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…….






What was the point?

Everything is behind time today, as I have at last been to see the Pain Clinic. I have always refused to go but then thing got bad and the MS Nurse convinced me that they would be able to help me. I really wish I had stuck to what I had been doing for years, refusing. Already I know you all have realised that they can do nothing to help me, yet another door has slammed shut on my first attempt to go through it. I sat with the doctor for about half an hour I started at my feet moving upwards, at each step he wrote it down and nodded. I went over the bowel problems and I listed it all step by step, the nods continues along with the odd question about the words I chose to describe things, eventually I had reached the last section and I waited as he for the first time looked at my list of meds that I am on.

We had a discussion about how well each worked, he was concerned by the level of the MST I am on as it is close to the max anyone would be happy for me to be on. Again we went over the problems that as time goes on I will need higher and higher doses, eventually this would be a major issue. I knew all that but there is no other option, it is what lies ahead and neither him nor I can change that. Then at last we got to the point the whole thing was about, what they could do to help me. All he could suggest was that we changed two of them for two other drugs. The drugs he said that were available might not work any better than those I am already on, there were no guarantees but for some they give a little higher pain control. The change over would take a few weeks and making the change would make me a lot worse for the first few weeks and at the end, well who knows, better, the same or worse. Next he told me about two other drugs that I have not tried that might have some positive effects, both are cannabis based and one rather hard to get approved, but he had little faith in either of them for those in my situation. He had prescribed them to a few of his patients but none had found them helpful in any way. I didn’t ask at the time but I should of, if they didn’t work, why tell me about them.

He had through out been trying to tell me that I would be better off seeing my Neuro, I told him that I hadn’t see them for years at which he was shocked. I went over how I used to see them every year, but when I became housebound I saw my Nuero who sent to see rehab and a physio. both were totally direct in that they couldn’t help me, there was nothing more available. I never heard from my Nuero again, that was 5 years ago and not a letter nothing. Not only did it feel as though I was abandon, I thought that it was because they could do no more. He checked my on line records and was surprised to see there had been no follow up, he was sure it was an accident. Accident or not, if they can do nothing and they want me there just to nod there heads and say we will see you in a year, what is the point.

I asked him directly if he was me, would he go through the medicine change over and try the other meds on top, he said no. As I feared here is yet another Doctor to add to we can’t do anything list and another letter onto my file saying just that and that he isn’t going to see me again, as there was nothing he could offer me. So I am now home again, exhausted and wishing that I had stuck to my first reaction to the Pain Clinic idea and not wasted my time morning having to go up and down in that horrid stair climber, being dragged around backwards in a wheelchair and draining my days energy for nothing. I wish I could give you all a more positive account of my experience, but I can’t. Adam has returned to work and once I have this posted here and on twitter I am going to my bed, I need to sleep this off and start on a brighter mood later.