I was intending to write a scintillating blog post today to show you all that I am still the 'old' me - but the panic over the non-arrival of the Ketamine, which is the only barrier between me and pain, rather overtook events.
So, since it has been a highly successful day - the deposit raised, a superb and experienced agent found who is more than happy to act for me, and I am overwhelmed by the support that has been shown to me, I am going to cheat and reprint something I wrote a week ago, which may help to explain why I am so determined to publicise this obscene situation of the NHS being skinned alive for money.
"I was moved from home to hospice the night before Mothering Sunday. Given that my two children, who were adopted 50 years ago, had only made contact with me a few weeks beforehand, Mothering Sunday held a special significance for me, and falling sick again was the last thing I wanted to happen.
Sadly, Mr G was forced to call an ambulance to take me to the hospice where the pain could be better controlled than it could be at home.
During the move, the ambulance men took control of all my drugs, especially and including the gabapentin which is a background nerve pain control drug and the abstral which is a sub lingual ‘emergency’’(synthetic heroin) top up medicine.
Late that evening I started being sick and it was realised that I had Sepsis yet again (second time!) I was moved by ambulance to the Norwich & Norfolk hospital. The drugs were 'accidentally' left behind at the hospice. The focus was on getting me on antibiotics and curing the sepsis. When the gabapentin was called for, it was nowhere to be found, nor was there any more than a duty registrar on call. The hospital was on black alert.
My consultant palliative care doctor was called at 11.30 at night because I was in agonising pain. (What I thought was agonising pain - I had much to learn!)
She prescribed Ketamine in a pump driver and asked for an emergency MRI scan to be done to see why my back had become so suddenly agonising.
She was at my bed side at ten to eight the following morning, demanding to know why I wasn’t being given the background medication of gabapentin etc. It was reinstated. I hadn’t had any since the Saturday morning.
At 2 pm I was due to go for MRI scan. I was due to be give a high dose of Abstral (synthetic heroin) to get me through the lengthy MRI scan since the pump driver needed to be removed for the scan. (metal needle - an absolute no no)
It requires two staff nurses, and two sets of keys to issue this controlled drug (yep, the same one I have had sitting in my bedroom for months!) but which had gone missing - but that is hospital regulations.
By 10 past two, the required two nurses and the keys had not been found. I missed my slot……..
The MRI porters said they would be back - no time given.
At 5 pm, with visitors leaving, other patients in disarray (this is a high dependency, high drama ward, every one was like me - a ‘hoverer’ - we could go ‘either way' and do. It is like that round the clock - not actually intensive care, but the next rung down.
So at 5pm, the MRI team arrived again, this time the keys and the nurses were found, a tablet slipped under my tongue, and the pump driver removed, I had less than 12 hours of background gabapentin circulating in my system, and (I thought) the high dose Abstral to help me through the scan. Off we shot, racing along corridors, at a rate of knots……..time on the MRI scanner is severely limited.
I could barely tolerate being laid flat, but it was necessary that I lie completely flat and not move a muscle.
The MRI scanner is not like an ordinary scanner; it jolts, it vibrates, it makes such a noise that they issue you with ear defenders, and then it takes an echo sound up and down every vertebrae in your back.
Normal people come out of it swearing blind they will never ever another one (ask around your office, someone is sure to have had one sometime!)
I descended into such a pit of pain that I barely know how to describe it. People talk of near death experiences and floating upward on fluffy white clouds through pastel colours and soft melodious sounds.
I fell through a black hole into a pit of screeching, discordant, cacophonous, dissonant, jarring, evil smelling, evil tasting, world of swirling hideous images that I didn’t know existed.
I was scared to call out in case the extra breath increased the pain, I was scared to breath faster as you naturally do to control pain, I was scared to breath too slowly in case it caused me to ‘gulp’ a breath……I was frozen by fear that something might stop the scan and force them to restart it and prolong my agony.
I didn’t know it then, but I was undergoing an MRI scan with an exposed spinal cord (which in fairness they didn’t know either) with nothing more than 10 mg of Bu-morphine under my tongue - about the equivalent of a baby aspirin under the circumstances. I had been given another patients ‘pain relief’.
Thank God, she (or he) had never called for their pain relief, because they would or could, have been given mine which would have blown their eyeballs out….
The mistake wasn’t realised until the control drug audit late that night, when it was discovered that my medicine was still in situ. It was also discovered thanks to the MRI scan that I wasn’t just an old woman complaining about severe back pain - I had spinal compression which I had been managing on the equivalent of a baby aspirin.
The following day I had emergency radiotherapy to shrink the tumour which had invaded T5 of my spine, climbed up through T4 and kicked a hole in T3 in order to wander off and find somewhere else to play.
I have screamed blue murder about the foibles and fallibles of the NHS at lower levels, but when it was realised the damage I had sustained through the cancer - and not just because of the medical accident - I have received nothing less that the highest level of nursing care, the total attention of an entire team - and I do mean it - of palliative care consultants, who have moved heaven and earth to get me out of that unit (which is a nightmare 24 hours a day by the very nature of the place) and home, in comfort, pain free, with 24 hour nursing care, and a 24 hour ‘carer’ in addition. I cannot fault in any way whatsoever, what has been done for me, and that I am typing this today is testament to their skill.
