreed to my GP actually coming to my house mainly to examine my stomach, just to ensure there is nothing he can feel that could be possibly causing the problem with my bowels. He also wants to take a look at my right leg, I showed the nurse the other day that it is very swollen and even thought I have taken the diuretics, I am lying down for more than half the day and sit mainly leaning on my left side, it just doesn’t go back to normal. I also recieved a letter yesterday which I have already managed to loose to let me know someone is coming next week to see if they can improve the cushion I sit on, as the one I use now the gel has burst and it is uncomfortable. I think they will be here on Tuesday or Thursday, it doesn’t really matter as I am always here, so I can’t actually miss them can I.

So here I am suddenly with more medical people than I know how to put up with, descending on my suddenly. It is all a little over whelming to be honest. I suppose that it is good thing as I am long over due a checkup, there are loads of things that if I had been mobile, I would have been to see my GP and I haven’t. There is this strange little voice that keeps telling me that I shouldn’t call the Dr to come and see me, as I am wasting his time, the traveling back and forward for what is probably nothing of any importance. I think there has only been two occasions when calling a doctor to my home has felt right, once when Teressa was really ill as a baby, and being a first time Mum panicked at her temperature. The other was when I had pneumonia and landed up on oxygen in a hospital bed for a week, neither were wasting their time. Other than that I have always got their myself, either to the hospital or the surgery. I guess it is another part of my being independent, one of those steps of letting others help me when I need it. Still hard. At least I have a few days before he visits, so I have time to settle the idea in my head and possibly to make a list of the other things that bother me and I would like checked.

The stresses of this week is doing what stress does to anyone but with the added little nasty twists that MS can think up, although I had my meds increased just a couple of weeks ago I am once again in pain, especially as usual my legs. I could right at this minute curl up in bed and sleep for the rest of the day. I might just do that but I have to wait first for Adam to call in an hour, I can survive that I am sure.

Dark before more dark

This morning I woke with that puffy eyed feeling that told me my day of on and off tears was still visible to the world. I had gone through the afternoon having a few drinks and distracting myself with mindless games on my PC. I did go to my bed as normal but I wasn’t able to sleep, lying there I was making things worst as my mind was running through the most hellish imagined future it could find. As tired as I was when I heard Adam unlocking the door I got up as I wanted to talk it all through with him. He came in as he often does in a foul mood, I know I just have to let him come in and bang the odd door whilst mumbling away to himself. So I waited in the living room, eventually he came through, flung himself onto the settee and in seconds he was snoring. I have never seen anyone go to sleep so fast, I just couldn’t believe that I told him on the phone at lunchtime, he then came home, said nothing, and went to sleep at record speed.

He woke an hour later, still saying nothing, I asked him when he was going to go to get the prescription from the chemist for the Oxycontin, I had spoken to the Doctor on Monday as I had almost completed the two week trial, and we agreed to the actual dose increase. The prescription arrived in time as I had enough of it for last night but I needed it for this morning. I had of course discussed all of this with Adam, just as we had talked about the whole trial and why it was being done that way, but he snapped at my ‘You didn’t tell me you needed it’, we had talked this through so many times but he apparently hadn’t listened to any of it despite us actually talked about it on Monday evening. I have to admit I lost it, there was no calm discussion just an argument, I added then what had happened in the morning and why he hadn’t said anything, other than a snore. He said he didn’t think it was a problem. I think to stop the argument going further he announced he had to go if he was going to get to the chemist before it shut.

I sat there, tears running and lost as to what was going on in his head. He seemed from my point of view to have not listening to anything I have been telling him for the last few months, and although he has said he reads my blog, there was none of it in his head. He was gone for an hour and came back with nothing the chemist was shut. He promised he would get up early and go before he went to work. We then actually talked, no argument, no raised voices, just talk. He couldn’t see or understand at first what was upsetting me so much, when I said it was the start of the end, he was even more lost as to what I was talking about. I tried again and eventually it clicked, he saw that by having to let anyone do for me what I couldn’t, that an outsider coming here for any reason, was the point where things change from me or us, to who ever can deal with it, and that was the beginning of the end.

