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for several years. Implementing defined referral criteria them having no identified problems or unanswered ques-
and pathways can however be challenging particularly tions about the patient’s recovery, or being unable to
when a clinic is nurse-led. 146 While identification of refer- attend because of work commitments. Some relatives,
rals during a follow-up clinic reflect a potential unmet however, may not attend because of also adopting avoid-
need for these patients, one survey reported that 51% of ant strategies if they are experiencing posttraumatic stress
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clinics had no formal referral mechanisms. This referral symptomatology 156 or other health problems.
activity also reflects an additional function of the clinic in
coordinating patient care after hospital discharge. Clinic Evaluation
Coordination of care for these patients with complex Given the development of follow-up clinics and the
needs often includes multiple out-patient appointments nature of implementation, formal evaluation is difficult
and investigations at a time when they are least able to and this is reflected in the paucity of empirical evidence.
cope with this complexity. An additional patient benefit Anecdotally, nurses who deliver these clinics consider
of returning to a follow-up clinic is in supporting them them beneficial and patients seem to value them. Intui-
to negotiate their way through this complex care, tively it is a good idea for intensive care practitioners who
co-ordinate out-patient appointments, and to have have unique insights into patient experiences, to follow
someone who they know help them understand and their patients after discharge. Three approaches to
interpret the whole critical illness and recovery experi- follow-up clinic evaluation are evident: a service evalua-
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ence. This coordinating role was unforeseen in a recent tion, a qualitative study and a pragmatic, randomised
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study evaluating the effectiveness of a nurse-led clinic. 146 controlled trial; each providing different insights.
Twenty-five interviews were performed to evaluate one
The follow-up clinic can also be a vehicle for supporting service, with a number of important themes evident:
and evaluating a rehabilitation program. Rehabilitation patients valued easy access to the clinic, being well-treated
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in the form of a 6-week supported self-help manual with by staff and not having to wait long to be seen. Some
weekly telephone calls and completion of a diary dem- patients attended because they simply received the
onstrated an improvement in physical recovery at 8 weeks appointment, while others identified the need to have
and 6 months after intensive care discharge. questions answered, and wanted to discuss their distress-
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ing dreams and hallucinations. While there was an
As noted earlier, a unique element of a patient’s intensive
care experience is their limited recall of factual events but insightful account of the development and initial evalu-
a common experience of ‘nightmares’ and ‘hallucina- ation, no demonstrable patient benefits were evident.
tions’ that can be distressing both at the time and during Four main themes emerged from another study of 34
recovery. The benefits of having an opportunity to discuss patients: continuity of care; receiving information;
their experiences with intensive care staff should not be importance of expert reassurance and giving feedback to
underestimated. Patients value being able to speak to intensive care staff. Continuity of care enabled reas-
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‘experts’ about their experience, be given information surance to patients that their progress was being moni-
about what happened to them in ICU and also receive tored and any problems dealt with if referral to other
reassurances about the length of time that recovery will specialties was needed. Opinions varied about the
take and that their distressing memories are common. number of clinic appointments and this reflects indi-
Clinics also offer patients the opportunity to comment vidual perceptions and needs. Receiving information was
on their care both during and after intensive care. 152,153 invaluable because of the poor memory for factual events.
This is important not just for the patient but to inform General information about what had happened to them
care delivery. For ICUs who complete patient diaries, the in ICU was also important for gauging the length of time
follow-up clinic is often the place where these are intro- needed for recovery. Patients also found specific informa-
duced and discussed with the patient. 108,154 tion about tracheostomy scars and other specific areas
beneficial. While much of this information could be
Offering the patient an opportunity to visit the ICU is delivered by non-ICU staff, it was noted patients and
possible during the follow-up clinic appointment. As relatives were specifically reassured from experts familiar
noted earlier, the lack of factual memory of intensive care with their ICU experiences. Being informed that other
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often leaves patients with gaps that may be distressing. patients had similar experiences, particularly with prob-
Visiting the ICU may therefore be beneficial for some lems sleeping or the nightmares and hallucinations, was
patients particularly when they report odd perceptual also comforting to patients. Clinics also offered the
experiences, and enable them to make sense of some of patient the opportunity to give feedback to ICU staff,
these experiences. and also allowed patients and relatives to thank staff for
the care received.
A follow-up clinic also provides an important forum for
relatives. Relatives may have different needs to a patient, The PRaCTICaL study randomised eligible patients to a
and it is common to encourage relatives to attend with the control group of usual care (in-hospital review by a
patient. Relatives may not only have short- and long-term liaison nurse) or intervention group (a physical rehabili-
consequences for their emotional wellbeing and physical tation handbook and a nurse-led intensive care follow-up
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health, 155 but also be faced with supporting a patient who clinic 2–3 months after discharge and 6 months later).
has unrealistic expectations about their recovery. Clinic Referral pathways were developed with ‘fast-track’ access
attendance by relatives varies; 146 and may be related to to psychiatric or psychological services. There was no