Opinion: Getting good medical outcomes is a fight to be heard - II

Up against the system

When I wrote last week that my NHS rating is a 6 on a scale of 0 – 10, a series of conversations with users of the service and most especially, my personal experience highlighted issues I have overlooked rather than pursued.

Blog - Opinion: Getting good medical outcomes is a fight to be heard - I

There are organisational inefficiencies that consequently impact the patient at the point of contact and the bureaucracy demands those who people the establishment that they need more time to address issues and where they do, they should be more attentive.

In some cases, those who choose to address ineffective processes that result in poor outcomes are deemed, termed, and labelled difficult and troublesome. The person's suffering is forgotten as the Hippocratic oath of service becomes a perfunctory recitation without heart or mind involved. The patient is a customer on a fast-moving conveyor belt to the exit than to wellness.

Organisational failings that fail us

In my other blog, I talked of when I had to relay my medical record to a doctor because my file was not available to check my notes for the consultation. It would appear, every patient that visited on that day, if they were not as clued in and read up on their condition would have received attention below par.

I have high praise for the department that has taken on my case for almost 8 years, but they are not perfect and not all the consultants I have met give due heed to the wider issues of who the person they are seeing is and I can understand their limitations. However, one has to question how with that knowledge of who was attending for the day the essential documentation was not provided to the consultants for review and understanding as they met their patients.

It might have been a one-off situation, but I have the feeling there is a rot that pervades the system that is seething and creeping almost unaware to those with the responsibility to ensure things work better for the desired outcomes of their patients.

Seeing but not perceiving

Then, it was the lassitude that greeted my need for treatment of a co-morbidity condition that they knew of for more than two years, but never sought to address until I challenged the thinking in the department. You could almost feel they were more ready to express sympathy after your demise in the knowledge you were one less problem to deal with than face the complexity of the person-problem conundrum.

When they advocated for the change of my drug regime for a new medication, the consultant inelegantly let slip that the decision was being made on a cost basis as my medication was still under patent protection. This was reinforced with a contrived neurological test as I did mention absences in thought that could be side effects on my memory, much of which I had compensated for as I noticed changes in how I remember things, especially in the short-term memory space.

The struggle of outlay over outcome

The new medication was a hellish 7-week experience that they were keen to fix me to after the second week which I thought was too short a period to understand its effects. I dare say, one of the side effects that was on a label you could tear off from the packaging included sudden death. Each day, I recorded every funny symptom from tingling in my extremities, to insomnia and nausea – those were the prominent ones.

I walked into the department with 42 pages of side effects recorded for each of the 42 days and demanded I be put back on my old medication that I had tolerated well for over 8 years. The year after this sordid experiment, there were generics of my medication available, and I have been on those since then.

Obviously, there is a cost to medical provision, and I cannot ignore the towering cost of the 12-week medication for treating the co-morbidity 7 years ago with new drugs for which I am grateful, but it is never comfortable to be in the hearing of cost rather comfort and outlay rather than outcomes.

Being there but not with me

It was my last consultation that inspired these blogs as my doctor’s notes created on the day of my visit or thereabouts get sent to both my GP and me. Now, after that consultation, I was given a survey to fill in about attending the consultation that day. After receiving the note, I would like to review my earlier commending comments.

This is for the simple reason that I discussed a number of issues with the consultant that should have superseded the talk we had 6 months ago. On review, there is little of what we discussed in the new note, I can also put it down to either the consultant being distracted or inattentive. That conclusion is easy to arrive at as when he said he had refilled my prescription, it was one of two medications that he prescribed, and I had to return the next day for the other medication.

The notes can be consequential

Doctor’s notes might hold no particular significance as a simple administrative process, but when one is engaging with the system and some decisions are predicated on what the doctor’s perspective is of you and your situation, there can be no room for error or variance between how you describe yourself and your doctor's observations. I can only wonder what it would take to rectify this without creating a crisis of confidence and trust within that team of medical personnel.

Indeed, I do make demands on the NHS for better outcomes which have much room for improvement, but there are only so many things you can overlook before you realise something radical is needed to ensure you do not become a mere conveyor belt statistic.

It is a fight to be heard and listened to, beyond which you hope that they would respond and act on the situation, with your interests to heart and in your favour.

Opinion: Getting good medical outcomes is a fight to be heard - I

Not operating at full potential

On a scale of 0 – 10, I would probably put the quality of the service I get by default from the National Health Service (NHS) at a 6. If I want better outcomes, I need to challenge the system and the process to do much more.

Comparing my experience with those of others who interact with me about their issues and challenges, I seem to be getting a much better deal than them in the responsiveness of the institutions and establishments and more particularly from the personnel that man the points of access I utilise.

