People with a learning disability – of which there are more than one million people in England (2% of the adult population)- are a high-risk group in relation to Covid-19.
In February 2021, the Learning from Death Reviews programme (NHSE, 2021) reported that since February 2020, 1,405 people with a learning disability had died from Covid-19 in England. However, the true number is probably far higher because of gaps in learning disability registration in general practice.
Public Health England (PHE, 2020) suggest that people with learning disabilities are at greater risk of Covid-19 due to being at a higher risk of some health conditions (for example, diabetes); being more likely to live in shared accommodation or care homes, difficulty in socially distancing if living in the community and also being dependent on home and/or social care for day-to-day support.
Adults with learning disabilities and Covid-19 risks
Williamson et al (2021) conducted a population based observational cohort study using the OpenSAFELY platform to assess the association between learning disability and risk of hospital admission and death from Covid-19 in England among adults and children.
The study was conducted on behalf of NHS England and patient data was obtained for more than 17 million people registered with a general practice in England, and utilised from primary care linked to secondary care and mortality records in England. It should be noted that the dataset analysed within the OpenSAFELY platform is based on 24 million people currently registered with general practice surgeries that use TPP SystmOne software, this accounts for approximately 40% of the population in England.
There were two cohorts of study participants which were representative of each of the pandemic waves, see summary of comparative data in tables below. The data highlights the increase in association between people with a learning disability and risk of hospital admission and death in comparison to people without a learning disability.
Wave 1 data
Number of people registered on TPP software between 1 March 2020 until 31 August 2020 (% of the population) Number of people registered on TPP software between 1 March 2020 until 31 August 2020 (% of the population) >16 years on the learning disability register 90,307 >16 years on NOT the learning disability register 148,905 Covid-19 related hospital admission 538 (0.6%) Covid-19 related hospital admission 29,781 (0.2%) Died as a result of Covid 222 (0.25%) Died as a result of Covid 13,737 (0.1%) Non-Covid deaths 602 (0.7%) Non-Covid deaths 69,837 (0.5%)
Wave 2 data
Number of people registered on TPP software between 1 September 2020 until 8 February 2021
(% of population) Number of people registered on TPP software between 1 September 2020 until 8 February 2021
(% of population)>16 years on the learning disability register 91,358 >16 years on NOT the learning disability register 157,632 Covid-19 related hospital admission 1,004 (1.1%) Covid-19 related hospital admission 63,053 (0.4%) Died as a result of Covid 286 (0.3%) Died as a result of Covid 19,778 (0.1%) Non-Covid deaths 524 (0.6%) Non-Covid deaths 58,021 (0.4%)
Children with learning disabilities and Covid-19
Williamson et al (2021) also explored the figures in relation to children (people <16 years) and determined that there were 9,298 children on the learning disability register during wave 1 with five or fewer (≤0.05%) Covid-19 related hospital admissions (the exact figure is not available due to data protection).
During wave 2 there were 9,429 children on the learning disability register, with 20 (0.2%) hospital admissions related to Covid-19. Across both waves there were five or less children on the register and five or less children not on the register who were recorded to have died as a result of Covid-19. In addition, there were nine deaths not associated with Covid-19 among children on the register, and 151 deaths not associated with Covid-19 in relation to children not on the register. Overall the study determined that the number of deaths as a result of Covid-19 was low among the child population.
Implications for practice
People with learning disabilities face a number of inequalities associated with access to healthcare, these include a lack of accessible transport links, not being identified as having a learning disability on the general practice register, staff having little understanding about learning disability, staff failing to recognise that a person with a learning disability is unwell, failure to make a correct diagnosis, anxiety or a lack of confidence for people with a learning disability, lack of joint working from different care providers, not enough involvement allowed from carers and inadequate aftercare or follow-up care (Mencap, 2021).
In addition, the pandemic has exposed concerning attitudes and prejudices about the value of the lives of people with learning disabilities, as the utilisation of DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) orders for people with life threatening infections resulted in fear and uncertainty among the families and support structures of people with learning disabilities (Courtenay and Cooper, 2021).
NIHR (2020) research shows that people with learning disabilities are five times higher than the general population to be admitted to hospital as emergencies for conditions such as respiratory or urinary infections. Whilst there is clear evidence that the annual health checks introduced in 2008 and undertaken by GPs can improve the health and care of people with learning disabilities, there is a need for better primary care (NIHR, 2020). As a learning disability is defined as being a significantly reduced ability to understand new or complex information and learn new skills and a reduced ability to cope independently (PHE, 2020), using ‘easy read’ on forms or utilising advocacy services in all areas of healthcare could aid the person with learning disabilities in accessing effective healthcare (NIHR, 2020).
People with learning disabilities are likely to have had difficulty recognising symptoms of Covid-19, or following Government advice about getting tested, self-isolation, social distancing and infection prevention and control (Courtenay and Perera, 2020). It may also be more difficult for people caring for them to recognise the onset of symptoms if these cannot be communicated. With this in mind it is important to note that people with learning disabilities will have unique needs and preferences (DHSC, 2021). As detailed above, they are more likely to need support in healthcare therefore they will need additional support to understand the current measures, and any changes to their care and support provision. Their care and support should continue to be given in the least restrictive way possible and continue to maximise independence wherever possible (DHSC, 2021). It is imperative that those responsible for the care of people with learning disabilities ensure that they practice person centred care and that their communication style is appropriate to the needs of the individual. It is also important that greater efforts are made in general practice to ensure that people with learning disabilities are recorded on the register and that they receive (and are able to understand) information regarding vaccination, as this will aid in reducing health inequality and the effects of Covid-19 (Mencap, 2021).
Conclusion
Healthcare professionals must work together to reduce the health inequalities exposed and amplified by the pandemic towards people with learning disabilities. This must include additional training of all healthcare staff regarding the needs of people with learning disabilities and the health inequalities that they face.
The large scale study by Williamson et al (2021) highlights that people with a learning disability have an increased risk of hospital admission and death from Covid-19, therefore prompt access to Covid-19 testing, support and healthcare is warranted for this vulnerable group. There is also justification for them to be prioritised for Covid vaccinations and other targeted preventive measures should be considered. Ultimately equality in healthcare is vital, as people with learning disabilities have the same rights in relation to good health and safety from harm as everyone else.
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