It’s Monday, 7 August and I’ve been thinking about the UK’s #NHS…and me…

 

As most of you, who have read some of my previous blogs, will realise, the past 11 years have been something of a journey into the world of ill health and disability.  While the labels for what ails me evolve as new symptoms emerge/collide with what already is, making the process one-step-forward, two-steps backwards most of the time, the reality of my situation remains barely changed but, somehow, I continue optimistic that I will, at some stage, emerge out of the occasionally horrendously dark tunnel into a life where all that is wrong is identified, fixes have been found for what can be fixed and, as with my new totally neurogenic bladder and continuing-to-fail digestive system, what can’t be fixed can be managed symptomatically (albeit with gadgets as well as drugs!) and new or changing symptoms aren’t just dumped into a bucket of comorbidities.

Still waiting after EIGHT months for a cardiology outpatient appointment

Since my hypertensive/haemodynamic collapse in September 2016 I have had two tests, an EKG – revealing minor damage to the apical heart muscle (vs an EKG in January 2016 when “nothing was wrong”) a small PFO (presumably present since birth) and LVH (signals one side of the heart has been working too much for quite a while) – and a cardio-angiogram which revealed the four main cardiac arteries not currently needing stenting.  I have, however, had my driving licence suspended since that collapse and I am still waiting for a cardiology outpatient appointment despite referrals from two neurologists (1) my fabulous chap who determined my neuro symptoms weren’t Parkinson’s disease in 2015 (see previous blogs) who has gone to be an academic in Canada (2) his successor who sees no identifiable neuro disease process to treat, but agreed to chase her predecessor’s cardio referral and will see me next year.  My wonderful GP has been chasing too, and was initially told there was no referral, then that there was a referral but nothing had been done about it and, three months ago, that an appointment would be made as soon as possible. Still nothing has happened so the GP is chasing again.

I continue to have spontaneous hypertensive crises, both with exertion and without, where my BP ramps up and keeps ramping up to mega levels, requiring me to zap it with GTN as much as I can, while thinking all the calming, mindful thoughts at my disposal, and praying that things will calm down again.  There are no obvious triggers for the non-exertional rampings, except, it seems to me, heightened brain activity!  Take my BP before I start knitting (see my Knitting Page) and then after about half an hour I suddenly realise there is pressure building and, voila… BP is on the hike.  The same is true when I am typing, drafting a letter, designing/making graphics for @Sailonline or even just watching TV.  Exertional crises I can understand and with GTN and my raft of cardio/BP meds, I pace myself – my walking remains horribly slow due to neuro stuff and newly-worsening arthritis, and I do my best not to get excited or over-enthusiastic – and this seems to work.

I may never drive again – can I sue Jeremy Hunt?

It is nearly a year that my beloved ancient Saab has been standing in her garage… I may never drive again as, by the time “the system” (horribly underfunded and overstretched crisis-management-only NHS) gets around to me I will probably be unfit to drive.  Can I sue Jeremy Hunt?  He has deep personal pockets that are, allegedly, benefiting quite nicely from how our country is being/has been privatised.

Am I a Pollyanna, or just hopeful

BUT in spite of how things are, still mostly housebound, some weird almost Pollyanna-like spark of hope remains …

If it didn’t sound too gloomy, though, I would probably call this post-Parkinson’s Disease (I still have parkinsonism!) era of my life the “Black Knight”.. not in any way meaning to sound dark or gloomy but in the Monty Python and the Holy Grail way!  Do you remember the scene?  Arthur and his servant are coconut-clip-clopping into some woods and a huge black knight stands before them blocking their way.  He challenges them to fight him and, piece by piece his body is reduced to just a mostly-dismembered torso and talking head.. .but as they clip-clop away he still shouts a challenge.  As everything that I was disappears and my “system malfunction” continues to erode my quality of life (or heads into sudden crisis) I am still shouting a challenge!  I am still me… really, I am … most of the time… well I try to be!

