Providing care and support at home to people who have had COVID-19

Published: November 2020

This quick guide will help home care workers and personal assistants (PAs) to provide care and support to people who have left hospital after having COVID-19. It explains what to expect as these people return to their lives at home under new circumstances. Involvement of families, friends and personal networks should be central to providing appropriate care and support.

Some of the difficulties that people might experience after a discharge from hospital include longer-term damage to the heart and lungs, difficulty swallowing, muscle weakness, fatigue, skin damage, confusion, and wider mental health problems or feelings of reduced wellbeing that affects their ability to resume day-to-day activities. Further information on all of these can be found in the After-care needs of inpatients recovering from COVID-19 guidance.

NHS England has also developed a resource dedicated to supporting people’s recovery after COVID-19. This online platform helps individuals to understand what they might expect as part of their recovery and reflects some of the information in this guide.

Discharge from hospital

When a patient is discharged from hospital, they will have a detailed assessment to create a personalised care and support plan. The assessment will be done by community health* and social care professionals, such as community and district nurses, and social workers. The resulting plan will set out agreed outcomes, and ongoing care and support for the person, including home care support. It should explain any health or social care tasks that care workers (including PAs) should carry out.

*Community health care services (CHS) play a critical role in keeping people well, managing acute and long-term illness, supporting people to live independently in their own homes, enabling rapid discharge from, and preventing unnecessary admission to, hospitals. The CHS workforce is diverse and includes community and district nurses, allied health professionals (e.g. physiotherapists and podiatrists) and health visitors. You can find more detail on CHS at Community health services.

Processes should be in place to make sure that care workers and PAs are able to carry out these tasks. For example, that they fully understand the instructions and are provided with the appropriate training and support.

Home care workers and PAs should only take on tasks which have been allocated to them and which they understand and can perform safely. It is important that they also understand when to escalate concerns to others, including their supervisor or manager, and how to do that.

Physical impact

Impact on the lungs

Most people will make a full recovery from COVID-19 at home, but the disease can make it harder for someone’s lungs to get enough oxygen into the blood. If not treated this can cause long-term damage and long-term breathing problems.

Some people may be breathing quickly or say they feel that they are having difficulty breathing, although some people will not experience shortness of breath at all.

Some people may need to have an exercise routine set by a lung rehabilitation specialist to help their lungs recover. The specialist may provide advice on how to help the person to do these exercises. This may be included in the person’s care and support plan, and care workers or PAs may be provided with information and training on how to support someone to carry out these exercises.

Some people may also develop tiny blood clots in their lungs while they are unwell. This can reduce the functioning of the lungs.

In this case, people may be treated with medication which thins the blood. This can lead to them bruising easily. If a care worker notices any unusual or repeated bleeding, they should seek medical attention immediately by contacting the person’s GP or by calling NHS 111, an ambulance, or a family member.

Monitoring oxygen levels

Some people do not have any symptoms to warn them that their oxygen level is low. It is important that they have a way of monitoring how much oxygen their body is getting. The device for doing this is called a pulse oximeter. People can learn how to use this simple device by themselves.

Some people will have low oxygen levels because of other health problems. If a person already has a lung condition, they, or someone who can act on their behalf, should check what their ‘normal’ oxygen level is with their GP or respiratory team. Care workers and PAs should be advised about when to raise an alert for that particular individual.

Some people may also need oxygen therapy at home. This will be provided by a specialist team with the relevant experience and training. Some types of oxygen therapy will mean care workers or PAs providing support need to wear a different type of personal protective equipment (PPE). This may include gloves, an apron, a long-sleeved gown, and an FFP3 respirator. The team supplying oxygen can advise if this is needed and can show the care worker how to support someone with oxygen therapy.

Storing oxygen in the home

Oxygen can pose a serious fire hazard. It is important that community health teams and providers work with the supplying team to ensure that personalised care and support plans identify and manage the risk of explosions and fire.

There should be a clear personalised care and support plan in place explaining who will be responsible for managing the oxygen, including any support from family members or care workers.

Employers of care workers (including PA employers) should also conduct their own risk assessment and, with support from community health services, make sure that staff are confident in how to manage oxygen safely within the home. The risk assessment should consider any risks to the person that the oxygen has been prescribed for, as well as any risks to care staff supporting that person.

Care workers should be aware of the content of the risk assessment, ensure they follow the risk management plans, and escalate concerns if they feel unsafe.

Additional resources on the use of oxygen include Home oxygen therapy and guidance for out of hours and primary care teams.

Impact on the heart

Some people will have suffered damage to their heart during their period of illness that may require supportive measures to help them recover. These will be explained in the personalised care and support plan.

Impact on diabetes mellitus

People with diabetes are at higher risk of complications if they have had COVID-19.

Severe viral infections can make diabetes more severe and mean that the person needs to have their treatment reviewed. They may need to start taking insulin injections during their recovery from COVID-19.

