How one acute hospital responded to COVID-19 in people with learning disabilities
Intended for healthcare professionals
Evidence and practice    

How one acute hospital responded to COVID-19 in people with learning disabilities

Serena Jones Learning disability acute liaison nurse, Royal Liverpool University Hospital, Liverpool University Hospitals NHS Foundation Trust, Liverpool, England

Why you should read this article:
  • To understand the vulnerability of people with learning disabilities to coronavirus disease 2019 (COVID-19)

  • To find out about COVID-19-related deaths in patients with learning disabilities at one hospital

  • To enhance your awareness of the need to obtain more clinical awareness of the needs of the learning disability population

There is evidence that people with learning disabilities are more vulnerable to coronavirus disease 2019 (COVID-19) than the general population, but there is a need to understand better how COVID-19 has affected that patient group. This article details a retrospective comparison study exploring the response of one acute hospital to COVID-19 in the learning disability population.

A wide range of data were collected for the period between March 2020 and March 2021 about patients with learning disabilities, including admissions and deaths, do not attempt cardiopulmonary resuscitation (DNACPR) orders, ceilings of care and input from the learning disabilities acute liaison team. Data from the five years preceding the study were also collected. These data were compared with data about the general population, in the hospital and nationally.

The data show that there had been no significant increase in the number of deaths of people with learning disabilities at the hospital during the first 13 months of the pandemic. However, this could be because fewer people attended hospital and more died in the community. Wider and more in-depth investigation is needed to understand the factors that may increase the risk of COVID-19-related death for people with learning disabilities.

Learning Disability Practice. doi: 10.7748/ldp.2022.e2168

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

serena.jones@rlbuht.nhs.uk

Conflict of interest

None declared

Jones S (2022) How one acute hospital responded to COVID-19 in people with learning disabilities. Learning Disability Practice. doi: 10.7748/ldp.2022.e2168

Published online: 31 March 2022

Background

Coronavirus disease 2019 (COVID-19) is an infectious disease caused by severe acute respiratory syndrome coronavirus 2 (SARS‑CoV‑2) (World Health Organization (WHO) 2022). Most people infected with SARS‑CoV‑2 experience mild-to-moderate respiratory symptoms and recover without requiring specialist treatment. Older people and people with underlying health conditions are more likely to develop severe disease that may lead to death (WHO 2022). The COVID-19 pandemic has had profound effects on healthcare provision worldwide.

Certain population groups have been disproportionately affected by COVID-19 in terms of morbidity and mortality, one such group being people with learning disabilities. The Learning Disabilities Mortality Review (LeDeR) Programme (leder.nhs.uk) reviews all the deaths of people with learning disabilities in England that are reported to the programme. Between 21 March 2020 and 5 June 2020, the prevalence rate of COVID-19 deaths notified to the LeDeR Programme was 451 per 100,000 – that is, 4.1 times higher than in the general population (Public Health England (PHE) 2020).

In England, between 10 April 2020 and 15 May 2020, 386 deaths of people with learning disabilities were notified to the Care Quality Commission (CQC), more than half (n=206) of which were confirmed or suspected COVID-19 cases (CQC 2020). During the same period in 2019, the CQC had been notified of 165 deaths of people with learning disabilities. This equates to a 134% increase in the number of deaths notifications to the CQC (CQC 2020).

Furthermore, in 2020, 82% of COVID-19-related deaths in people with learning disabilities occurred in hospital versus 63% in the general population. In 2018 and 2019, approximately 60% of deaths of all causes among people with learning disabilities had occurred in hospital (PHE 2020).

There is a lack of clarity about the increased risk of COVID-19-related death for people with learning disabilities (Perera et al 2020) and a need to understand better how COVID-19 has affected that patient group, who already face significant health inequalities compared with the general population (Heslop et al 2013). This article reports and discusses the findings of a retrospective comparison study exploring the response of an acute hospital in Liverpool to COVID-19 in the learning disability population.

