Analysis

COVID-19 vaccine: why people with learning disabilities should be a priority group

People with learning disabilities are significantly more likely to die from COVID-19 than the general population

People with learning disabilities are significantly more likely to die from COVID-19 than the general population

  • Omission of a distinct priority group for people with learning disabilities called ‘unacceptable’ by Mencap
  • Nurses report difficulties in messaging and how to interpret the guidance for those with learning disabilities
  • Some do not have capacity to understand need for a test, while disruption of daily life can cause psychological problems

People with learning disabilities were up up to six times more likely to die from COVID-19 than the general population during the first wave of the pandemic, according to a

People with learning disabilities are significantly more likely to die from COVID-19 than the general population

  • Omission of a distinct priority group for people with learning disabilities called ‘unacceptable’ by Mencap
  • Nurses report difficulties in messaging and how to interpret the guidance for those with learning disabilities
  • Some do not have capacity to understand need for a test, while disruption of daily life can cause psychological problems
A woman with learning disabilities wearing a mask to protect against COVID-19
Picture: iStock

People with learning disabilities were up up to six times more likely to die from COVID-19 than the general population during the first wave of the pandemic, according to a Public Health England study.

Despite this stark statistic, people with learning disabilities have not been listed as one of the priority groups for the first phase of the UK’s COVID-19 vaccination programme.

A list drawn up by the Joint Committee on Vaccination and Immunisation sets out nine priority groups for vaccination.

Who is a priority for the COVID-19 vaccine?

Illustration shows four vials (marked priority group 1 to 4) and a needle for injecting
Picture: iStock

The organisation that advises UK health departments – the Joint Committee on Vaccination and Immunisation – recommended nine priority groups to receive the COVID-19 vaccines first.

The first four priority groups are:

  1. Care home residents and staff
  2. Over-80s and NHS and care staff
  3. Over-75s
  4. Over-70s and people who are extremely clinically vulnerable.

Adults with Down’s syndrome are in priority group 4.

People with a severe or profound learning disability are in priority group 6, alongside other high-risk adults aged under 65.

Down’s syndrome and severe and profound learning disability are listed as underlying health conditions that increase the risk of mortality and morbidity from COVID-19.

People with a learning disability who have other health conditions may also be in other priority groups.

Source: Joint Committee Vaccination and Immunisation

Prime minister Boris Johnson has said it is a ‘realistic expectation’ that all people in the top four priority groups will receive their dose of the COVID-19 vaccine by mid-February in what is the largest vaccination programme in NHS history.

The charity Mencap says the omission of a distinct priority group for people with learning disabilities is ‘unacceptable’, and has urged a rethink.

Mencap head of policy Dan Scorer
Dan Scorer

Mencap head of policy Dan Scorer says: ‘We don’t feel the response so far around prioritisation fully takes into account the appalling reality of an incredibly high rate of deaths. COVID has exacerbated what was already a dire situation.’

‘People with learning disabilities should be a priority’

RCN learning disability nursing forum chair Jonathan Beebee agrees. ‘People with learning disabilities should be a priority,’ he says.

‘If attention still isn’t being paid to all of the reports we’ve had, highlighting the stark health inequalities faced by people with learning disabilities, it’s hard to know what will change thinking.’

Those stark health inequalities were the subject of a Mencap report published in December that looked at the barriers to healthcare for people with learning disabilities during the pandemic.

The report was based on the findings of a survey that obtained the views of 239 learning disability nurses working in an acute hospital or community-based role between June and July last year.

Learning disability nurses’ experiences during the COVID-19 pandemic

Some of the survey’s findings included:

  • Only one in five of the nurses responding to the survey said they had always seen reasonable adjustments made for people with a learning disability.
  • One in four nurses said they had seen examples of people with a learning disability not being allowed to have a family member, carer or supporter accompany them in hospital.
  • 57% said healthcare professionals did not always have enough time to ensure the right support was in place for patients with a learning disability on discharge.
  • 11% of acute learning disability nurses said they or a team member had been redeployed, while for community-based learning disability nurses this rose to 34%.

The report called for a variety of actions, including prioritisation for COVID-19 vaccines and clearer healthcare guidance that specifically addresses the needs of people with a learning disability.

RCN learning disability nursing forum chair Jonathan Beebee
Jonathan Beebee

Reflecting on the experiences of people with learning disabilities during the pandemic so far, Mr Beebee highlights how explaining the importance of adhering to social distancing rules has been a challenge.

Lack of understanding of measures and reluctance to wear a face mask

‘For the people we support, a lot don’t understand why they’re needed, so things such as maintaining two metres social distance is very difficult for them.

‘They can also be reluctant to wear a face mask, because they’re uncomfortable. They are struggling with the general measures that have been put in place.’

It can mean some face a backlash from people who may wrongly believe they are flouting the rules in public places. ‘If someone with learning disabilities is walking around a supermarket without a mask and getting close to people, it makes them feel uncomfortable,’ he says.

