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).
Jo Latham - Secretary
A stay in ICU can be debilitating and life changing both physically and mentally. Towards the end of 2019 I found myself in intensive care after contracting H1N1 (swine flu) and Group A Strep. Following a short period in Salisbury Hospital, I was transferred to St Thomas’ Hospital and put on ECMO.
Due to covid and lockdowns into 2020, much of my recovery was done at home with virtual appointments. I have had an incredibly good recovery and have a desire to use my experience in a positive way to communicate with healthcare professionals in understanding a patients perspective, support research activities and help patients and relatives.
When not supporting ICUsteps, I run an engineering consultancy business, and also juggle family life with two young children. When I have any spare time I enjoy running, yoga, food and holidays - just not all at the same time!
Andrew Davis - Treasurer
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.
Stella Amor Fernandez - Trustee
Like many, the pandemic was life-changing for me…. It was Christmas Day 2020 when the ambulance had to take me away from my family; It was a traumatic experience to be told I would be put to sleep, yet may not awaken. I spent 6 weeks in a coma, on ECMO and a total of 5 months in ICU. I fought to survive, live, and make it home: and life would never be the same again. I wish I had found ICUsteps sooner and unfortunately spent the first year home feeling lost and scared.
Now I have reignited my purpose…. Despite living with a disability, on oxygen 24/7 and other challenges; I am blessed to be able to enjoy life with my beautiful husband, kids and fur-baby dogs.
It is also an honour to be a trustee with ICUsteps, ensuring that navigating the journey post ICU is supportive for all patients, their families and healthcare professionals.
After 30 years working in Human Resources, and Diversity and Inclusion in luxury hospitality, I now have my own company, "Reignite Purpose" specialising in Wellbeing and Inclusion through HR Suite of Services and Coaching. I want to ensure that others have the opportunity to reignite their purpose and go on to thrive in life and in work."
Alexander Bastin - Trustee
I spent over 3 weeks in an induced coma in intensive care in late 2020 following an elective operation to replace much of my aorta at the Royal Brompton Hospital, London. During the coma I was put on a ventilator (tracheostomy and ECMO), had pneumonia, developed atrial fibrillation (treated with an ablation) and experienced vivid, terrifying hallucinations.
Following discharge there was no support, other than one telephone conversation with cardiac rehab (which was no use) and bi-monthly telephone conversations with the RBH’s clinical psychologist (which were vital), because of the Covid pandemic.
I only learnt of ICUsteps two years later but immediately saw what a vital resource it is for patients and their families, as well as medical professionals. I have a particular interest in psychological support and educating employers about managing the return to work where possible.
My day job is that I am a judge specialising in ‘real property’ law and am otherwise kept busy by my (amazing) wife, four children, our dog and a passion for cycling.
Colette Grundy - Trustee
I have been a volunteer with Patients Relatives and Public Advisory Group, PRPAG for the Intensive Care Society since 2019 (Nov 2019). My family and I found ICUsteps to be an invaluable form of trusted and authoritative guidance when a family member became critically ill out of the blue. The guidance on Intensive care from ICUsteps is something I now recommend to other families. My parents and I found it was difficult to find trusted information at a time when our world was turned upside down as a result of critical illness of a family member that came out of nowhere. As a result of my experience I became a blood donor and the family are very grateful to the NHS hospital staff for their life saving work. I am dedicated to trying to provide help for other families and patients at the most difficult time. In January 2020 I presented my family story along with other former patients and relatives to the All Party Parliamentary Group APPG on Intensive Care to raise awareness of ICU issues.
In my day job I am a Fellow of the Royal Society of Chemistry with a PhD in Chemistry and works as a nuclear specialist. I enjoy long distance walking with my husband and am currently 300 miles along the Wales Coast Path, just another 600 miles to go!
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.
Sarah Park - Trustee
I experienced ICU in 2018 when my stepfather became critically ill, following surgical complications. After the initial shock of realising something had gone so terribly wrong, we spent 65 days visiting ICU with very little understanding of the process for critical illness and what the future might hold.
ICU was like no other hospital environment I had experienced. From the sights, the sounds and smells of the ICU, to the stark reality that your loved one might not survive; it felt like time slowed down completely while we waited for any whisper of good news. ICUsteps helped me to realise that the experiences we had were very ‘normal’ for critical care, and there is a community of individuals who have come together to share their experiences and to ensure they can be there for others who may experience similar circumstances. I am incredibly honoured to be able to support this fantastic organisation.
I have worked in the third sector for over 18 years. During my career, I spent 13 years working in UK emergency response and humanitarian assistance with British Red Cross, and more recently have been working in Marketing and Communications for a national police charity. I also volunteer with a national bereavement charity, supporting individuals experiencing grief and loss.
Pam Ramsay - Trustee
I'm an ICU nurse by background, and currently an academic and researcher at the University of Dundee. I helped set up ICUsteps Edinburgh in 2015 and have helped initiate several new ICUsteps groups across Scotland, supported by Scottish Government funding.
My PhD (2010) explored “quality of life” in long-stay ICU patients, and I have published widely on patients’ experiences of ICU, recovery and rehabilitation. My research is mainly interview-based and I use this approach to help develop and evaluate strategies, resources and hospital services to help improve patients’ recovery. I developed and lead the criticalcarerecovery.com website.
Sian Saha - Trustee
I have been working in Intensive Care for 18 years, firstly as a nurse and more recently as a research nurse.
As part of the ICU follow-up service at King’s College Hospital, I set up an online ICU patient support group, which I continue to run.
I am currently working at King’s College London University, researching family caregiver stress and how we can support families who care for their relatives at home. I am particularly passionate about improving support for ICU families, who care for their relative when they have been discharged home after being on ICU.
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.