A Preventable Death

It’s been a long time coming but Sickle Cell Disease (SCD) is finally being discussed on mainstream media, and awareness of this chronic and life-threatening disease is finally being aired.  At the outbreak of the pandemic last year, a spotlight was finally shone on the effects and seriousness of SCD, for the 15,000 people that live with the disease in the UK, especially, in terms of the sufferer’s inability to fight infections, leading to potentially life-threatening complications.  You may have come across discussions regarding SCD on the BBC One Show, while trying to raise awareness of the need for more black blood donors for sickle cell patients who depend on regular blood transfusions to save their lives; to a storyline in Coronation Street on ITV.

More recently, you would have heard news headlines about people with SCD on news programmes, as it discusses how institutions that are in place to help, support, and care for those living with the disease, have continuously been let down. This is primarily due to the lack of awareness of the fastest growing serious genetic disease in the UK, and also because of the racial stereotypes and biases that people have, as this disease is more common in African and Caribbean communities.

Normal red blood cells vs Sickle red blood cells. Image taken from http://www.kidshealth.org

For readers that are not familiar with the disease, Sickle Cell Disease is a genetic disorder passed on by both parents. Sickle Cell Disease is caused by a mutation of the red blood cells, which are a kidney bean shape (or crescent moon shaped) inside of a round shape. Due to its shape, the sickle red blood cells have difficulties in moving through the blood vessels and can get stuck because of its shape and rigid nature, which hinders the ability for oxygen to reach vital organs when it is needed. Sickle Cell Disease is a lifelong disease that comes with a lot of wider health conditions including, delayed growth and puberty in childhood; gallstones; jaundice; bone and joint pain; painful erection; leg ulcers; strokes; serious lung conditions; swelling of the spleen; eyesight problems, including loss of vision; high blood pressure; and kidney and urinary problems, including blood in the urine and bedwetting. There is only one cure for SCD, which is stem cell or bone marrow transplant, but this is only done in the most severe of cases and currently can only be done in the United States of America. To learn more, head to: https://www.nhs.uk/conditions/sickle-cell-disease/

The devasting news of 21-year-old, Evan Nathan Smith, from Walthamstow, East London, who died on 25 April 2019 at North Middlesex University Hospital, when he was admitted after developing sepsis following a gall bladder operation, the previous week, has deeply saddened the sickle cell community. The sepsis triggered a sickle cell crisis in Mr. Smith, which required him to be hospitalised. A sickle cell crisis is when the sickle red blood cells get stuck in the blood vessels and prevents the red blood cells from transporting oxygen to vital organs. A sickle crisis is usually treated with fluids, oxygen, pain relief and a blood transfusion, depending on haemoglobin levels.

Normal red blood cells flowing in blood vessels vs sickle red blood cells difficulty in blowing through blood vessels

While admitted, Mr. Smith developed breathing difficulties and requested oxygen, but this was denied by the nurses. He later rang 999 from his hospital bed requesting paramedics to take him to Accident and Emergency (A&E), which was also denied. The coroner court, which was held some weeks ago, after concluding their investigations and hearing evidence, concluded that Mr. Smith’s death could have been prevented if he had been given a blood transfusion earlier. The coroner court also heard that the nursing team did not have sufficient training on SCD.  Read the full account here: https://www.independent.co.uk/news/uk/home-news/evan-nathan-smith-death-sickle-cell-b1827443.html

I wish I could tell you that this lack of action and lack of sufficient staff training in hospitals is uncommon, but the fact of the matter is that those with SCD, such as myself, such as Evan Nathan Smith, such as Richard Okorogheye are consistently and persistently failed by the very institutions that are in place to help and protect us. Unlike Mr. Smith, whose parents report that he didn’t get many crises, I have been in and out of hospital my whole life, dealing with sickle cell crises, infections, and life-long complications that this disease comes with. Living in London, on and off for twenty years (with a big break in the middle) I have been under the care of two major hospitals – Kings College Hospital and now, Guys and St Thomas’ Hospital. At both hospitals, I have been left worried and frustrated with the lack of communication and action from specialist doctors and nurses who have when treating me. While under the care of Kings College Hospital, on one occasion, after three separate visits to the Pain Service, I was admitted as I needed additional support in controlling the pain that I had been experiencing. Each day, I was visited by a team of doctors, led by a consultant, who informed me that I should continue with the Oxycodone subcut injections (as per my care plan) and they would monitor the situation.

