Thursday 21st April 2016
STILL MUCH GOING ON UNSUCCESSFULLY
The Berkhamsted Gazette April 20th advises that a patient representative on the Herts Valley Clinical Commissioning Group described its management of a retirement in Tring, "as a case of too many cooks and the left hand does not know what the right hand is doing", threatening the closure of a surgery serving 2,542 patients. Apparently no one had perceived that a retiring doctor would first retire at retirement age let alone that he needed replacing. This is part of the geographical area administered by no fewer than four Conservative MPs, making it quite clear that the Conservative party has not a clue, in practical terms, about NHS management. No wonder Hunt has got himself in a mess with junior doctors, causing further chaos for all. Out of the top of my head I think all councils in the same area are Conservative too which must undoubtedly have something to do with the fact that the West Herts management group are 305th out of 331 health authorities across the country! My own GP practice, which is the largest of four covering Berkhamsted and coping with 9,000 patients has had to close its books, yet had a 93.6% satisfaction rating.
The same paper three weeks previously headlined its front page with "'No Guarantees'". A Berkhamsted Community centre had been closed in October 2015 as a "temporary measure". It is still closed without a re-opening date. All staff were forcibly re-located across the county feeling they had been stabbed in the back and lied to.
New initiative from the NHS I assume. My area of Hertfordshire apparently has only two A&E facilities: Watford some 15 miles away and Stevenage about twice as far. There had been one six miles away at Hemel Hempstead which, on receiving the equipment for a new operating theatre promptly had the new equipment mothballed, according to a regular patient volunteer driver.
THURSDAY 24th MARCH 2016
MUCH GOING ON UNSUCCESSFULLY
It s quite clear that the NHS is in a very serious situation and it is essential something is done about it before it goes too deeply wrong and becomes unrecoverable without a complete re-start.
I start with the Berkhamsted Gazette March 16. Front page a field (bank in a public park) of daffodils destroyed just before Mother's Day. Vandalism; or a me me me grab for mother's posies; or a statement of a seriously impoverished society through Conservative government? Page 2 highlights three break-ins to charity interests with wilful damage and thefts of money. All run by volunteers.
The headline of concern here is "West Herts hospitals (which runs Hemel Hempstead, Watford and St Albans hospitals was ranked 205th out of 231 trusts across the country as being the least open and transparent trusts as well as being in the worst available grade of "Poor Reporting Culture" . I am not surprised. I have delayed reporting earlier here as I wished to establish outcomes before reporting on progress on my personal experiences.
A segment of my own family moved to Amersham to come under Bucks County NHS services thirty years ago and the reason unfortunately remains. Hertfordshire still does not have a clue how to run an NHS trust. By contrast Hertfordshire Community NHS Trust (HCT) was ranked 48th and given the second best available rating of "Good".HCT director of Quality and Governance said "openness and transparency is something we strive for throughout our trust". HCT runs services such as care in people's homes, community settings and community hospitals.
MONDAY 23rd JUNE 2014
MORE SHARING EXPERIENCES OF THE HOSPICE MOVEMENT
Here is another sharing of extremely serious cancer experiences and the excellent support of the hospice movement.
From The Weekly Comment
MONDAY 30th JUNE 2014 [mid pm post]
A countering experience from the Berkhamsted Gazette. Still at an early enquiry stage so no cause in my view to get over-excited.
WEDNESDAY2nd JULY 2014 [latepm post]
CONTRASTS WITHOUT CONTRADICTIONS
I have been troubled for the last fortnight to three weeks with an eyelash or lashes in one eye, the original problem deriving from damage caused by Shingles in that eye. Initial categorization of some sockets seemed to sort it for a time but now I am stuck in a periodic check from one ophthalmologist lining me up for a long line of waiting minor surgery (understandable), occasionally pulling eyelashes out. As I said to him last time, I felt bad about having a man of his calibre just looks at it and take out the odd eyelash while waiting but it is a very minor operation and if there are higher priorities, then so be it.
Five weeks ago the optician had removed a couple of eyelashes but noted there was a small one that was going to be a nuisance but he could not quite grab it then. I had assumed the ophthalmologist had removed that one and the current problem had grown since, for which reason I had been suffering irritably for them to grow long enough for the optician to be able to pull them out. This morning I really felt I should grab the moment. Incredibly the receptionist's response was a, "Would 11:15 do?" "Today! This morning! Oh yes please!"
Waitrose car park was already reasonably full but I parked easily. Collected a CD recording off a 36hr tape I'd left Berkhamsted Imaging, arrived in ample time. "I can see the problem. Its two eyelashes growing horizontally in opposite directions getting tangled under the lid. Four finally came out and I could feel all was indeed well again.
I was also able to get a line on what was actually happening. My Watford sequence stemmed from initial hospital operation need from which there was continual follow up until they could perhaps fit me in to operate again. The other ophthalmologist was optician orientated due to them perceiving another problem (complex, I won't waste time) and therefore the split, both under the NHS was: hospital and related—hospital; incidental optics requiring senior level monitoring but not yet requiring an operation, optician's admin procedures and yes both lines were aware of one another. So that got that sorted out.
