The Critical Care Follow up and Rehabilitation Team comprises a small group of critical care nurses and physiotherapists, interested in the physical and psychological ramifications of critical care, and helping patients achieve their optimum recovery. We are guided by the NICE guidance for rehabilitation after critical illness (NICE CG83, 2009) and have forged links with local and national networks, to make as big an impression on the aftereffects not only of the patient’s critical illness, but also of the medical care that saved their lives. Many of the interventions used are attributed to a multitude of problems known as PICS; Post Intensive Care Syndrome but because so much of the ITU care is necessary and many of the complications challenging to prevent if not unavoidable, more focus is now being placed on overcoming the consequences with post ITU rehabilitation.
Follow Up Care and Rehabilitation - Overview
Ward visits provide an opportunity to begin or build on relationships made in intensive care with patients and their relatives and make on-going clinical assessment of the patient’s rehabilitation needs and goals, and their risk of physical and non -physical consequences of critical illness. It is an opportunity to talk about their critical care experience, identify and normalize psychological symptoms such as vivid dreams, nightmares, flashbacks, hallucinations, anxiety and reduced confidence. Ward visits provide the chance to reassure, but also be realistic with patients and their loved ones regarding the likely physical effects like weakness, difficulty sleeping, eating, and breathing through to changes in hearing, taste, touch and smell. There is often obvious relief as they realise they are not alone in this myriad of problems, and nor are they slowly going mad as they time and time again feel they are. During the ward visit we introduce the idea of rehabilitation being available to them after they have gone home, and invite them to attend.
The time that the patients are on the ward is that for continuing liaison with the multidisciplinary team and as our team is comprised of physiotherapists and nurses we are truly collaborative anyway, but we regularly meet with dieticians and other specialities involved in our patient’s care, and make necessary referrals for example to psychiatry, SALT, OT, pharmacy and so on. As an extension of the Critical Care Outreach role the nursing component can contribute to complex issues like pain management and tracheostomy care.
Telephone Follow up
The team maintains contact with the majority of the patients by telephone providing a continuity of care. We are often told we are the only link to the hospital setting and that otherwise the patient’s feel ‘abandoned’. It appears to be common for the GPs not to recognize and understand what the patients have been through. We have been able to provide advice and enduring support.
Review at 2-3 months / Follow up clinic
A further contribution of rehabilitation after critical illness input is as NICE guidance suggests at 2-3 months after discharge from critical care, or at a time which suits the individual. They are invited to attend a one hour appointment at which they are assessed, and a problem solving plan made for any on-going issues. They are invited to attend the gym based rehabilitation class. If they do not need or want this, then countless other options have been made available from pursuing outpatient appointments, to case reviews, pain management advice, and discussion of limiting further care and do not resuscitate orders.
Review at 2-3 months / rehabilitation class
This is provided as an outpatient in the physiotherapy gym at Kent and Canterbury Hospital. Patients who attend are assured an initial assessment, and then a 6 week programme of individualised exercise aimed to regain their strength and confidence. As all the patients share their critical care experience a sense of camaraderie, encouragement and moral support exists.
Patient Support Group
At our monthly support group patients come back for on-going active help and encouragement, after the initial episode of care. They have the telephone number for the follow up and rehabilitation specialist nurse, and an open door policy to return if needed is fostered.
Communication and information
Step-down to a ward and then home after critical illness is a mixed blessing for many patients and their relatives. Whilst it is obvious progress, there is no longer the one-to-one care they become accustomed to, and with it the reliable updates on condition and reports on plans that make them feel well informed. Instead there are restrictions on visiting times and busy teams inevitably making them feel one of many. We have discovered communication is an important part of our role and have developed an information leaflet which succinctly advises what they might be experiencing and feeling and suggestions regarding seeing their GP or seeking counselling, and contact numbers for the intensive care units and the team’s mobile phone. The leaflets and the ICU steps booklet ‘Intensive Care A guide for patients and relatives’ are available within critical care and given out by us on the ward.
