It is not our job to self-advocate for urgent care
Yet we must for our lives depend on it
As I limp my way to Boots to urgently pick up Lactulose (fragile from surgery, still in stitches and covered in dressing), I am rekindled with the same rage I have felt after having been neglectfully misdiagnosed consistently for an entire year only to realise that I had a nearly septic gallbladder which need to be urgently removed last week.
With any major surgery, patients are typically given lots of opioids and morphine to help with the pain. Whilst these pain meds are indeed a lifesaver post operation, I have since learnt that they obstruct the digestive process making it near impossible to pass stool post-surgery – a milestone seen as a sign of healing. I should elaborate that the definition of 'near impossible' feels akin to birthing a baby whilst having surgery stitches in one's abdomen.
Given what I expect medical professionals should know both surgery and opioids, why should I have to nearly rupture my fresh surgery stitches before realising this? If I were to cause harm to my body during this time, would it indeed not cost the NHS more money to remedy the situation? I read that it costs the NHS £71m annually for constipation related admissions. Does it not make sense to prevent me joining that number by bringing a serving of lactulose each time I was given oral morphine in anticipation of surgery related constipation? And if it is a question of cost, should it not be a discharge prerequisite or post operation care to advise the patient to purchase them just like you do paracetamol, knowing that this would be required for them to heal.
Why are we not looking at the full picture? Why are we not looking at the full patient journey, if not for a better experience but to connect the dots and increase the chances of correct diagnosis and care? Am I mistaken in my assumption that the NHS has a duty of care to its patients, or am I to assume that care only extends to certain patients?
Since April 2020, I have complained of severe upper abdominal pain which would often spread to my back. Each time, I was given Omeprazole, a drug I understand is not meant for long-term use but was freely prescribed to me for the vast majority of the last year. During this time, I also since discovered the linkage between Omeprazole and Polyps, a piece of information that became concerning as a small polyp was found in my stomach last year following months of Omeprazole use.
Each GP I spoke to (and there were a lot of them) advised me to take up an anti-inflammatory diet, to eliminate coffee, alcohol and more, implying lifestyle choices were responsible. Desperate for relief, I diligently followed the advice meted out – I quit coffee, alcohol, ate regular small meals, cut fatty and spicy foods and even stopped eating red meat. Despite these drastic dietary changes, the pain continued with increased frequency.
As the pain spread through my back, I thought perhaps the lockdown enforced WFH had negatively impacted my posture and so with the same verve I adopted towards my dietary changes, I changed my workstation, ordered new chairs and laptop stands, booked myself into acupuncture and osteopath sessions, tried yoga, stretching, etc but nothing worked. I still had searing pains which would start around the right part of my chest before spreading to my back.
I have lost count of the numerous times I cried in agony to my GP only to be met with a litany of rehearsed, disinterested responses rather than a reassessment of my case. After what seemed like an eternity of self-advocating – begging – tirelessly, I eventually did an endoscopy test but as was the routine by this time, the process itself was also riddled with lack of follow through. As at today (almost 3 months later), my GP still does not have the records of my follow up session with the gastroenterologist.
I was sent off to have an Ultrasound and with an understanding that my care was in my own hands, I asked about the process and whether there was anything unusual. I was told that there were lots of gall stones in my abdomen and that my GP would need to follow up with next steps. Again, as a today my GP is yet to follow through with these supposed next steps.
This back and forth continued for the rest of 2020 and early 2021, an agonising cycle – I would have a flare up, call my GP in distress, be prescribed more Omeprazole, chase my own records down and advocate for my own care with zero follow through. Eventually, this cycle of neglect culminated in two major incidents where I ended up in A&E on two consecutive days with excruciating pain in my stomach, chest and back. On both occasions, I vomited several times and on the second day, an ambulance had to take me to the hospital as I became sick whilst I was on the phone to 111.
At A&E, I was pumped me full of pain killers and sent home despite my protests that I was still in pain. The following day I ended up back at the A&E and again, I was given painkillers, the severity of my pains was ignored and I was to be sent home again. On this occasion I resisted, refusing to leave without a clear resolution to my pain.
Unfortunate as it is to admit, the first time I felt seen or heard was when an older Nigerian lady came to administer my COVID test and completely overwhelmed, I burst into tears. For the first time, I was listened to and treated with empathy. When I told her about this whole journey, she gave me the strength to stick to my guns, and advocate for my own care till I was taken seriously.