An interesting point to bear in mind when we hear such much good and bad about the NHS. When one gets involved in diverse aspects as I have been doing over the previous four or five years it really is an extraordinary institution and I am merely a minor case incidental, even though I have had two exploratory lung operations related to my problems!
In my book the NHS is a pretty damned fine institution!
SATURDAY 21st JUNE 2014
SEEMINGLY BACK TO NORMAL
Back to normal. Extraordinary. No rationale but the irrationality of Sjögren’s for the moment, so get on and enjoy. Ah well. Others have more travails than I. Apart from a slight tiredness I can't recall when I last realised I was feeling perfectly normal.
FRIDAY 20th June 2014
Extracted from my WeeklyCommentary
Simply, having Sjögren’s means anything untoward may not be what it seems and requires detailed analysis. During the course of Monday I found myself implanted on the lavatory, emitting foul smelling liquid and throwing up in the bath, as in my rush I had forgotten to take a bowl in with me. In the space of twenty minutes i found all energy falling away from me as if being sucked out by a Dyson. We used to say Hoover, until they decided to evaporate the company, by giving everybody cheaper foreign holidays than their machines actually cost them. I never quite understood the economics but then many economists don't seem to understand the economy either. I digress.
Suddenly I did not have the energy to sit up straight and would have simply lain on the floor if not galvanised by the realisation it would be I who would have to clear it all up. A good moment to think of all the most odious jobs paid people have to do in hospital scenarios of which most of us ensure we are completely oblivious. A good factor that needs to be seriously dwelt upon when considering what so many do in hospitals, unnoticed and unclaimed. In thinking to clean up my own mess it is quite another to clean up a complete stranger's, particularly if they are so unaware as to not notice, let alone show signs of appreciation. Something mothers do instantly without thought and too many "modern" fathers also choose to ignore. I'm a bachelor and hope I would have been a proper partner had I married but frankly, I'm not so sure.
I was now at the crawling stage on hands and knees between bed and toilet or using the bedside bowl to save the crawling. During Tuesday I decided I should ring the hospital to cancel my Wednesday's appointment but decided that was too short notice for someone to be advised to take advantage of my condition and as the day wore on I realised that I might make it after all. By Wednesday morning I was aware I was gaining sufficient control and state of mental alertness as to be able to undertake an hour's drive safely and without dire incident.
My fifteen minute session with the thoracic consultant neatly sums up my interaction and current views on the NHS. "How are you?" "Momentarily thrown and feeling somewhat delicate but let me answer you first in general update terms, to make sure you have the whole picture and then Ill deal with my immediate problem. Pretty hunky-dory generally, everything seems positive, so let me quickly run over my other sessions."
My attitude is that subject to any impeding disabilities it is the patient's responsibility to be in charge of their own care and to keep appropriate notes neatly organised to cover contingencies.
"Oncologist: tests more or less as last time, 'see you in six months'." Rheumatologist: retired, new one, all at sea trying to get to grips, especially as he has come in during a major procedural change and one of the nurses thought he would still be there at 9:00pm in the evening. Very pleasant chap, I'm sure we will get on."
"Now I notice he thinks your cancer is due to cystic fibrosis. I thought we had agreed it was due to the inflammation caused by Sjögren’s, I'll adjust his notes." Good, interaction was clearly taking place. "Now we don't seem to have done a lung capacity test for awhile." "Yes we have, about four to five weeks ago." "Ah, I thought I had booked one in but I don't seem to have received the report." "Come to that, I haven't received a copy either.Fortunately the operative this time was willing to chat me through it so I know the results were more or less as previously if not slightly improved." "Oh, that's helpful, good, nice isn't she, she's Portuguese?" "I had realised she was foreign but had not assessed her nationality. She was very young and obviously unfamiliar with things as she had a technical problem.' "Oh yes, that does happen, there is often discourse between us and our lab people, sometimes even with the manufacturers, its the complexity of the software. It is often us telling them things from our experience rather than necessarily us asking them but sometimes our own technical staff get hung up on something." "That's what happened this time, your lab people were consulted on the phone and then decided to advise the department to contact the manufacturers direct. I thought we were going to lose the after-noon but they got it going again within half-an-hour."
Then, of course, there is the dietician through my GP. His blood tests indicated potential Type 2 diabetes. She recommended minor adjustments to my diet, wasn't in a flap about it, wanted me to lose a kilogram in six months and technically could describe me as diabetic. I said that if it wasn't essential, "no" as I was about to renew my car insurance and I didn't want the hassle with DVLA sooner than necessary. We then pushed the date back another six months and the other week a year on from the first warning result apparently the blood balance is slightly improved. She doesn't want to see me for a year."