Level of deprivation and health outcomes

Being exposed to multiple deprivations is associated with suboptimal health outcomes across age groups. People in deprived areas often begin to experience health issues and require care from a much younger age than people in affluent areas, and this can lead to significant health inequalities (Liverpool Clinical Commissioning Group (CCG) 2018). People with learning disabilities often live in deprived areas, which is not surprising considering that they also tend to have a limited income and suboptimal housing conditions (Nicholson and Hotchin 2015). In people with learning disabilities, there is an association between social deprivation and mental health issues (Cooper et al 2007, Mental Health Foundation 2016).

Liverpool is the third most deprived local authority in England (Liverpool City Council 2020). According to the Office for National Statistics (ONS) (2020), ‘people living in more deprived areas have experienced COVID-19 mortality rates more than double those living in less deprived areas. General mortality rates are normally higher in more deprived areas, but so far COVID-19 appears to be taking them higher still’. The learning disability population in Liverpool is therefore among the most vulnerable to COVID-19 in the UK. The pandemic may have exacerbated pre-existing health and socioeconomic inequalities and caused an increase in hospital deaths among people with learning disabilities in Liverpool. There is a need to ensure that acute hospitals treat people with learning disabilities equally and offer them the same quality of care as that offered to people without learning disabilities.

Ill health in the learning disability population

Obtaining an accurate clinical picture of the learning disability population is challenging. Many people with learning disabilities remain invisible in the healthcare system (Harris et al 2016), so their needs are not recognised or understood, which can place them at increased risk of suboptimal health outcomes. Harris et al (2016) noted that, although about 4.6 people per 1,000 in the population are known to have a learning disability, research suggests there may actually be about 20 people in every 1,000 with a learning disability. Mencap (2021) stated that there are 1.5 million people with learning disabilities living in the UK – that is, approximately 2% of the population. Liverpool City Council (2021) estimates that Liverpool’s population is 500,500 people, which would equate to a learning disability population of about 10,000 people.

Before the COVID-19 pandemic, there was evidence that people with learning disabilities experience higher rates of morbidity and mortality than the general population and die prematurely (Heslop et al 2013, LeDeR Programme 2020). Among people with learning disabilities, 41% of deaths relate to respiratory conditions (NHS England and NHS Improvement 2020) and there is a higher prevalence of asthma, diabetes mellitus, obesity and underweight. These facts make people with learning disabilities more vulnerable to COVID-19 (LeDeR Programme 2020). Furthermore, the learning disability population may experience diagnostic overshadowing, whereby a person’s symptoms of physical ill health are wrongly attributed to their learning disability (Gates and Barr 2009, Blair 2017). This could mean that levels of ill health among people with learning disabilities are even higher than the figures suggest.

Key points

  • Many people with learning disabilities remain invisible in the healthcare system, so obtaining accurate clinical information about them is challenging

  • People with learning disabilities have been disproportionately affected by coronavirus disease 2019 (COVID-19) in terms of morbidity and mortality

  • The pandemic may have exacerbated pre-existing health and socioeconomic inequalities experienced by people with learning disabilities

  • Further exploration of the factors that may increase the risk of COVID-19-related death for people with learning disabilities is needed

Aim

To explore the response of an acute hospital in Liverpool to COVID-19 in the learning disability population by reviewing data on admissions and deaths of patients with learning disabilities during the first 13 months of the pandemic and comparing them with data about the general population, in the hospital and nationally.

Method

Setting

The Royal Liverpool University Hospital is a major inner-city teaching and research hospital. It is the largest and busiest hospital in Cheshire and Merseyside and has one of the largest emergency departments (EDs) in the UK. There are 850 beds across the hospital site. Given that an estimated 2% of the UK population have a learning disability (Mencap 2021), 17 of these 850 beds are potentially occupied at any given time by a person with a learning disability. On average, the hospital’s ED sees about 90,000 patients each year, which would equate to 1,800 patients with learning disabilities.

The hospital has systems in place for identifying and flagging patients with learning disabilities. ‘Identifying’ refers to the way staff recognise that a patient has a learning disability while ‘flagging’ refers to a formal notification on the electronic patient record system. In the year ending 31 March 2021, 1,479 patients with learning disabilities were flagged as such on the hospital’s electronic patient record system, compared with 1,060 the year before.

