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.

Beyond the fallacy of solitude

At one in two

Sometimes, I just want to be left alone, left to my own thoughts to be by myself. I know this desire is a difficult one especially when in a close relationship. It is a process of reconditioning and adaptation that is not easy but necessary when thinking and acting for two.

Your thoughts and moods are not as personal or private as they once were. Any apparent change in attitude, demeanour, or responsiveness is immediately noticed as you run a barrage of enquiries and questions as to how you feel or what might be wrong with you, with them, or between you both when there really is nothing the matter at all.

Unfortunately, there is never a satisfactory answer to the many questions to which there is an implicit demand for a suitable, adequate, and proper explanation, or it presents a vector of possible conflict. How do you explain when you just feel unperturbed and meh?

Solitude and expression

Then, I guess the concept of solitude is an often-misunderstood subject about individuality, the idea of space and the cultural dimensions that might pertain to it. My blog is both a public journal and a conservatory of thinking that frequently has too much read into what is written. Whereas its fundamental purpose is a forum to document and develop thoughts for possible discussion.

I fear that when my blog is read in this way, it would begin to arrest expression leading to self-censorship and the loss of an outlet for my own catharsis, that is something I would hate to happen on my blog. Its free format for expression and introspection is valuable and useful, retaining this space for it matters much.

Person and personable

Indeed, I am a social being, I love company, companionship, and my relationship, but not to the extent of feeling like one part of conjoined twins fused together at some part of our bodies. By nature, I am also introverted, I do not function well in crowds. Heck! I went to bed early leaving guests to my birthday celebration partying.

This is same person who appears to easily strike up conversations with strangers. There are many facets to personality and individuality, I can be a hermit easily forgoing any human intervention cooped up in my apartment for up to a week without it bothering me, it suits my temperament.

However, the joy, security, and stability of having someone to love, and lean on, is priceless. I cherish it, I honour it, I will continue to nurture it and build it into an enduring treasure of life, may it prosper and grow, I love you, Brian.