"The dentist couldn't repair a shattered tooth and we decided to leave the stub as it was. Fortunately the nerve had already gone and the rest of my teeth are not yet greatly disintegrating [another fad of Sjögren’s]. The ophthalmologist confirmed a vestige potential of glaucoma but high blood pressure behind the eye is responding to drops and cataract formation remains slow. That puts you in the whole picture"
"Now, what's your immediate problem?" I listed what I have previously outlined here and concluded: "Speaking subjectively, all I think happened is that I allowed myself to catch a stomach chill. I've been aware for some time that my body temperature control is at least slow to respond to temperature changes and with travelling and changes in the weather over the last few days, when I did strip off, as I used to do as a younger man not wearing a vest, I allowed myself to catch a chill."
I recall, many years back, seeing an elderly man basking in the summer sun on his lawn while still wearing a winter weight cardigan, while I was in summer thin cotton shirt, shorts and bare feet in sandals. I commented on it in one of my "Suburbia" poems in my bookGone Fishing! [not yet available electronically]. It seems I've reached that age!
"YES! It is absolutely crucial you do not let yourself get run down. Don't be worried about possible side effects from the steroids causing you glaucoma, that's a separate issue.The amount you are having is only the amount your body would normally provide were you functioning properly [again a clear example of interaction between the professionals] and in a hospital situation we would have immediately doubled the dose for the period of your illness. I'll write a note to your GP." "I had appreciated, when all energy simply evaporated from me in just twenty minutes, that the extra dose you had prescribed had been having a beneficial effect. The last six to eight weeks when i have been fatigued, it is really extreme tiredness, in relation to when I had previously felt fatigued."
"All in all I don't think we need meet again for nine or twelve months, let's say nine to be on the safe side, Cheers!"
MONDAY 10th March 2014
A passing moment. My current situation is diverse to say the least but gives me a wide-ranging experience of diverse interactions.
As a result of my optician's connections I found myself dealing with a private arm of the health sector where administration is overly business efficient or appallingly inefficient: I am unclear which. The admin appears to be in the Bucks Health authority but only deals with the Herts health authority. Regardless, I ended up at the wrong end of St Albans for public transport—but with time allowed it is not an unpleasant walk through the city outskirts, along an old train line and I need to maintain exercise. Otherwise it is taxi if the weather is inclement.
The line seems a classic example of failure of forward looking (Beeching again) for i am personally convinced that a rail (nowadays turned into a tram) line from Hemel Hempstead (Euston line) through St Albans (St Pancras line) to Hertford where there are two stations, one connecting with London via King's Cross, the other connecting with Colchester. All lines north across these three cities/towns would have covered: Cambridge, Peterborough, King's Lynn, Norwich, Birmingham.
Just an example of how too much is seen in the context of a specific moment of time, not in the context that time is in a continual state of change. Mammon is making the same mistake that religion made: believing in fixed parameters rather than universal flexibility. The same reason the EU is in a mess and Russia panicking: neither can cope with the reality of how things are, too immersed in how they would like things to be.
So with the NHS: we all need to see our individual situations in the context of the overall reality. That reality is a continual state of change. Multiply that by the number of citizens and immediately one can understand the vastness of management. In particular, why I have been supportive of the NHS desire to use the gathered statistics, for financial gain towards medical research and understanding. The database gathered is unique.
My updated circumstance means I need regular liaison with: GP, for general keeping tabs and medicine renewals; GP's staff for diabetes checks; recently had a hearing test; through GP, liaisons with three lung consultants (two of whom performed investigative surgery at Harefield) to try and analyse the nature and type of the growths in my lungs, confirming Malt lymphomas and inoperable AND nothing to do with my cigar smoking in my twenties; oncology consultant; rheumatics consultant. Through optician following progress of events, three ophthalmologists; now being more deeply investigated for cataracts and glaucoma.
I am simply a "run of the mill sort of guy". During these procedures I have had eyelash follicles cauterised to try and stop eyelashes growing into the eye, due to damage caused by shingles, brought about through stress, via a near nervous breakdown; all due to being a carer for around two years, while still trying to hold a job (fortunately self-employed so variably flexible). Self-employment was brought about through redundancy. The whole saga brought about (very generally speaking) through acquiring Sjögren’s Syndrome—an autoimmune condition where anything can go haywire any time.
During this period I have lost friends of friends through cancer, or heard about their being so diagnosed. I have a friend, currently undertaking the worst of cancer chemotherapy scenarios, blessed with his wife being available and support of his stepdaughter and privately insured, so having a hospital room in which his wife can "live" with him during chemotherapy sessions. Two relatives approaching their centenaries, one of them a former post master the other still listed in the Annual Directory of British Scientists, both frail, both blind but both still fully compos mentis.
In my book this constitutes the 'expected norm' of living today. Many are in much worse scenarios, I see them just lying their on their beds, all other functioning seeming to have departed, although in the nursing home inhabited by one of them, the worst dementia cases are in another building across the road.
It is from this diversity that, despite simply being a printer, I have spent thirty years rubbing shoulders with doctors, research scientists and veterinarians giving me a reasonably informed picture of the whole. This is why I maintain the web site to still be involved in the world around me and presume to comment.
