Leaving lockdown: how learning disability nurses can support service users

Nurses can help people with learning disabilities to recover from the toll of COVID-19 as lockdown ends

• People with learning disabilities have died in greater numbers and struggled to access core health services during the pandemic
• Challenges as lockdown ends include getting respite and voluntary work restarted and supporting child-to-adult transition
• Learning disability nurses’ role as advocates for their patients is needed more than ever

The COVID-19 pandemic has been difficult for everyone and for people with learning disabilities it has taken a huge toll.

Research shows that not only have people with learning disabilities died in greater numbers but they have also struggled to access core health services, while the specialist services they rely on have been severely disrupted.

The pandemic could have a long-lasting effect on the health and well-being of people with learning disabilities. With lockdown lifting around the UK, what can nurses do to help?

RCN learning disability nursing forum chair Jonathan Beebee says learning disability nurses have been, and will continue, working hard to keep specialist services running.

Progress by individuals towards greater independence may have been lost

‘They’ve provided support throughout, whether in inpatient settings or in the community. In the community some appointments have been done digitally, but where needed, nurses are still visiting homes.’

Mr Beebee says the greatest challenge lies in restarting respite and voluntary work, as well as focusing on the transition from child to adult services, which has been particularly disrupted.

• RELATED: Has the planned ‘reset’ of learning disability nursing been a success?

He believes there is a risk that progress individuals have made in greater independence may have been lost over the past year. ‘Some may need more support and hospital admissions may go up.’

Simone Aspis, director of Changing Perspectives, which advocates for people with learning disabilities, says those already in hospital have lost out too.

Ms Aspis says there have been numerous examples of community leave being cancelled and regular activities stopping because of COVID-19 outbreaks, while people detained under the Mental Health Act were not allowed to form support bubbles during lockdown. ‘We cannot overstate the impact that losing even these few freedoms has had.’

These concerns are backed up by data from a study of coronavirus and people with learning disabilities published by Manchester Metropolitan University and the University of Warwick in March 2021.

• RELATED: Why people with learning disabilities and their families fear another COVID-19 lockdown

Researchers interviewed more than 600 people with learning disabilities and 378 carers of people with severe disabilities. They found that the well-being of people with learning disabilities had suffered, with many left sad, frustrated, angry and isolated.

Nine in ten reported seeing cutbacks in community activities, day and respite support, while 80% of those not living at home saw service providers impose restrictions on visitors.

Creativity is needed in the face of community service restrictions

Even now, with lockdown lifting, social distancing requirements mean a return to full provision is still some way off.

UK Learning Disability Nurse Consultant Network member Kerry Anderson, who works in the north of Scotland, says there will be restrictions on numbers and availability of community services for some time to come.

‘What we have to do is assess what support people need and carefully plan and match it to the resources that are available. The key is being creative and looking for solutions. Learning disability nurses have always been great advocates.

‘That is going to be needed now more than ever. We are concerned about health inequalities widening and need to make sure we provide the services and support people need within the limitations.’

Mencap says changes in how the NHS operates created a troubling picture

People with learning disabilities already faced barriers accessing core health services before the pandemic began, but research by Mencap has highlighted how the past year has seen new and heightened problems emerge.

Mencap’s report My Life, My Health warned that changes in the way the NHS operated had created a troubling picture which threatened to have a devastating effect on the health of people with learning disabilities.

It highlighted how restrictions on visitors had led to people with learning disabilities being taken alone in ambulances and admitted into hospital with no one there to support and advocate for them during their stay. In some cases, do not attempt cardiopulmonary resuscitation decisions had been made inappropriately.

• RELATED: Resuscitation notices and COVID-19: RCN backs review of DNACPR use

The report said the problems had been exacerbated by redeployment of learning disability nurses – one in nine reported redeployments in their hospitals early on in the pandemic.

While that scale of redeployment is not thought to have been repeated during the most recent lockdown, some problems persist.

Mencap warns about the use of personal protective equipment, which it said was not always suitable for communicating with people with learning disabilities.

It said reliance on remote consultations for hospital and community appointments could lead to diagnostic overshadowing’ where changes in behaviour or health are automatically attributed to a person’s disability rather than being assessed properly.

