How the NHS failed me and mine.
What it did, to the most important person
in my life and how it could happen to you unless
we do something about it!

Thursday, 27 September 2012

Something Happened!

"I'm feeling strange, she said". I glanced across from the road in front. She looked agitated, and her voice became slurred, as if slightly drunk. I froze for a second and then asked her to smile for me whilst stopping the car. I put on the hazard lights and looked at her carefully."Lift your arms and close your eyes", I said. She did it. I got out of the car and went around to her door and opened it. She then said in a normal voice, " my arm's a bit numb and my leg too". I asked her to smile again, stick her tongue out and raise and lower her arms. She complied immediately. I got her out of the car and helped her stand. "Walk", I said, and slowly she walked at my side and we turned and went back to the car. "It's on the other side now and my cheek's tingling". "It's changed sides!" I said. She concurred; it had.

I was gripped by fear. The signs although small and transient were nonetheless bad. I did not want to admit it, but the woman I loved was possibly having a stroke! I needed to act and fast, just in case it progressed. I got her into the car went to the driver's side, got in and turned around, heading, not without some trepidation to that hospital, the scene of our past trials at the hand of the NHS. My car screamed it's way through the Friday afternoon traffic, headlights on to try to clear a path. It was 4.30 pm and busy. It was also August. The new intake of FY1's would be there to greet me no doubt, anxious to contradict the view that they were presiding over a another 'killing season' as August is aptly named in A&E, and that's just by the doctors.

I made remarkable time, all the time hoping I would wake up and this would be just a bad dream. It wasn't of course, it was real life. I parked illegally by the Ambulance bay and helped J', who was not very ill just very scared, into Reception. Taking grasp of the situation, I shouted that my wife was probably having a stroke and to help me. That worked. They got her onto a trolley straight away and pushed it into the Department and then left us! And so the waiting began.

I stood at the side of the trolley, holding her hand and trying to assure her that she would be fine. She still had some 'tingling' sensation in her right cheek and was extremely frightened, but little was happening and the floor was filling with patients on trolleys. It was more than an hour before we were taken to a cubicle and a nurse (well a nursing assistant) said she needed some 'bloods'. As she said J' may need some IV medication she would insert a cannula. I was about to protest but J' stopped me. I do not believe in invasive procedures 'just in case' and there was no way she was going to be infused with anything without considerable evidence of need, but I held my tongue. She was also completely useless at the task, took many tries and caused considerable bruising in the antecubital fossa.

A Doctor eventually showed up after some two hours and conducted tests; the usual smile, open/close your eyes, lift your arms etc. He also tried the resistance tests (pushing/pulling against his hands). He then departed and shortly after the ECG/EEG trolley was wheeled in and a nurse applied the twelve leads and conducted the test. I don't have too much knowledge of this procedure, but sufficient to see there was no atrial fibrillation, which was a relief. She went away again saying that a doctor would come and interpret the test results, but before this could occur they came to take J' for a head CT scan. I went with her; they sure as hell were not going to separate us this time! She was not in there long and when I asked the nurse she had no idea of the dose rate of radiation she had received. But, I knew it to be 2 mSv or about 20 chest X-rays and because it's the brain we're scanning that's a lot. Again we were told that a Doctor would be along to give us the results.

Well, we waited and waited. They had left the charts and I checked for obvious problems. Her BP and pulse were very high and blood sugar too at 8.5 mmol/L, although the stress of it all and the natural protective measures of the human body would have been responsible for this I was certain, although even so 190/95 seemed high for someone who regularly records 120/70. Then, over three hours into the event we saw a Registrar who basically said that nothing on the test showed any abnormalities and he went through the routine tests again. I said I thought it was time to go as J' was becoming agitated and the situation was becoming more harmful than productive. As the 'event' had crossed the mid line (changed sides) I was pretty certain it was not a stroke or TIA (trans ischemic attack) and voiced this opinion. He agreed, although was somewhat guarded but did think J' would be discharged quite soon, to my care.