Why did I have to do this to be taken seriously? What if I had not encountered a few kind people who pushed me despite my intense exhaustion to advocate for myself? Why was my pain not taken seriously? This experience is not unique to me. I do not have to go very far to hear shocking stories of neglect amongst friends and family who have also had to fight to get everything from diagnoses to actual pain management. It strikes me that every Black woman I know who has been in hospital has experienced this neglect to some degree. Stories where spouses have had to get involved because they have assumed that the woman is 'exaggerating'.
It is maddening and shocking.
At the height of my pain, I was told to persevere and I could hear the staff whisper about whether I had left the room. Clearly, I was someone to be got rid of, an inconvenience. I can confidently say these are not assumptions because I was reprimanded for being in A&E two days in a row. Who in their right thinking would elect to spend hours in hospital if they were not in severe pain?
Eventually, when the connection was made that my pains were consistent with Acute Cholecytisitis – inflamed gall bladder, they moved quickly to schedule the surgery. From what I understand, the urgency was because if the gall bladder were to become septic, I could have died. Looking back over the last year, despite my protestations and calls for a second option, I was being wrongly treated for gastritis when in fact I had an enlarged, inflamed, infected gall bladder.
Recounting my experiences, my young niece was understandably irate about my experience. We discussed how the NHS was underfunded and under-resourced but as she quite rightly pointed out, funding and resources solve one problem, but how do we solve the problem of bias? I know that the knee-jerk reaction would be to reject the suggestion that my experiences were bias in action. When I complained about the lack of experiences thus far, an A&E doctor suggested stresses due to COVID. I am aware of the intensity and difficulties of working under these times so I do not seek to minimise this reality, However, not only do I have family who work for the NHS and were also enraged by my experiences, there were a handful of nurses who reflected the empathy and care despite working under these conditions. Whether my experience was bias in action, mismanagement due to COVID or both, one thing remains true, the collective experiences of my friends and family have existed long before COVID so we are left with the same question. Why is our pain so consistently ignored?
The natural question we all ask is, why was this not identified sooner? Could my GPs had taken a more interest especially as the pains did not improve? Had the situation proved fatal, it would be a matter of inquiries and much hand wringing that hardly results in any substantial change to the quality of our care particularly as Black women.
Much has been said and researched about Black women's pain but I have only ever experienced these via friends’ accounts of their reproductive challenges or via reading about studies highlighting that Black women in the UK are 4 times more likely to die in pregnancy and childbirth than white women. Having never had children, I was unable to directly relate but following my experience over the last year, I know this is an area that must be investigated.
A good friend has been moved round the system for over 3 years and in the process, her fibroid have grown to the size of a 20 week foetus and her periods are agony as she is still waiting for a resolution. A pregnant friend has been ignored regarding her pain with hypermesis. I have not had to search for these stories, these are women within my friendship circle. I challenge you, put out a call via various media channels for Black women and their problems with the NHS and may I suggest taking the responses very seriously.
Thankfully I am on the road to recovery and I am very thankful for that and really tip my hat to all the NHS nurses and surgeons who showed empathy and were demonstrably quick after finally identifying the issue.
However not everyone will speak up, nor should they have to. They should be listened to. If I am in pain and in hospital, I should not have to defend my right to care.
I write this because not only am I incensed at my experience and those of my friends and community, I write to highlight a very important yet often ignored conversation.
Should the argument be made that this was not due to bias – a difficult argument – there is still the issue of a lack of integrative care. If what we achieve is effective integration of hospital systems so that specialists can better communicate with GPs in real time so that they have the full picture on how to support patients that would be a win for us all as tax paying citizens.
This is 2021 and it has been almost a week since my surgery and my GP still does not have my discharge notes to ensure proper post-operative care. My GP still does not have the notes from my endoscopy or Ultrasound since December 15th which is unacceptable and irresponsible. That I had to search through my photos to find my endoscopy results to show the doctors prior to my surgery is mind-boggling. I am not a researcher nor am I a doctor so perhaps I am naive in my expectations but naivety is a tool we absolutely need for change.
I would like to see a world where we no longer have to go through experiences like this in order to be cared for.
We should not have to self-advocate for care!!!