Sickle Cell Experience Part Two Continued…

It was 3am the next morning. My mum was stable, so I left the hospital. An hour later my mum had called me to come back. She was bawling in pain. This was when I broke down. Seeing my mum in the state she was – I just let it all out.  It was like the nurse was taking the opportunity to ignore my mum when I wasn’t there. Hearing my mum tell me that she had to get out of bed to ask for help, and was told: “someone will be with you in a minute,” and left to wait again, was devastating for me. My mum usually has a crisis in her joints, so to have this one in her chest, was new for her and even scarier for us both.

I asked another nurse for help. It was a nurse beneath the previous one but I didn’t care, I just wanted help for my mum. The previous nurse tried to override me and told the second nurse to return to what she was doing. But, she could see how volatile the situation was so she stayed.

“The notes show that I got the medication”, the male nurse said.

“I’m fully aware that you have covered yourself but this is my mum’s life!”

His response exposed that he had a problem with me challenging.

“What do you know about sickle cell?” he said.

Coming into A&E, fighting for the medication and oxygen and being confronted with a poor attitude to care was a horrible experience. I don’t believe that sickle cell is taken seriously enough. All together my mum was given liquid paracetamol, diamorphine, tramadol & erythromycin – she was on a lot of medication, yet she could still feel the pain. That’s how serious it was. My mum had more than enough to deal with.

Even though the doctor dictated what medication needed to be given, the nurse was not prompt with it. Pain relief needs to be on time to avoid continuous and sudden bouts of pain. When my mum was moved to a new ward at around 8am, things did improve. The nurses were on time with the medication which made the pain more manageable.

My mum was in a serious crisis and she was poorly cared for. Being on a high dosage of medication for 10 days shows that she needed immediate attention but she didn’t get it. Had she received it upon arrival the serious nature of this crisis could have been avoided. Time is of the essence. This is something so essential that needs to change now.

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Thank you to Samantha and her daughter Leanne, for sharing their stories.

If you would like to volunteer the Sickle Cell Cause, please e-mail sicklecellcause@gmail.com

For more details about the support group, visit the website.

Sickle Cell Experience Part 2: Paramedics diagnosed my mother’s sickle crisis as a chest infection, and a nurse failed to do his job because of his ego

Hospitals are supposed to have a protocol in place for sickle cell patients especially with non-specialist nurses.  Two years after Samantha’s horrible experience at the National hospital, she and her daughter found that such protocols were still not being followed. This time it was at a different hospital.

My mum was alone at home when she had a sickle cell crisis in her chest. An ambulance was called and she was taken to a hospital, in Romford. I got the call and rushed to be by her side. When I got there I was surprised to find her in A&E. My mum had told the paramedics about her sickle cell but they decided she had a chest infection.

My mum told me that in the ambulance, paramedics had said: “… do you want to go to the hospital or not? Usually, we would just tell you to go to your GP. But because it’s 4pm on a Saturday afternoon, with no GP open we can take you to the hospital.”

The message that my mum was in a sickle cell crisis had not been received by anyone who came into first contact with my mum at A & E. In total, we waited for five hours before the first pain killing medication was given.

It was ridiculous.  Whilst waiting in A&E I repeatedly went to the desk asking: “what is happening? Why are we not being seen too?” My mum was worsening and her crisis escalated, and I called for help.

Finally a male doctor came and told us he will be with us in a minute. 30 minutes later the doctor returned and took my mum for an X-ray scan. I left at this point to collect some things for my mum. By the time I came back, my mum was completely in crisis. I don’t know where that doctor disappeared to. She was in severe pain. I was cradling her at this point.

Two hours passed. Another doctor came – he had just started his shift, and with a concerned look on his face, he asked: “What’s going on here?”

I said: “I need to speak to someone that knows about sickle cell,”

The doctor said: “I know a thing or two about sickle cell.”

I explained that my mum was in crisis and that we hadn’t been seen to. The doctor instructs a nurse to attend to my mum. “She needs oxygen and she needs pain relief NOW!”

My mum was moved to A & E major, put in a cubicle and left to wait again.  Fifteen minutes passed. There was a nurse outside our cubicle and I asked him: “Do you know who is supposed to be looking after my mum?”

He looked up and said “I am supposed to be looking after her.”

I said: “Well, we’ve been waiting a very long time. My mum is in crisis, we need help now.”

The nurse looked offended. “I take instructions from the doctor.”

Distressed, I said: “Ok that’s fine, could you get that instruction please? My mum really needs pain relief.”

Nurse: “Like I said, I take instructions from the doctor.”

I went to the desk and demanded for a doctor. The young man at the desk asked for my mother’s name. He told me that the computer system showed that my mum had been seen to. I was shocked. The young man apologised and assured me that my mum would be seen to.

45 minutes later, and the first doctor we met appeared again.  He came into our cubicle and said to mum: “How long have you had sickle cell for?” This is the doctor that was going to treat my mum and he asked her such a question. I was stunned. Sickle cell is genetic, a person is born with it.

Still, without pain relief, mum was in full blown crisis and the doctor continued to ask question after question. I was starting to think that he didn’t know what he was dealing with. He then instructed the same nurse I had previously spoken to, to attend to my mum. His response? “Well, I’ve got a lot of things to.”

I understood that he was busy, as all doctors and nurses are, but my mum did not need to hear him say that in front of her. I had to ask when the catheter (a medical device inserted into the body to treat diseases or perform a surgical procedure), was going to be put in.  When he did finally come, my mum asked him to place the needle because she knows where her good veins are. The nurse wouldn’t listen. Instead he insisted it went where he wanted it to go. He struggled to find a vein and did a bad job. My mum’s hand was inflamed like a balloon.  There was blood everywhere. It was a mess.

Instead of apologising he blamed the vein, gave up and aggressively said: “I’m going to get someone else to do this.” so we had to wait again. 30 mins later, my mum had her catheter put in but there was something wrong. It didn’t contain any fluid. It now took a new doctor to come and attach the pain relief, water and oxygen – all that should have been delivered to my mum upon arrival.

The new doctor authorised specific drugs to be given to my mum. She said: “When you need more, call by pressing the buzzer.” And she left.

The drugs didn’t kill the pain so 45 minutes later I called for the medication and the same nurse who messed up the catheter returned. He behaved like he didn’t want to bring the medication. He was annoyed and said: “You don’t need it.”

I told him “Yes she does and we got authorisation from the doctor” and he told us he’s not authorised to give it. I told him to call the doctor back. He went and came back, without the doctor, but with medication. He hadn’t bothered to read the notes which would have told him that the doctor had authorised the medication. The medication he came back with wasn’t what the doctor had prescribed – instead it was liquid Add to dictionary. It did the job but the nurse had a very poor attitude. It was as if he was thinking that we should be grateful for this favour he did for us, and it got worse.

To be continued…

Sickle Cell Experience: I thought I was going to die because medical staff didn’t know enough about sickle cell

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…