Oh, the original cause for this latest outburst? Having been requested to phone they apparently did not have the next month ahead (usually (NHS) they are looking a year ahead automatically). The young man handling me lost the connection so I had to ring again, twice; He then did not write a confirmation nor emailed me, he mobile phoned a written message—I only use my mobile phone for emergencies, such as falling over and breaking a leg when walking over Ashridge! However, I finally got there and it all took place. Privately, they are not always all there either! It's just humanity.
MONDAY 18thNovember 2013
An act of mental contrition. While I do not in any way doubt the sincerity of intent of those negative views that are expressed elsewhere, the purpose of this page has always been to publish the positive experiences I have received but I have been emanating negative vibes ever since I received a letter from the central source of the national bowel cancer initiative. It read like the output of a junior lab technician cavalierly allocating me to Hemel Hempstead hospital for a colonoscopy, without any reference to consultation with my GP. The most irritating thing about it was that it was at pains to reassure all the things this might NOT imply, most of which were in fact precisely what could well be implied in the light of my medical history! It emphasised this may well not be an indicator of cancer: cancer is precisely what I already have! The last thing I wanted was some other specialist getting in on my relationships with the four consultants already looking after my welfare. Needless to say this was all upsetting and worrying and I arrived at the appointment in a somewhat disgruntled mood. Fortunately, I simply gathered my essential history and started with a simple enquiry as to why the hell we were meeting without first a full discussion with my GP who had the collective facts.
Then things started straightening out. As I had assumed, it was a lab technician's letter not a doctor's. We were responding to an acknowledged over-sensitive test due to the cost-effectiveness of mass automatic processing. From next year they are introducing a more expensive test less likely to throw up false positives obviously trying to increase cost-effectiveness while maintaining regular and assured mass cover. Once more, the need to cover legal liabilities was what was causing so much of the paraphernalia.
I may change my mind afterwards but at the moment all seems simple and straight forward if not particularly pleasant. Just recall the early ads when this campaign was in the making: "Would you really prefer to die from embarrassment?" Not currently being shown but not much increase in numbers taking it up, even when it is showing. The greatest response they have is by word of mouth!
Hemel is a somewhat peculiar hospital, half of its modern buildings bordered up and staff relegated to just one or two (the most modern) buildings. Hardly inspiring but the staff rise above their surroundings magnificently. In my case that was primarily due to Linda the Screening Specialist Practitioner and the staff interacting with her.
MONDAY 26th August 2013
. So, where am I at, following a week’s good break, despite periodic interrupts due to exhaustion? Continuing, permanently disadvantaged by tiredness, for which there are many possible explanations but the presumption being Sjögren’s Syndrome.
Amazingly, I do not perceive myself as being actually ill, just frustrated, although suffering periodic arthritic twinges; the odd gout bout requiring minor painkillers; occasional reflux and stomach problems and current main irritation is extremely dry eyes and the occasional outbreak of intense shivering as if I had malaria.
Talking with others, I perceive I am “getting it easy”. Other than to acknowledge total destruction of any semblance of social interactivity, however persistent I am in trying to fathom when I am likely to be at my best operationally, I perceive I am lucky and this is my state of affairs for some time to come. Therefore, no further reports for the moment.
SUNDAY 11th August 2013
It is with regret that I have had to express a moan, as so far, with so much interaction I can only say that I have been treated very well.
Stoke Mandeville in Aylesbury is an absolute disaster with car parking. Irritatingly they know damned well it is a disaster as they have installed a proper hospital car parking facility at High Wycombe: they both come under Bucks Health Area. There, they show the elementary common sense, that one receives one's ticket on arrival and then pay on one's way out, so one pays for the time one is there.
On Friday I drove to SM's A&E as advised by Ophthalmological admin. I quote my Sjögren’s Syndrome page.
"Operating with a private optician, they faxed to Stoke Mandeville Ophthalmology department my condition. Regretfully, I did not have my mobile number and although there is an answer phone I wanted to catch the first opportunity of getting things happening, so I sat by the 'phone until Friday noon.
I suggested to my local Boots Optician they faxed another letter, giving them my mobile number as the excuse for re-faxing, without it appearing to be a chaser. Let's be fair, it is holiday time and my problem was a nuisance not a crisis. Instead, he rang and Ophthalmology said, 'Go to A&E and we'll follow up later if necessary.' Nearly five hours in A&E was a disaster.
Knowing the car parking disaster that is SM, I grabbed the first space I came to and could not see the ticket machine. They are all small units without any large sign standing above the crowded horizon, let alone any sign stating in which direction to proceed. I walked until I found onewhich had a notice plastered on it saying it did not work. What if I had been disabled walking? I walked twice as far as I should have walked but found a machine not giving change and cackhandedly determined to give me units of time as it wanted, not allowing me the flexibility of how long I thought I might need.
