Sources of support after coming out of hospital

On this page people who have been critically ill with Covid and their family members talk about:

  • professional support patients received after discharge
  • support they received from family members and friends after discharge

See for family members’ experiences of sources of support ‘Sources of support for family members’.

Professional support after discharge

Post-ICU (Intensive Care Unit) support during the pandemic was compromised.

When are patients discharged from intensive care and how do intensive care staff stay involved in their aftercare?

Mike phoned the GP and physio when there was no follow-up support for Veronica for weeks after her hospital discharge.

Health care services faced at least two issues. Firstly, as Covid emerged in early 2020, there were high levels of uncertainty, and sometimes disagreement, about the way the virus spread, and the most effective ways to prevent and treat infections. Little was known about the numerous effects that a Covid infection can have, and what the needs (particularly long-term needs) of people who had been critically ill with Covid and their family members would be. Health services did not initially know what kind of follow-up and support patients and family members would need, and who would be best equipped and responsible to provide this care.

Secondly, the sheer number of Covid patients overwhelmed the very support structures that people rely on for help. Many patients faced ongoing side-effects of their Covid infection and ICU admission, including physical weakness that took a long time to improve, and a degree of permanent lung damage and cognitive deficits much like other ICU survivors. Hospitals cancelled and delayed the delivery of routine care. It was difficult to provide timely care and support amidst ongoing public health restrictions, including lockdowns and social distancing, and with a significant number of staff of community and outpatient services were redeployed to support acute service delivery.

A Covid infection can have numerous effects, that multidisciplinary health care teams and scientists are still learning about as people report their experiences. Patients who have been in ICU with Covid are likely to have long-term care needs related to muscle weakness and psychological and cognitive issues. Clinical staff expect that Covid patients will also have issues with their lung and kidney function, and with their shoulders due to proning, and cognitive issues due to the high incidence of delirium.* It is also clear that many patients who were awake in ICU struggle with the effects of having witnessed suffering and deaths of other patients (see also ‘Uncertain survival’).

Experiences with professional support after discharge

Many people we spoke to had some support from a multidisciplinary range of health care professionals after they came home from hospital; including follow-up from ICU and other medical specialties, district nurses, GPs, physiotherapists and speech and language therapists.

Johnny had online support from the neuro rehabilitation specialist.

It is clear that the extent to which people could access support after their discharge from critical care with Covid varied greatly (although these differences between areas of service delivery are not necessarily new). Some patients did not receive the follow-up care they felt they needed, many family members felt alone and helpless in the absence of formal support.

Stephanie felt that the medical follow-up had been poor, and that this resulted in unnecessary pain and discomfort for Peter.

In the clip above, Stephanie, whose husband Peter was in hospital for 4 months in the autumn of 2020 said: “I just felt like as soon as [Peter] was discharged from hospital they just dropped him and forgot about him.” Like many others, Peter understood the pressures the health system was under. Responding to Stephanie’s observation he said: “I think you’ve got to look at the whole picture … if these departments normally see about ten patients a day they might have had a waiting list of a 100 a day and I think you’ve gotta look at it and think you can’t get to everyone and somebody is gonna slip through the net [like] I did … But that was [in the] second wave, and it was like it was like thousands were dying a day and the hospital was absolutely rammed with patients with Covid… and, you know, so many people come [and there’s only] so many NHS workers to look after those people.” However, understanding why care was compromised, like Peter did, did not take away from the reality that many were left without appropriate support once they got home. While some family members were able to advocate and/or paid for additional help on a loved one’s behalf, not every patient could rely on somebody to do this for them.

Some patients who could have benefited from more support found it difficult to ask for help. People we spoke to were often grateful to be alive at all and they realised how busy health care providers were. For some this seemed to make having compassion for themselves harder.

Carl had support from various health care professionals. Initially, he was mostly happy to be alive. When one symptom alleviated, he could tend to another.

ICU follow-up appointments

Many of the people we spoke to had ICU follow-up appointments, which generally took the form of online meetings, during which one clinician or a multidisciplinary team of clinicians talked the patient (and, if relevant, those close to them) through what had happened to them, and answered any questions they may have. For some, this meeting came several weeks or even months after their discharge, possibly because follow-up services across the country were short on staff during the first wave, and therefore temporarily suspended. Follow-up meetings were generally greatly appreciated by patients, as was the offer to call if there were any questions or queries.

