THE HEALTH FILE: Diaries fill in patients’ ‘missing’ critical days

South Wales Argus: Tracey Rich fills in a diary for a patient detailing what their treatment and care has been while they’ve been in a coma (5011534) Tracey Rich fills in a diary for a patient detailing what their treatment and care has been while they’ve been in a coma (5011534)

SCORES of critical care patients in Gwent have had the ‘missing’ period of their treatment recorded in diaries, through a project driven by the staff who look after them – and the practice is proving to be a powerful aid to psychological recovery.

It is easy to assume, for those of us who have not been through it, that having little or no memory of a stay in a critical care unit might be a good thing.

After all, few of us want to dwell on an episode of illness, let alone one of such seriousness that it requires a spell in one of these units.

But for many critical care patients, physical recovery is only part of the journey back to wellbeing.

Psychological problems can be experienced too, and many of these are linked to the time spent in a critical care environment, during which they may have been unconscious and (or) partially conscious.

Artificial lights, noise from monitors and other medical equipment, sleep deprivation, and delusions or hallucinations caused by some of the drugs necessary to patients’ treatments, can all trigger psychological disturbances.

And with no specific follow-up clinics available, patients can be left alone to deal with the psychological fall-out following discharge. Difficulties can also apply to families too, whether their loved one has survived or died.

The patient diaries initiative at the Royal Gwent Hospital’s critical care unit has been running since 2008, and is designed to help address the impact.

In 2009-10, 37 patient diaries were completed, and the project has since expanded, so in 2012-13 143 diaries were completed.

Feedback from patients and families has been very positive, as a recent presentation to Aneurin Bevan Health Board members showed, with comments from anonymous patients stressing how the filling in of their care details during ‘missing’ days, weeks and months has helped reassure them about how they were looked after, and to understand the extent of their illness and treatment.

“Lots of people have said to us that to have these missing days explained has been very helpful to them,” said Tracey Rich, nursing sister on the Royal Gwent’s critical care unit.

“Evidence increasingly shows that not remembering what has happened to you is in fact unhelpful, and not the other way around.

“Unless you have been in that situation, you have no idea what it is like, and people say they have felt very isolated afterwards – and it can be difficult for relatives and friends, who have painful memories of seeing a loved one so ill, to talk to them about it.

“Patients have talked about having very colourful dreams or very dark dreams, and experiences can vary greatly.

“They can have difficulty working out what was real and what might have been a dream or an hallucination.”

Patient diaries are started for critical care patients who require ventilation, and who are over 16 years old.

“Everyone included in their care contributes. It is a nurse-led project, but it is important that this a multi-disciplinary effort so as complete a picture of care as possible can be recorded,” said Mrs Rich.

“We have everyone from consultants, to physiotherapists and dieticians making entries, and families and friends are encouraged to write things in too.

“And we’ve tried, as staff, to get away from using too much medical terminology. The aim is to get away from the clinical and into the human, because it can be easy to disappear behind the jargon.

“Also, if a patient is subsequently transferred to Nevill Hall, the diary goes with them, so it remains a whole story rather than a part-story.”

The project involves the first known use of patient diaries in Wales, and is currently the subject of a PhD study by Cheryl Phillips, a senior lecturer in adult nursing at the University of South Wales. Her work, backed by the staff, is effectively the first Welsh research dedicated to examining the benefits of patient diaries, a subject that is generally under-researched.

There are moves afoot to start up a patient support group for people who have been in critical care at the Royal Gwent, based on feedback from patients and families when they have collected their diaries, which is usually four to six weeks after their discharge. This could be up and running by September.

Consideration is also being given to introducing a diary for people on lower levels of critical care, as there is evidence emerging that these patients also have post-discharge problems the diary project might help to address.

Comments (1)

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2:34am Tue 8 Apr 14

kateh1985 says...

Was involved in this when my dad was admitted into the ICU at the Royal Gwent last Novemeber. The staff where amazing during my families difficult time. Sadly my dad passed away 4 days after being admitted into hospital. We returned recently to collect dads diary. This was an upsetting experience but it brought us comfort reading everyones message they had written during dads stay.
As a Deputy ward Sister myself and having worked in the Royal Gwent for 6 years, nothing can prepare you for having a family member in ICU, and the circumstances inwhich my dad ended up in ICU, but i would like to say a big thank you to all of the staff, doctors and ward clerks for all of your support during the difficult times.
Was involved in this when my dad was admitted into the ICU at the Royal Gwent last Novemeber. The staff where amazing during my families difficult time. Sadly my dad passed away 4 days after being admitted into hospital. We returned recently to collect dads diary. This was an upsetting experience but it brought us comfort reading everyones message they had written during dads stay. As a Deputy ward Sister myself and having worked in the Royal Gwent for 6 years, nothing can prepare you for having a family member in ICU, and the circumstances inwhich my dad ended up in ICU, but i would like to say a big thank you to all of the staff, doctors and ward clerks for all of your support during the difficult times. kateh1985
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