Having found the pedestrian entrance to A&E, for which I had not seen any directional signs until i arrived there, I saw two people who did the same tests and then finally presumably a consultant. He wanted to see my eye through a flashing light and having us both sat down at the machine he found the bulb had blown. He could not find a spare nor any assistant to provide and insert one.
After further delay he said he had rung Ophthalmology who had agreed to slot me in between existing appointments. Further undisclosed delay when I advised reception I should go and add to my parking meter ticket. Not having missed anything on my return I finally got to see another consultant, who failed to find the object in my eye which my optician had said was so embedded he needed to apply a local anaesthetic which he did not have, hence my arrival at SM.
Having had four people plus him adding drops, plus the drops I had added twice because I suffer dry eyes due to Sjögren’s Syndrome and need to keep my eyes wet and I had been there for nearly five hours, it is perhaps understandable if by then the object had floated away. I wasn't convinced but had to admit the eye was now comfortable.
From this experience I hazard a guess that much of the NHS's problems and complaints are due to the also-ran 'rude meckanicals' (to use a Shakespearian expression) who are just not pulling their weight and wilfully undermining the efforts of the clinicians.
1. Admin should have rung me back within 24hrs to discuss when they could fit me in and how were things actually with me.
2. Assuming the first consultant understood his machine, the equipment should have had a notice on saying it was faulty, so he could have earlier planned an alternative strategy, not sit down at it and then discover it did not work.
3. A properly managed maintenance programme would have ensured all equipment was working before the shift started. It is after all A&E.
4. The last consultant should have taken the time to explore under the upper lid which is where I think the object disappeared, not actually floating out of the eye, hence my present situation, somewhat worse than it was on Friday morning before A&E got involved. However, he was slotting me in when already over-loaded, late on a Friday night and satisfied that the object wasn't where he was told it was and there were scratch signs indicating it had been there, his inability to lift the upper lid due, apparently to too few eyelashes may not seem as careless as it might. However, I thought they had special clips to do that sort of thing but those might need local anaesthetic to apply and so it is understandable if he felt such palaver was too much, in the light of the prevailing evidence.
TUESDAY 16th July 2013
I am astounded to find Buckinghamshire Health Trust named as one of the eleven hospitals under special care and High Wycombe specifically highlighted.
As usual, Channel 4 gave an excellent interrogation and Labour’s representation null and void, perhaps Labour knows C4 is just too damned good for them. The shambles in the Commons was disgraceful.
The NHS is the collective whole of all of us. We haven’t time to waste on party political emotions. Deal with the issue, which is incompetent management.
While complaints seem to centre around more/extremely ill patients and my interactions have been very much at the vaguely ill stage of health, it is understandable there will be a contrast in experiences but it is not unreasonable to expect the patient to be reasonably compos mentis about his own health. Knowing he is not supposed to take solids what on earth was the patient doing accepting solid food?
In my early stage of chemotherapy the nurses (and they did change, depending upon who was available at the time) checked my medication with me, checking the labels and dosages as standard procedure and referring back to the files as a double check.
Any one hospital is a vast organisation, as much as you see is also behind it again, unseen and you cannot expect everything to go right every time but I do feel obliged to make it clear that my experiences have, on the whole, been superb throughout a life-time: hospitals and
Wednesday 29th May 2013—An Introduction
This refurbishment of a major site, originally developed for business purposes over several years and then suspended, due to problems with family ill-health and then my own, is because I refuse to be kowtowed by the speed of digital developments and the increasing complexity of relevant programs.
Re-jigging, rather than starting entirely fresh is because of a life-time's magpie trait, instilled in me through being a war-time baby, in a family obsessed with saving pieces of string and even Christmas wrapping paper. One had to undo one's parcels carefully to ensure the wrapping paper was in a good enough condition to be used the following year!
As one who has spent his life endeavouring to deliver the best he can in his specialities, I fully support those who likewise demand the same standards of and for themselves, while also expecting them to render praise where praise is due. Regarding the NHS, I have to confess that the services I have received to date contradict most of the complaints presented in the national press. It seems, therefore only proper to put forward that other view, noting however that the NHS is a vast enterprise and there will always be counter-experiences and contradictions.
In my geographical area there has been much controversy over the use of hospitals at Hemel Hempstead and Watford, especially in relation to A&E where it was deemed logical for ambulances to travel a dozen miles further on to Watford, where parking for visitors is atrocious, rather than use Hemel Hempstead, which has extensive multi-storey town car parks close by. Stoke Mandeville in Buckinghamshire is equally poorly provided with car parking space, whereas High Wycombe has a multi-storey town car park close by. On top of which High Wycombe's hospital car park charges only the time you use, whereas Watford expects you to pay a minimum of three or four hours regardless. More over, that car park is on a steep hill, providing a great challenge to those less happy with hill starts, let alone close car manoeuvring on a steep slope. Even in an automatic it can be challenging during inclement weather.