As it was August I suspected he had just been 'made up' to this position and was not really confident in his decisions and he went away saying he would return soon. He didn't. Yet another nurse arrived to say J' was being taken to the Stroke Unit on the other side of town! And of course she had to go by Ambulance, not with me, unless I abandoned my car. I reminded her to remove the cannula which she did reluctantly and I said I would follow the Ambulance. I talked with driver while he waited for his partner to collect the paperwork. He told me to follow him out and he would ensure we did not get separated, which he truly did, slowing down if I got caught at traffic lights. It was nonetheless a nightmare, with me anxious and extremely stressed at the separation from J' as I did not trust the NHS or any Doctor I had seen thus far. I was also bemused as to what had occurred and hated once more the prospect of being caught up in the 'machine' that passes for Medicine today.

We arrived twenty minutes later and J' walked in accompanied by me and the driver. After a couple of minutes I was then allowed to be with her on the ward. They had given her a bed! BP and Pulse were taken together with blood glucose and oxygen levels. If anything BP had increased, to 201/95 and I was a beginning to feel the place we were in was more to blame for this than anything else. I wanted us to leave, but I also wanted to be sure that in so doing I was not putting J' in jeopardy.

 After an hour or so a nurse appeared who seemed to be in charge. She had decided to do a 'swallowing test' which apparently gives some indication of Stroke/TIA if the patient cannot swallow sips of water from a spoon. As the nurse was holding the spoon J' gagged a bit, which I found unsurprising and as she had already taken sips of water from a cup earlier, (which apparently she should not have done) I thought it was useless as a test. She also apologised for the delay in seeing anyone (but her) due to an emergency. Ah well, I thought that's triage for you.

By this time it was well after 10 pm and we were some five and a half hours into the event. And here's me thinking the first three hours were critical in stroke diagnosis! We sat there for another hour, with a sense of dread coming over both of us. J' was all for going anyway by 11.30 and said she felt fine in every way and just wanted to escape the clutches of the NHS which by this time we felt were just trying to cover their collective arse's. Just as we were about to do precisely that, a Doctor arrived.

He was quite affable and at least not patronising, recognising that we were not average punters and at least gave us some respect. He went through all the procedure again and also allowed J' to sip and then gulp water from a cup, which she did without problems. He said he thought an MRI would be useful together with an ultra sound of the neck to check for plaque in the arteries. He also said it would not be possible for this to occur now as the facility was not on line. Whether this was because it was the weekend or for some other reason he did not allude to, but after conducting a 'stress test' comprising J' blowing a stiff sheet of paper until it bent, for a whole minute, he decided he would discharge her to my care. Not before however, she was coerced into taking 300 Mg's of soluble aspirin and a promise that she would continue with this regimen until an appointment could be made for the tests by 'phoning them on Monday of the following week.

I discussed with him the likely cause of the event and that it did not seem to fit into the pattern of a stroke or TIA and he at least admitted that he was baffled. But he said until he had seen more test results he would not pass judgement and for safety's sake we should keep up the aspirin protocol and be prepared for other interventions such as Clopidgrel. Not on your life mate, I thought, aspirin, enteric coated at 75 Mg's maybe, but not that awful stuff! But at least we were able to escape, clutching a sheet of paper with advice about TIA's we exited the building as fast as possible, in case they changed their mind! It was gone midnight and we had been in their care for more than seven hours and still no real diagnosis!

We reached the car and I opened the door. I held J' in my arms before she could take her seat, grateful that she was still with me. It was a long moment before I let her go; I never really wanted to let her go ever again but I did and we traversed our way to the entrance and sped off back to the 'hovel' both emotional but relieved to have escaped, relatively unscathed from the NHS and the events of the day.