Data collection and analysis

The data collected related to the period from 1 March 2020 to 31 March 2021. Data were obtained from the hospital’s information technology (IT) system, the in-house data collection and information analysis team, the hospital’s learning disabilities database and Liverpool CCG’s notifications of deaths to the LeDeR Programme. An in-depth analysis of electronic patient records was completed and all patients’ clinical notes were reviewed.

Ethical considerations

No ethical approval was sought. The LeDeR Programme has approval from the Secretary of State under section 251 of the NHS Act 2006 to process patient-identifiable information without patients’ consent. Service condition 26 of the NHS Standard Contract requires any provider of services to the NHS to participate in relevant projects in the National Clinical Audit and Patient Outcomes Programme (LeDeR Programme 2017).

The local LeDeR Programme contact has developed networks across the Liverpool area to ensure that all NHS providers and GP surgeries support the LeDeR Programme (Forshaw 2021), of which the author is an active member. This has enabled the LeDeR Programme to access the evidence it needs to ensure that its reviews of deaths lead to learning, which will ultimately result in improved health and social care services for people with learning disabilities.

Findings

COVID-19-related admissions and deaths

Between 1 March 2020 and 31 March 2021, there were 3,053 COVID-19-related admissions at the Royal Liverpool University Hospital, of which 65 were of patients with learning disabilities, and 806 COVID-19-related deaths, of which 13 were in patients with learning disabilities. Four patients with learning disabilities aged over 85 years with confirmed COVID-19 were admitted but none of them died. Table 1 summarises the data about COVID-19-related admissions and deaths.

Table 1.

COVID-19-related admissions and deaths at the Royal Liverpool University Hospital between 1 March 2020 and 30 March 2021

All patients Patients with learning disabilities
Number of COVID-19-related admissions3,05365
Number of COVID-19-related deaths80613
Number of admissions of people aged over 85 years with confirmed COVID-194864
Number of COVID-19-related deaths in people aged over 85 years2250

COVID-19 = coronavirus disease 2019

Deaths of patients with learning disabilities

Table 2 shows the number of deaths of patients with learning disabilities at the Royal Liverpool University Hospital in the five years preceding the study. The data show that there was no significant increase in the number of deaths of people with learning disabilities at the hospital during the first 13 months of the COVID-19 pandemic compared with previous years.

Table 2.

Number of deaths of patients with learning disabilities at the Royal Liverpool University Hospital in the five years preceding the study

Financial year (1 April to 31 March) Number of deaths
2016-178
2017-1827
2018-1915
2019-2015
2020-2119

Between 1 March 2020 and 31 March 2021, 22 patients with learning disabilities died at the Royal Liverpool University Hospital, of whom 12 (55%) were male and ten (45%) were female. Nine (41%) of the 22 deaths were not related to COVID-19, seven of which were related to respiratory diseases other than COVID-19. Thirteen (59%) of the 22 deaths were related to COVID-19, with eight deaths (62%) occurring in male patients and five (38%) in female patients. Ten (77%) of those 13 people had contracted SARS‑CoV‑2 in the community, including from family members in three cases. The other three had contracted the virus while in hospital (nosocomial infection).

Among the 22 patients with learning disabilities who died at the hospital, 21 were identified as white British and one as being from a black, Asian and minority ethnic (BAME) group. Table 3 shows the age of death of these 22 patients and Table 4 shows their housing status. Six (46%) of the 13 patients with learning disabilities whose death was COVID-19-related lived with their family.

Table 3.

Age of death of the 22 patients with learning disabilities who died at the Royal Liverpool University Hospital between 1 March 2020 and 30 March 2021

Age range All deaths (n=22) COVID-19-related deaths (n=13)
18-49 years53 (23%)
50-69 years95 (39%)
70-85 years85 (39%)
Over 85 years00 (0%)

COVID-19 = coronavirus disease 2019

Table 4.