These last may seem niggardly points. The main purpose is the welfare of the people who have to use the services, especially if urgent (although that also includes outpatient visitors who may well be in some state of immobility). Only secondary is the convenience of visitors but too often there does appear to be an overall lack of cohesion. However, it is patient facilities that are paramount. Since I have been diversely involved with several establishments over a long period of time and seem to be stuck with using them for the rest of my life, I believe I have a reasonable cross-experience of services on which to make valid comments, in the face of wide-spread criticism. Especially since I can generally say that I have been very satisfied with the services I have received to date.
FRIDAY 31ST MAY 2013
STARTING MY PARTICULAR NHS SAGA
Apart from one childhood experience when they thought I might have appendicitis and ignoring continual interactions with my GP which, although the doctors have changed, has been my lifeline for 70 years but for no greater need than "You've got 'flu go back to bed," sort of thing, it was not until my forties that I started interacting in a more serious manner. That was BPH (Benign Prostatic Hyperplasia). Despite the fact that most complaints are benign and easily managed one inevitably panics and it is a good time to remember one should check the state of one's affairs and the relevance of one's will.
The biopsy was carried out at Watford. In those days the biopsy was a full blown procedure with gas. The consultant told me "all clear but I will probably need to see you in ten years time". Incredibly, two months short of that time I woke up one morning unable to pass water, despite running the taps and lying in the bath in warm water etc. My GP's reception put me straight through to my doctor who, after initial discussion said, "get yourself over to A&E (at Hemel) and I'll warn them to expect you". "I don't think I'm fit to drive." "Use a taxi!" "Sorry, lack of lateral thinking!" Catheterisation was the immediate answer and Hemel did the biopsy. In arranging that in A&E they were obviously unsure as to how much I knew. I updated them on my previous experience and found the chap I saw previously was still there! He then did the procedure, almost to the day ten years on from when he had told me, "I shall probably need to see you in ten years time".
Times had indeed changed. It was simple, local anaesthesia, a simple collection to be taken to a friend over night and back in to double check and take out the catheter, needed for post-op draining. "You can watch what we are doing on the TV screen." "No thanks, I used to faint in biology. I'd rather be put out completely". This was all pre-op arranged but they didn't give me enough overall anaesthetic as I came to in the middle of proceedings. I remember raising my head and having a distorted view. The chap who should have been level with my navel seemed at the end of the bed which had been extended by some twenty feet. "Hello chaps, how's it going?" I asked. The chap behind my head obviously gave me an extra squirt and as I passed out again I heard the chap supposedly next to me comment in a somewhat exasperated tone, "I thought you said you'd put the bugger out". "Sorry about that", said the voice behind my head. As I sank into oblivion I thought, "Oh God, I've got the 'Carry on Doctor' team!"
SUNDAY 9th JUNE 2013
EXPERIENCING SHINGLES IN THE EYE and a Report of Someone Else's Experience
I move on a few years, through which time a diverse range of events caused me to suffer shingles in one eye. Here again, my GP was superb. In so far as medicine is concerned I am as much an ignoramus as the next man in the street but, having worked as a printer for The Wellcome Foundation before it was bought out by GlaxoSmithKline, I have spent some thirty years rubbing shoulders with doctors, pharmacists and research scientists. While not reading everything, one does acquire odd pockets of information which more than occasionally flag up their relevance.
Looking in the mirror at my itchy eye I thought to myself, "damn, got a sty coming on top of everything else." Looking again a day later, I thought, "funny looking sty." The third day, which time-wise was crucial (and was a Monday) I decided I had shingles in the eye. Rang my GP's Reception and told them what I thought. They immediately said, "Get yourself down here immediately, we'll slot you in."
On arrival I told my GP, "I think I've got an herpetic outbreak." "Really!" He said with a great deal of interest. Seeing the way his mind was going, he clearly thought I had a far more exciting social life than in fact I did. "No!" I said, "It's ocular." "Oh" he said, sounding disappointed and no longer so interested. "I suppose I'd better look at it. You're quite right." Having discerned it was the third day he despatched me with a scrip saying, "Get on to those immediately and when the pain starts [not if but when], tell Reception and we'll get you onto pain killers as quickly as possible.
Three weeks later the pain hit me. Fortunately, the pain commenced at the start of a morning, so I was able to obtain some painkillers fairly quickly. In the mean time I knew such agony I could have pulled my eye out, if it were not for the fact I knew it was the socket causing the pain, not the eye.
Knowing this could continue for some time, I was immediately allocated to a pain management specialist and spent the next year seeing him periodically. His relaxation disc is still used for aiding relaxation when I hit (which has not been the case for some time) a period of insomnia, an inherent trait of mine over many years.
A CONTRASTING EXPERIENCE
Recently, an uncle of mine suffered shingles in the eye. At 97, his experience with his Norfolk Health Authority was appalling. A locum was standing in who was unable to state categorically whether or not it was shingles. "Come back in a few days if it doesn't get better." No warning that my uncle should behave on the assumption that it was shingles and to take appropriate precautions not to cross-infect himself or anyone else.