Finding the positive …

When my “journey” started I was lucky to be pretty OK with who I was and how I was living my life – nothing particularly remarkable but it was good.  Since 2006, however, pretty much everything that I considered the real me has been eroded, changed, modified beyond belief and I am left with what drives me.

I am pretty adaptable and occasionally even surprise myself at how I adapt to what is occurring, when I competently switch my suprapubic catheter tube from one side to the other and admire my self-made anti-skin-erosion device –  but there are times when I really do miss being the person and having the life that was mine until 2006, and I do occasionally ponder on what might have happened without the fateful anaesthetic, before returning to living this journey.

See me as I am, not as you expect me to be

Just as those living with a cancer diagnosis are hoping that folks will stop using the word “battling” in relation to their life-altering experience as it implies if you die then you lost a battle, so I am just wanting everyone I come into contact with, especially medical professionals, to stop trying to box me into being something I am not, and rather to work with me to find the best possible solution(s) for my situation.  I don’t want to be told I have “complex comorbidities” as if that justifies doing nothing – don’t you think I already know that?  I need to be accepted as I am but… that is a luxury that our wilfully underfunded, understaffed, overstretched NHS just cannot do.  The best one can hope for is that a rough sense of my bowel, bladder, neuro, haemodynamic “stuff” is on board – but it rarely is.

NHS stretched gossamer-thin – on purpose

My recent 12 days in hospital has completely opened my eyes.  Doctors on wards are spread thinly and in this era of going-by-the-numbers there is no time for them to learn or practise the art of medicine.  Gone are the days when something puzzling, but clearly happening, is considered in a wider context.  It either is a readily identifiable “thing” or it isn’t and what dictates the outcome is often a single test result taken randomly rather than optimally.  If it isn’t a “thing” then it is as if your symptom doesn’t exist, a page is turned and it is back to you and your GP (if you are lucky enough, like me, to have a good’un!) to start again.

Safe qualified nursing staffing levels are history

Wards have too few qualified nurses.  HCAs are sweet people but it is more than scary when you are having a ramping hypertensive crisis and need help, someone saying “oh I’ll tell a nurse” while cancelling the call bell it has taken every ounce of effort to reach and press, and then waft away to leave you in increasing chest pain/discomfort overusing GTN spray in a desperate attempt to avoid either cardiac arrest or stroke (the only cardiac diagnosis made last September was unstable angina).  It is actually terrifying to know that had my hypertensive crisis that day led to cardiac arrest I would now be a statistic – not because the medical staff don’t care, far from it, they are all working absolutely flat out just to manage major priorities.   I had two such crises during my 12 days in hospital, each time there were too few nurses and it took several hours for the on-call doctor to be able to prioritise me, and requested tests were just never done.  The subtle effects of one of these episodes (worst searing head pain ever, loss of right eye vision and inability to use right arm) has symptoms easing but continuing with an almost constant sleepiness, a tendency-to-droop right eye and dribbling out of the right corner of my mouth .. BUT I SURVIVED!!!  I wonder how many people actually don’t?  On a ward of 20 acute medical patients there were two BP monitors… on the night I had my first hypertensive crisis I was hooked up to one of them, for about an hour, then, because the second machine had gone u/s and I was still capable of talking, albeit with effort, it was disconnected and taken to someone deemed worse off than me.  As I lay propped up with my eyes shut, unable to move  – chest, arms and head felt leaden-weighted as if I were pulling too many G –  I began to see the smiling faces of dead relatives, dead friends and even my beloved gone-to-the-Rainbow-Bridge dog, MrK… it was a nice feeling, very calming, they were very inviting and asking me to join them.  Semi-regretfully I declined their invitation and instead, inside my head, asked them for help to recover.  I was alone, with a call bell tucked into my hand “in case it gets worse” for the duration of this episode.  At this moment, fortuitously, the many-hours-previously paged lone on-call-for-the-entire-hospital junior doctor arrived and I was given loading doses of all sorts of things and… lived.  Serendipitously, he had been in A&E in September 2016 when I was blue-lighted to the hospital from my GP’s surgery with my first hypertensive/cardio collapse – I think something/someones were looking after me that night.

