Finally

[lesleyG1965]

To everyone thankyou you dont realise until you listen to other people who have been through critical illness that your not going nuts......its so refreshing.....xx

[Luckyone]

To people on the outside we may sound like we've lost the plot, but unless you experience the trauma we have all been through, they will never understand. My wife thought nothing was happening and I was just sleeping when in an induced coma, while her world was being turned upside down, it wasn't until I told her about the endless nightmares I was in and the fear people were trying to kill me, that she began to understand, but sadly other's say just "you survived, forget about it and move on with your life" if only it was that easy.

[barbsky]

I think it is true that if other people have been through exactly what you have - they will understand and not just comment 'move on, forget about it, you survived'.

Well done for surviving by the way !

[ICUsteps-Peter Partner ICUsteps]

You're so right, Lesley. Though thousands of people pass through critical illness every year, many of us face the aftermath believing it's just us. If these sort of things were normal, surely we'd have heard about it? Unlike other illness groups, critically ill patients are like the 'miscellaneous' category and as soon as we're no longer critically ill, we're discharged from ICU to anywhere in the hospital. When we get there, no one understands what we've been through or what lies ahead for us, and that can go for the staff as much as the other patients. We're unlikely to meet another ICU patient and this isolation from people like us just makes coping harder.

Through better information like our booklet "Intensive Care: a guide for patients and relatives" and encouraging support groups, there are strides being made to lessen this burden but until it's routine care for patients to be properly followed and supported through their rehabilitation and recovery after intensive care it will continue to be an unnecessary burden we have to carry.

[dadsdaughter]

I think patients on ITU are treated very badly. The ability to recognise pain and discomfort of ventilated patients is very poor, the pain relief is very poor. If pain relief is given, it is often fentanyl which is well known to cause nightmares and psychosis.

I think the way tubes are strapped is uncomfortable and inhumane. Watching mouth and lip cuts of a loved one is dreadful. Hearing an ITU sister say a loved one is 'coughing and eyes getting wet' and not able to see they are crying is appalling. The process of weaning adults off a ventilator has not been sorted. Half conscious weak people ae left in pain for days while ventilated with itu staff unable to even perceive the person is in pain. Tracheostomies are done too readily and taken too lightly. ITU staff are desensitised and unaware of how desensitised to humanity they are.

[dadsdaughter]

There is a lack of will to change current practice and to continue to inflict pain in the name of 'clinical care' has become acceptable.

The concept of delirium denies that patients are thirsty and in pain and get nightmares etc because they have not been treated well as human beings.