In this edition

ICUsteps patient diary app

The ICUsteps app has been available on iOS and Android devices for a few years now and is in need of an update, but as well as continuing to provide crucial patient information we’re taking the opportunity to evolve the application to provide a new level of functionality.

Smartphones and tablets have quickly become commonplace in all aspects of daily life and their presence in the ICU is no different. These ubiquitous devices come with the built-in ability to record notes, locations, photographs, audio recordings; everything you could need for a patient diary. Of course, this is only a small part of making a patient diary app. Diaries provide patients with a framework of things that happened for the time they cannot remember; helping to explain to them later on what they’ve been. They help fill in the blanks in our memory and can even assist in making sense of delusional memories.

Our aim with the new ICUsteps app is to give a structure to recording diary entries, providing prompts of what relatives and healthcare professionals can record each day. While much of the process of recording and structuring diary entries will be fairly simple, the harder work will come in ensuring the app contains safeguards that protect the patient’s privacy and dignity but that doesn’t sell patients short by avoiding the difficult questions. Photographs and audio recordings are areas of particular consideration, but if these aren’t recorded at the time they can never be recreated, leaving the patient as the only member of their family that doesn’t know how they looked.

As difficult as it may be to consider the app requirements around recording of entries, the later stage of how the patient can then access their diary retrospectively will also provide its own challenges. Diaries, and particularly multimedia elements, can be hugely helpful to patients but they are also very powerful, so care needs to be taken to try and ensure they’re presented in the right way and don’t overwhelm or upset the patient unduly.

We’d like to hear from you

The key challenge in developing the app will be ensuring that sufficient safeguards are put in place but without compromising the potential benefits to patients and relatives, and of course ensuring that hospitals and trusts will support and encourage use of the application.

This is where the involvement of healthcare professionals in developing the app will be crucial. We’ll already be consulting with interested parties, including the ICU Diary Network but if you’re interested in helping with the project we’d like to hear from you. You can register your interest using the form below and we’ll be in touch as the project develops with opportunities to become involved.

Register your interest for diary app updates

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New research into muscle wasting in critical illness

Those of us who have been critically ill can bear witness to the serious impact of muscle wasting. It means that patients can come out of intensive care barely able to walk and it can be a very long process, taking many months, to regain normal fitness. This has a big implication on how independent patients can be once they leave hospital, and this can also have a psychological impact.

We have long been a supporter of Dr Zudin Puthucheary’s important research into this topic. Zudin was a NIHR Fellow in Respiratory and Critical Care and is about to take a post as a Clinical Research Consultant at University College London Hospitals. Zudin has produced a video for patients and relatives to explain what happens to muscles during critical illness. He told us:

Muscle wasting in critical illness is recognized as the greatest contributor to disability in people who survive critical illness. Despite the huge interest in this field in the last decade, the recognition that this is a public health issue and the growth of support groups, such as ICUsteps, we have only just begun to understand why and how muscles waste away in critical illness. This is clearly really important- no less than 4 four high quality trials have failed to demonstrate that exercise can help regain exercise capacity, and so not only is our current understanding not good enough, we have no methods for prevention or cure.

He wants to raise awareness among healthcare professionals too about the impact that muscle wasting can have and also engage those who have an interest, such as doctors, nurses, physiotherapists, nutritionists, psychologists as well as intensive care patients and their relatives. Zudin says:

We are looking to go forward with a new interventional clinical trial next year, hopefully having learnt much from our own research and that of others. If you have questions, or would like to do some research in this field, please do email me.

NCEPOD Sepsis enquiry findings soon to be available

On the 24 November 2015, NCEPOD (National Confidential Enquiry into Patient Outcome and Death) are launching their sepsis study report. This review was into the care received by patients with sepsis or suspected sepsis, and they looked at the records from 551 patients across the country who had treatment for sepsis in May this year. Catherine White, an ICUsteps trustee and former sepsis patient, was part of the expert panel who oversaw this study. She said:

I've been pleased to be involved as the patient representative on this project. Sepsis is an illness which can be easy to miss in its early stages, but it can progress very quickly, which is why 35% of patients do not survive severe sepsis. It is therefore vital that appropriate and timely treatment is given and that all sepsis patients receive the best care possible. The recommendations from this report are meaningful because they are based on real life current practice.”

If you would like to attend the launch in London, details and booking information are available on the NCEPOD event page. The report will be on the NCEPOD website from 24th November 2015.

ICUsteps making a difference

You may be familiar with ICUsteps from our work in producing patient information and establishing support groups, but did you know that ICUsteps represent intensive care patients and relatives in many other ways? Our Trustees are involved at board level with the:

  • National Outreach Forum
  • ICS patient and relative committee
  • NHS England Adult Critical Care Clinical Reference Group
  • Critical Care Leadership Forum
  • steering groups of numerous research trials

We've been involved in the production of three NICE clinical guidelines, recently commented on and endorsed the Guidelines for the Provision of Intensive Care Services (GPICS), NCEPOD Sepsis Enquiry and we also undertake many speaking engagements in the UK and Europe.