District nurses, occupational health practitioners and physiotherapists

District nurses, occupational health practitioners and physiotherapists came to people’s homes to support them in their recovery. For specific concerns and symptoms, some were referred to (online) check-ups with specialists, including speech therapists, neuro rehabilitation specialists, a respiratory specialist, a kidney specialist (nephrologist), blood specialist (haematologists) or heart specialist (cardiologist). As Covid and long Covid are still relatively new conditions, when consulted, these specialists did not always have all the answers.

General practitioners (GPs)

General Practitioners (GPs) were under immense pressure due to the effects of the Covid pandemic and later also the delivery of the vaccination programme. Some were felt to be helpful but others did not always have the knowledge required to help. GPs should be informed when one of their patients is discharged from hospital. Some recommended approaching the GP straightaway if symptoms arose or continued, rather than wait for the GP to contact them. Some GPs proactively got in touch with their patients. Patients appreciated help with their ongoing breathlessness and had an eye for how the patient and family members were doing in terms of their mental health.

Support groups

Support groups were available to only a few people we spoke to. They were held online. Interestingly, because these were online, they now also provided access to ICU patients who previously had been unable to attend due to physical or geographical barriers.

Other source of support

Those that had suffered other conditions in addition to Covid could benefit from the use of existing care infrastructures not available to others. It has been argued that support structures such as the one available for stroke patients should be replicated for Covid patients and family members.*

Had the stroke charity not offered any physical recovery to Steven, he would have waited 9 or 10 months for it. He felt connected through online chats with friends abroad.

Despite the many challenges that Covid posed for the provision of health services, many people we spoke to felt supported. Each person for whom this is the case is a major achievement of the pressured healthcare services.

Deborah and her family felt well supported by their GP, district nurses and a physiotherapist after Shaun came home. Deborah also finds it helpful that more is known now about Covid, as people thinking it is like the flu was painful.

Informal support after discharge

Family members were key to informal support for many of the people we spoke to (see also ‘First weeks at home’, ‘Doing the work of recovery’ and ‘Coming to terms with what happened and long term effects’).

After discharge from hospital, family members became carers. Many provided care and support with everyday tasks, such as showering, dressing, shopping, cooking, cleaning and praying (see also ‘First weeks at home’). Outside support was often not readily available. This meant that those who lived with the person who just came out of hospital took up more care than they would have needed outside of the pandemic.

For some family members, “being able to finally do something” contributed to their own process of recovery. For others, tensions emerged from this new carer role in the absence of guidance on how best to manage this transition. Because he had suffered a stroke whilst in hospital with Covid, Steven’s family could make use of their longstanding support group to access support. But he felt there was a lack of advice: “Government communications [are] just telling you how not to get Covid, it doesn’t tell you what to do if your husband has had Covid and he’s come home and he’s trying to get over it.”

Steven’s family could access support through a stroke charity, but he worries about the tensions that arise from the changes brought about by his stroke.

Some family members could provide additional help if they had medical training, or could share knowledge about how they dealt with health conditions of their own. This was particularly important for patients who received little or no professional help.

Andrew’s mother-in-law is a sports physio. She helped him go through various breathing exercises when no physiotherapy was available to him.

Some family members could help each other because they had been through a similar experience. This was the case for Royston and his two grandsons.

Royston and two of his grandsons had all been in hospital; after coming home, they talked about their experiences and supported each other in going back to work.

The support from close friends, neighbours and sometimes strangers was also very important for people after returning home from hospital.

Zoe was blown away by the kindness that she encountered following her hospital admission.

Some people joined an online support group. Neil benefited a lot from the support this group offered, as it helped him to accept bad days and realise that he was not the only one struggling. Some who had been critically ill early on in the pandemic were invited join a group once they were established. Some found this helpful, whilst others felt it came too late for them to make a difference.

Neil joined a support group of people who had also had Covid and had been mechanically ventilated.

Several people found social media helpful to share their experiences and to learn from others. However, the same platforms could also be a source of negativity; in some of the comments the existence or severity of Covid was contested. Some patients left or stayed away from online platforms. While this allowed them to regain their peace of mind, it did cut them off from the possibility of sharing and learning from the experiences with others.

Paul stopped visiting Facebook to share his experiences, because he found the negative content too draining.

* Support and follow-up needs of patients discharged from intensive care after severe Covid-19: a mixed-methods study of the views of UK general practitioners and intensive care staff during the pandemic’s first wave. Castro-Avila, A.C, Jefferson, L; Dale, V and Bloor, K.

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