Economic cost  to nation of delayed diagnosis and treatment

Delaying patient diagnosis and treatment must be costing the country a fortune – I am not currently able to work and I am still a few years from retirement, but I had a super-full healthy working life for decades.  If I were a young person now, with family commitments, how wrong is a system that expects me to find work, hold down a job, or support my family while coping with the strain of having to wait weeks and months for safe and reliable treatment, such as that only provided by the NHS (or by private hospitals affordable by the super-rich) – make no mistake, private health insurance companies are in the fast turn-round grab-your-money bank-the-profit and forget about comorbidities business.

Recent governments have, as most should realise by now, been wilfully dismantling the structure of a publicly funded, publicly provided National Health Service so that they, their cronies and those who influence them may grab profitable “health business contracts” and, essentially, steal public money – or is it defrauding the British public?  Either way, the nation is not benefiting and, it seems, successive governments are completely indifferent to the destruction and havoc they cause.  The sooner a new medical/health issue is diagnosed and treated and someone given support to return to full fitness/health, the better it is for a nation.  Having people wait weeks and months for appointments and tests and then test results and even then finding that their local area doesn’t support a particular treatment OR, worse, the alleged treatment turns out to be another private company providing another utterly shabby and unfit for purpose service (in the name of the NHS of course) is NOT a public health service.  (NOTE:  my target for this comment is a private physio provider that completely missed a majorly torn vastus lateralis last November despite my stating plainly that the explosions of pain on injury were in three places – lower back, groin and front of thigh.  This has resulted in my severely arthritic knee, caused by years of walking/riding etc etc, now becoming unstable and my formerly go-to stronger right leg becoming completely unreliable!  I am now referred again to them but… I cannot be seen until September.  Hopeless.  Thank goodness for Google and my discovery of kinesiology tape that I use prior to trying to go for a walk!).

We are being ill served and I am very angry about it – I want a properly funded and managed public health service – SERVICE… not business … a service ensuring the health and well-being of the UK as a whole.

Why company/personal private health insurance won’t help in the long term…

I am also angry about those currently in work and in relatively good health who benefit from private health insurance – why?  Because they fail to engage in the reality that is the dismantling and fragmenting of the NHS … but at the same time complain about it if they can’t get a GP appointment precisely when it suits them.  What is worse, these same individuals appear not to realise that the small print of their private health insurance policies may well exclude them from private treatments in the future if, as happened to me, even with a fully underwritten policy, conditions are deemed chronic and/or pre-existing in some way.  The benefits of a corporate private insurance policy can only continue as-is if you transfer the policy to an underwritten personal one with the same provider, otherwise a new employer/new corporate policy may exclude aspects of previous cover under special conditions.

The only people who may never need the NHS are the super-rich.

Finally I will leave you with this image – just as a reminder of what good government is meant to do:

 

 

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@joannekarma
#RCtheParrot

#ourNHS – fragmentation of care with private providers

 

Backstory

I love the UK’s NHS and use #ourNHS as my hashtag of choice most days.

This is a personal narrative based on recent experience.

When a catheter becomes a necessity…

In November 2016, I wrenched my back and hip pretty badly, even for me, and after being advised by GP and physios to take myself to A&E, I did so in early December.  After a couple of days in A&E/CDU my problems ranged further to include a significant worsening of my already wild post-Parkinson’s-drugs urination problems which now ranged from outright retention to the zero control of a newborn.  An indwelling urinary catheter was installed, removed for a “TWOC” (no, not a taking-without-consent of a motor vehicle but a trial-without-catheter!) and re-installed and I was sent home with the advice that community nurses would contact me and be there to support me in managing this new experience.

As always, I focus on the positive and think about all that I have to learn about the world of catheters which is a mystery to me at this point!

