Public Health in the Emergency Department Series #3

Author: Olivia Villegas / Editor: Liz Herrieven / Codes:  / Published: 13/02/2024

Healthcare Inequalities and Learning Disabilities

This is the third blog in our public health series.

6 in 10 people with learning disabilities die before the age of 65, compared with 1 in 10 in the general population. We understand that this population has a unique set of health problems and challenges, and yet they are still subject to far more health inequalities compared to the general population, many of which are completely preventable.

With an estimated 1.5 million people living with a learning disability in the UK,¹ as healthcare professionals we will all care for patients with learning disabilities regardless of our specialty. I recently attended an RCEM event on caring for patients with learning disabilities and can honestly say it was one of the most eye-opening events Ive attended. It was one of those days where each speaker had a unique perspective on the issue and something novel to add, but whilst I was grateful for the new knowledge, I was taken aback by the degree of health inequalities experienced by this at-risk and often vulnerable group. Since then, there has been an insightful blog published on Autistic Spectrum Condition in the ED which is a fantastic addition to the blogs on Learning Disability and Down Syndrome for Emergency Physicians. But of course, this is a public health blog! So, here I will be considering learning disabilities through the public health lens of health inequality. By exploring how this inequality can lead to early and preventable deaths, the blog will unpick some of the wider health inequalities which can impact the care of people with learning disabilities within our Emergency Departments, and how we can reduce them.

So, why do healthcare inequalities exist for people with Learning Disabilities?

Terminology

Firstly, lets consider the importance of terminology. Learning Disabilities is a catch-all phrase for a number of conditions, sometimes bound by symptoms and syndromes we recognise, and some within syndromes that are yet to be named. Learning disabilities are lifelong, and with no defined cure. When we talk about people with learning disabilities we acknowledge that most will have a degree of cognitive impairment and many have visual and hearing impairments. This differs from people with learning difficulties, such as dyslexia, where cognition is unaffected. By getting this wrong, we are discrediting the real differences that exist amongst these populations and can fail to recognise their actual care needs as well as abilities this is the first source of inequality.

Communication

Secondly, communication. One unifying feature of people with learning disabilities is the challenge they may face when communicating; that is listening, processing, conveying, understanding and retaining information around them. Imagine that you are in foreign country trying to access healthcare and not being able to speak the local language or properly convey your symptoms to a physician. How daunting it would be not to understand the processes and what is about to happen to you (especially if you arent a health professional!). With communication imperative to every ED consultation, as clinicians we must recognise that an individuals means of communication can vary between patients and between situations. It may be that we have to adapt our communication style or method and make adjustments to our normal practices to make information accessible and get the right outcome for our patients.

Access to services

By the time our patients reach ED they have been able to access secondary care. But whilst many people with learning disabilities are recognised by health, educational and social care databases, there are some who are not. Some may not be able to pick up the phone to make a GP appointment, or phone to ask for advice and convey what their symptoms are. People are also more likely to miss out on screening, health promotion and scheduled health checks compared to the general population. Additional barriers are created when systems do not communicate well and therefore individuals can miss out on the care or services that they need.

Societal attitudes and stereotyping

People with learning disabilities are disadvantaged by society in a number of ways. Some barriers exist on the side of the person with a learning disability but in many cases, the barriers facing these individuals are on the side of the provider, often because of societal attitudes and biases towards people with learning disabilities. We all strive to do our best within often challenging work environments, but sometimes societal norms and cultures can subconsciously impact on the way we view individuals with an LD and further disadvantage them. For example, it may be that we repeatedly discharge a frequent attender with abdominal pain and normal blood tests, putting their symptoms down to their LD, and in fact missing their undertreated chronic constipation. This phenomenon is widely known as diagnostic overshadowing whereby a persons symptoms of illness are mistakenly attributed to a behavioural problem or to their underlying learning disability. (Editor: Every year, people with LD die as a result of constipation yes, constipation! That has to change) It may also be that we mismanage patients who we deem to exhibit challenging behaviour, and in some cases sedate them inappropriately to control this behaviour. By automatically labelling an LD patients agitation as challenging behaviour we are adding a negative stereotype to them, when in fact they may just be excited, nervous or scared- like lots of our patients are! All behaviour is a form of communication and we have to work to translate it.

Failure to make reasonable adjustments

Reasonable adjustments are a legal requirement to make sure to make sure health services are accessible to people with learning disabilities. They are legally required as per the Equality Act 2010² and describe ways in which disadvantage can be overcome and avoided.

Firstly, failing to identify people with learning disabilities means that they are much less likely to be identified as needing reasonable adjustments, creating scope to worsen healthcare inequalities. Secondly, failing to make reasonable adjustments in light of literacy, communication or physical difficulties faced by people with an LD can further disadvantage them. This is often created by inflexible organisational policy and procedure, and within the recent Learning Disability Mortality Review (LeDer),³ organisational systems and processes were the most commonly reported area of problems with quality of care in people with LD. However, these inflexibilities can also be because of our individual practices within the ED and there are ways in which small adaptations to our consultation can be the reasonable adjustments that are needed.