At home we were both agitated and bemused. We had no idea of what had occurred or its reason. I know Diabetics are more prone to any sort of stroke than the normoglycemic community but all other factors were not present. She maintains good control of her diabetes's with HbA1c of the low 6%. She has excellent low BP to the tune of 120-130/70-80. She does not smoke, takes regular exercise and her clotting factor was low normal. If we ignore the 'drivel' about cholesterol (her non-fasting total is 6.5mmol/l total lipoprotien) but most scientists know that in a women this is viewed as 'protective' rather than indicative of any danger. So what may have caused this? Obviously the Neurologist did not know because he said as much. It would be rare, even if there was some plaque formation that it would cause a bilateral blockage almost simultaneously, but that would have to be determined for certain by MRA/MRI. So we would have to wait for this determination before reaching any conclusion. And of course that would not be until Monday.

We spent a somewhat agitated weekend, with me watching her like a hawk, not letting her drive and giving her a daily dose of enteric coated 75 mg aspirin, just in case there was any possible problem, to be reviewed in the light of further tests. Aspirin is not a drug I like and cannot take myself due to a past ulcer, but J' has a very strong stomach and never even gets heartburn, ever, so I was confident that a few days intake would likely do little harm. Long term use was not something I wanted to contemplate (yet). I did increase the dose of Omega 3 capsules to 2.10 gms (in 3.30gms of capsules) as this is a fairly benign anticoagulant,( from its previous 1.40 gms), although I knew it's effect would take some time to be realised. I also took her BP and pulse regularly and as sure as predicted, it returned to usual levels within 24 hours of the event, in fact by Saturday night it was 118/71 and the pulse was 76!

Monday came and I 'phoned up about the appointment the Neurologist said would be made first thing. They hadn't even heard of us! They promised to call back. They didn't. At 12 noon I rang back once more and was told that it was now too late for that day but 11.30 Tuesday was the time they had arranged. So that was another day wasted, and so much for the urgency of the tests the Doctor had said were essential, and had to be undertaken that day!

After another fitful night, whilst we were preparing for the day, we then had a call from the Hospital. They had a spot available as soon as possible, could we come in straight away? Obviously we agreed, fools that we were. We got there and after another bout of form filling were ushered in to see the duty Neurologist Dr. W. Without an doubt whatsoever he was dick! Uninterested, remote, rarely looking at the patient, he said very little, asking a few questions and making a very short examination. Just the pulse, wrist and carotid and the usual tests for stroke. He conveyed no view when I asked him about the symptoms crossing the mid line just stared at his screen. He did say J' should have an immediate MRI of the brain together with an MRA with contrast dye, of the neck, no doubt to check for any plaque in the Carotid.

He then told his female assistant ( a trainee) to arrange this and we were dismissed. We sat outside awaiting the news and the young woman came and told us she could not arrange it until 1 pm, which was some two hours away! Not enough time to go home and then struggle back across town and find a space again in the immensely expensive car park, which was half a mile from the unit. She then said she would need to install a cannula for the dye infusion, so we would need to come back to the unit for this before we went to the imaging unit for the MRI/MRA.Why they had not already arranged a test  when it was obvious that it was a need, and the entire reason for our visit, escapes me, but obviously our time was of no matter and theirs at a premium, despite the fact that they would be hard pressed to arrange an orgy in a brothel.

So we went into the Hospital and tried to obtain some food and drink. Well there was coffee, of a sort. The food was all 'junk food', all very high in carbohydrates and totally unsuitable for a diabetic, and frankly it was all highly processed rubbish. We took a further walk through the grounds back to the unit and the trainee then came to insert the cannula for the dye infusion. She seemed different now the boss wasn't around and told me she had researched the dye side effects whilst we were away and attempted to assure us both that it was relatively benign. I discussed her training whilst she was at work on the antecubital fossa. She had just completed FY2 and was now a GP trainee and knew a number of my friends in research and emergency medicine. She was also excellent at inserting cannula's, with confidence, gentleness and expertise that produced no pain or bruising. So we trotted off to the MRI facility half a mile away.

