England v Italy

Two weeks after being confirmed as having suffered a Stroke I “celebrated” my 52^rd birthday. For obvious reasons this was a birthday unlike any I had had before.

If I had not had a Stroke the partner and I would have flown out to the French Alps, on the day after I came out of hospital, to spend a week with the Step-daughter in the resort where she was working. All that went out of the window the moment that it was confirmed that I had had a Stroke (see post: Hospital - Inpatient). Under normal conditions my birthday would have been subsumed into the whole holiday thing but know plans had to be changed.

I have always been a fan of Rugby Union, both as a player and spectator and I have been fortunate (or not so fortunate) enough to have been to Twickenham to watch England play. As a birthday present my partner managed to get two tickets for England’s game against Italy in the 6 Nations at Twickenham on February 14^th, which also happened to be Valentine's Day. This year, for the first time ever, I did nothing for the day. My Stroke gave me an excuse, mainly that I had other things on my mind but also due to me not have left the village on my own since leaving hospital - mainly because I was banned from driving for a month, by law.

In an effort to make the whole trip as easy as possible we travelled down to London on the Friday afternoon, getting a lift with friends from the next village who were doing the same thing. Not having to drive or even be in the front of the car was easier than I thought, especially as there was absolutely no pressure to even take part in any of the conversations. Our friends dropped us on the outskirts of London where we could catch the Underground to where we were staying at the flat of an old work colleague  and business partner of my Partner. The flat is in West London so convenient for getting to Twickenham the next day. Even though we were away from home I still felt the need to take my blood pressure: which I took 5 times that day (at 04:00 − 172/101, at 08:00 − 181/105, at 11:00 − 160/102, at 18:00 − 173/102 and at 22:00 − 170/93). As I was feeling tired after the journey we got a take-a-way and had an early night, well relatively, just after 22:00.

The next day, not needing to be at Twickers until around 13:30 for the 14:00 kick-off, we took it really easy and had a leisurely breakfast of Croque Madame for me and Eggs Benedict for my partner and Coffee for us both in the Cote Brasserie in Turnham Green. We eventually arrived at Twickenham Underground Station at about 13:00 and joined the throng making its way to the home of English Rugby.

After the two weeks that I had had it was good to be out and doing something and getting to watch England inflict yet another heavy defeat on the Italians was something to savour, sorry any Italian readers. What I did find a little frustrating was the feeling I had of not particularly liking the crowd, which is a problem if one is attending a major sporting event. Not that the crowd was boisterous of aggressive, although this being middle class England at play there were more than a few Henrys and Ruperts who had spent a little to much time in the pubs on the route from the station to the ground. It was just that I was still feeling a little fragile. The tickets we had were in the Upper North Stand, Block U22, Row G, so behind and to the left of the posts and up in the gods, which was not a problem because there are isn’t a poor view in the 82,000 seat stadium, but what it did mean was a journey up three tires. Even taking it easily, by the time I reached to top level I was out of breath, which I found worryingly disconcerting. As we queued for a beer (dispensed in a branded plastic container, which I still have and use every day when I take my meds) my partner, not unreasonably pointed out that a lot, if not most people climbing those stairs would be a little out of breath, including her, and that I was almost back to normal which showed that I was not as bad as I thought.

The singing of the National Anthems

As kick-off approached we went to find our seats and watch the build up (see inclosed photo). As we were enjoying the entertainment one of those slightly worse for wear Henrys, seated next to my partner, insisted on talking to us. As often happens when one has imbibed a little more than one should this particular Henry found it difficult to control the level of his voice, an annoying interruption that was to continue throughout the game, which meant that the only way of avoiding the irritation was by concentrating on events the field, something which earned me a rebuke for being anti-social from my partner.

The game itself was the exciting try feast that we have come to expect from games against Italy with England running out 47 − 17 winners, although a late Italian soft try was to have a major influence on weather they won the championship or not.

With the final whistle the happy crowd began to drift away. I have always found it strange just how quickly a stadium can empty. Although my partner wanted to be away I asked if we could sit for a few minutes. I was happy but was tired. Watching England at Twickers was a thing that I had enjoyed a number of times before but this time I felt exhausted. Eventually we descended the steps and joined the remnants of the throng making its way back to the Underground / Overground Station. As we approached the station was obvious that nothing had been done over the years to speed the departure of spectators away, as evidenced by the huge queues. Even though it was only 16:00 I was fading fast so we decided to take the bus back to Chiswick, a more circuitous route but taking into account the huge crowd at the rail station considerately less stressful.

Unlike most days at that time I was only able to take my blood pressure three times (at 08:00 − 165/107, at 18:00 − 174/102 and at 22:00 − 191/99). By 22:00 I Was dead on my feet and was in bed soon afterwards.

