“During our review of patients in the clinic we saw over and over again just how many of our patients experienced similar difficulties in trying to get their lives back to normal. A consistent theme was that patients simply did not know what to expect during the recovery process’’
Their objective was to provide an easily accessible information system, encompassing all aspects of the ‘critical care journey’ for the benefit of critical care patients, their relatives and members of staff involved in the treatment of critically unwell patients.
A range of topics are covered, such as what to expect and who you might meet within a critical care unit, stepping down to a ward, nightmares and dreams, hallucinations, stress and anxiety, memory loss and physical recovery.
The project took a year to develop from conception to completion. Many of the films feature patients’ own accounts of their experiences. This brings to life the various challenges they have had to face. In the case of David and Clive, whose story features in the film, the focus is on their experience in adapting to being discharged home.
David advised, “My recovery has gone on for the two years that I was told it would do. When you leave it’s a marathon not a sprint, just go with it, and take your time.”
David and Clive were keen to take part in the project to help other patients and their families as they recognised how much this type of information and resource would have been of benefit to them.
“We were keen to be able to demonstrate that even though illness can be severe and critical in nature, even though life can be in the balance, and both patient and loved ones can experience periods of utter despair, good outcomes can still happen.
The Critical Care Unit is an incredible clinical resource in terms of the team, the equipment and the team’s skills and expertise. Outcomes however also depend on the patient’s own inner resources. Partners, carers, family and friends will also need to find their strength and resolve.
We can’t tell people how to get through, or exactly what gets you through, but we can tell people that it is possible to get through what at the time seems an impossibly grave situation.”
Another theme explored is the issue of hallucinations. Hallucinations are unfortunately common for many survivors of critical illness. The information gateway includes patient accounts of their hallucinations together with information on the cause of these abnormal memories and specific advice on what to do if they do not settle in time. One patient’s describes their hallucination which involved playing guitar live on stage with rock star Tom Petty,
“Even though I was in hospital there was a strange thing going through my head that I had been very lucky to have been on stage with Tom Petty. Strangely I can remember those images better than I can almost anything else that happened at that time in hospital. Today I can still see those images in my head really vividly and I actually cherish them, even though they didn’t happen!”
Another patient story told within the collection of films helps to illustrate the difficulties around keeping children appropriately informed about a parent’s or close relative’s illness. Matt and Kate had a young child at the time when Matt became ill requiring a critical care admission.
Kate talks openly about the difficulty of holding things together at home, while spending long hours at Matt’s bedside. She advises others to take help from people, even if this isn’t something you are normally comfortable to do. She also gives useful advise on keeping family and friends up to date,
“At first I would return home after long days at the hospital and would spend 2 or 3 hours replying to messages to update everyone about Matt’s progress. It was exhausting and so in the end I nominated one family member and one friend in each friendship group that I could update and they would then filter the information through to others.”
Victoria, who was a patient on critical care, talks of the conflict of not ‘feeling like her son’s mum’ when she was ill because she couldn’t do the normal things a mum would do for a young child. However she later said,
“I realised that what was important was that I could still put my arms around him and let him know that everything will be ok.’ Her advice is to ‘Concentrate on what you can do for your children, not what you can’t.”
On reflection, David and Clive consider how the video resources would helped their journey,
“We think it would have reinforced that more hard work lies ahead once you get home. They videos would also have generated hope and reassurance that further improvement is possible. Most importantly – although Critical Care staff are exceptionally good at explaining the potential psychological effects of the critical care process, it is good to hear accounts from someone who has actually experienced these extra-sensory, mind-altering experiences – and also hear from people who have been able to overcome these psychological effects.”
The project was made possible through very generous funding from a number of our previous patients and their families, The Critical Care Unit Fund of Royal Cornwall Hospitals Charity, a Health Education England Innovation grant, The Duchy Hospital Charity, The Friends of Royal Cornwall Hospital and The Research and Development department at RCHT.
The information gateway can be accessed at: http://healthcarevideos.royalcornwall.nhs.uk/criticalcare