"Poor aftercare"

I have quite complex medical needs, two metal valves in my heart so I need to take blood thinners, Atrial Fibrillation, Bipolar Disorder, Health Anxiety, & Arthritis.

I was booked for a partial knee replacement at Sandwell Hospital. The consultant was fantastic - giving me excellent pre operative care. I saw cardiology and the anaesthetist team and they compiled a comprehensive plan for pre and post op, which gave instructions to me, and to the team looking after me post op. I religiously kept to the plan, coming off my blood thinners two days before the op, and injecting to anticoagulant myself so that I didn't have a clot form on my valve(s). He gave me a copy, and it made me feel safe.

When I was admitted, the ward staff got out my bag, and were going through it, inspecting my belongings, so much so that they were asking how many pairs of knickers I had with me. I told the sister that I felt uncomfortable with them doing this. Sister said, she will do it herself and show you. It was only a property check, but it felt so invasive. They did this to everyone who came in to the ward, shocking, asking people "what is this?" about personal items, even underwear.

The operation was a success. In recovery, I asked the anaesthetist at what time should I be started on my Heparin infusion. He told me 8pm. Back on the ward, 8pm came and went. It wasn't particularly busy on the ward that evening. At 9pm I called for assistance & asked when I was starting the heparin infusion. They asked me what I meant. I referred to my plan. The nurse asked me what plan - this panicked me a little. I showed them my plan, I had a paper copy with me.

At 10pm they came back with a drip, which I presumed to be my blood thinner. Time was getting on and I was so scared. I asked if it was my heparin infusion and they responded no, it was Tranexamic Acid. I asked what it did and was told it controlled the bleeding. I asked if it did this by thickening the blood and was told yes. It works by stopping blood clots from breaking up post surgery. I flatly refused it. I explained once more about the plan, and was told that they give this to everyone. They went away and at 10:25pm I eventually was hooked up to heparin. They said that they couldn't find it, which was why it took so long. If they had given the tranexamic acid to me, it could have had a serious detrimental effect on my health and could have caused me to have a massive stroke or even killed me.

My husband was calling the ward, it was ringing out but not ringing in the ward. No-one would speak with him over the phone.

I was in absolute agony. I pressed the call button. They would come, switch it off, say they will be back in a minute and never come back. I kept ringing but no-one came, except to switch off the buzzer. Some of the staff were really rude to me. I was scared, terrified and no-one was looking after me as I had anticipated. The pain was so severe; morphine has little effect on my pain, and there really needed to be alternatives available - for example, I usually find Tramadol or Oxycodone more effective, even though it is not as strong as morphine. They kept giving me more morphine, even though I kept telling them. Pre op, I had been given a leaflet telling me all about the service, and it was made clear that my pain would be managed effectively, and listed a number of pain management methods.

On day three, I was given PCA with morphine. They put the cannula into my arm. After about thirty minutes, my arm had blown up like a balloon and the bed was soaking wet. When I called for help, I was told  it was just going into my tissue, and it was okay. It was not okay. The bed was soaking wet and it wasn't a good experience to see that the staff looking after you seemed to have no idea how to put in a cannula. Once hooked up I was convinced that the machine wasn't working as I was getting no pain relief. The doctor who came on in the morning tried to see if I could be prescribed Oxycodone, which I know is effective. However the hospital had none. So I was stuck with being given morphine, even though it wasn't effective for me. I never sob or cry like I did that night.

The day staff were much better and seemed to know more. I dreaded the night because there were inexperienced staff who could not deal with complex needs (in my opinion). Once the pain was managed better, all could see that I was a different person. What is worrying is that not one member of the nursing team seemed to have seen a copy of my plan, put together by the professor in Cardiology. If I was not so nosey, then I would have most certainly have had severe setbacks. I don't know where along the line it had failed, but surely there should be a procedure in handing over the details of any patients with needs that are not the norm.

After I was discharged I was recovering well. The following week I went for my first physio appointment. I don't know what happened but after that I deteriorated and was unable to walk eventually. I believe that it was because she pulled my leg up when she was demonstrating an exercise, and that hurt.

There are serious failings in after care - staff need to be trained to deal with complex needs, because, let's face it, they take our lives into theirs.

My experience has been horrific. I do not want anyone else to go through this too.