As was the norm at that stage after my stroke I was awake at 04:00 and as was also the norm then I started taking my blood pressure and took it religiously throughout the day with five measurements (at 04:30 − 148/94, 08:00 − 163/98, at 14:30 − 163/93, at 19:30 − 177/105 and at 22:00 − 183/99). The gap between 14:30 and 19:00 was where we were watching the Scotland v Wales match in an Irish pub in North London after which we met our friends for the journey home.

My MRI Scan - What Rot!

When I slid into the claustrophobic tube that was the MRI Scanner during my short post stroke stay in hospital (see posts; MRI Scan and Hospital - Inpatient) I assumed that, not that I was thinking about at the time, that the resulting scan would form the basis of both my diagnosis and on going treatment. There was also a subliminal thought that in this day and age the scan would be instantly available to anyone with authority, all you needed access to a computer. How wrong could I have been

As I covered in my posts about my hospital stay, there was a long wait for the medical staff to “see the scan”. It’s never like that in the movies where people and their doctors get to see the scans on iPad type machines within minutes. Bearing in mind that this is a scan of my brain, such as it is, and that I was having difficulty in seeing it it felt as if there was a deliberate attempt to keep it secret. No one outside of the hospital has ever seen it or seems even to have access to it, not my GP nor the Stroke Nurse or anyone else. WHY?

When I asked my GP to see it she said that she did not have access to it and that the only for either of us to see it was to get a copy from the hospital. When I asked how one went about that she told that she did not know but that she would ask her secretary find out and let me know. Two days later a message was left on my home phone, giving a name and number of the person to talk to at the hospital.

Finally getting in contact with the lady in Patient Administration, who I will call SK, at the hospital I requested my MRI Scans only to be told that I would have to fill in the Data Protection form that she would send through. All I could do now was to wait for the postman to do his stuff.

When the form arrived it requested basic information such as my name and address and which particular records I was requesting. It also required a payment of £25.00. I duly filled in the required details and enclosed the cheque before walking across the road to drop the envelope in the village’s post box.

Almost two weeks later a small thin package from the hospital arrived, which I left on the side in the kitchen for a further couple of days. Over this two days I would glance at what was obviously a CD but didn’t touch it. The partner, who had been one of the reasons that I had requested the scan in the first place showed no interest either, which surprised me.

Then on a Sunday afternoon I decided to at least give the CD a look. With a slight feeling of trepidation, which was a bit odd as I had seen the image the CD contained before (more of that in later posts) but I think its never easy to see the inner workings of the body and especially the brain.

As I pushed the CD into the slot on the side of the laptop I had the feeling that I was going to be disappointed. The CD appeared on my desktop and when I opened it there were six files listed:
autorun.bat
autrun.inf
Content.cfs
pfmap.exe
scriptList.txt
start.bat
None of which could I open!

When, on Monday morning, I contacted SK in Patient Administration again to inform her that I was having no joy in opening the CD I was given another number, in It, to call. The young lady (LW) I spoke to was initially concerned, her attitude changed the moment I told her that I had an Apple Mac. At the word Apple she became very dismissive and told me that I should get another computer. When I told her that I had a legal right to have my records provided to me in a format that I could read her response was that it was not going to happen “ … not on a system that hardly anybody in the area uses.” When I pointed out that between 20 and 40% of people use Macs her only word was “exactly!”, and was told to go back to Patient Administration. Which I duly did! But before I did I asked for the name and telephone number of LW’s manager, which she gave me which as it happened was the same as her’s, but she said that it would do no good as she would say the same thing as her. SK in Patient Administration was very surprised and promised to look into the matter. She also agreed that it was a legal duty to get my records to me in a format that that I can read or view.

Later I phoned the Manager (NH) of the LW in IT, who I have to say was completely different to her subordinate. After a short conversation, during which I gave her my contact details, I received assurances that it would be sorted within the next week or so.

Regardless of the outcome, the point is that in this day and age can it acceptable that a national organisation such as the NHS to make a conscious decision that a common format of computer platform is not one that they will support? There are many programmes that allow graphics of all kinds to be viewed on any platform (pdf, tiff to name but two). It is a legal and moral right for everyone to have unrestricted access to their medical records, including all forms of scans. What I did not appreciate was the pompous attitude of LW from IT. Not only was she repudiating my rights, she appeared to have no understanding of what its like to view a part of your body that is dead.

It was hard enough to even load the CD never mind actually seeing what it contained and the disappointment, on a number of levels, of being denied was like a kick in the guts.

The story is not over and I await with bated breath to see how the hospital is going to take to “sort” the issue.