We talked it through and the tension and anger of earlier was gone, the reason of him not understanding or remembering was pointless to peruse, somehow it had happened, what matters now is that we sorted it and we are saying the same things for the same reasons again. Settled again we returned to our normal life, accepting of where we are. In a strange way this morning I am glad it all happened the way it did. There has been a lot lately that has felt brushed over or aside, breaking that has cleared the air and I again feel more secure in our relationship. I love him so much that any argument like last night hurts, but clearly they can be good as well. This morning as promised he fetched my tablets and there was no tension at all. All of last night was probably 99% me, I was feeling so sorry for myself that I expect simply expected that he would understand it without any words from me.

The phone just rang while I was reading this back and it was the Surgery Nurse, she is coming to see me tomorrow morning at 10am, she has an idea that she want’s to try. There is apparently a different type of enema which is in a longish tube that I might manage myself. You would think that this would fill me with joy, it doesn’t. I hope it does work but I at this second have no faith in her idea. She tried to tell me that I was constipated, despite my telling her I am actually the opposite and have been for years several time, she then said so you have a blockage, I tried again, she then suggested stronger laxatives, she wasn’t listening. I had the feeling that she has an idea in her head as to what is happening and what I am telling her doesn’t fit so she is ignoring it. So tomorrow I will let her in and I will talk to her and I will try her idea and we will see, but she to me has no idea of what the problem is. A ten minute phone call and all the relief and acceptance I had started to sort out is back in pieces.

Common Sense is vanishing

I am constantly amazed at the lack of knowledge of simple things, common sense situation that I see and hear daily on the TV. A prime example being those on the news in the past few weeks, almost daily saying they couldn’t understand why there was a drought, as they had had an hrs rain that day? Everyday from when the drought started in England, we heard a member of the public, followed by another one the following day saying the same thing and each showing to me a huge lack of what I would call common sense. The scary ones were those who were wearing suits and clutching briefcases with middle-class accents, the business men of our world, the wealth creators, then equally scary, the mother with children in tow, the people who are responsible for the next generation, each showing a staggering lack of thought. I sat here nightly in total disbelief that the simple principle of our water supply evades them, especially as almost nightly it was explained. Sometime I can be a little slow to pick up on things but I have always common sense, I have always seen that logically you can’t dry you freshly bathed puppy in a microwave, so why do people do and say these things?

I don’t know if you have ever bothered to read those warning stickers on everyday items but some of them just amaze me, like the warning on a candle that I actually saw and read saying you should handle with care as you can burn yourself on them. Some I am sure are there not as a warning of a possible danger, but as a defense to avoid being sued, either way I see it as sad and either way I see it a worrying.

I have absolutely no qualifications to my name other than a couple of certificates I acquired on day courses when I was managing a bar, I went on the courses because I had to. My point being I am not in quotes an ‘Educated Person’, so if I know that it takes weeks of rain to filter though refilling and raising the ground water levels, to refill a reservoir, why doesn’t everyone? I don’t remember ever learning these things, or going out of my way to find out, but I know because it is logical. The same way as it is logical that if I climb a ladder as an MS sufferer, the likely hood is I will fall off that ladder, common sense I didn’t need an MS Nurse or specialist to tell me. So as clearly not a stupid person why do they every year send my a letter requesting for a specially trained MS Nurse to come and visit me. After years of saying that I was fine and I didn’t need or want to see the nurse I decided last year to give in and let her come to the house, to be honest after talking to her on the phone for about twenty minutes I just gave in.

She arrived and settled herself down in my living room and explained in words and a tone that I would use to a toddler, what it was she was here for. I just nodded and let her get on with it. There were a large list of questions all of which the answers were in my medical notes which she had with her, but I answered them, after about an hour she smiled and said ‘Well there appears there is nothing I can do for you’. She had from the first time I spoke to her, fallen into the section of people I described at the start of this piece, but clearly educated and clearly paid well as a specialist. I told her clearly on the phone before she came and again at the end of our talk, that I knew there was nothing she could do and if I did need help I would ask for it. Through out her visit right to my final comment she wrote things down. The phone rang this morning, guess who it was and what they tried to insist was required?

I am constantly amazed at the lack of knowledge of simple things, common sense situation that I see and hear daily on the TV. A prime example is the NHS cuts, it might just be that the NHS need to employ a few more people with common sense, rather than fancy educational certificates.