I meet the Community Nurse(s)…

Three days later I was called by the community nurses, a service provided these days in my area by a private company, and an initial home visit was arranged for the following week. The nurse who attends me on this, my first ever interaction with community nurses, tells me she has had no dealings with urinary catheters since her initial training – her expertise is in wound care.  I appreciate her honesty but feel somewhat concerned that she should have been sent to a new patient with their first indwelling urinary catheter.  As I have been googling for some days to try and figure out how to manage my catheter and its tubes and bags, as I am determined to come to grips with this extra nightmare, I had actually been hoping for someone to review what I was doing and advise on anything that could be done better.  I realise that this very pleasant individual is in no position to be of direct help to me, and wonder why she was sent and how much this non-visit is going to cost the local NHS budget.

…a scrap of paper…

We sit down (well, I loll on my bed / centre of operations and the nurse sits on my bedside chair) as she has brought some paperwork – a couple of forms, it would seem.  I establish that the only information she has been given about me on a scrap of paper is my name and address and that I have a urinary catheter. She has no knowledge of my medical history at all and starts by asking a few ridiculously basic questions.  I find this all very puzzling – this is 2017 and all this information is readily available at my GP practice and with the two hospitals I attend (which are part of the same #ourNHS Trust). Clearly there is no interconnection of records or even basic data and it dawns on me that while such a situation would be unacceptable in a 21st century public health and social care system, this nurse is, of course, working for a company that is no more part of #ourNHS than my mobile phone provider!

My visitor jots down my answers on one of the forms (apparently the wrong one for a new patient but it is the only one that was available that morning), is not interested in noting any information other than that relating to the catheter (date installed, make, model number etc) which is, presumably, the “billable task”.  There is no inspection or check made of the catheter itself, but as I am now the catheter expert out of the two of us, that doesn’t really bother me too much.

… I am patient # x of a list to be seen that day…

A week later, my second Community Nurse contact is by way of a phone call from someone else to check that all is ok and then, a week after that a different nurse turns up at my door, without any advance notice.  At this third visit, the nurse is clearly expert, tells me that the nurses choose when they work, as many also work in #ourNHS or private hospitals, and on any day are just given a list of who they are to visit by the company providing the community nursing service in the area.  There seems to be no “team” as such – I don’t press for more details as I don’t wish to appear critical, but this is very different from the team of nurses that helped my mother in her last months 15yrs ago.  This nurse is impressed with my “process” (there’s a lot of handwashing and bag-maintenance and leg-strap wearing associated with catheters, believe me!) and tells me that I won’t be visited at home again.  If I need help with the catheter at any time, I am told to call the general number and someone will be able to help,  or if something appears to be brewing as an emergency, then I should take myself to A&E.  It is an odd feeling to realise that the nurses who did come to see me will probably have no memory of even meeting me, as I was merely #x on their list of people to see that shift.  There is no sense of continuity.  Each visit has been like a supermarket transaction, imbued with no more compassion or care than checking out one’s groceries.

…so far so good? …

At this point, however, my priority is trying to manage the catheter, so I am pleased that my muddling-through appears to have led me to do things correctly, but I remain concerned that it really has been up to me to get to this point as best I can.  There is huge discomfort and abdominal pain, heaps of bypassing and I am feeling more actively unwell than I have for a while as, in addition to everything else, my back, pelvis, hips and knees are protesting because the discs I slipped in November (which didn’t need neurosurgery) are stuck half in/half out of place and attempts at exercise just make my joints yell.

