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…….

 

 

 

 

 

Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens. It is sudden and complete, in seconds everything changes, I am exhausted, feel physically ill with it, as in a bit sick, dizzy and feeling a little like being drunk but I’m not. The only solution is to go to bed, which can happen anytime from 8pm to 9pm, just depending on how bad it feels. I lie for just a few minutes feeling worse and worse before suddenly going to sleep. It is incredibly hard to spend all my daytime alone and them not being able to stay awake when I do have company. What I don’t understand at all is the sudden change, I am honestly really awake and feel as though I could easily stay up until 10 or 11, then there is this crashing out, like I jumped of a cliff or something. It never happens during the day, although I sleep for a couple of hours every afternoon, then it is a more normal gentle slide into feeling tired and then tireder until bed is my selected solution, normal if you like.

Last night was the normal, to be honest I could have gone to bed earlier than I did but I was waiting for Adam to come out of the shower. By the time I did get there at 8:45 I felt as thought I was almost ready to be crawling rather than walking. As normal the 11hrs of sleep felt like seconds and when the alarm pulled me into being awake, I struggled to let the night go. In the last few days I have read loads on sleeping patterns and those connected to all and any of the conditions that I have, but I can find nothing that is the same as how I feel. Those who have been reading for a while will already have realized that there is one thing I hate more than any other and that is not having a reason for something. I suppose that is understandable having spent nearly 20yrs fighting to have a diagnosis of my MS, but it just niggles and niggles at me all the time. So if any of you have the same problem I would be interested to hear from you as I feel kind of alone at the minute with this problem. I don’t like alone, lol.

My stomach is really bad in the last couple of days, more and more pain, bloating and discomfort, although the letter that was read to me over the phone has arrived, I haven’t received an appointment yet. The letter doesn’t seem to hold out much hope though, the final line she says she isn’t sure if they can do anything to improve my symptoms due to my MS, I still want to talk to them again as I want it in black and white if you like, that all my symptoms are due to my MS and if there is anything, even something small, that can help I am willing to try.

I phoned to book the ambulance for the 8th when I am going to the pain clinic and nearly lost it on the phone when they told me they couldn’t supply a two man team with a stair climber to get me to hospital before 10am. Every time I call them the rules seem to have changed and I thought that this would mean that I would have to make yet another appointment and wait yet another 6 to 8 weeks. I booked the ambulance then called the clinic to find to my relief that they were fine about it. Although I am meant to be there for 9:15 they do now allow for this when you are being brought to clinic by hospital transport. What is now worrying me is that they said there are only 4 slots where you can book the stair walker each day, so I am now wondering how long I will have to wait to be brought home again. I really don’t think they understand the stress of these constant changes and uncertainty cause for people who are ill. After all they are there to supply a service and the simplest thing to do I would have thought is to inform the patients clearly of the rules at that time, as well as to tell the clinics, after all they should have known the situation when they gave me the 9:15 appointment. I foresee another day of things going wrong!

Talking shorthand

Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other Sci-fi is totally clear in most things she does. The date is set for the 24th of January and I realised a couple of days ago I now have a date to open the bottle of Champagne that I have had in my fridge for the last two years, I will at least be able to raise a glass to her and John on their day.

Compared to this point last week I feel so different, I knew that I would settle again but I didn’t realise just how much I had been carrying around inside myself, partially hidden even from myself. Although I knew all that spilled out I had engineered everything so that I didn’t have to face it and if Teressa hadn’t visited I would still have it all nicely confined. I actually think that my first visit to the hospital was when I scratched at the surface but that visit didn’t last that long and I shuffled myself back into hiding. I think letting it all out is why I found my return visit easier and that I managed I think to get the details across to the doctor in a more complete manor. Yesterday evening I suddenly realised that my speech patterns now are almost a shorthand version of talking, I skip words and say what is enough needed to be understood, if it isn’t then I get into a spin and try again but saying the same words as if by repeating them, they will make them understood, pointless but it’s what I am doing for some reason. The strange thing is I don’t actually remember when I went from the odd stutter and slur to talking in riddles with a mess of sound within it. I know see why Adam gets annoyed with me at times, as he is having to decipher all of it, making it less of a conversation as there is only one person doing the work, I am taking the easy way out and just not really talking. Actually I am being a bit hard on myself, as that sounds as though I am doing it by choice and choice doesn’t come into it, I don’t have any.

I seem to be swaying back and forward between feeling great, elated as there is this huge weight off of me and feeling like I could sleep for ever and there is no where on earth that I would rather be than bed. I am somewhat drained I know that, but I have a few weeks ahead of me to recharge before the next thing happening for me to get through. I don’t have a date for the Endoscopy, but I expect it will be a couple of weeks away. I have recieved the appointment from the Breast Screening Clinic, this does look as though it is going to be one huge problem. They hold the screening right in the middle of Glasgow and they make a point of saying that if you use a wheelchair or have mobility problem to let them know. I know the building they use in Nelson Mandela Place and it is not disabled friendly in any way. This is going to be what I would call interesting. One of the first entry on the to do list as I have to phone them on Monday.

Having spent 5yrs here in my flat seeing no one and not having to deal with people I feel some how under attack by the NHS, on top of the two appointments I have mentioned already, I am also waiting for an appointment for the pain clinic, a visit from the OT and to be honest, it is all really too much all at one time. I know all of it is for my own good and that I wouldn’t have even mentioned all of this to anyone as even important in anyway a few years ago, now it just feels really daunting. I suppose these feelings are all part of my slide down the slope, but like screaming “I am in here”, this makes me want to scream “leave me alone”.