ICUsteps was established in 2005 and became a registered charity in 2006. Run by former intensive care patients and relatives we aim to improve the care and support available to patients recovering from critical illness during their long recovery.
Our aims are to:
- support patients and relatives affected by critical illness,
- promote recognition of the physical and psychological consequences of critical illness through education of the medical profession and the general public, and
- encourage research into treatment and the prevention of these issues.
We are the United Kingdom's only support group for people who have been affected by critical illness and have helped countless former patients, their relatives and medical staff from organisations around the world and in 2017 were presented with the Queen's Award for Voluntary Service.
Support and information
We began by providing direct support to recovering patients through drop-in meetings. At drop-in, recent patients can come and talk to other people who are further down the recovery journey, to help them realise that what the feel and think is normal for someone who'd been through critical care.
When we saw first-hand the difference this made to patient recovery, founder members Senior Sister Mo Peskett and ICU survivor Peter Gibb co-authored a paper entitled 'Developing and setting up a patient and relatives intensive care support group' which was published in the January 2009 edition of Nursing in Critical Care. From this, our network of local support groups began, now numbering over 20 groups across the United Kingdom and Ireland.
We also provide support through producing quality, patient-centered information resources.
In August 2007 we launched "Intensive Care - A guide for patients and relatives", an information booklet for patients and their relatives covering all stages of critical illness from admission through to rehabilitation which has become regarded as the gold standard for intensive care patient information by many critical care professionals.
We've added to this by translating our guide into numerous languages and extended our information resrouces by adding a series of topic focused information sheets and even an activity booklet for children visiting the ICU.
Recognition and awareness
We have been active in a number of areas as part of our aim to improve patient support and highlight that recovery from critical illness does not end on discharge from hospital. As well as holding regular drop-in sessions and encouraging other groups to form, we've participated in the development of NICE guidelines for acutely ill patients in hospital (CG50), critical illness rehabilitation (CG83) and Sepsis: recognition, assessment and early management (NG51).
We've presented to medical conferences across the United Kingdom, Europe and North America on the patient experience of critical illness and contributed articles to publications including the Journal of the Intensive Care Society and the British Medical Journal Blog.
Our work has also seen us collaborate with a wide range or organisations including NICE, NHS England, the Faculty of Intensive Care Medicine, the Intensive Care Society, the British Association of Critical Care Nurses, the National Outreach Forum, the British Psychological Society and many other. We are also proud to be members of the Critical Care Leadership Forum.
Supporting research into critical care has always been a mainstay of our work. Patient and public involvement is a key consideration of modern healthcare research and we've worked with the James Lind Alliance in helping identify research topics that matter to patients, rather than researchers. We help researchers in a number of ways, from participation on steering committees, reviewing study designs, writing or improving lay summary documents, or linking up researchers with volunteers looking to help.
Peter Gibb - Chief Executive
In 2003 I spend just over three weeks in critical care after suffering a mountain biking accident in which I sustained a brain haemorrhage, a broken neck, a broken back and a punctured lung. I was fortunate to have been treated in Milton Keynes Hospital and received an appointment at the follow-up clinic where I started to make sense of my delusional memories and participated in Mo Peskett's early meetings to explore possibilities of providing better support to ICU patients.
Following on from these meetings I became a co-founder of ICUsteps in 2005. As well as being a trustee, I've served as Treasurer, Secretary and since 2011 as Chief Executive.
I've represented ICUsteps as a patient representative on the guideline development group of two NICE clinical guidelines (CG50 - Acutely ill patients in hospital and CG83 - Rehabilitation after critical illness), on NHS England's Clinical Reference Group, on the National Outreach Forum and research steering committees.
To help evangelise the need for patient support after critical illness, I've spoken at over 60 events across the UK, Europe and North America and have contributed to a number of guidelines and publications.
Mo Peskett - Chair
I have over 31 years of Intensive Care Nursing experience and have recently stepped down from my post as Senior Sister within the Department of Critical Care at Milton Keynes University Hospital.
I co-founded ICUsteps Milton Keynes in 2005 and since then our charity has grown from strength to strength with over 20 ICUsteps groups in the country. Our passion to promote an awareness of critical illness for both patients and relatives has led to both national and international recognition.
At present I am the Chair of ICUsteps and represent the charity on the Critical Care Leadership Forum(CCLF) and the Critical Care National Nurses Network (CC3N).
Phil Smith - Treasurer
I was an intensive care patient in 2011 in Milton Keynes after a cardiac arrest spending 3 weeks in a coma under the care of Mo Peskett and her team. I attended ICUsteps Milton Keynes group as soon as I was physically able and it soon became obvious to me the vitally important role ICUsteps played for both mine and many ex patients mental rehabilitation. I joined the board in 2014 and for the last 3½ years I have been the Treasurer.
My day job has been working as a finance business partner within Policing and latterly the public sector project world.
Andrew Davis - Trustee
I am a retired banker and civil servant and spent time in intensive care in 2013. After discharge I was lucky to find the ICUsteps support group in Milton Keynes which helped my recovery. As there was no functioning support group locally in Bedford I later set up a new group with my wife (also an intensive care ex-patient) and three ITU staff which has been well supported. I have been a Trustee for twelve months and am assistant to the charity’s Information Manager.
Christina Jones - Research Manager
I retired from clinical work as a Nurse Consultant in Critical Care Follow-up in October 2013. Before my retirement I ran the counselling service for ICU patients as well as running the follow-up clinic, seeing patients on the wards and at home and running research projects. Just before I retired I helped set up the ICUsteps Cheshire and Mersey support group.
I became a trustee for ICUsteps in 2013 and then became the ICUsteps research manager in 2015. Since then I have tried to streamline the process that researchers use to get feedback on their research from ex-patients and relatives and started to look at own account projects.
Kate Regan - Trustee
I work as a consultant in critical care and anaesthesia, and I live and work in Brighton where I've been a consultant for nine years. My specialist interests are rehabilitation and follow up in critical care, and I run a multi-disciplinary rehabilitation ward round for our longer stay patients. I am also lead for simulation in our ICU, have set up a dedicated simulation teaching space and run courses that teach intensive care medicine to junior doctors.
I am part of the team that runs ICUsteps Brighton which has been running since 2013, and I continue to be inspired by the experiences of our patients and their relatives. As a trustee for ICUsteps I aim to provide medical input to the charity when requested, and also bring my experience of running our local group.
Tracey Rich - Trustee
Anthony Vollmer - Trustee
I was an intensive care patient in 2010 and became a trustee of ICUsteps in 2013. Like many others involved in the charity, I wanted to find a way to help others recover from critical illness through the difficult months and years after they leave ICU.
To this day, I get so much strength and perspective from talking to others who’ve been through ICU. I’ve done a few triathlons and long distance swims to raise money for ICUSteps, but also to prove to myself that I can be active again. In my day job I work in the telecoms industry.
Catherine White - Information Manager
I was an intensive care patient in 2006. I began volunteering with ICUsteps in 2007 because I knew that patients and relatives needed more support after ICU treatment. I’m the charity’s Information Manager and I develop ICU patient and relative information. I am also involved with the management of ICU research trials and I was part of the NICE Sepsis Guideline Development Group and Sepsis Quality Standards group.