Housing status of the 22 patients with learning disabilities who died at the Royal Liverpool Hospital between 1 March 2020 and 31 March 2021

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Do not attempt cardiopulmonary resuscitation

A do not attempt cardiopulmonary resuscitation (DNACPR) order informs healthcare professionals that they should not perform cardiopulmonary resuscitation (CPR) on a person who has a cardiac arrest or dies suddenly (NHS 2021, Resuscitation Council UK 2022). Decisions about CPR should be made by the patient and/or their family in conjunction with the healthcare team and should be based on the person’s health, needs and wishes.

There are cases where the healthcare team may decide on behalf of a patient to put a DNACPR order in place (NHS 2021, Resuscitation Council UK 2022). A diagnosis of learning disability is never an acceptable reason to put a DNACPR order in place.

Among the 22 patients with learning disabilities who died at the Royal Liverpool University Hospital between 1 March 2020 and 31 March 2021:

  • Seven (32%) patients already had a DNACPR order in place when they were admitted to the ED.

  • Six (27%) patients had a DNACPR order put in place on admission to the ED.

  • Seven (32%) patients had a DNACPR order put in place later during their hospital stay.

  • Two (9%) patients died with no DNACPR order in place; one died shortly after being admitted following a ‘red standby call’ (the red colour code signals the patients whose condition is the most critical), the other died within three hours of admission.

Ceilings of care

The term ‘ceiling of care’ refers to the maximum level of care a patient is set to receive. It is used in particular in intensive care and palliative care settings. Determining a ceiling of care is a complex and sensitive decision that should be reached between the patient and/or their family and the healthcare team based on potential benefit (Smith and Nielsen 1999). For example, if a patient has no chance of recovering and regaining an acceptable quality of life, it may be appropriate to set their ceiling of care to ward-based care only if they deteriorate while in hospital, rather than escalating their care to an intensive treatment unit (ITU).

A ceiling of care was determined for 13 (59%) of the 22 patients with learning disabilities who died at the Royal Liverpool University Hospital between 1 March 2020 and 31 March 2021, either on admission to the ED or when they were moved to a ward. In all 13 cases, there had been a discussion about the ceiling of care between families and medical professionals. Nine (41%) of the 22 patients were reviewed by ITU consultants to establish whether there may be benefits in admitting them to the ITU and three (14%) were admitted to the ITU.

Learning disabilities acute liaison team

Learning disabilities acute liaison teams aim to support informed, equitable, efficient and effective care to adults with learning disabilities through partnership working. Since 2016, the learning disabilities acute liaison team at the Royal Liverpool University Hospital has been collating data and every death of a person with a learning disability at the hospital has been recorded in conjunction with the LeDeR Programme reporting process. A member of the team attends weekly ‘mortality Q&A’ meetings, since learning from the care provided to patients who die is an important aspect of clinical governance and quality improvement (CQC 2016).

Before the COVID-19 pandemic, the learning disabilities acute liaison team would see every patient with a learning disability on admission. During the pandemic, the team worked in a more remote manner to reduce the risk of infection, as per national guidance (NHS 2020). Staff on the wards and in clinical areas were aware that if specialist input was required, the team would provide support, either in person or over the telephone. The learning disabilities acute liaison service is available Monday-Friday from 9am-5pm.

Of the 22 patients with learning disabilities who died at the Royal Liverpool University Hospital between 1 March 2020 and 31 March 2021:

  • Ten were seen in person by the learning disabilities acute liaison team.

  • Seven were in COVID-19 wards and were not seen in person by the learning disabilities acute liaison team due to the risk of infection; the team reviewed their clinical notes on the IT system regularly.

  • Five were not seen in person or reviewed remotely by the learning disabilities acute liaison team because they died before the team could see or review them; four had been admitted following a ‘red standby call’ and one had been admitted on the weekend.

Further information

The Mortality Quality Assurance Group undertakes a structured judgement review of each death of a person with a learning disability at the hospital. This is required to ensure that learning from patient deaths is disseminated across the organisation. Structured judgement reviews were completed for 21 of the 22 patients with learning disabilities who died at the hospital between 1 March 2020 and 31 March 2021, with one review outstanding at the time of writing.