We believe that great things can come from such partnerships and understand the importance of adding the patient voice in support of the efforts of healthcare professionals to improve critical care treatment and outcomes.

From Milton Keynes to Denmark…sharing the benefits of patient support

In September, we were delighted to host seven ICU nurses from Aarhus University Hospital, Aarhus, Denmark. The group consisted of four critical care nurses and three Clinical Nurse Specialists all with an interest in post ICU recovery. They visited the Department of Critical Care at Milton Keynes, where ICUsteps originally began, to get a flavour of how intensive care functions in a UK district general hospital. They had a really enlightening discussion with staff from the unit, sharing best practice and thought provoking ideas.

Our Danish visitors then went onto meet with Mo Peskett and Peter Gibb to discuss the development and setting up of a support group. At present they are establishing something similar to our support group 'drop in' sessions that they call an ICU café, and wanted to see for themselves how we have established support groups in this country. The group then had an enjoyable evening, meeting and chatting with former intensive care patients and relatives from three ICUsteps groups; Milton Keynes, Northampton and Bedford. They said that they had found the whole visit inspiring and we look forward to meeting again.

We get regular requests from the UK and from Europe to see a support group in action, and to advise about how to run a support group to help patients and relatives after intensive care treatment. We’ve seen over the years the difference support groups can make to patient recovery but it’s still a pleasure to know others joining us feel the same. A patient member of one of our newest groups, ICUsteps Tees, was inspired to put the support group experience into a poem.

Ode to ICUsteps - To all who established ICUsteps groups

Empathy is a complex word
Not understood by all until it’s been learnt
Don’t judge me until you’ve walked my path
Gradients so severe it’s off the graph

Positivity from others helps deal with the pain
And gives us the strength to face the strain
It’s impossible to imagine unless you’ve been there
At ICUsteps there’s the opportunity to share

Stories of survival fear and dread
And the challenging times that lie ahead
Patients, Carers, Relatives and Medics can see
There is a way forward for people like me

We gain inner strength when experiences we share
A friendly face and someone who cares
So if you’ve escaped from an ICU bed
We’d love to meet you and help on your journey ahead

Diane Bousfield
September 2015

You can find our more on our support group page.

Making a splash!

Anthony completes the Dart 10K

We were all very impressed when ICUsteps Trustee, Anthony Vollmer, who was in intensive care with pneumonia in 2010, undertook the Blenheim Palace Triathlon with four friends in 2013, and we wouldn’t have blamed him if he’d felt that enough was enough.

In September, however, he decided to top this by entering the Dart 10k open water swim. Not only did he finish an amazing 80th out of over 600 swimmers, but also raised £4500 for ICUsteps.

Thank you Anthony!

Conference round up

BACCN Conference

The British Association of Critical Care Nurses (BACCN) celebrated its 30th anniversary this year with a conference titled ‘Delivering High Quality and Safe Critical Care Services: A Global ambition’. The conference was a hugely inspirational, innovative and lively celebration with the largest number of delegates and speakers at a BACCN conference to date. Over 450 nurses and colleagues from around the world descended upon the Park Plaza Riverbank in the London Borough of Lambeth.

Our thanks go to the BACCN for providing a stand for us at their conference which was manned over the two days of the September event by Mo Peskett and Peter Gibb. Mo said:

The conference was excellent. We were able to talk to delegates and promote the need for patient and relative support and it was an opportunity to network and share best practice with other likeminded health care professionals. For me as always it was inspiring and thought provoking.

ACPRC Conference

ICUsteps Secretary Bill Ridley and his wife Shirley were asked to speak at the Association of Chartered Physiotherapist in Respiratory Care (ACPRC) conference recently. Bill was in intensive care for three months in 2010 with pneumonia, severe sepsis, and ARDS. In the talk, Bill and Shirley spoke about the challenges they faced while he was in hospital, and during his recovery. Bill said:

Although it was a difficult subject to talk about, we wanted to give the delegates an insight into the physical and psychological difficulties faced by both patients and relatives, not only while in ICU but also long after discharge.

The talk was very well received with many positive comments from the delegates. To find out more about their work, visit the ACPRC website.

Research update

We are very pleased to announce that Dr Christina Jones has agreed to be our new Research Manager. Christina has been an ICUsteps trustee since 2012, and we are very grateful for her substantial experience in providing research that is meaningful for patients and relatives.

If you would like help with your research, please complete our short application form so we can find out about your project and how we can provide patient and relative perspective. Email for more information.