Monday 29 May 2023

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.

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