Any support needed to manage diabetes should be included in the personalised care and support plan. Tasks should be appropriately delegated by the relevant healthcare professional, and training and ongoing support should be provided for care workers and PAs.

Difficulty swallowing and mouth care

Some people who become particularly ill in hospital with COVID-19 may need to have artificial support with their breathing from one of a range of machines.

People may return home with difficulty swallowing and a risk of choking on food. This will need to be assessed by the community health team. Any changes to how and what the person eats should be described in their personalised care and support plan.

Support may also be needed to establish a normal routine of looking after people’s teeth, mouth or dentures. Some people may have damage to the soft tissue of the mouth or throat from having a tube inserted to help breathing.

Communication

Good communication is essential for everyone receiving care and support. It will help reassure people and build a positive relationship. Some people may have difficulty speaking which can feel distressing and isolating. Basic requests can be answered without the need to speak, such as through nodding, shaking the head, gestures, facial expressions, and through using pictures.

People with dementia may be less able to report symptoms because of communication difficulties. How to support effective communication and recovery should be detailed in the personalised care and support plan.

The Government is also producing a range of PPE face masks with transparent fronts that will be useful for working with people who use lip reading for communication.

Tracheostomy wound care

Some people will have had a tracheotomy in hospital, which is a small cut made in the neck to allow a tracheostomy tube to be inserted into the windpipe and attached to a ventilator to help with breathing.

A tracheostomy tube will normally have been removed before the person is discharged from hospital, and they should be able to breathe normally. However, some people may have difficulty swallowing afterwards and the wound left in the neck could become infected. Both of these problems will need to be assessed by the community health team, and any support needed from a care worker or PA will be explained in the personalised care and support plan.

In rare cases, a person may be discharged from hospital with a tracheostomy tube still in place. In this instance, community health teams will provide support to deliver the appropriate care required. It may mean individuals providing support might need to wear a different type of personal protective equipment (PPE). This may include gloves, an apron, a long-sleeved gown, and an FFP3 respirator. The community health team can advise if this is needed.

Looking after skin

People being cared for in hospital can experience damage to their skin, including sores on parts of the body known as ‘pressure sores’, ‘pressure ulcers’, or ‘moisture legions’.

These can also occur at home where mobility is limited and there is continual pressure on a part of the body, such as the heels, buttocks, lower back, elbows, shoulders, back of the head, or on the face if an oxygen mask is being worn.

Pressure ulcers can be very painful. They can range from slight discolouration of the skin which goes away when pressure is removed, to deep wounds which can become infected and cause people to become very unwell. Pressure ulcers are largely preventable with a few simple strategies, which should be described in the personalised care and support plan.

Muscle weakness

It is quite common for a range of important muscle groups to lose size and strength during a hospital admission for COVID-19. The longer the person is in hospital, the more muscle is lost.

People who were frail when they were admitted to hospital are particularly vulnerable to problems caused by muscle loss. This has been linked to falls, increased weakness, pressure ulcers, and reduced ability to move and carry out activities of daily living.

Some people may experience nerve damage that can cause numbness or pain in different parts of the body. This can also increase the risk of falls.

The recovery of muscle strength and mobility can take a long time. Good nutrition and support to regain the strength to carry out normal daily activities are important parts of recovery. They may be supported by personalised care and support plans, such as diet and exercise plans.

How to support recovery and manage risks from muscle weakness at home should be explained in the personalised care and support plan and risk assessment.

Fatigue (extreme tiredness or exhaustion)

After being seriously ill, some people may experience extreme fatigue that is beyond the normal experience of tiredness. This can impact on the time it takes people to recover, and how much support they need to help them to do so.

Home care can play an important role in supporting people with activities of daily living during this period. Activities should be explained in the personalised care and support plan.

Psychological and social impact

Confusion and delirium

Acute confusion from delirium is common during hospital admissions, and episodes may continue for some weeks at home. Delirium can be described as a disturbed state of mind, leading some people to become easily distracted and more confused than normal. Some people may also have lasting difficulties with their memory. People with dementia are much more prone to develop delirium if they have an infection. Being aware that a person may have dementia will alert care workers to this increased risk.

Plans to support people suffering from delirium should be clearly documented and agreed with the person or, where necessary, their representative. This should take into account the views and expertise of close family members and carers. Paid care workers, including PAs, should be informed of the approach required and provided with any necessary training. The arrangements should be described in the personalised care and support plan, including arrangements to keep people safe from injury if they are confused.

Seek a GP’s advice if a person being cared for appears acutely confused, such as:

  • not being able to think or speak clearly or quickly
  • not knowing where they are
  • struggling to pay attention or remember things
  • seeing or hearing things that aren’t there
  • agitated, restless or withdrawn.

Mental health

Coping with recovery from COVID-19 can be stressful and challenging. It is very common for people to experience fear or anxiety if they have had a serious illness, or to feel low about the challenges of recovery.

A kind and listening ear of a care worker, PA or health professional, along with the practical and healthcare support needed, can make a big difference to accepting and overcoming these feelings.