General practice without practicals

I do have a GP, but I never met her even though I have been registered at the surgery for close to 8 years, the only times I visit are usually to get the annual flu jabs if I need anything else; it is impossible to get through on the phone and when you use their website, my most recent application took 10 days to get a response and that was to ask me to pay for a possible referral from the GP who was to call me in another 3 weeks.

Ah! The GP in whose docket I was, retired from the practice 18 months ago, and it was when the surgery contacted in the response that I found out who my new assigned GP was. My main engagement with the NHS is actually elsewhere, my GP just gets informed of and updated on the observations and recommendations.

It is my body first

As I have had to fight for better personal outcomes in pain management, suggested treatments, and delayed intervention both in the Netherlands and the UK, the lessons I have learned personally and from others reviewing issues with healthcare delivery can be useful to others.

One key point I always make is, “It is my body first, before it is your guinea pig.” That was what I told a team of consultants and an insistent neurologist when after months of chemotherapy they wanted to perform a lumbar puncture, which I was not keen on. They relented.

At another time, the pain medication was insufficient, and I had to disabuse the notion that black people have a higher pain threshold and can endure much more suffering that the medical establishment defaults to think we are becoming junkies rather than people who need simple relief. Yes, after the consultant expressed some bafflement, he did increase the dosage of my Fentanyl patch and the pain considerably subsided. I was grateful for it. It is documented research that there is racial bias in pain management for black people. [NIH: Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites]

Be forthright without fear

I lived with a diagnosed condition for more than 3 years that presented a co-morbidity, and each time I went for my biannual check-ups, it was noted but not dealt with. Everything with done around the periphery of it but not the essential action required. At one such consultation, I said to the consultant, I am very aware of my morbidity that you have observed and done nothing about for years, what do you intend to do about it as you all know it is getting worse.

I guess he was shocked by my forthrightness that within a month I was put on the latest medication and the condition was eradicated in less than 12 weeks. I have found I need to ask questions, seek satisfying answers, and deliberately go over a review of my test results to observe trends and mitigations to attain outcomes.

You cannot use the NHS from a stance of passive participation, you need to understand your condition fully, be knowledgeable and clued in on your medical notes as well as the medical personnel. There was one visit where my file was not available, when I finished, the doctor commended me for giving a detailed situation as good as a medical file. You need to read up and understand everything along with studying developments concerning your medical profile.

This might well help you

Anyone who needs access to the healthcare establishment, they should listen to the Reith Lectures delivered by Dr Atul Gawande on The Future of Medicine that covers topics like, Why Do Doctors Fail? and The Problem of Hubris, amongst others. I believe there are many tips and ideas you can gain about attaining the best outcomes in your engagements. [BBC: The Reith Lectures: Dr Atul Gawande - The Future of Medicine]

I started this blog to write about why I have not received some of the outcomes in service, attentiveness, or understanding of my requirements. Whilst some of that is covered in this blog, I feel I need to review how to write the second part of this topic.

Making new blood stories

Necking on the arm

“You are the vampire on duty today?” She laughed and called me cheeky, this being after I had seen my consultant for my biannual consultation which passed quite without event. Though I did fill in a survey for the registrar that saw me, who I did meet on my last visit, nothing memorable stands out from our conversation and it probably was the shortest engagement I have had in years.

Given the opportunity to ask questions, I had no inclination at all, beyond the cheerful greetings and recognition at the reception, the weighing-in, height measurement, and blood pressure readings were a rather perfunctory exercise.

Our man the hands like shovels was nowhere to be seen as I drank as much water as I could ingest through the night into the morning to ensure when the needle was coming for the vein, there was something to give. After giving up a urine sample, I sat and waited to be called into the treatment room where the nurse was taking blood for testing.

Cheeky and Swiss cheese arms

Presenting my left arm, she felt for a vein and then punctured my skin, I watched every action without being squeamish, but nothing came, it was dry and unyielding, and it was not Nicholas doing it. Then as she suggested trying my right arm, I could see a vein presenting quite boldly as I completed her statement about if she could not draw blood, “You’ll sink your fangs into me?”, I retorted.

The punishment for my precociousness was subtle, as she put a folded gauze staunch on the first needle puncture and applied enough tape that it almost rounded my arm catching the hairiest parts of my arm in the process. I knew the peeling off would be gritted teeth and some agony if I could be man enough to do it today or allow it to wear off over days.

The right arm initially did not come to play, but soon enough it gave in before desperate measures were needed. I am always surprised at the darkness of the colour of blood as it feeds and fills the vials. In no time, 7 vials were filled with blood.

Could we be better armed?

Yet, between the Netherlands and the UK, I am still surprised at the difference in the art of phlebotomy. Dutch hospitals insert a needle attached to a tube that feeds the vials, whereas here, there is no flexibility between the needle and the vial, which means the patient can easily be irritated and bruised by holding the needle in place and the action of attaching each vial. I should not have to write a novella about my many experiences of having blood extracted.