When I had seen my GP, he said, "For heaven's sake remember you are lethal to pregnant women and very young children." I tried to shop 'out of hours' yet I always seemed to choose a time when every pregnant woman, or mother of young children was in the supermarket. I wanted to shout "Unclean Unclean, stay away."
In my uncle's case he clearly cross-infected his other eye and seems to have gone through a prolonged period of great discomfort but then, with age, matters do take longer to resolve. In addition, he was listed to receive medical aftercare. The first person to come had to be shown by my aunt how to squeeze the tube to apply the ointment to the eye! On another occasion, the auxiliary medic asked to borrow some Marigold gloves as she had run out of her supply! For heaven's sake. They are supposed to be using sterilised surgical gloves!
NEAR NERVOUS BREAKDOWN
While dealing with my shingles, probably brought on by business stress, I encountered family problems. In themselves nothing more than we all have to cope with as we go through life but in my case more or less hitting me at the same time. My sister's death, after a valiant ten year fight against cancer; my mother's death three month's later; supporting my father as well as coping with my own grief to then encounter that he was terminally ill. I suspect it was this set of events one after the other that brought me to the well's edge of a nervous breakdown. Mercifully, I realised what was probably happening and booked a telephone appointment for the next morning. I told him I had self-indiagnosed and felt I needed Valium. Quite rightly he refused to prescribe over the telephone but told me to get myself to him within the next hour and he would warn Reception I was coming.
I had hardly sat down when he told me to go. "What do you mean that's enough, I've only just got here!" He looked at me straight in the eye. "Peter, you have been here for seven and a half minutes. I have been timing you. In that time you have done nothing but talk at me incessantly and incoherently across a wide range of subjects. You are multi-threaded overstressed. Stop everything you are doing immediately and either go back to bed, or take a country walk. Either way, go via the chemist and collect some Valium, then come and see me in three weeks.
Having stood on the edge and looked down, that is a drop I never intend to make. Getting close to the edge is too close. For those who take the plunge I can only offer my deepest sympathy and for those close to them. Nothing is so important in this world that time simply "to be" cannot be found. It is the crucial first priority of every day, throughout the day.
"What is this life if full of care
"We have no time to stand and stare."
W H Davies, Leisure
SLE, SJÖGREN’S and its Complications
Judging from my introduction to diabetes, there is a dawning realisation we should be moving to pro-active preventative medicine and there should be an annual GP visit slotted in for every patient from year 1, by default. Apparently diabetes could have been causing active deterioration of the pancreas for 7 to 12 years before diabetes is diagnosed. Being a progressive, degenerative condition, for which there is no cure, all that can be done is to slow it up, preferably only through diet rather than the supplemental need of medication.
As part of my plan to keep active, I took over responsibility for a German Shepherd dog. You can keep a German Shepherd in a first floor apartment if you walk him to or three miles two or three times a day. As this conveniently ties in with his basic needs after meal times, I thought this would keep me fit and his years would naturally end around the time I was probably no longer up to my commitment.
Ironically, it was having the dog that made me realise there was something wrong with my health. Fortunately someone else just as easily as I and his previous owner, fell in love with him and took him on.
This led to a prolonged saga of tests with varying results indicating nonjustification for proceeding further. Then we got to the point where my GP wanted extended tests and the hospital declined, not thinking them necessary. I do not know the details but something happened between hospital and my GP because the hospital suddenly re-scheduled in my cancelled appointment. I suspect my GP put his foot down—a clear indication of the value of matters revolving around the GP practice.
Hemel diagnosed SLE (Systemic Lupus Erythromatosis) and noted there were shadows on the lung but pushed me into Rheumatology. I expressed my concern to my GP that I would have thought priority would have been given to the lung condition. He explained this was due to the seriousness of potential muscular damage and that the sooner attended to the better. At that time I certainly had all the symptoms and was seriously worried for how long I could be kept away from having to use a wheelchair. I really moved like an old man (65, then, is not old!).
By no other chance than the hospital that could take me soonest (Stoke Mandeville 35 days; Hemel (geographically the obvious choice) 62 days; Amersham 21 days). It was that choice that put me into the Bucks Health Authority.
Buckinghamshire has always been highly regarded by my family as a county. Primarily because it kept its grammar schools so that its education system is as highly regarded as its medical facilities. At one point, when there was extensive talk of county boundary changes, I pushed for Berkhamsted to be moved into Bucks where it could then deal with Aylesbury, Buckinghamshire's county town (not Buckingham as was once the case), which meant we related more closely with the county town, instead of Hertford the width of the county away, via Dacorum Borough that did nothing but get in Berkhamsted's way.
I digress. Amersham did two things almost immediately. Re-tested, re-diagnosed and pushed me into High Wycombe's Respiratory department. Things started happening. Ironically, at the time Amersham diagnosed me as having Sjögren’s Syndrome I seemed riddled with symptoms of SLE and nothing significantly relating to Sjögren’s Syndrome. Over the next three months the situation was reversed!
