ICUsteps Conference 2013

Last November’s inaugural ICUsteps conference was a tremendous success with close to 200 people attending. Our speakers offering a wide and insightful perspective on rehabilitation following critical illness and ways to help patients recover from their experiences, and our patient and relative speakers provided compelling perspectives on why support is needed following critical illness.

As ICUsteps is run entirely by volunteers (former intensive care patients, relatives and healthcare professionals), organising our first conference was a big undertaking. We’re very pleased with how well it was received and encouraged that so many healthcare professionals understand the need for support and want to improve the patient experience. We’d like to say a big thank you to all who attended, speakers and delegates alike, for making the event such a success.

What the delegates said

“This whole day has been incredibly interesting, I am hoping to start ICU diaries on the ICU I work in; this has highlighted the importance and given me some info on how to do so.”
“I think I will look at the care of HDU patients differently, specifically needs of post ICU care, reminds me its not just ITU patient it’s a person with a life and personality.”
“Provided enthusiasm to promote the importance of follow up for patients, improving relationships with the ward staff to ensure continuity of care.”
“The patient experience will give me greater understanding of what the patient is going through - thank you”

We’re focusing on support group development in 2014 but watch out for future editions of Next Steps for announcements on our next conference.

Videos and slides from some of the presentations are available to view and download on our conference resources page.

Brain injury supplement to our intensive care guide

The latest supplement to our patient information library is Brain Injuries and Intensive Care, produced in collaboration with Headway, the brain injury charity. The supplement focuses on information that patients and relatives might find helpful during the intensive care stay, and complements the many other resources that Headway offers.

As with all of our supplements, it can be found on the website and is available for free download. For more information on Headway’s work, please visit the Headway website.

Help us to help your patients’ relatives…it’s as easy as putting up a poster!

Last month, we sent out a relatives’ room poster to intensive care units across the country. The purpose of the poster is to let relatives know they’re not alone and to signpost them to our website to find the information they need at the time they need it the most. On our website they’ll be able to find guidance to help them during the early days of their relative’s illness as well as factsheets on topics including delirium and brain injury. They’ll also be able to find support through reading accounts of critical illness from patients and relatives and participating in our online community.

We need your help to make sure these posters are displayed in your ICU relatives’ waiting room. If you haven’t seen the poster or need any additional copies, you can download the poster from our website, or contact us at and we can send you some.

Intensive care information milestone

A patient information milestone was reached in November last year with the shipping of our 100,000th copy of ‘Intensive Care: a guide for patients and relatives’. When the first copies of the booklet were printed in 2008, we knew they were needed but have been delighted to see how well they’ve been received by patients, relatives and healthcare professionals alike. Though we’ve frequently received emails from patients and relatives to tell us how helpful they’ve been it’s still touching to hear what a difference it’s made to people as such a difficult time.

“The books that were given to my family helped us all understand what to expect in the coming weeks, this was absolutely invaluable because there were so many things that happened to me as we went along that were a bit worrying until my daughter got out the 'bible' as she came to call it, all was explained and we found that most of what we were experiencing was normal and to be expected and that put our minds at rest right away and because of this we were able to cope so much better” - Isabel, Northampton

You can order the guide for your unit through our website.

‘Intensive care: a guide for patients and relatives’ translations

Since the last edition of Next Steps, our guide has been translated into two further languages. ‘Intensive Care: A guide for patients and relatives’ is now available in Danish and Swedish. The booklet is now available in fifteen languages and they are all free to download from our website.

ICU patient diary network

Intensive care patient diaries are a simple but valuable tool that can help patients come to terms with their critical illness experience.

The ICU diary network was established in 2012 with the aim of establishing an informal group for health care workers who are interested in using ICU diaries. The network was founded by a group of ICU nurses from different countries across Europe, Eva Akerman, Carl Bäckman, Ingrid Egerod, Christina Jones, Dirk Knück, Peter Nydahl and Sissel Storli.

The site contains an extensive list of literature about diaries and has information to help staff with implementation, such as guidelines. The diary network aims to co-ordinate information, projects and new studies and connect people who may need further help. There's also a map showing where diaries have been implemented and contact details of staff in each ICU.

Information for children

‘Medikidz explain the Intensive Care Unit’ is a cartoon style booklet aimed at children produced by Medikidz in collaboration with the Patient and Relatives Committee of the Intensive Care Society. Free copies are currently available for hospitals, thanks to funding by B.Braun.

For more information, email