"My treatment following open heart surgery"

I had open heart surgery at Hammersmith Hospital. Apart from the overnight nurse in ICU, who was callous, the care was excellent. On ward A9 the care was very poor. In general there was a culture of not caring, or bothering too much by the core team of nurses, 2 in particular who worked together, supported by catering staff and some others, consequently patient outcomes were not optimised. In my case with life changing consequences. The neglect has resulted in a life transformed from living a full, active, purposeful life to one where some days are good, few are excellent and many have to be endured. Lots of medication, further interventions and time wasted housebound, unable to do anything much, nor move around safely. Huge cost to the NHS.

Below is a small illustration of aspects of care on Ward A9:

On admission the nurse in charge of pills got angry, had a rant about  double dosing and the dangerous predicament I had put them in. I'd followed pre med instructions and taken my meds after dinner and was handing the rest over. I'd not brought Gaviscon but everything else. The nurse decided I was self medicating as I paid for Gaviscon, eye drops and gel, so they were denied. The cataracts were stable and progressing very slowly pre op. Post op cataracts romped away, eyesight deteriorated massively.

Kind face greeted me when I woke up post op. They told me it was 10pm, the operation was over I was in ICU. Exactly the information and reassurance I needed. I fell asleep. When I woke I adjusted to the sounds and sensations; the bed moving, the arm squeezing then awareness of discomfort as your mouth is wide open, full of tubes, the blankets are so heavy, I was so hot. I tried to kick the blankets off my feet. My neck had gone stiff and any movement painful.

Communicating with the nurse beside me was difficult. They just didn't care and took their time to remove the tubes. They asked me several times. Apart from rolling my eyes I could not move to nod, I couldn't speak, I did my best to make an affirmative sound. Later the nurse let me have 3 sips of water, they kept nudging the straw to tell me to hurry. I couldn't do anything quickly. The half cup of water was put beside me. My fingers were swollen like fat sausages. I had no grip and it was hard to reach the cup. I was so very thirsty. Over time I worked it out and lurched forward and put my fingers inside the cup to drink the water. I didn't get any more water nor any help to drink it. No pain relief, no effort to make me comfortable, the nurse washed me with a cold cloth, I couldn't stop shivering. 

Wonderful, kind care followed that day and on the ICU ward. The nurse washed me with a warm cloth. They said the ward manager insisted on it - that kind face that greeted me perhaps.

My older sister phoned every day, in ICU the nurse brought me the phone. I felt great. She phoned my mobile in Ward A9, she could not believe how quickly I'd gone downhill. We didn't talk after that as the following morning my phone got stolen, rolled up with the bedding. My little sister was my one named visitor and she came every 2 or 3 days. I was so isolated.

I have never felt so frightened, been so helpless, nor been so hungry and thirsty as those 15 days on Ward A9. So many little cruelties on a daily basis. Catering unwilling to modify my food, even when the sodium level fell to dangerous levels and I could barely stay awake. I lost more than 10% of my body weight.

I had retained a lot of water so the hospital remedy was to restrict water to 800mls per day. The water tasted foul. No common sense approach to raise my legs to help shed the water. Once home, niece was my overnight carer for 5 nights - 3 cushions on the sofa and 3 pillows in bed, the water just fell away. My weight dropped from 55.8kg to 52kg - all water.

I was constipated. The hospital chose giant pills twice a day - that were really hard to swallow - and enemas. I had swallowing difficulties from day 1 so got little benefit from much of the medication I tried to swallow. Medical staff were slow to  modify their approach, then later crushed some dissolved paracetamol in my drinking water (refusing to change the cup) and injections in my stomach - often in the same bruise.

I had 5 enemas in 15 days. The enema only worked once!  They left me to wait far longer than the 15 mins so I was really distressed by the time the nurses came. I couldn't go. They gave me a shower. The hot water prompted my bowels to open. You can just imagine the volume, smell, mess. They were cross, I couldn't stop apologising. They compounded the humiliation by putting me in a nappy for the next 2 days. Now instead of my bare bottom visible in the flapping  open gown, everyone could view the nappy. 

There were some wonderful moments and staff who acted with humanity and care. 

The choices staff made on Ward A9 meant I had difficulty swallowing pills -  kept gagging, eating dry food - kept vomiting; staying awake when sodium levels were 113 - these things were my fault? 

The endocrine experts solved the sodium issue - dehydration, they talked to me normally, came back to tell me the outcome of their investigations, didn't blame me for sleeping, didn't tell me off. If only some of the other experts had done the same.