In recovery from COVID-19, some people may develop more persistent difficulties with their mental health, such as feelings of anxiety or depression, or symptoms related to post-traumatic stress disorder from their illness, their experiences of treatment or the wider impact on their lives. They may also suffer from a lack of confidence to resume their day-to-day routine following social distancing measures and isolation. Not having access to families and carers may also cause people distress. There is Public Health England guidance specifically to advise people about mental health and COVID.

There have also been reports of some people developing a form of psychosis as a response to COVID-19. Psychosis is a severe mental disorder which may cause people to experience reality in a different way to other people. This might involve believing that others may want to harm the person (paranoia), seeing or hearing things that other people cannot see or hear (hallucinations), or believing things that are not actually true (delusions).

For most people, primary care mental health support can be accessed via GP surgeries. If a care worker or PA notices changes in the mental health of a person they provide care and support to, or are worried about any aspect of their recovery, then in the first instance they should encourage them to discuss this with their GP, as well as their family and support network if appropriate.

Where care workers or PAs have ongoing concerns, the community health team or GP should be contacted. People with persistent anxiety, depression or post-traumatic stress disorder one month after the immediate health crisis is over can refer themselves for talking therapies on the NHS. The local Improving Access to Psychological Therapies service can be found here.

Many areas of the country have easy access to NHS 111 first response services for people experiencing mental health crises and there are many services offering support from peer support workers who have lived experience of mental health services.

The NHS Volunteers Service can also provide a telephone ‘check in and chat’ for people who have mental health issues and are feeling isolated. Anyone can call 0808 196 3646 (8am to 8pm) or visit NHS Volunteers Service. For people who are shielding, both the NHS and local authority have support services in place.

Issues with mental capacity and making decisions

It is important that people who are discharged following COVID-19 are, as far as possible, in control of their own care and support and their wishes are respected. The Mental Capacity Act assumes that a person has the capacity to make a decision themselves, unless it’s proved otherwise. Someone can lack the capacity to make some decisions but still have the capacity to make other decisions. This may particularly be the case for people with dementia. If a care worker is concerned about the person they care for, they should speak to the person’s social worker or can ask the local authority to support them to get a mental capacity assessment.

Activities of daily living

After returning from hospital, some people may have difficulties with their activities of daily living. For example, personal care (washing, dressing, using the toilet, eating and nutrition), household tasks (cooking, cleaning), leisure activities and other activities that allow a person to be independent (paying bills, catching public transport, shopping, childcare). These all form part of the wellbeing principles under the Care Act 2014.

A social worker will complete an assessment that can support the person with their overall wellbeing, looking at their strengths and needs, and helping them remain connected with family, friends and their community. It will be very important to identify these positive parts of a person’s life to support their independence and their recovery. Social workers can also help facilitate discussions with banks and other utilities, and help people navigate the benefits system.

This should already be included in the personalised care and support plan. If a social worker has not been involved, an assessment and support can be requested by community health services. Personalised care and support plans should include agreed outcomes, a description of what matters to the person receiving care, and what support is required to make the plan achievable. People may be able to receive social care personal budgets, NHS personal health budgets, or an integrated personal budget. This combines health and social care funding to purchase the care and support the individual requires to meet their assessed needs and agreed outcomes.

Person-centred support may be required in the short – and/or long term – including packages of care, family support or equipment and technology to improve the person’s ability to be independent.

Getting the basics right

Infection control and PPE

The current guidance about personal protective equipment (PPE) can be found in the How to work safely in domiciliary care guidance and the PPE guide for community health and social care settings.

Good infection prevention and control measures, including hand washing, are a fundamental part of care to reduce the spread of infection. SCIE has produced a quick guide and an e-learning course on practical infection control for care providers.

Seeking further help

If a care worker or PA is worried about someone they care for, there are a number of avenues of support that they can access. For example:

Attend A&E within an hour or call 999 for an ambulance if:

  • the person is unable to complete short sentences when at rest, due to breathlessness
  • their breathing gets worse suddenly
  • their blood oxygen level is 92 per cent or less.

OR if these signs of more general serious illness develop:

  • coughing up blood
  • feeling cold and sweaty with pale or blotchy skin
  • developing a rash that does not fade when you roll a drinking glass over it
  • collapsing or fainting
  • becoming agitated, confused or very drowsy
  • having stopped peeing or are peeing much less than usual.

Call the person’s GP or NHS 111 if:

  • they slowly start feeling more unwell or more breathless
  • they have a raised temperature or feel hot to the touch, look flushed or are sweating
  • they are having difficulty breathing when getting up to go to the toilet or similar
  • they use a pulse oximeter, their blood oxygen level is 94 per cent or 93 per cent or continues to be lower than their usual reading
  • you sense that something is wrong (for example, general weakness, severe tiredness, loss of appetite, peeing much less than normal, vomiting, diarrhoea, or an inability to perform simple tasks that the person is normally able to do – e.g. washing and dressing or making food).

Further reading