…we expect everyone with a catheter to have an infection…

Weeks pass and I begin to be concerned about a possible UTI – I really feel rotten a lot of the time and dipsticks I have bought indicate lots of things are not normal, so I call the Community Nurses and after a few days of telephone tag get to explain the situation and am told that a nurse will visit to take a sample to be sent away.   A week later another new-to-me nurse arrives and proceeds to do a dipstick test.  I presume this must be a precursor to taking a fresh sample from the catheter port to send away and imagine the sample kit must be very small because she’s only wearing a coat and is not carrying a bag of any kind.  The dipstick shows major changes in colour along the strip, as I suspected it would, but the nurse then tells me that this is all normal, that everyone with a long term catheter has a permanent infection and there is no need for sample taking, which is convenient as she hasn’t brought a sample kit with her. Unusually for me, I refrain from commenting (my excuse is I was feeling too rotten, OK!).  But I really wanted to remind her that the purpose of her visit was to take a sample, to tell her I’m perfectly capable of reading dipsticks myself and that for me to go out of my way to seek help would suggest I must be feeling pretty unwell.  I say none of this, but I do mention feeling more unwell and uncomfortable than usual and that I am concerned at how bypassing is causing BP spikes and transitory chest and arm aches (worrying to me because of my chest pain/ head-pressure emergency in September 2016) and that the chest ache occasionally needs GTN spray to resolve it.  I am told, efficiently and positively, that all this is completely normal and I am not to worry.

But I do.

If my chest/arm pains, discomforts, spasms and BP spikes triggered by the bladder/catheter are all “normal”, then why aren’t they findable via Google?  Everything else to do with urinary catheter stuff is there… but I tell myself not to worry.  In extremis, I know my utterly brilliant GP will be there for me.

…the potential to be amazing is irrelevant…

Ultimately, of course, if I become horribly unwell and then a mere statistic, the Secretary of State for Health and his Government can rejoice that their shameful underfunding and fragmenting of #ourNHS has one less chronically unwell/disabled individual to deal with.  I believe I still have the potential to be amazing as an individual and perhaps even may be able to improve my physical condition with the right support and investigations, but these factors and my well-being are entirely irrelevant to this current system.

…urodynamics … outpatient clinic urine test …

In January 2017 I have urodynamic tests which reveal severe neurogenic bladder dysfunction and some structural issues but … I get a bonus catheter change by an excellent urogynae nurse.  This means I have until April before I need invite the community nurses to intervene, as urinary catheters are left in situ for 12 weeks in my part of the country.

Then in March 2017 I have an out-patient clinic appointment where I am asked to provide a leg-bag sample which is dipstick tested.  I am told that the stick revealed anomalies so the sample will need to be sent away for analysis.  I thank the nurse who tells me this, and she is surprised when I mention I had been concerned for weeks about my own dipstick results but told to ignore them.  Even now, though, the sample being sent away is the one I gave from the leg bag, not a fresh sample from the catheter port itself, but as the hospital I am attending is one of London’s top teaching hospitals, I have to assume they do know best!    The specialist I saw is adding me to the waiting list for a suprapubic catheter and prescribed some meds for “system maintenance” which I hope won’t have too many side effects, as my system is prone to react atypically to prescription drugs.

…I would prefer a robot to change my catheter…

Hopefully,  I can learn to change my suprapubic catheter myself in future (the first change will be done in outpatients), although right now, the thought of removing/inserting a tube in my own abdomen is pretty freaky, but the knowledge that a completely disinterested stranger under time pressure may end up doing it, without any awareness of me and my medical issues, is likely to overcome my concerns here.  I think I would almost prefer a robot to such a person!

…continuity of care is history when #ourNHS is privatised and fragmented …

It is actually frightening to realise that so long as #ourNHS continues to be broken up, there will be no continuity of care, no assured level of expertise in those dealing with my catheter and every other issue going forward, no knowledge of my overall medical situation, which is complex, and neither the time nor interest in me and my comorbidities as the individual on any given visit will have no expectation of seeing me again.  The same is true for everyone in a similar position.

