Intensive care: Patients' experiences

ICU follow-up care

Many people who have been critically ill in the intensive care unit are invited to attend follow-up clinics, as out-patients, when they are recovering at home. They will be seen either by the ICU follow-up team or by the doctors specialising in their particular condition. The aims of ICU follow-up include providing support and guidance for those people who have had an extended stay in intensive care, often over a week. Medical, nursing and psychology support may be offered for up to a year after hospital discharge where appropriate. 

In the UK, there is no uniform ICU follow-up service and each hospital decides whether to have a follow-up clinic and how to run it, depending on time and resources. Many ICUs don't have follow-up clinics at all and, at present, these clinics are a relatively new though growing service. Those hospitals that do have ICU follow-up may invite patients to attend a clinic while they are on the general ward. Others might invite them over the phone when they are back home recovering. Some ICU follow-up teams will invite every patient who has had an extended ICU stay to at least one appointment. The length of time a patient is then followed up varies - some units follow up patients for up to a year, others offer one or two appointments. This depends on the needs of the patient as well as the hospital's resources. Some of the people we talked to had follow-up appointments, while others hadn't. Here people talk about their experiences of ICU follow-up. 

Many people who'd had ICU follow-up explained what had happened at the appointment and what doctors and nurses had asked them. Some said the visit had given them a better understanding of their illness because the doctor had gone through their notes and talked them through everything that had happened in intensive care. They learnt about their illness, treatments, changes and improvements, and test results. Many people valued the opportunity to ask questions and noted that the consultation was a good occasion to discuss what they'd remembered of their hospital experience, their dreams and hallucinations, physical and emotional recovery, any concerns, and to gain reassurance. Some also used it to discuss aspects of their care they'd been unhappy with. One man's partner had been disappointed with the hygiene and cleanliness both in ICU and on the ward. She discussed this with the follow-up team.

Many people were pleased with the opportunity while they were recovering at home to go back and talk to the doctors and nurses, often for reassurance. One woman, who'd had two follow-appointments so far, praised the doctor who'd looked after her and said he had even phoned her to ask how she was getting on. Some, who were given their ICU diary at the follow-up meeting, were grateful for it and the light it shed on their illness, as well as the messages of support from family and friends. Several wished they'd been given their ICU diary before the follow-up appointment so they could have read it before the meeting and been able to ask questions. Others also had tests to check on their progress when they came to follow-up.

Some people had only one ICU follow-up appointment after being discharged from the hospital and said it hadn't been enough. One man felt depressed when he was recovering at home and would have liked to discuss his feelings in much more depth. A woman who'd had two follow-up meetings with a doctor said he had reassured her that nightmares were common after intensive care but she'd had no real help with her emotional and psychological recovery. Like several others, both of these people felt that doctors and nurses in intensive care were extremely busy and wouldn't have time to talk to someone who no longer needed intensive care treatment. For others who were recovering well, one follow-up appointment was enough to discuss their concerns and they saw 'no point' in attending further. They were then completely discharged and any further concerns were dealt with through their GP.

National Institute for Health and Care Excellence (NICE) recommends that:
 
“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.
If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.
If your recovery is not progressing as quickly as you had hoped, your healthcare team is there to help you. Everyone’s experience is different and some people may need more time and help than others to recover.
If you have symptoms of anxiety, depression or post-traumatic stress, then you should be treated according to the recommendations outlined in the relevant NICE guidance. NICE has produced ‘Understanding NICE guidance’ about anxiety, depression and post-traumatic stress. For more information, see www.nice.org.uk/Guidance/CG/Published

-NICE CG83 (2009).

No ICU follow-up
Some people said they'd had no ICU follow-up, but all the necessary tests had been carried out by their GPs. Others, who had been followed-up elsewhere in the hospital, e.g. after surgery, were disappointed by the lack of ICU follow-up. Yet others, who'd had no surgery, were upset when they had no follow-up at all after being discharged from hospital, despite having been critically ill only months earlier.

Visiting ICU
Many intensive care professionals think it's good for people who've been in intensive care, because of an emergency illness or accident, to visit the ICU when they are physically and emotionally ready. People often remember very little about their ICU stay and this can worry them in the long-term. For some people, follow-up appointments were also a convenient time to visit the ICU with a nurse, this time as an out-patient rather than someone critically ill. Everyone is different; some people wanted to visit ICU, others didn't, and people were ready to visit at different stages of their recovery. Some visited during an ICU follow-up appointment, others after a follow-up appointment or tests elsewhere in the hospital. Some people went to the hospital especially to visit the ICU. Before visiting ICU, some felt nervous but were fine once they were there, one man saying it had little effect on him despite having been there for several days.

One man visited the ICU in which he'd been a patient three years earlier and recalled how the sound of an alarm took him back to the time he was seriously ill. Another said visiting ICU was one more way to make sense of all that had happened to him in hospital. A woman who visited ICU before leaving hospital felt, with hindsight, that she'd visited too soon; she would liked to have gone back later in her recovery.

When they visited ICU, many people said it was much smaller than they'd remembered or imagined it to be, one woman saying it also looked 'less scary' because the last time she'd been there she'd been critically ill and hallucinating. Some people thought they'd been moved around while they were in intensive care but then saw the actual bed they'd been in and learned that they'd been in it throughout their stay and hadn't been taken anywhere else. The feeling of being moved can be caused by the many different drugs people are given in intensive care, as well as the illness itself.

Some people said that, just as important as visiting ICU, was seeing the staff again and thanking them for all the care and support they'd given them during such a difficult time in their lives. Some said that nurses hadn't recognised them when they'd visited because they'd looked so different when they were ill, and nurses only knew who they were because they were with relatives. One woman said she felt emotional when she recognised the voice of a nurse who'd looked after her, and met her for the first time since she was well. Meeting the staff again also let the nurses see for themselves just how well they were doing. Some said that it was just as rewarding for the nurses to see them and that their care and support had paid off.

One man said he visited the ICU nurses after having tests elsewhere in the hospital because his family encouraged him to do so. With hindsight, he realised that it had been too soon for him and that he'd like to see the unit and staff again, this time when he's ready.

Last reviewed May 2015.

Last updated May 2015.

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