Someone will die

When Adam called me yesterday at lunch time, there was something in the tone of his voice, that told me there was something wrong. The other day when he was at home there had been one of those automated phone calls to remind us that I have a hospital appointment next week. It turned out that Adam hadn’t booked the transport, despite my telling him when he took the responsibility over from me, that he had to book it as soon as he was aware of the appointment being made. As always, I couldn’t remember why it was important, and he was determined to do things his way. Yesterday, he called to book not just the ambulance for next week chest clinic appointment, but also the one for two weeks later at the breast screening clinic. He was stunned to find out, that there was no transport available, for either date. In fact, there is no transport available until the beginning of April. When I had gone over the system, explaining that you have to book early, my brain did it’s usual, it totally blocked out the reason why, all I could say, was that was the way it had to be done. It was about twenty minutes after he called, that I remembered, this happened once before, several years ago. It is one of my brains favourite tricks, I know all the rules, all they things that have to be done a certain way, but why? Well, don’t ask me, I don’t have the first idea, just the knowledge. At that time, just like this, we have been forced into rearranging the appointment, because, without the ambulance and their stairclimber, we can’t get there.

My chest consultant asked when I thought I should go back to see them. I said six months, but he wanted to see me in just four. There was an issue with the first booking, again with the transport, if you aren’t there first thing, you don’t get home for hours, often late into the evening, as it wasn’t a morning appointment, we had to change it. It was moved by two weeks, which on its own, is not that bad really. Now after speaking to the booking clerks, Adam has managed to book it and the transport, for the 4th of April. We were lucky, getting an appointment that close, it was only because there had been a cancellation. He is sorting out the other appointment this morning, but I just had a phone call from the ambulance service, cancelling the 4th of April transport and telling me, there is no space until after the 7th. Unbelievably, the “Hospital transport service”, as they like to call themselves, are now running the NHS, for those of us who are disabled. Adam is now going to have to go back to square one, and rebook everything. No matter what dates he manages to arrange, it’s beginning to look as though it will be six months between my appointments, not four.

This of course also throws up other issues, ones that must cost the NHS a fortune each year. How many appointments are cancelled each year, due to this problem, meaning doctors time being wasted and waiting lists just getting longer and longer? They spend money every day paying for staff to sit and make appointments and to manage individual consultants lists. No matter how proficient they are, if the transport service forces appointments to be cancelled, there will be gaps, points when wages are paid for doctors and nurses to be ready to treat patients, that is not being used. Every time an appointment is shuffled, it just makes those list artificially appear longer. Targets will be missed and all due to transport, not the medical service.

I find the whole thing unbelievable. If anyone wanted proof, that they system isn’t working, well here it is. What happens, if you consultant wants you to return in a week, or two weeks? What if it was essential for that appointment to be then, due to treatment plans? Would they just leave you at home to die, as without a doubt, this sort of service if it’s allowed to continue, will result in just that. It could also result in patients who could easily be treated as an outpatient, having to take up a hospital bed, something that is in short supply these days. Bed blocking, is constantly blamed on the care service not being up to the job. I bet if it were possible to investigate, there are people who are in this exact position right now, sitting in a bed, twiddling their thumbs. I said the other day, that the housebound and severely disabled receive a second class service, well, I’m changing that, we get a third or fourth class service if that.

I asked Adam to take over the arranging of hospital appointments and the transport, not only because, I find the phone hard to deal with, but I also found the system frustrating, even when it worked in their version of perfect. Just hearing all of this second hand is already stressing me, so I feel sorry for Adam. I feel even sorrier for other carers as Adam works for the NHS, in the very hospital where I go for the bulk of my appointments. He knows the system, not only the system but all the people who work in it, so it has to be easier for him than it is for those other carers out there. All he has to do is walk down the corridor to the very clinic and have a chat with the receptionist. He can, in fact, check the computer himself, so he knows exactly how the lists look and he can stand there looking at it, while he talks to the transport service. Everyone else, can only book an appointment, cross their fingers and try and book the transport. How long is it going to take, for the NHS to realise that their system is not suitable for purpose?

I was on the verge of publishing this when the phone rang. It was Adam, he just wanted to let me know that it is all sorted, well for the chest clinic anyway. We have both appointment and transport now booked for the 25th of April. As for the breast screening clinic, well the girl on the desk couldn’t give him a date over the phone, and will be posting it out to us.

 

Please read my blog from 2 years ago today – 10/03/2014 – Lost and in pain

I’m not here today. I don’t know where I am but I just know that I don’t feel connected to myself, somehow lost. I know in the last few months this has happened several times, but I will never get used to it, I guess it is as close to one of my ultimate fears as I ever want to get, my mind so taken over by drugs that I can’t find myself. I don’t blame the drugs for this because if it were them, well I…….

 

 

 

 

 

Too ill for basic care

If there is one thing throughout my entire life I have hated, it is being proved wrong. I know it’s bigheaded to believe that you are always right, but when it comes to my own body, I thought I had, at least, one area of speciality that no one could argue with. I was daring to think that after 4 days of almost peace, where my pain levels had slowly begun to settle, that the bad spell, was on its way out. Last night, proved me wrong and it did it in style.