How I wish the Theranos experiment of Elizabeth Holmes had worked where their dream was to be able to conduct all blood assays from a single drop. Then I could not get a drop from my finger when I tried a home test kit some months ago. I believe Theranos was a good idea long before the means and technology were available. Maybe in a century, blood tests would be as easy as having a light spectrum impacting on the skin like we have with smartwatch pulse oximetry that records peripheral oxygen saturation (SpO₂)

I received my prescription all sealed up only to realise when I got home that a second essential one has not been dispensed. The pharmacy was quite helpful in facilitating it and I shall pick it up tomorrow. The other parts of the day included an induction to volunteer as a welcomer to the cathedral. I have a bit of bedtime reading on church history to do.

Now, I think about it, how that I am always inspired to write something interesting about having blood taken for tests.

Essential Snobbery 101: The waning art of discretion

In view of the setting

It is interesting to review a day in which some setting within which I found myself brought a mix of behaviours, attitudes, prejudices, and indiscretions which on reflection just indicated how much we need to be self-aware of how what and how we do things can affect others.

In the first instance, the engagement which had moved from the necessities and essentials of effective communication last week was initially an exercise in how the same instructions given to a group can present different results in comprehension and action. Though the core element for the day was the broader subject of diversity, equality, and inclusion.

An undress in address

In a multicultural grouping of diverse and variant abilities, this would bristle against the learned long before the acquired suits you to the environment. My first encounter came with an enthusiastic fashion aficionado who in my view probably knows what goes with what for what time of the day but forgot to recognise we were not being groomed for either the catwalk or the red carpet.

As I asked to sit with them, my acknowledgement of compliments on my apparel seemed to open the door to a level of intrusion that should have invited rather than imposed. However, she took it upon herself to instruct me on what choices of colour and style should match what I was wearing. I could have brusquely rebuffed her and asked her to mind her own business, but I made the allowances in observation of an intriguing display of the use of discretion.

Absent filters of sharing

As the day progressed, there is something about just giving out too much information, where even as you begin to cultivate familiarity in a grouping you let down your guard too easily to reveal what probably should be kept to yourself in some eagerness to share something that might yet not be known about you.

Even though I can be quite expressive, I still filter the products I share and consider what is a no-need-to-know in consideration of how what one dares to share might affect others. Discretion is an art in and of itself.

Once some secrets of others were shared, there were a few instances where I could have interjected with ‘Me Too’, but I was not so inclined, I learned much and revealed little else, but in the observation of character, you appreciate who to keep in your confidences.

Of prejudice in scowls

Then came the apologies, this was in the aftermath of both discrimination and prejudice that some would have observed as redolent of a stereotype belonging to a certain demographic that for a matter of discretion again one would think but never voice.

The need not to voice everything that comes to mind even when there is irresistible prompting is a discipline in awareness and sometimes necessary not upset others.

That I found myself in the middle of the exchange whilst offering an example to buttress a point was incidental, but I was only ready to reveal so much about myself without laying out myself to avoidable vulnerability and exposure in sharing information that was not germane to the discussion. It was rattling and eventually resolved, uncomfortable would not fully describe what happened.

Platform pearls before swine

Back at home, I happened upon a tweet that included a clip to a BBC interview with an unctuous ingenue, a Nigerian male YouTuber who with little urging seemed to spill the beans on the immigration inclinations of his fellow countryfolk just at a time the UK government has been looking for a means to reduce net immigration and dependants joining students during their sojourn in the UK.

He, apparently a dependant himself, in his excitement ingratiated himself with a forwardness lacking self-reflection that could implicate him in immigration fraud, when he inferred that he had helped some falsify documentation apart from painting Nigeria and Nigerians in a very bad light. His quest for notoriety and clout presented more than an opportunity for indiscretion and lascivious boast of questionable ability or prowess. If ever the pearls of a large platform were cast before swine.

We remain, good ambassadors

He no doubt irked many a Nigerian at home and abroad, but I, being a 25-year resident of the UK and another 12 in the Netherlands; we Nigerians by birth, heritage, or allyship are unwittingly ambassadors in the communities wherein we are and no upstart regardless of the platform they gain can rubbish the good and useful contributions we indicate in our communities.

Honest Nigerians need not fear a backlash in their quest to emigrate, this would blow over as we have always faced hurdles from as far back as memory would allow and have still made the moves and progress, we have desired. Our YouTuber who would not be granted even basic recognition would fade into obscurity with just the same speed as which he came to our notice. An irrelevance in the scheme of things.

In the sidebar, I joined a Twitter space to assure Nigerians of continuing our good work and for all I had to say, one was too distracted to listen for he had read my profile and all he could glean from it was to ask why I am gay. I could have been exasperated, but when you realise that some can never learn to mind their own business, you make a cursory note and ignore it.

