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How can I find out more about what happened to me in Intensive Care?

How can I find out more about what happened in Intensive Care?

It depends on the type and level of information you’re looking for. Some people would rather put their illness behind them, others are comfortable with a basic understanding, and some prefer to have a detailed medical explanation. It’s completely up to you. You may find that the type of information you would like changes over time. Here are some things you can do that might help.

Ask your family and friends

Family members are a really important source of information. They are not allowed to visit, however, during the coronavirus outbreak, which may create gaps in yours (and their) understanding of what happened in Intensive Care. Many Units, however, will have worked hard to keep family members updated eg with daily or regular updates by phone, or "virtual visits" using a tablet or smartphone. You may have been able to speak with or "visit" eachother this way.

For some family members, though, asking about what happened may be a sensitive topic-they may still be upset by the experience and may not be ready to “relive” it. They may have been so upset during your time in Intensive Care that they can't remember all of what they were told. They may also be worried about upsetting you or they may worry that they’re unable to give you the answers you’re looking for e.g. in terms of explaining your illness or the medical treatments you received.How much they are able and comfortable to tell you may change over time, so try to be patient.

"I think when I first came home…that was all we seemed to talk about, what went on in Intensive Care." 

“It took him (brother) a long time to tell me about it. It's just coming out now….’cos I think he really got a fright. I have tried broaching the subject but he wasn’t really very keen on saying anything.  So I kind of left it. He could tell me in his own time.”

Diaries in Intensive Care

Diaries are a day-to-day account of what happened in Intensive Care. Some, but not every Unit uses them,as there is some evidence that they can help patients understand and come to terms with what's happened to them. Whilst family members are not allowed to visit, these will be written by the nursing staff. Some Units, however, will have been too busy to be able to provide them. 

Diaries are not for everyone, though,as some people prefer not to hear about their time in Intensive Care, and whether and when you choose to read it is completely up to you.

Your family might have kept their own diary for you, as a way of filling you in on everyday things that happened while you were in hospital e.g. family birthdays. It is completely up to the family what they want to include in the diary; young grandchildren, for example, can include pictures or cards..

Read your hospital discharge or GP letter

You should receive a copy of your discharge letter when you leave hospital. This should give a summary of your illness and the treatments you received whilst in Intensive Care. The letter is for your GP, so it may contain medical and technical terms that you don't understand. You may not be able to attend your medical practice in person after getting home, but you can ask your GP to explain things to you over the phone.

Ask your GP to explain things to you

He or she will receive a copy of your hospital discharge letter, but be aware that it can sometimes take several weeks to arrive. The letter can often be very medical or technical and may not help in answering all of your questions. Ask your GP to explain things to you. 

Having an illness that resulted in being admitted to Intensive Care is also quite uncommon, so your GP may not be fully aware of some of the physical, psychological and emotional problems that patients can sometimes have afterwards.

Sometimes patients themselves do not realise that some of the problems they have might be due to having spent time in Intensive Care. You will find out more about these common problems on this website.

Ask to see your medical notes

You are entitled to ask to see your medical notes. There will usually be a formal process to follow and, in some instances, a small fee involved.  It may be helpful to ask about this as part of any follow up with the Intensive Care staff.