I had spent a very uncomfortable evening sat on the settee. Adam had to fetch me some of the antispasmodic the doctor prescribed for me just before 8 pm, as my stomach was tied in loops. I’m not really sure if they helped or not. Yes, the sharper edges of the pain was reduced, but they brought me no comfort what so ever. It is now my third time that I have tried them and compared to my worst spell, they worked miracles, but compared to me average, they did nothing. He has prescribed Buscopan, which is a very common drug for IBS, something I don’t have, according to the tests run by my consultant the last time that I saw him, despite the fact that I have all the symptoms. As always when I am unsure about the effects of a drug, I give it a quick Google, just to see what their effects are supposed to be. It was totally unhelpful, but I had to laugh at the final line in Wikipedias synopsis “It is also used to improve a death rattle at the end of life”. What on earth has that got to do with bowel and bladder problems? So many drugs seem to have some other odd usage, but at least, I laughed. What I did find out though has made me wonder if I should be taking it at all. Apparently, it shouldn’t be taken For “certain conditions when there is reduced bowel activity”, but it totally unhelpfully doesn’t say which ones.

By the time I went to bed at 9 pm, I was delighted to be there. Sleep had been dragging at me for what felt like forever. My stomach was in a mess, with pain showing up all over the place and there were area’s that felt as though they were being badly stretched. Experience was telling me that sleep was my only option for peace. Within seconds of lying down, I feel into a deep sleep. 11:30 pm found me awake, drenched in sweat and in pain, really bad pain. As I sat up, I knew I was going to be sick and that I had to move as fast as I could. I took a risk, a huge risk and left my wheelchair behind me, as it would do nothing but slow me down. As it turned out, it was a good decision. With a wrench, that came from somewhere around my waist, I started to bring up my last meal, eaten at 4 pm. Just as has happened in the past, as I was being sick at one end, urine was leaving me at the other and there was nothing I could do about it. I did what I could to tidy up, but my entire body was shaking, I felt terrible and I had used what little strength I had pushing myself to my feet. I had grabbed my dressing gown, which was lying over my wheelchair and had brought it with me, as I wrapped it around me, I sat on the loo to do two things, gather myself and to try and empty what remained in my bladder. It was after that, that I called out for Adam.

I had staggered my way to the bathroom door, fighting the pain with every step. As I reached it, there was Adam. The sudden vision of him standing there waiting for me, listening to me throwing up, started the shame meter. He sorted me out and took me in my wheelchair, which he had fetched long before I called, through to the kitchen for a cigarette and to give me some much-needed liquid. I sat in silence while he cleaned up the mess I made in the bathroom. Once again, I was in the horrid situation of knowing my husband was having to clear up my urine. If there is one thing on this planet that will strip you of all embarrassment, it’s shame, and I had it in buckets. It doesn’t matter how ill you are, whether or not it is out of your control, or any other fact you can think of, you still feel that shame. When Adam returned to the kitchen, I didn’t know how to look at him or what to say, other than “Sorry”. To make matters worse, as I put out my cigarette, I hurtled once more for the bathroom and doubled the amount I brought up and the mess he had just cleared.

This morning, I still feel terrible, but that’s not new. My bowels moved without pain or issue and the pain in my abdomen is still there, just as it was last night, last week and last month, but not at bad as it was last night. I don’t feel sick, but Adam and I have discussed it and are in agreement, I’m not going to eat today, just lots of liquid. I’m also going to put a large measuring jug that I have, into the cupboard in the bathroom. Hopefully, if this does happen again, I will be able to grab it, so I don’t leave myself feeling shame, just because I’ve been sick.

I don’t have a clue what else I can do, other than speaking to my doctor again on Monday. Whatever is happening down there in my stomach, is getting worse. When you are housebound, your options diminish dramatically. If I could get down those damned stairs, I freely admit that I would be now sitting in the emergency room at the hospital. I would be there, just so a doctor could check my abdomen to be sure there is nothing they can find that could be causing it. I would be there, not because I feel this is an emergency, but because it would put my mind at rest that I’m right. I can’t get down those stairs, so I’m stuck here. To get to hospital, I would have to call 999 for an ambulance, but I don’t believe that I need that type of attention. Doctors don’t come to your house these days, not for anything, not even when you can’t get to them. So I’m stuck, I can’t get that peace of mind, I just have to wait until I can speak to my GP and that’s not until Monday. Somehow, I doubt that even then, will I actually see him, or any other doctor, which is wrong as if I could get down those stairs, I would be in his surgery, not on the phone. My chronic illness has led to the situation where I don’t get the basic level of medical care, everyone else takes for granted. How can that be right?

 

Following a couple of comments, I just want to make clear that the point I am making is that being housebound, singles you out. Society has set up systems that work for the majority, and I don’t want to be treated any differently, just allowances made for the situation my health has left me in. If what is happening to me right now, was happening to you, you wouldn’t call an ambulance, you would simply go to where there is a doctor you can see, something I can’t do. The barrier of being housebound, is a barrier to my getting that basic care, that everyone else, takes for granted. On top of all of that, the cost to the NHS of my calling 999 for an ambulance is huge, followed by the cost of another to take me home again. This is one of those gaps in the system, one I have fallen into. 

 

Please read my blog from 2 years ago today – What’s missing….?

I woke this morning as exhausted as I was when I went to bed, but at least, I woke once more pain-free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as though……