Learning disability nurses need to push for improvements to health services

This will be compounded by disruption to annual health checks, with nearly half of people with learning disabilities reported not to have had their check-ups in the past year, according to the study of coronavirus and people with learning disabilities.

One of the lead researchers on that study, Christopher Hatton, of Manchester Metropolitan University, says learning disability nurses will have a crucial role in tackling these problems. He wants them to help push for adjustments and improvements to health services.

‘Learning disability nurses need to be the human face of health services, ensuring people and families who have not seen a health professional for a long time, and who may be wary of leaving their home, can make use of the health services they need.’

• RELATED: COVID-19 and needle phobia: ensuring service users are vaccinated

Often it is simple things that can make a difference. Mencap highlights how nurses helped one patient who had been admitted to hospital by using the teddy bear she had brought in to explain what they needed to do by pretending to carry out the procedures on the toy first.

Always looking at new ways to adjust services to meet different needs

NHS Grampian interim executive nurse director June Brown, a learning disability nurse by background, says the current climate requires such creativity. Her service has taken on an extra acute learning disability liaison nurse to help advocate for patients, but other practical steps have also made a difference.

‘We have used social stories and storyboards to help with communication and we have given people with learning disabilities access to iPads so they can keep in touch with their families.’

The health board has been trying to source clear masks to aid communication, although so far without success because none meet the standards required in healthcare, while a new system for health checks is being piloted looking at doing more of the assessments digitally or remotely away from the GP practice.

‘We are always looking at new ways to adjust services to meet their needs,’ says Dr Brown.

A problematic aspect of the vaccination roll-out

The vaccination of people with a learning disability has been one of the few problematic aspects of the roll-out of the vaccination programme.

Initially people with learning disabilities were not directly listed in the first nine priority groups, before the government clarified, in February, that those on the learning disability register – and therefore with the most severe problems – should be offered a vaccination as part of priority group six. It came after a high-profile campaign which included the DJ Jo Whiley.

• RELATED: Nurses urged to check people with learning disabilities registered for COVID-19 vaccine

What was not in doubt was the appetite for the vaccine. The study of coronavirus and people with learning disabilities found most people with learning disabilities would happily get the vaccine, with 85% saying they would.

Making sure services are accessible will continue to be vital in ensuring good uptake. NHS guidance says that for many their disabilities will have minimal impact on appointment attendance but reasonable adjustments must be made to support them.

Finding settings that people with learning disabilities are comfortable with is key

There are numerous examples of good practice involving dedicated clinics where longer appointments are offered and quiet zones in mass vaccination centres.

Mobile units have been used to take vaccinations direct to people with learning disabilities. Belfast Health and Social Care Trust learning disability nurse Michelle Curran says the key is finding settings where people with learning disabilities are comfortable.

• RELATED: COVID-19 vaccine consent and learning disabilities: implications and advice

She has been working as part of a vaccination team which has visited inpatient units, supported housing and day centres to vaccinate people with learning disabilities.

‘We liaise in advance with GPs, families and the individuals themselves to get consent, and before we visit we talk to the units so they can alert us to any people they think there could be issues with. We have a series of cards and photos of vaccinators with the vaccine that they can show them.

‘When we arrive we take our time. It is important that we have learning disability nurses doing the vaccination along with others because we understand our clients. We have only had one person who was agitated and in the end we did not vaccinate him. We are not going to vaccinate everyone – I think we have to accept that.

Learning disability nurses seen as important advocates

‘It is so important to reach out to this group of people given the risks they face from COVID-19. I am delighted with the progress we have made – we are now on to second doses.’

• RELATED: COVID-19 and needle phobia: ensuring service users are vaccinated

At the charity Learning Disability England, spokesperson Carinder Malik says this kind of work demonstrates why learning disability nurses are going to be so vital in the coming months: ‘They can help us to get the right reasonable adjustments we need.

‘Sometimes it gets confusing or makes us anxious trying to sort things out by ourselves. For lots of us they are an important advocate, helping us understand what we need to do and who to contact.’

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Nick Evans is a health journalist

Find out more

• Mencap (2020) My Health, My Life: Barriers to Healthcare for People with a Learning Disability during the Pandemic
• Social Care Institute for Excellence (2021) COVID-19 Guide for Care Staff Supporting Adults with Learning Disabilities or Autistic Adults
• UK Learning Disability Consultant Nurse Network