Concern about ICU care

Hello, my partner has now been in ICU gfor 9 weeks, including a stay in Brompton hospital for 4 weeks. I discovered yesterday that the has had his fentanyl patches removed overnight, a pain relief he has relied on for over a decade - so that they can get him to sleep at night and awake at day. This is despite me telling them numerous times he hasn't had a normal sleep pattern for decades whilst he has been battling pain. The result has been two days of excruciating pain, return to delirium and constantly crying out Help, help and crying. A new fm doctor arrived yesterday and has decided that the pain relief was removed too quickly and they are now reintroducing it. And here is another problem, every week a new doctor arrives on scene, with new theories of what is happening or how too deal with it, disregarding what the previous consultant has been doing. And every week, on doctor changeover, we go back two steps. I am angry, frustrated, terrified at what all this is doing to my partner. He is terrified, in excruciating pain, and no one seems to be listening to me. And as for Doctors standing at the end of the bed talking over my partner as if he wasn't there, don't get me started. There is one doctor - non NHS - who is the only one who listens, explains the ins and outs and takes time to hold Les' hand. And if I say something I get told I am not being realistic. I'm the one holding his hand, reassuring him through his pain. I can see very well what is happening. Sorry for the ramble, I'm very angry.

[Copse77]

I am sorry to hear you and your partner are suffering in this way. You should ask for a meeting with the consultant in charge of Les’ s care. You can explain your knowledge of his care to date and your concerns and discuss how you would like things to change and understand what they believe is important about the medication and changes made. It may be a lack of communication and understanding that has led to this. I really hope things start to improve soon.

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It is very tough to be in the situation your in, i know because myself and my family have been in the same situation when my father was in ICU for 5 weeks. His partner, my stepmother visited him everyday (been together over 35 years) because she wanted to be with him, just to be there to hold his hand, talk to him about what has been going on in life and with the family but also to make sure that he was receiving the best care possible. If my stepmother was not happy about something, if she felt my father in pain or discomfort, she would ask the attending ICU nurse if they could do something to help him. Only if she was not happy with what they was doing would she then complain to the senior consultant who was in charge of him. Only a couple of times my stepmother had to step in and ask to meet him because she was not happy with some of my fathers care and the senior consultant dealt with it.

The NHS staff who treated and looked after my father were wonderful. They did their very best to get him well again. Yes there were some grumpy nurses and doctors but as long as they do not cause discomfort to their patient, their grumpiness can be looked over. Treat the staff as how you would like to be treated. Even if we were not happy with some of the things going on with my father, we was always polite and courteous to the staff, we would ask in a calm tone of voice and manner our displeasure at something and ask if it can be rectified. The doctors and nurses were only pleased to help. Only a couple of times was the senior consultant required. The staff do a very good job BUT at the end of the day, you still have to fight on your partners behalf to get the best care they can, never leave it entirely 100% to the hospital staff.

Kasmir, if you are not happy with some of the things the staff are doing which is causing pain and discomfort to your partner then ask to see the senior consultant who has been assigned to your partner. You know your partner better than they do, explain to them your concerns and worries about his pain medication. Ask questions like is the pain medication he has been taking for years going to have a negative reaction to the medications he is being given whilst in ICU. It's hard to stay emotionally and physically strong when your partner is in the way that he is but you have to be strong for him, he cannot ask for help so he needs you to do that for him. It's a tough hard path to walk but the benefits are worth it. 3 times we got the 'expect the call' whilst my father was in ICU but with the help and support of the hospital staff and the perseverance of my stepmother being their for my father everyday, she walked that tough path and as a result of it, has her husband back at home on the long road to recovery. She couldn't be more happier.