Table 5 provides further information about the deaths of patients with learning disabilities at the hospital in the five years preceding the study. Over that five-year period, the mean percentage of respiratory-related deaths (including COVID-19-related deaths) in patients with learning disabilities who had died at the hospital was 71%.

Table 5.

Further information about the deaths of patients with learning disabilities at the Royal Liverpool University Hospital in the five years preceding the study

Financial year (1 April to 31 March) Number of deaths Number of respiratory-related deaths (including COVID-19-related deaths) (% of all deaths) Death not reported to the LeDeR Programme
2016-178Data incomplete0
2017-182711 (41%)0
2018-191511 (73%)0
2019-201512 (80%)1
2020-211917 (90%)1

COVID-19 = coronavirus disease 2019; LeDeR Programme = Learning Disabilities Mortality Review Programme

Discussion

A higher prevalence of health issues in childhood, adolescence and adulthood may contribute to an elevated risk of mortality. In Liverpool, the number of people diagnosed with long-term conditions – specifically cardiovascular disease, respiratory disease, renal disease, diabetes, dementia and cancer – is above national levels (Liverpool CCG 2018). Morbidity and early mortality rates have been shown to be higher in people with learning disabilities than in the general population (Heslop et al 2013). While the COVID-19 pandemic has affected everyone, people with learning disabilities have been particularly vulnerable to its effects, whether physical, psychological or social (ONS 2021a). Challenges in terms of understanding the protective measures needed by people with learning disabilities in the context of the pandemic, compounded by existing challenges in obtaining an accurate clinical picture of that population, have further increased its vulnerability to COVID-19. Courtenay and Cooper (2021) emphasised that ‘reasonable adjustments should be made to ensure that information about the pandemic and risk of infection are accessible, and that practical support is provided to protect people and manage risks’.

Deaths of patients with learning disabilities

Among the 22 patients with learning disabilities who died at the Royal Liverpool University Hospital between 1 March 2020 and 31 March 2021, 13 (59%) had a COVID-19-related death. Of these 13 people, eight (62%) were male and five (38%) were female. This correlates with national findings, which showed that among people with learning disabilities with confirmed or suspected COVID-19, 59% were male and 41% were female (LeDeR Programme 2020).

The mean percentage of respiratory-related deaths (including COVID-19-related deaths) in patients with learning disabilities who had died at the hospital in the five years preceding the study was 71%, which is higher than the national proportion of 41% for that population (NHS England and NHS Improvement 2020). This is in line with findings by Merrick (2020), who showed that rates of deaths from respiratory conditions in Liverpool were 42% higher than national rates, even before the pandemic.

Age, ethnicity and housing status

PHE (2020) noted that the rate of COVID-19-related deaths in people with learning disabilities aged 18-34 years was 30 times the rate in the general population of the same age range. Conversely, in the general population, 47% of COVID-19-related deaths occurred in people aged 85 years and over, versus 4% in the learning disability population (LeDeR Programme 2020). In the study, of the 13 patients with learning disabilities whose death was COVID- 19-related, three (23%) were aged 18-49 years, five (39%) were aged 50-69 years and five (39%) were aged 70-85 years. There were no COVID-19-related deaths among those aged over 85 years.

Approximately 5% of the population of Liverpool City Region belong to BAME groups (Vaughn and Obasi 2020). Of the group of 22 patients with learning disabilities in the study, only one patient was from a BAME group. In England, the proportions of COVID-19 deaths in people with learning disabilities from BAME groups were about three times the proportions of deaths from all causes seen in these groups in corresponding periods of previous years (PHE 2020).

Almost half of the 13 patients with learning disabilities whose death was COVID-19-related lived with their family. This differs from the national trend, since 35% of people with learning disabilities in England who died from COVID-19 lived in residential care homes and 25% lived in supported living accommodation (LeDer Programme 2020). The ONS (2021b) found that socioeconomic and geographical circumstances and pre-existing health conditions made a noticeable difference to the risk of COVID-19-related death for people with learning disabilities.