In the mean time Respiratory had pushed me into Oncology. Sjögren’s was already causing problems. Being an auto-immune condition it basically means one's entire body system can go completely up the creek. Sjögren’s had been attacking my lungs, causing inflammation in both lungs from which what appeared to be MALT lymphomas had developed but they weren't sure.
A few months of monitoring and it was decided a biopsy was needed. Upon my first meeting with the consultant lung surgeon I was so astonished I could not help but blurt out my immediate feelings. "At the risk of being awfully embarrassing, if you are as young as I perceive you to be and you hold the position you do in this hospital, it can only be because you are damned good at your job. I feel very privileged and comfortable being in your hands." We were at Harefield!
They still could not make their minds up as what exactly was happening in my lungs so, following a couple of years of monitoring (it can often happen with cancer that if you catch it early enough there is no immediate panic to do anything) it was decided a second biopsy was needed.
My consultant surgeon had since had a baby and moved to Dublin. Her replacement, another woman, did not seem much older. Both supervised but it was the same surgeon who actually performed. This time on coming to I found myself splitting open. No problem, someone whipped up from casualty came and sorted it out on the spot superbly well. Despite that; the fact the dressings they used caused an allergic reaction and I really felt as though I had been on the butcher's slab this time (there can be complications going into a lung in the same place a second time) I was actually out of there a day earlier than previously. Although I nearly didn't make it. For what ever reason, a sufficiently senior doctor was not around to sign the required discharge papers and allocate appropriate medicine to take home. We wanted to go; they wanted to get rid of us, clearly because the beds were booked for the following day's admissions!
I have no problem with cost effective utilisation of resource so, damned inconvenient though it was it showed resources were being well used. Certainly, this second time of being in there seemed a greater sense of "let's get moving", whereas previously things seemed to have been somewhat laid back.
Finally managing the oncology analysts to come to a conclusion, it seemed we were operating wlth a low level problem and that it was unlikely there would be any severe side-effects of treatment, if at all. That was January to March this year. By March it was decided that chemotherapy was not being as effective as had been hoped; stop treatment; monitor and if necessary move up a stage. This is where we get the side effects of hair falling out etc.
During this period life effectively carried on as normal. On conclusion, fatigue set in, something I had feared and do fear for the future that Sjögren’s fatigue would coincide with the debilitating effects of treatment. Ah well. At least I have had a forewarning and can take advance precautions.
So, having spent today infilling background history, I arrive at my present state. Needing steroids as a precaution against cancer, steroids may have advanced my diabetes. Encouraged by my dietician, I embrace the challenge of regulating my diet while I wait to see how is my cancer situation.
Sjögren’s effect on my ENT system seems to have reduced considerably. My digestive system has been balanced for some time. I know I have emerged from a fatigue situation and it seems my phases of tiredness have lessened. While I crashed out in my reclining chair for an hour at midday, I feel no more surprisingly tired from having worked so much on my web site than might be expected from a normal circumstance. I feel that perhaps, I am once more, "normal"! For how long?
THE DIABETES COMPLICATION
I was chatting with my lung specialist at High Wycombe in May when, seemingly completely out of the top of his head, he said "I think you've got Type 2 diabetes." He gave me a blood form and I departed, procedures expected to follow through in their own sweet way.
Matters had progressed on an automatic cyclical pace between specialists for sme months and for various reasons I had pre-booked a meeting with my GP, just to co-ordinate and ensure he was in the picture. It also seemed illogical that I should be seeing a lung specialist on what to me was a general practice matter. So, I waited for my appointment with my GP and discussed a whole range of matters.
As I suspected, he had been kept inforned by the various specialists but my interaction with him helped to infil detail. He confirmed that latest national admin changes did not affect the way my case was being handled (my main concern) and I was able to update him on my eyes (Sjögren’s Syndrome can cause eye and dental problems) and teeth. I then discussed some local facilities who could offer advice on various matters before I independently saw suppliers, whose only interest was to sell me something, rather than deal with my medical condition.
I had already had this exerience with my ears. Having followed up an ad, I had been expecting to receive an audiogram of my hearing, from which basis I had been expecting a discussion as to which frequencies I was missing, which ones were crucial and how many presets I needed. Then I could decide which hearing device was right for me. All I received was the recommendation of a particular device and its costs. No damned use what so ever. That is the difference between dealing with a commercial entity and a medical entity.
Anyway, my GP agreed with me that diabetes was general practice and he would handle it. He then refined the required blood samples and booked me in to the practice's nurse for blood letting. Following up on those tests I was booked in for the practice's dietician as a bordeline case.
Meeting with her a week later was an enthralling introduction to diabetes. As a result of our discussion, basically being updated on my Sjögren’s Syndrome status, she decided to bring forward the next set of tests, perceiving that the most recent tests had possibly produced a false negative, due to the possible influence of Sjögren’s Syndrome, such is the problem with that condition.
Diabetes can cause its own collateral damage and if registered as a sufferer, there is an automatic referral to the practice's podiatrist. More anon in due couse.