Stroke Nurse - First Visit

On the 5^th Feb 2015 and totally out of the blue a letter arrived from my Local Community Stroke Team.

The letter informed me that they had received a referral from the hospital that I had attended after my Stroke. Something that I was not told would happen.

The sender of the letter informed me that Local Community Stroke Team's role “ … is to offer support, explanation (sic) about the stroke, ensure you understand your risk factors and medications and monitor you (sic) blood pressure etc.” And then asked “I would be grateful if you could contact the number above to let me know if you would like my input and support: I will then try to arrange a visit to your home.”

The writer went on “I hope this letter finds you well and I look forward to hearing from you.” An interesting comment considering that I was a little over three weeks post Stroke.

The letter was signed

“Kind regards

RP

Community Stroke Associate Practitioner”

What kind of request was that?

Of course I would welcome her input.

The line about finding me well was a little strange as she knew that I had had a stroke, so how was it going to do that?

The most important thing for me was the fact that such an organisation existed came as a complete surprise: a pleasant one, but a surprise nonetheless. In fact I had every reason to believe that I would not be seeing anyone from any form of community based health organisation as on my discharge notes it clearly said that there was no need for transfer to Community Rehabilitation as well as there being no indication for a Social Service / Community Care Plan to be put in place (See: Information. What Information?, 02/03/2016).

Needless to say that I phoned the number at the top of the page very rapidly, only to have to leave a message. Having left my telephone number I had nothing left to do but wait, which lasted for two days. When RP did phone back we arranged for her to come to the house on Friday 13^th Feb at 09:00. It’s a good job that I’m not superstitious.

As the morning of the 13^th arrived and not really knowing what to expect my partner and I awaited RP’s arrival. The partner was working in the office and called down to say that a car had passed the house twice so she thought the Stroke Nurse had arrived. A fact confirmed by Bruce who barked to let us know that there was someone coming to the house. I opened the door and Bruce ran out, tail wagging, to investigate the new arrival. A pleasant looking lady in a blue nurse’s uniform and carrying a black leather bag reached down to pat Bruce and then walked up to introduce herself.

Having offered the new arrival a drink, which she declined, we settled down at the kitchen table. The first thing she asked was “How was I?” With my dissatisfaction with the treatment that I received from the medical profession during the last few hours of my time in hospital still fresh in my mind I let the frustration come following out. There was also some truth in the fact that I believed, at the back of my mind, that I had somehow brought this stroke on my self by not remaining on my meds in 2010 (See: Horner’s Syndrome, 30/03/2016) and in some way knew that I was going to get a wigging from yet another member of the medical profession, so probably tried to get my defence in first. So much so that RP had to ask me to back off, and quite rightly so. Once I had calmed down I apologised and explained where the frustration / anger had come from. As she was always going to RP explained that she was not from the acute sector and what was in the past was just that. With no option but to accept the obvious truth of her comments I suggested that we start again.

RP opened her bag and withdrew an old fashioned Blood Pressure reader and stethoscope which she placed on the table. She then dug out an A4 ring binder which she handed to me. The image on the cover was of a blue, computer generated, slightly feminine human showing the right shoulder, neck and face from the ear forwards. The title of the folder was PATIENT INFORMATION PACK. The finale thing she took from her bag was a blue CL sized folded form entitled STROKE RISK FACTOR MANAGEMENT PLAN onto which she had already written my name, address, date of stroke, type of stroke (L Pontine Infarction) and her contact details. L Pontine Infarction is the medical way of saying that I had had an obstruction to the left side of my brain which resulted in local death of the tissue. RP then took my Blood Pressure which measured 160 / 102.

We then began to talk. The first thing RP asked was what had happened, so I went through the story again (Attack, 22/11/2015) , including my time in hospital (See: Hospital - Admission, 25/11/2015.; Hospital - Inpatient, 03/12/2015; Hospital - Discharge, 07/12/2015).

At this point my partner joined us. After introductions RP went on to tell us the good news: that having had a stroke it was very unlikely that I would have another. Of course the figures supported that assertion but it was not easy to believe when you have just gone through one.

The finale subject that RP talked about on this first visit was the whole issue of Risk Factors. I should definitely stop smoking: not a problem as I have never smoked, unless you count the odd cigar after a damn good meal and at New Year. There was the usual advice to reduce the alcohol intake, lose weight, eat healthily and to reduce stress. There was a difference of opinion between my partner and I as to the degree which each of the Risk Factors impacted on me. This was a discussion that RP quite rightly refused to get involved in, but only ticked High Blood Pressure and High Cholesterol in the “Your risk factors have been identified as.” Section of the Management Plan.

With that we conformed the next visit for the morning of 19/03/15 and RP left us.