‘Stepping down’ from Critical Care and into freefall: a patient’s perspective

Catherine White

What happens to your patients once they leave ICU?

What may be the end of the story for critical care healthcare professionals is usually the beginning of a long, difficult and sometimes very lonely journey for patients and their relatives.

What might a patient say were the most distressing aspects about their critical illness?

The delirium and confusion, undergoing invasive and unpleasant medical interventions, moving to a ward where no-one understands what you’ve just been through and then going home without support from healthcare professionals.

What might patients have to face after a critical illness?

Patients can be traumatised after a critical illness. They may need to relearn things they took for granted before their illness  – how to breathe again, how to walk, how to eat again, how to manage a myriad of unexpected after effects, from extreme fatigue to hair loss – and overall where to start trying to reclaim their life after a catastrophic and probably unexpected event.

What care is provided for ICU patients once they leave ICU and whose job is it to provide it? 

Sometimes no care and no-one’s responsibility.

My name is Catherine and I’m a former ICU patient.  What I’ve outlined above was my experience 12 years ago – but has the situation changed for patients in the last decade? For some, yes.  For others, no.  We are nowhere near providing a consistent and ‘fit for purpose’ aftercare for all critical care patients across the UK.  NICE CG83 guideline ‘Rehabilitation after critical illness in adults’ was published in 2009 and set out an expectation for critical care rehabilitation for ‘at risk’ patients.  Accompanying quality standards were published in 2017. While it’s been helpful to raise the profile of rehabilitation, my perception is that uptake has been patchy. This may be due to financial constraints.  Yet it is worth reflecting how much money is spent saving people’s lives in ICU and then comparing it to how much money is invested helping patients recover and reclaim those lives.

The gold standard is a Critical Care follow up service – a service dedicated to ensuring patient’s physical and emotional wellbeing after critical illness. Staff will contact patients, meet with them, discuss their needs and difficulties, invite them to come back to the unit (to help make sense of confused and distressing memories) and signpost to services that can help them.  You see, it’s not that the experiences of critical care patients are incredibly complex – there are often common themes running through many patient experiences – but when you are in the general ward and the community, there can be very little understanding from healthcare professionals about what you are facing.  Family and friends can feel at a loss to help. A critical care follow-up team know – and that as a patient, can feel like a lifeline.

I became a volunteer with the charity ICUsteps in 2007, motivated by first-hand experience understanding of the suffering caused by lack of information and support after a critical illness.  We are a small team of former patients, relatives and healthcare professionals and we are all volunteers, we have no paid staff.  Our charity’s 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.

The charity was established in 2005 by Mo Peskett, a Critical Care sister, and Peter Gibb, a former ICU patient.  They recognised the consequences of the lack of support offered to patients and families and set up a support group in Milton Keynes.  From this small beginning, ICUsteps has become a national charity which also reaches people around the world.

So what do we offer?

  • Affiliated ICUsteps patient and relative support groups – we have a network of 24 across the UK and help healthcare professionals establish new groups.
  • Good quality patient and relative information.  Our guide ‘Intensive Care: a guide for patients and relatives’ is the gold standard of ICU information and we have distributed 243,000 copies across the UK.  Our guide is available online translated into 16 languages.
  • We have an innovative children’s information and activity book (for children visiting relatives in ICU) and patient and relative information sheets.
  • An online community for patients and relatives through HealthUnlocked
  • Helping the patient and relative voice to be heard at a strategic level.  We have collaborated with many organisations including NICE, FICM, National Outreach Forum, and with many research projects.
  • Website including patient information and patient and relative experiences.
  • Free posters for ICU relative rooms promoting our work.

I have been privileged to meet many critical care healthcare professionals in the course of my work with ICUsteps. I have the upmost respect for the demanding, challenging and complex nature of working in an Intensive Care Unit.  It appears to me that critical care medicine is one of few disciplines that tries to support families of patients (much healthcare provision is focused only on the patient) and this requires a very different skill set to that needed for patient care.  So thank you for all you do and we recognise that the the day/night job for critical care healthcare professionals is demanding enough.  But my plea is that you don’t forget that once the doors of the ICU are closed on patients and relatives and they are discharged from your care, this this may be the very beginning of a long and difficult journey for them.  It can take up to 18 months to recover, sometimes longer. Sometimes life is never the same again.

So, as a starting point, perhaps you could reflect on these questions:

1            Do you provide good quality information about critical care and recovery for your patients and their families?

2            What local services are on offer for patients and relatives after critical illness? Do these encompass physical and psychological support? How do they know how to access them?

3            Do you ask patients and relatives their experiences of care in your intensive care unit? Do you ask what the care has been like during their rehabilitation? Do you learn from and make changes based on this feedback?

Intensive care medicine has saved the lives of many patients.  Returning patients to lives that they value afterwards must also to be part of the remit.

Catherine White is a volunteer Information Manager and a Trustee for ICUsteps. www.icusteps.org