Thought Picnic: Making allowances in support of others

Making every allowance

There is an aspect of character development that I strive to improve that is a work in progress, one where I am ready to make allowances with understanding and latitude rather than immediately assume, prejudge, and condemn.

I guess where I began that journey was when I realised that no matter what experiences I have had and how similar those experiences might be to another person, even if I could understand what they were going through, I could not equate my situation with theirs to the point that I felt my empathy fully embodies their circumstances. I must make allowances for variance and impact, or I risk dismissing their narrative in the context of mine.

Understand then appreciate

Part of that learning has included resisting the attempt to insert my story into their narrative even if I mean well by trying to assure them that they are not alone in their suffering. The art of listening attentively and registering with concern and humanity the experience of another is an exercise in both discipline and self-control we can all cultivate.

For instance, through personal experience, I know what pain is, the pain of cancer especially and the four different kinds of pain medication I took to alleviate the pain. When my pain medication patch fell off my skin, I laughed myself into almost delirium to generate endorphins as pain alleviated whilst the new patch took hold. Yet, pain affects people differently I try not to assume and assert I feel another’s pain just because I know pain, I understand what they are going through, but their experience can be so radically different from mine.

Blog - Laughter follows my hospital visit

Blog - Thought Picnic: My laughter and my pain

Blog - Let's treat the cancer and laugh

Even where I do not understand what is being shared, I endeavour to learn rather than react and negate, it is better I work with my ignorance to acquire knowledge than project the pretence of being fully educated even if that might leave me looking stupid.

Be kind in questioning

That is not to say one does not have doubts or one is yet to be convinced, much as engagement is inadvertently the art of persuasion which might or might not be successful, the line of inquiry should engender a quest for understanding rather than an immediate and brutal antagonism especially where one has a sense of disagreement. I have to appreciate that to whatever extent in depth or superficially and only if I have clear discernment, whoever has engaged me has fully thought through what they intend.

The questions are phrased in ways to help clear the blind spots to provide additional insight I learnt from my professional life where implementations are assessed now on the premise of why they have done something in a particular way, but on whether they might have seen the significance of another perspective. Be careful not to repudiate and put people you would be working with on the defensive.

Exert yourself in support

It brings to mind a question I have dwelt on in terms of certain opinions, ideas, or plans that have been presented to me, how can I best support this person in their quest for whatever they have purposed to do? If at the time, I have nothing supportive to add, I should apply restraint, the least I can do is listen and be neutral, and I could go better with some encouragement, beyond which there are opportunities and a fuller engagement to help them achieve their goals.

Much of this includes having a lot of patience, and a readiness to allow people to move at their own pace while they sort out issues knowing that your support, understanding, and love are present whenever they choose to update you. In some way, I also realise that I cannot expect that from others, this is my personal character development programme, others are also doing whatever they can to relate better to others.

Pouring sugar into my ears

Mums in admonition

It is quite funny the kind of early Friday morning banter I have with my mum which after the greetings follows a range of questions, answers, prayers, advice, admonitions, and generalities.

At 57, I am both a child as much an adult, though, in the admonition department, it is like a tussle of wills and determination. Obviously, one of the sticking points is how to wean me off sugar and my apparent addiction to sweet and sweetened things. Much as I avoid artificial sweeteners of every sort, pure sugar that goes into confectionary and demerara sugar that I put into beverages, I cannot seem to avoid.

Then again, some years ago, I did take sugar out of my tea and as long as my latte was milky enough, I could have coffee without sugar, I have returned to my old ways, and the craving for sugar heightened by reduced sensitivity of olfactory receptors and taste buds.

Sweet to my hearing

Mother however would not hear my pleadings and even as I would hate to admit I am addicted to sugar; it is something I should work to reduce just for health’s sake. She seems to think she can apply and exert coercive pressure by twisting my ears so that they turn and burn bright red to which I retorted, sugar does not go in through the ears.

The impression I got was the flaring of my ears might well moderate my use of sugar and before I could say, Fat Chance! I could feel my ears warming up and I relented on the point of adjustment I was taking only to make coffee some two hours later with the same amount of sugar I put in the mug yesterday, which I ended up not drinking because I was invited for tea by my neighbour. It is muscle memory as it is taste bud memory.

As for my ears, spare the twisting, I can still remember the last time.

Reflections on a blog since August

Reflections on a blog since August

Indeed, he’s a work in progress,
From which none will digress,
Even though it’s a long recess,
From that last state of process.

For he was called to write a blog,
Not one that you could really flog,
But he has made quite a slog,
That there’s nothing left to plug.

He remains that amazing muse,
With thoughts, I cannot refuse,
When he attempts another ruse,
He finishes with a good excuse.

How we long for those goods,
That puts us in the right moods,
He forgets how it serves foods,
To all the girls and the dudes.