Samantha Greaves, a 50 year old sickle cell warrior and founder of the Sickle Cell Cause support group, expected doctors and nurses to know how to prepare for an emergency operation she needed as a result of sickle cell complications.

I had severe headaches for a few years, and in 2015 I was finally referred for a head scan. I found out that I had a few aneurysms in my head. One was quite big and I was told it could burst at any moment.

My consultant called me, she was very concerned and commanded that I go to the National Hospital – the best in the country for anything to do with the head, so she booked me in. She told me to go now but I wanted to wait until the morning so I could sleep in my own bed. Reluctantly, I obeyed because she informed me that I’d been booked to have an emergency operation in the morning, however it was to be a week later before the operation took place.

On day one at the hospital, there was issues with beds and I didn’t have a drip – just really silly things which made me feel anxious. This operation was supposed to be an emergency, so why did I not have a bed?

Day two, three and four passed. I was still waiting for my operation. Each day I was prepped to go but each day I was returned to my bed. It was a different excuse every day. I could see that the doctors and nurses were unsure of themselves. It was like they hadn’t prepared at all. Two more days passed and I was getting nervous. My daughter who was with me, was nervous. I have sickle cell – I should have been on a drip the moment I arrived. I told the nurses and doctors this, and they didn’t like it, but my life was in their hands – what choice did I have? I have had sickle cell since birth. I have been in and out of hospital all my life – I know what care I should be getting. It was obvious that the nurses, doctors – nobody wanted to touch me because nobody wanted to be responsible if something went wrong.

On day seven, I had had enough, and I called my consultant from my hospital. My consultant contacted the haematology department at the hospital I was at, and told them what to before my operation. It wasn’t until then that I had finally got the operation done, the build-up put me in such a state that I didn’t feel as if I was in the hands of people I could trust. There was just no confidence in what they were supposed to do. By the time I was taken down, I didn’t want to go. I said to my daughter: “What are they going to do to me?” I was terrified. I give thanks to God that I did survive. But that wasn’t the end of it. The delay caused me to have the worst sickle cell crisis I ever had.

I was on a ward with people who had brain tumours and other life threatening conditions. My crisis took full hold and I was vomiting across the room. I screamed in pain, half my body off the bed. I felt embarrassed that everyone could see me like this. I was traumatised. Two cleaners would walk by and pray for me: “Lord Jesus….” they repeated, with raised voices.

I remember the moment I woke up after my violent episode. There were cards left on my bedside table. “What is this?” I remember thinking to myself. I later learnt they were Angel cards. The woman with the brain tumour had put them there. It was her way of trying to help me, spiritually. She left them there to protect me. The cards and the praying cleaners made it seem like the whole ward believed I was going to die; they too were traumatised.

What was meant to be a two day stay in hospital, turned into almost a month. I was still in pain, from my sickle cell crisis. The doctors didn’t know what to do so they continued to give me more and more morphine. My daughter contacted my consultant again, and I was transferred to my own hospital, North Middlesex hospital, so I could be under the care of my consultant. When the doctors were looking at my medical charts, I saw the shock on their faces as they conferred with each other. I asked them: “What’s going on?”

They said: “You’ve been overdosed, so we have to wean you off the drugs before you come off them completely, and until the pain from the sickle cell crisis recedes.”

I stayed in the North Middlesex Hospital for an additional 18 days after this, and I decided to report the bad practice of the previous hospital, but before I could do this; when I got home, I received a phone call.  It was a nurse, from the National hospital, following their protocol of finding out how a former patient is getting on.

I said: “Your service is terrible, you really need a sickle cell support practice in place. Her reply shocked me: “We have one.”

I didn’t want what happened to me to happen to anybody else, so I suggested that the hospital invite my support group to speak to staff about how to care for sickle cell patients. People are living longer with sickle cell, so doctors and nurses need to be aware that as we get older we will experience additional complications due to age.

They nearly killed me. This cannot happen again.

To be continued…

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