Days and weeks went by and the doctors continued monitoring the situation without action. My requests for further investigations into my pain, like a CT scan were refused, until one month passed and I still remained in hospital. It was only when I complained to PALS (Patient Advice and Liaison Service) that they granted the further investigations that I had requested, gave me a top-up blood transfusion, due to low haemoglobin levels, and gave me detailed follow-up plans and investigations after discharge. So, does it surprise me that Mr. Smith wasn’t given the oxygen that he required whilst in hospital? Does it surprise me that Mr. Smith was given a blood transfusion too late? No. It certainly doesn’t but it doesn’t make me any less sickened and disappointed that a young man, full of so much promise lost his life before his life had really started because of their incompetence.

There have been so many times, while under the care of Kings College Hospital, that I felt angered and frustrated with the consultants’ lack of action. There were so many times that I actually felt they would kill me with their negligence. At these points, I knew then that I would have to transfer to another hospital that is more capable, and patient focused. This led me to transfer to Guys and St Thomas’ Hospital last year, where I did notice a slight difference in action. The doctors there are more proactive with certain things but the lack of communication within the medical team, lack of resources, and lack of working together as a team is evident during each admission. What’s more concerning is the fact that consultants took on a God-like complex and changed medications and care plans without prior discussion and consent of the patients; made decisions behind closed doors without patients’ knowledge or involvement in the discussion of the treatment that they would be receiving; and refused to compromise on medication and treatment, as well as treating patients as if they were in a dictatorship.  What’s more concerning is that overnight, there is only one doctor covering at least three extremely busy and highly demanding departments, making it one of the most dangerous and clinically unsafe places to be admitted at night if your illness worsens.

I have lost count of the number of times that I have worsened overnight with my pain uncontrolled and have repeatedly requested the doctor to come and examine me, which believe me, is virtually impossible. There have been numerous times, where I have been waiting for hours through the night in excruciating pain. Despite my pain, I have been forced to persistently ask the night nurses to bleep the doctor and request them to come and examine me. Despite my pain, I have been forced to go above the doctor on call and try and contact the doctor in charge of him/her. As a last resort one night, I called 101, the non-emergency number for the emergency services, who advised me to call the 24-hour helpline for Adult Social Services (under neglect and institutional abuse) as I was not given the treatment and help that I needed.

On the rare occasions that the on-call doctor at night (and over the weekend) does come to examine me, they are always reluctant to make any changes to my treatment as they have very limited or no training and knowledge of SCD and I have been told that they do not want to make a mistake. But, in their non-action, they are making an even bigger error and leaving those in dire need of their help, abandoned at their most vulnerable point, without loved ones around for support and reassurance.  This is exactly what happened to Evan Nathan Smith that fatal night when he had no-one else to turn to. Those caring for him turned their backs and said that he was told that he was fine but as a person with a life-threatening disease, he knew his own body and knew that he needed help and made one last stab at saving his life by dialing 999 from his hospital bed, pleading to be taken to A&E for some life-saving treatment, but yet again, his request was denied.

Photo by Alexas Fotos on Pexels.com

I am tired of the lack of support that sickle cell patients get in hospital. I am tired of sickle cell patients treated like second-hand citizens in hospital. I am tired of the lack of communication from specialist doctors and nurses with sickle cell patients. I am tired of the lack of resources in hospitals and especially the lack of resources that are provided for sickle cell patients. I am tired of sickle cell doctors refusing to be patient-focused and just seeing and treating the disease. I am tired of the lack of awareness and education of SCD. I am tired of sickle cell doctors and nurses having inadequate knowledge about their own specialism. I am tired of sickle cell patients not being prioritised even though timing is everything with a disease like sickle cell. I am tired of all the fighting, arguing, and complaining that we are forced to do to ensure that as sickle cell patients, we receive the treatment and care that they are entitled to, both inside and outside of hospital. I am tired of seeing people living with this horrific disease die prematurely, due to doctors and nurses’ incompetence. I am tired of all the excuses.

I am tired but I continue to fight. I will fight until we stop dying both unnecessarily and prematurely. I will fight until the world is educated about this disease. I will fight until we are treated with fairness, respect, and receive the high-quality and timely treatment that we deserve and are entitled to.

Published by Iliana Ike

Passionate creative who likes to explore different art forms for expression, awareness and healing

One thought on “A Preventable Death

  1. Oh my goodness…I am so sorry to hear what happened to this young man. I literally just finished writing a blog about the terrible treatment the health care system gives us, and how I almost died at home because of it! It’s just so sad and disheartening the way they treat us with Sickle Cell. We are human beings too, and deserve proper treatment just like everyone else!

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