Do not attempt cardiopulmonary resuscitation

A DNACPR order was already in place before admission for seven of the 22 patients with learning disabilities who died at the hospital. Six had a DNACPR order put in place on admission, seven had a DNACPR order put in place later during their hospital stay, and two died shortly after being admitted with no DNACPR order in place.

The LeDeR Programme (2020) found that 82% of people with learning disabilities who died from COVID-19 had a DNACPR order in place. LeDeR Programme reviewers felt that the majority of DNACPR orders (72%) had been correctly completed and followed, but that in some cases DNACPR orders had been put in place because the person had a learning disability.

Admission to the intensive treatment unit

Only three patients among the 22 patients with learning disabilities who died at the hospital were admitted to the ITU. Nationally, of people with learning disabilities who died from COVID-19, 76% received treatment in hospital and a small proportion (9%) received treatment in an ITU, high dependency unit or critical care unit (LeDeR Programme 2020). There have been many precedents of people with learning disabilities not receiving adequate care and dying avoidable deaths because their needs were not recognised and their treatment had not been appropriately escalated (Heslop et al 2013).

Limitations

One limitation of this study is its small scale, since it focused on the first 13 months of the pandemic and the number of people with learning disabilities was small. It is therefore difficult to generalise the findings. Some figures related to differing time periods, which could have skewed the data and meant that direct comparisons could not be made. The study only explored the deaths of people whose learning disability was recognised by healthcare services.

Implications for further investigation

No significant increase was seen in the number of deaths of people with learning disabilities at the Royal Liverpool University Hospital during the first 13 months of the COVID-19 pandemic compared with previous years. However, there may have been a reduction in hospital attendances and an increase of the number of deaths in the community. Exploring the deaths of people with learning disabilities in the Liverpool area more widely would enable this to be understood better. Furthermore, exploring the co-morbidities of patients with learning disabilities whose death was COVID-19 related could help explain why some of them died so rapidly.

National data show that 4% of COVID-19-related deaths in the learning disability population occurred in people aged over 85 years. However, there were no COVID-19-related deaths (and no non-COVID-19-related deaths) in that age category at the hospital. This could mean that there are no people with learning disabilities aged over 85 years living in the Liverpool area. More in-depth analysis is needed to understand the local learning disability population better.

Approximately 2% of the UK population have a learning disability, but only 1,479 people were flagged on the hospital’s electronic patient records system as having a learning disability. This could mean that a substantial number of people with learning disabilities living in the Liverpool area are not identified as such. The hospital and the local learning disability health trust, GP surgeries, social services and CCGs need to work together to ensure correct coding and exchange data.

The findings do not enable a discussion about what reasonable adjustments were (or were not) made to the care of patients with learning disabilities at the hospital during the pandemic. It would be interesting to explore the experiences of, and challenges encountered by, family members, friends, informal carers and hospital staff. Similarly, the findings do not enable a discussion about the end of life care received by patients with learning disabilities – for example, whether the hospital followed an end of life care pathway for people with learning disabilities, whether there had been advance care planning discussions, and whether staff in supported living accommodation had the training and skills to adequately support service users at the end of life. There is a need to work closely with people with learning disabilities, including listening to their life story, to support them to experience a good death.

In their response to the early phase of the pandemic, policymakers relied on predictive models. However, the use of such models needs to be supported by a timely analysis of information about the groups most at risk, including their underlying health conditions. It is essential that hospitals review the data so that work streams can be developed to enhance the quality of life of vulnerable patients and to equip staff caring for them with the right knowledge and skills.

Conclusion

This study exploring an acute hospital’s response to COVID-19 in the learning disability population has shown that there had been no significant increase in the number of deaths of people with learning disabilities at the hospital during the first 13 months of the pandemic. However, this may mean that fewer people with learning disabilities attended hospital and more died in the community. There is evidence from the literature that COVID-19 has disproportionately affected people with learning disabilities in terms of morbidity and mortality. It is important to understand the factors that may increase the risk of COVID-19-related death for people with learning disabilities better and to learn from the pandemic to mitigate their already increased risk of suboptimal health outcomes.

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