COVID-19 pandemic presents new challenges for learning disability nurses

People with learning disabilities and autism are more likely to need support to understand the virus and its effects on everyday life

  • Physical health needs of people with learning disabilities and autism are going unmet
  • Annual health checks should be made a priority
  • Some nurses find holding virtual meetings beneficial
Picture of a woman showing a boy how to clean his hands with sanitiser. Both are wearing masks.
Picture: iStock

From coping with social distancing, attending virtual meetings, caring for service users with COVID-19 symptoms and the use of personal protective equipment (PPE), learning disability nurses face numerous challenges amid the pandemic.

Department of Health and Social guidance makes it clear that people with learning disabilities and autism are more likely to need support to understand the virus and its effects on everyday life.

It also recommends considering what can remain consistent, such as maintaining the usual staff who provide support with certain tasks.

‘The next phase in lockdown may be harder as the rules will be greyer’

Simon Jones, learning disability nurse consultant

Explain in simple and familiar terms why things are changing, emphasising what will remain normal and how long change will likely last. Support the service user to continue doing what they enjoy and what calms them.

Having a learning disability places someone in the government’s category of being at higher risk of becoming severely unwell if they contract COVID-19. This means they should be particularly stringent about social distancing measures.

Picture of Simon Jones, LD nurse consultant at Oxford Health NHS Foundation Trust.
Simon Jones

Public Health England's (PHE) easy-read COVID-19 guidance could help nurses explain the situation to their service users.

Oxford Health NHS Foundation Trust learning disability nurse consultant Simon Jones says some services users and staff are finding themselves isolated by these changes and are trying to adapt to a change of structure.

'Some staff are nervous about visiting patients and some patients nervous about being visited'

‘Fear of leaving home has increased as time has passed,’ he says. ‘There have been some increases in patient behavioural problems but also some decreases where fewer demands are placed on people.

‘The next phase in lockdown may be harder as the rules will be greyer, and people may be uncertain about what that means. Already some staff are nervous about visiting patients and some patients nervous about being visited.’

PHE guidance states that if someone shows symptoms of COVID-19 they must self-isolate for seven days if living alone. If they live with others, then the whole household must self-isolate for 14 days.

‘One of the challenges has been around family contact – keeping families informed is really important’

Jonathan Beebee, chief enablement officer and nurse consultant

The government says that in supported living provision, providers and residents need to make judgements on a case-by-case basis. It is important to consider the unique nature of individual supported living services, which range from individual self-contained properties that can be treated as separate households through to shared environments with communal areas where the principles of household isolation may apply.

Picture of Jonathan Beebee, chief enablement officer and nurse consultant at PBS4
Jonathan Beebee
Picture: Chris Balcombe

Jonathan Beebee, chief enablement officer and nurse consultant at PBS4, a non-profit social enterprise that provides supported living services and helps people live in their own homes, says the separation from families is difficult for them and service users.

Guidelines on using personal protective equipment

‘One of the challenges has been around family contact. Keeping families informed is really important,’ he says.

If caring for service users with symptoms of COVID-19, healthcare workers should use PPE for activities that bring them into close personal contact, such as washing, personal hygiene and contact with bodily fluids.

Aprons, gloves and fluid repellent surgical masks should be used in these situations, as well as eye protection if there is a risk of splashing.

PHE guidance states that new PPE must be used for each episode of care and stored securely within disposable rubbish bags. These bags should be placed into another bag, tied securely and kept separate from other waste within the room, and put aside for at least 72 hours before being put in the usual household waste bin for disposal.

If a nurse or care worker has symptoms they should self-isolate at home. If another member of the household has symptoms, the need for PPE needs to be risk-assessed on a case-by-case basis. PPE has been scarce across the NHS and social care sector, and this is an area that learning disability nurses in the community are also struggling with, Mr Jones says.

View our COVID-19 resource centre

Mr Beebee says being cared for by people in masks can be unsettling for those with learning disabilities and autism. ‘The mask covers one of the most expressive parts of the body, and it can be frightening seeing someone approaching wearing one.’ Colleagues drew Spiderman images on PPE they were wearing with one service user to help him relax, he adds.

A care plan that maximises self-care must be closely followed

Nurses should explain clearly that cleaning your hands frequently with soap and water, or using hand sanitiser, is one of the most effective ways of reducing the risk of infection.

Service users are likely to have a care plan that maximises self-care, and this must be closely followed to reduce the need for hands-on personal care where possible.

Normal household products such as detergents and bleach are effective at getting rid of the virus on surfaces. Nurses should be aware that personal waste such as used tissues, continence pads and other items soiled with bodily fluids, as well as disposable cleaning cloths, can be stored securely in disposable rubbish bags.


Picture of a launderette.
Picture: iStock

Support for a service user with laundry

When supporting a service user with laundry, nurses and care workers should avoid shaking dirty laundry to minimise the risk of spreading the virus in the air.

Items heavily soiled with body fluids or items that cannot be washed should be disposed of with the owner’s consent.

Virtual meetings less intimidating but unsuited to in-depth conversations

Some nurses are reporting that the physical health needs of people with learning disabilities and autism are going unmet. Mr Jones says some areas are having urgent meetings to focus on this, and that annual health checks for people with learning disabilities and autism need to be a priority.

Nurses are finding that holding more virtual meetings has brought some benefits, Mr Jones says. ‘People have reported there is more responsiveness, more focus – they can be more effective and have better attendance,’ he says. ‘It is also easier to get key individuals, avoids travelling time, there is increased frequency of contact and it can be less intimidating for patients and carers.

‘So while there may be aspects to keep in the future, it can also be less suited to in-depth conversations, can be unwieldy with big groups, and very intense if meetings are back to back, and it takes away the thinking time people used to have when travelling.’

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