I was stunned when I saw it. It was a brand new building, in the grounds and provided on a 'contract' basis by a private provider; more cash for the private sector! Anyway, after a minor altercation with the 'prick', who drives the machine, J' went away to return fifteen minutes later, sans cannula and in no distress from the dye infusion which said she hadn't felt. We had been told we would get a 'phone call later with the results after they had been evaluated by Dr. W. In fact his secretary rang about 5 pm to tell us that everything was normal and that nothing at all had been found! I'm sure the sod's always get their underlings to provide this sort of information just so you can't ask questions, because we both had many, but for lack of anything else we could do, we would have to wait for the letter they would send.

We had a long wait. After four weeks I rang the unit and spoke to said secretary who informed me that we were not getting a letter but one had been dispatched to the GP some weeks ago. Upon further probing I found they had sent this to our GP of five years before and not to the current one, despite the fact I had filled forms in with the correct information; twice! She did say she would ask permission of Dr. W  for us to receive a copy. I was almost choking with anger by then. "You mean that we are not allowed to see what has been determined about my partners event, but you, our GP and anyone with the access password can?". I said I felt it both insulting and patronising that such should be the case and I would complain in the strongest terms if this was not rectified. She promised to do what she could and I left it there. I explained it to J' who responded with a few expletives,somewhat worse than any in this post.

We did get that copy after another week, and it simply said that J' was healthy without any evidence at all of any abnormalities and, curiously, 'the rest of her history is non contributory'. What! The trauma surgery your colleagues botched, the diabetes they missed, the keto-acidosis, the fact she cannot take vigorous exercise, because the hemiarthroplasty starts to hurt after half a mile, and the chances of revision surgery succeeding or her surviving it, recede with every passing year!

It's also interesting that at no time was J' asked to give any informed consent, written or verbal, for any of the investigations, nor was anything ever explained in any detail until I pressed those involved to do so, and was able to demonstrate knowledge and qualification. Even then, they spoke over J' to me, or directly at me. Bunch of patronising misogynist prats. I really shudder when I think what may have occurred had I not been there to fight her corner. And what is my take on the event? I do not really know, although I suspect it may be microscopic particles of debris (plastic/bone/metal) from the hip implant momentarily lodging in the brain. We are at the stage when the joint will be producing quite lot. Active people can wear them out in five years. J's active and that's next June.

This, dear patient reader is the reason why my blogging has been somewhat curtailed of late. These events have had a profound effect on us both, highlighting the fact that our grasp on life is at best tenuous. But that can be said of us all. But, wherever possible we should all keep away from hospitals; they're full of sick people and not all of them are patients.

7 comments:

  1. Ye Gods old friend!

    I am so pleased that you and "J" survived the experience, it seems that little has changed in the eight years or so since mine and "Ms" NHS "system failures" occured.

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  2. I echo Angus's comment in that I am glad "J" and you are okay.

    Your final paragraph is kind of wonderful...particularly the last sentence...

    Anna :o]

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    Replies
    1. Thank you friends both, for your kind comments. It is of great value to both of us. You are both on my bucket list.

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  3. Thank you for the informative, well written article on your awful experience.
    How was the plaque build up in J's carotid artery?
    You should be able to request CD roms of the scan results from the relevant hospital department. I've got the forms to obtain a copy of a CT scan I had of my torso/lungs. There's normally a charge of around £25 payable by cheque..
    There's free/low cost software available online to view the images.

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    Replies
    1. The simple truth Bill is that according to the MRA there was none! There was nothing on the MRI the CT scan, the ECG and nothing indicative of anything on the FBC. The medic's are baffled, as am I but I have not seen the results, only had them reported to me. The NHS in my area charges the full whack of £50 for any set of notes/results that they hold:I have also obtained these before.

      I shall do some more investigation about the possibilities and then obtain the details of the tests to see if any friends can help.

      Thanks for your interest.

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