…Chinese whispers and a sea of discontinuity…

If I find myself incapable of looking after myself completely independently, I have no doubt that I will be adrift in a sea of discontinuity.  Each visit will be a brand new encounter, with assumptions being made about me, without any full knowledge of my medical history (what records are shared appear inadequate at best and otherwise, downright inaccurate).  Should I get to the point where I am truly unwell and become reliant on these strangers in a fragmented privatised one-issue-one-provider system with notes fractured and spread in a fashion akin to Chinese whispers across umpteen different organisations, what will that do to my quality of care.

What is it doing now to peoples’ quality of care who are already reliant upon it.

For anyone relying on consistent medical care in the community this must be terrifying, with the burden of these inadequacies adding to those of our wonderful GPs who each represents a bastion of reliability in the whirlpool of chaotic medical agencies.

…the UK deserves the compassion and care of a single, uniform health and social care system untainted by the need to profit-take…

This, among many other reasons, is why as a lifelong-until-now left wing Tory, I have become even more outspoken about keeping #ourNHS as a truly public and not privatised service for the people of this country.  While fit, healthy and busy working, I had no clue about the world of the sick, injured, chronically unwell, and disabled.  It could so easily become a very dark place indeed, without the compassion and care of a single, uniform health and social care system untainted by the need to profit-take and healing for love not profit.

Post scriptum

20 March – I am called late afternoon by my GP surgery and told I need to collect a urine sample kit as the hospital advised on 17 March that the clinic sample was contaminated.  I ask about how to do this correctly as I am catheterised, but get an “oh, I don’t know about that” reply.  No-one seems to know anything! So… I Google for what to do!

21 March – I call Community Nurses /local healthcare company as I don’t think my tremor will let me stick a needle (even if I had one) into the catheter port and ask if someone can come and do this. I am told that someone will be with me “sometime on Thursday”.

23 March – a person arrives late-morning.  She used to be a nurse and is retraining, and seems v sweet and kind, BUT it transpires that she can’t change the catheter (it has been in situ for 8 weeks now) and she also doesn’t have a syringe with a needle or a syringe of a size suitable for the port of any of the three leg-bag types I have to offer (despite the fact that the bag I have deliberately chosen for this week is one of those originally ordered for me by these very same “Community Nurses” so they would know which syringe would be needed!).    The nurse-in-retraining tells me that she has been told that if no syringe works, then her “boss” has said that the sample will have to be taken from the catheter itself.  I am somewhat surprised at this as the rule is usually that there should be no air/germs accessing the catheter and bag-change should be effected as rapidly as possible.  My leg bag is disconnected and my catheter left to hang in the wind (well dangle into the sample pot) in the forlorn hope that some dregs can be caught.  My catheter is completely empty and I explain that my neurogenic bladder no longer acts as a reservoir and will vigorously expel/by-pass as little as 50ml, so waiting for something to trickle out of the catheter may take a while.  This doesn’t seem to matter and my catheter is left open to the elements for about 20mins or so.  Less than 2cm is captured and a new leg bag then attached.  Oh, and a dipstick test was also done to verify that the test was needed, notwithstanding the fact that the regional hospital had told my GP to order the urine test AND I have been reporting an extreme range of dipstick results since February!!!

If I didn’t have an infection before, then I probably do now!

It is all so time consuming, inefficient, unhelpful, stressful and plain wrong and wouldn’t happen if we didn’t have a fragmented/privatised health system.  All this ridiculous to-ing and fro-ing is just for one urine sample to be taken correctly from one catheter.

I think I am going to suggest that the healthcare company thinks about providing a nurses room at the local medical centre, where their Community Nurse team is based, so that, perhaps one day a week, folks can make appointments for urine testing and catheter changing and other simple procedures.   Quite apart from the convenience of having an appointment time (or they could operate on a drop-in basis), instead of potentially waiting at home all day, I really don’t like watching nurses put on gloves that have been stuffed in pockets that, for all I know, contain used tissues or car keys, or taken out of a medical bag that has been to who knows what pest-ridden dwellings before it gets to me!

I am so fearing my catheter change on 14 April….

 

 

If you haven’t yet visited my website, please do so.

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@joannekarma
#RCtheParrot