Ketamine is licensed as an anaesthetic, not for anything else. I am receiving 250 ml of ketamine, 175 ml of fentanyl, and 10 ml midazolam 24 hours a day with diamorphine sitting in a box, ready for the district nurses to use on demand. Not even the GP can change this prescription - it is available only by direct contact with the hospital and my Palliative care consultant who is licensed to use it. The drivers have to be checked every 3 hours to make sure the correct dose is pumped into me round the clock. The fact that my brain is still active and functioning is nothing short of a miracle.
They have done this for me because they have always known it is my wish to die at home with my husband. And now that I have been reduced to this state and gone through what happened to me last week, they have pulled out every stop to make it happen.
60 beds are closed in that hospital. Not enough nurses. The ambulance leave past my window with blue lights flashing and bells screaming round the clock because they have had to wait anything up to an hour to offload their last patient because there is no bay free in A&E; there is no bay free to move the A&E patient onto a ward, because there are no beds empty. Patients are sleeping in offices. It has happened to me, and I wrote about it last October when two of us were forced to sleep in the acute oncology unit overnight, because there were no beds on the high dependency ward and we were judged the two most likely to survive on our own in AOS.
Two nurses and two health care assistants to serve 16 high dependency patients doesn't begin to be enough. When one nurse is busy, she cannot be in attendance to check the correct dosage of a controlled drug as ‘second nurse’.
That is how mistakes get made.
The second nurse dashes alongside, checks the wristbands, says OK and flashes their digital cards at the computer, all the while knowing that someone else has a nasal pump about to fall out of the nose, or their blood transfusion is coming to an end, or their platelet count is now an hour overdue. That is what they are supposed to do.
Of course they make mistakes…….and people are likely to die.
They are also, incidentally, expected to carry a separate phone with them at night for the Acute Oncology Service, and I have heard them, reassuring a husband whose wife has just been sick for the second time at 2 am and he is worried that ‘perhaps’ he should bring her in - and they manage to sound as though they have had their feet up all evening just waiting for just such a call; except that I am looking at them taking that call whilst loading another pump driver for me, bending down to pick up a dropped pen for the lady in the next bed who is getting better and might be home soon and then rushing off to attend to a blocked nasal pump which is frightening the life out of someone whose bile duct is throwing up vile liquid the threatens to choke them. Sorry to be so graphic - but you need to spend 24 hours on that ward, never mind two weeks, to understand what a truly fragile, frightening, place it is.
I know, which I shouldn’t, who the second nurse was who sanctioned the drug that was given to me when I went into that scanner - she sat on my bed late at night and wept hot wet tears of frustration and hurt that she might have been responsible for the pain I endured.
She will never, ever, ever, make that mistake again. If the chief pharmacist asked her to second signature a drug issued out of her sight, she would make him count it out in front of her. She is only three months qualified, and terrified she will lose her job over it. I hope not, because she will be a brilliant nurse, who will never forget the day she made such grotesque mistake, and never make it again.
And you know the quickest way to get her fired?
Reveal the above paragraph.
She admitted liability in those ten minutes weeping on my bed.
The lawyers would have her out the door in ten minutes flat.
Money won’t make me walk again.
Money won't make her remember to actually check, not just sign.
I then had to spend two days watching this ward, already teetering on the edge of collapse, or operating at the outer rim of ‘controlled panic’ as I would put it, undergo a two day Care and Quality Control audit, because of the drug mix up. It put extra stress and strain on everyone. So what was already a bad situation, was made even riskier by the tension of the CQC audit.
Lessons will be learned,
Knuckles will be rapped.
Routines will be changed.
But making it possible for me to sue them wouldn’t achieve any of that.
Nor even give me that nurse's tears to hold onto, to know that she is truly sorry for what she inflicted on me.
56 Billion pounds being spent on lawyers and claimants is beyond obscene. The NHS is a 'free' service. Yes, I know we pay NI contributions, but we cannot continue to demand a 'free' NHS - and yet expect to be able to sue when they make mistakes.
People don't seem to understand that you can only get financial compensation if you can prove 'fault'. It is not the damage that counts - it is the fault. You could have two babies born with cerebral palsy - they require the same care, they have the same needs. In one case the lawyers can prove that some incident occurred that was negligent. That child might be awarded anything up to £6 million pounds - the damages are calculated assuming 'private' nursing care. In the other case, there was no negligence, it was just 'God's will' - that child will receive no damages.
They will both receive the same care from the NHS - NHS care is not means tested. (Social care is - that is a whole 'nother subject.) Should that child die before the age of maturity at which they can make a will - that money will automatically go to their parents. When they can make a will, those unspent millions will go to the person of their choice.
The NHS is starved of money because it is going in the front door - and straight out the back door to the lawyers. One case reported to me was of a lawyer who claimed £86,000 in order to obtain £1,000 'compo' for their client.
You want to know why your Granny has to wait two years for her hip replacement?
That is why - help me to put a stop to it.
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