Routines for people with learning disabilities have been hugely disrupted

6 times higher

The death rate of adults with learning disabilities was up to six times higher than that of the general population in first wave of the pandemic

Source: Public Health England

‘But if people with learning disabilities were vaccinated, it would reduce the risks in those situations.’

Routines for people with learning disabilities have also been disrupted hugely by the pandemic, with many unable to see their loved ones, particularly if they are older and more vulnerable.

‘Having a structure in their day-to-day life, including seeing their family at a particular time, helps many people with learning disabilities feel safe,’ says Mr Beebee.

‘When those things disappear, people can become unstable, especially if they don’t understand what the changes are about and why they’re happening. It’s causing lots of psychological problems.’

 Learning disability nurse consultant Paula Hopes
Paula Hopes

Learning disability nurse consultant Paula Hopes says exclusion has been a big issue.

‘People have said they felt left behind and not included in decisions about them and their lives,’ says Ms Hopes, who works at Swansea Bay University Health Board.

Inappropriate do not attempt cardiopulmonary resuscitation orders

‘From the beginning we’ve seen difficulties in messaging and how to interpret the guidance, including how quickly some of it changes. For many, it feels like planning happens, accessible information comes out, and only then is there the interpretation for people with learning disabilities.’

During the pandemic’s early stages the recommendation to use a clinical frailty scale for patients in critical care meant many people with learning disabilities faced the possibility of inappropriate do not attempt cardiopulmonary resuscitation (DNACPR) notices being issued for them.

54%

of learning disability nurses said there was a moderate or high risk of people with a learning disability receiving an inappropriate DNACPR

Source: Mencap

Originally published as part of National Institute for Health and Care Excellence (NICE) guidance on the treatment of patients in critical care, the guidelines suggested that those who could not do everyday tasks independently – such as cooking, managing money and personal care – would be considered frail and as a consequence might not receive intensive care treatment.

Revised NICE guidance clarifies use of clinical frailty scale

Responding to concerns, the guidance was revised last April, making it clear that the scale should never be used to assess patients aged below 65 or of any age with long-term stable disabilities.

‘It caused a lot of anxiety for people with learning disabilities and their families,’ says Ms Hopes.

‘The tool put some people with learning disabilities quite high up the scale. Potentially it meant people would not be escalated for treatment. It took lobbying to gain clarity. It felt like an afterthought.’

Despite the revised guidance, Mencap continues to have concerns about the inappropriate use of DNACPR notices for people with learning disabilities.

Picture shows nurse holding medical notes
Picture: iStock

‘There are DNACPRs lying in people’s medical notes, unknown to them,’ says Mr Scorer.

‘They could have an ongoing detrimental impact if someone were to be admitted to hospital and then not prioritised for treatment on the basis of one of these orders that they, their family or carers don’t even know about.’

Although the guidance was reissued quickly, many people with learning disabilities had already received letters from their GP recommending they think carefully about whether they would want resuscitation if admitted to hospital, or even if they would want to go to hospital at all.

Care Quality Commission carrying out a detailed review

11%

of acute learning disability nurses said they or a team member had been redeployed, rising to 34% for community-based learning disability nurses

Source: Mencap

‘Seeking people’s wishes around treatment is a perfectly legitimate conversation to have, but they need to be properly informed,’ said Mr Scorer.

In December, the Care Quality Commission (CQC) published an interim report on the issue and is carrying out a more detailed review.

‘What the CQC finds will be very important for future actions,’ said Mr Scorer.

COVID testing has also proved challenging, particularly when trying to transition people with learning disabilities to other settings.

People identified as clinically extremely vulnerable are advised to shield during lockdown

Some are unable to consent or do not have the capacity to understand the need for a test, says Ms Hopes.

‘The process is also quite invasive. If someone can’t be supported to understand the benefits, their care journey can be impacted and they may have to isolate for 14 days.’

A UK-wide lockdown imposed on 5 January is expected to remain in place until at least mid-February.

Everyone in England identified as clinically extremely vulnerable has been advised to shield.

Fears all shielding people may struggle to get basic items and of social care and support cuts

Mencap has called for the government to ensure all shielding people get the help they need – including adults with Down’s syndrome in the clinically extremely vulnerable group.

Mr Scorer said: ‘In the first lockdown, national support to get food, medicine and other essential items was available, but is now left to under-resourced and overstretched local authorities.

‘We are deeply concerned people may struggle to get these basic items, and there are also fears about social care support cuts.’

Mencap recommendations

As part of a report called My Health, My Life: Barriers to Healthcare for People with a Learning Disability during the Pandemic, Mencap is calling for:

Clear guidance iconClearer healthcare guidance that addresses the needs of people with a learning disability

The government to prioritise vaccination for people with a learning disability

Reasonable adjustments to be made where possible

DNACPR iconDo not attempt cardiopulmonary resuscitation orders to be reviewed and removed from the records of patients who did not give informed consent, or where proper decision-making did not take place



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