Assessment and Referrals
In line with NICE guidance, and alongside the South East Coast Operational Delivery Network the team perform a short clinical assessment which is documented by means of a sticker in the patient notes on admission to, and discharge from to Critical care, and on the ward to identify the patient’s risk of physical and non -physical consequences of critical illness. For those patients considered at risk, a comprehensive clinical assessment is made from which rehabilitation goals will be agreed with the multidisciplinary team, patient and family.
The patients are assessed sometimes in conjunction with the critical care outreach team, and as they stand down, thus providing continuousness.
Nutritional assessment is made with the Malnutrition Universal Screening Tool (MUST), and liaison with dieticians. Psychological review with the Hospital Anxiety and Depression Score (HADS) enables elements of the non-physical concerns to be highlighted. Functional measurement with the Chelsea Critical Care Physical Assessment Tool (CPAX) identifies specific rehabilitation goals. Cognitive appraisal with the Richmond Agitation Sedation Scale (RASS) and Confusional Assessment Method for the ICU (CAM-ICU) allows us to identify treatable causes or monitor delirium.
An ITU visit gives the patient the opportunity to debrief, see where they were and what happened to them. They have the opportunity to ask questions, and probe as deeply as they wish. For those with little or no memory of ITU it helps to fill the gap, and for those whose recall is hallucinatory, it gives a reality which seems to be less frightening. As high levels of anxiety and the potential for this to develop into post-traumatic stress has been associated with the recall of adverse memories from ITU, this is an important input for many of our patients.The theory is that these visits may help to identify issues, and provide an opportunity to put in place measures to reverse them before they escalate.
Diaries and Timelines
The intensive care unit teams aim to provide diaries for patients who are sedated for 3 days or longer to help them understand what has happened to them. The guidance is to write in everyday language about significant events like intubation, CT scans, and sitting out in a chair for the first time. Also recommended is a bit about what’s going on in the real world perhaps with regards to their hobbies like football results, or the weather. Families and visitors are encouraged to write in the diaries also. Researchers believe that having account of real events and facts during critical illness, even if they are unpleasant, can help patients, and provide protection from anxiety and the potential for developing posttraumatic stress. Timelines transcribed from patient notes act in a similar way to fill gaps and give an accurate account of the critical illness and interventions. Patients are invited to read their diaries with support of the follow up team if this is something they would like to include during the episode
Continuing advice, support, and safeguarding
Ongoing input has included researching over-granulation of tracheostomy sites, passing on travel insurance tips when quotes become too expensive, and taking international calls when patients holidaying have become unwell again. There have been incontinence referrals to facilitating advance directives and DNACPR orders. Follow up is unlimited too, offering input 4 years after intensive care to one patient facing another hospital admission, and 16 years after another! We have been asked to help with form filling when cognitive dysfunction leads to difficulty.
Generating consultant follow up where this is not in place is rather too commonly required. Making referrals where new or resulting problems are identified, includes to GPs, neuropsychology, charitable institutions and specialists like alcohol and substance abuse. We have supported patients through reviews which have resulted in complaint
Other forms of follow up
We are being increasingly inventive about ways to ensure that patients receive the follow up that suits them. Meeting for coffee in the hospital lobby creates an opportunity to give information and debrief. Others have been interviewed having their dialysis; the very reason they can’t attend the follow up clinic or class. Further, consultation has taken place alongside outpatients appointments or time in ambulatory care.
Education + Audit
Sharing what we do, and what we learn from our patients is an important part of the rehabilitation role, fulfilled to a therapy audience by our critical care physiotherapist, and to nursing and allied teams by the specialist nurse. Forums include formal lectures on, for example the staff nurse development courses, team meetings, the education hubs, and to wherever else we are invited which has ranged from network evenings to public forums on sepsis awareness.
The follow up and rehabilitation team carry out audit to examine and evaluate the service and interpret it’s performance and representation.