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 intensive care patient support charity. Our work supports those 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 they 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.
Research
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.
Trustees
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.
Olivia Fulton - Trustee
For the majority of my life I have had many admissions to critical care units due to a severe form of asthma and anaphylaxis often several times a year. During these admissions I have experienced various types of ventilation and treatments to try and control my breathing. I find being told I need to go to the critical care unit very traumatic as I have had past experiences. Over my many many admissions I was never offered any kind of follow up or support.
I was introduced to ICUsteps when giving a talk about patient and public involvement in research to some ex ICU patients. Since that introduction I have been heavily involved in ICUsteps support groups and have been able to understand my experiences so much better.
I used to work as a Renal Nurse (Home dialysis and Pre-dialysis education) but had to give this up due to ill health. I now hold various voluntary roles in Healthcare and Health Research with the main focus on the patient voice and ensuring the patient voice and experience is heard to improve research and health provision. I speak internationally about patient and public involvement in research and also my lived experience of chronic illness.
Peter Gibb - Co-founder and Trustee
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.
Christina Jones - Trustee and 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.
Pam Page - Trustee
I am a registered nurse with 40 years’ experience in both clinical critical care and critical care education. I am passionate about improving quality of life during and post critical illness for ICU survivors and their families.
My doctoral work (2012-2016) revealed that many ICU survivors have little recall of the factual events of their critical illness, but relatives have lived the whole event in a very real and ingraining manner. This can result in family members and survivors experiencing very different versions of the critical illness episode. As a Churchill Fellow (2019) I have been able to visit ICUs in the USA, Australia and New Zealand to witness best practice in ICU survivorship in support of critical illness survivorship here in the UK.
My day job is deputy director of NMC reviews, working on behalf of the Nursing and Midwifery Council; providing quality assurance to nursing and midwifery programmes across the UK.
Monica Trivedi - Trustee and Lead Clinician
I have been a Consultant in Intensive Care at Addenbrooke’s Hospital in Cambridge since 2010. I also lead the ICU Follow-Up services there so I have seen many of the physical and emotional problems that follow critical illness and cause a real impact on day to day life for months or years afterwards. We try to combat this with follow-up phone calls and clinics that involve Physiotherapists, Occupational Therapists, Dieticians and Psychologists to tailor care to individuals and their own goals.
I joined ICUsteps as Lead Clinician to try and improve recognition of these problems and support for patients in their rehab journey.