So, what does the data tell us about healthcare inequalities?

Health Outcomes

Much of what we understand about health inequalities in this population comes from research conducted by Mencap,⁴ a charitable organisation for learning disabilities, and data derived from LeDer.³ LeDeR is a programme which aims to improve care, reduce health inequalities, and prevent premature mortality of people with a learning disability and autistic people by reviewing information about the health and social care support people received prior to their death. Compared to people without a learning disability, people with a learning disability are more likely to have poorer physical health, poorer mental health and significant health inequalities. Overall, people with learning disabilities have worse health outcomes than those without.

According to Mencap⁴, individuals with a learning disability are more likely to experience the following health issues than the general population:

• Mental health issues (8.4% more common in patients with an LD compared to those without)
• Weight issues (more likely to be either overweight or underweight than the general population)
• Epilepsy (more likely to be difficult to control and more likely to die from SUDEP)
• Dementia

As well as high incidences of cardiovascular and respiratory disease, we also know that people with learning disabilities are more likely to suffer from visual impairments and hearing impairments, musculoskeletal problems and poor oral hygiene, which can itself increase the risk of aspiration pneumonia.⁵ This indicates that people with learning disabilities continue to experience suboptimal health compared to the general population. Importantly, constipation has been recognised as a potentially life-threatening issue for many people with learning disabilities and has prompted the NHS Constipation Campaign.⁶ This may be linked to the significant overprescribing of psychotropic drugs in this population, which commonly cause constipation alongside an abundance of other side-effects. This has prompted the NHS Stomp Campaign,⁷ which stands for Stopping Over Medication of People with a learning disability, autism or both.

The main findings from the LeDer report are as follows:

• Peoplewith learning disabilities are likely to die younger than people without. The average age at death is significantly less than people without a learning disability (on average 62 years compared to 82.7 in the general population).
• Concerningly, 42% of these deaths were deemed to be completely avoidable
• The rate of deaths due to COVID amongst people with LD were much higher than the general population.
• They are much more likely to die in hospital than people without a LD.
• Apart from bowel cancers, cancers are less prevalent in the LD population compared to the general population (this may be in part due to life expectancy being lower).
• DNACPR processes and documentation were correctly used only 63% of the time.

It is clear that people with learning disabilities are subject to greater morbidity and mortality than the greater population. Whilst this may be largely to do with their underlying health condition, it is thought that a proportion of this is due to the avoidable health inequalities that exist today. The fact that in almost 40% of cases, DNACPR processes were not followed correctly is a possible example of discriminatory attitudes leading to suboptimal care for this population.

Health Determinants

Social Determinants of Health

LeDer found that 25% of deaths in people with LD occurred in people in the most deprived neighbourhoods, compared to 10% in the least deprived. This group also have a much higher rate of hospital admission for issues that can normally be managed in primary care and are less likely to engage in screening programmes.⁸

We know that people with a learning disability also have fewer opportunities for education and employment, with the most recent figures showing that employment rates amongst those with a learning disability have fallen to 4.8%, and this is lower amongst females than males.⁹ Additionally, they are more likely to experience loneliness and social isolation compared to others.¹⁰ These issues mean that people with a learning disability are unable to benefit in the same way as others from the factors that influence health, known as the social determinants.¹¹ These may also put them at more risk of violence and even gang exploitation.

What next?

The Emergency Department can sometimes be a difficult place to think about health inequalities and thinking about the bigger picture is often impossible in this fast-paced environment. At Government level, policy and national programmes have been established in a push to reduce health inequalities for people with a learning disability and improve care outcomes.¹² Tackling learning disabilities is also one of the clinical priority areas in the NHS Long Term Plan,¹³ committing the NHS to tackling the causes of morbidity and premature death for people with these conditions. However, on an individual level, there are some simple things that we can implement into our practice and be aware of which could be truly life-saving for someone with a learning disability. There are a few excellent eLearning resources available which you can find here that outline some of the main issues for us as clinicians caring for people with learning disabilities and how to tackle them.

• Learning Disabilities in the ED¹⁴
• Defining learning disability¹⁵
• Down Syndrome for Emergency Physicians¹⁶
• Autism Spectrum Condition in the ED¹⁷

We know that many deaths in the LD population are avoidable or premature and that people with learning disabilities are much more subject to healthcare inequality than those in the general population. Getting the terminology right is the first step to showing that you understand and respect that this may be a consultation in which you will have to make reasonable adjustments.

Medical information can be complex at the best of times. Follow accessible information standards to ensure that the information you give people with a learning disability is easy to read, understand and retain. For those who dont read or cant see, can you present the information in another way? A lack of reasonable adjustments can be a barrier to accessing adequate healthcare and to equal healthcare read about some simple adjustments that can be made to your practice here.¹⁸ Adapting your communication style can be an example of this, and always take families and carers seriously they know when their relative is unwell!

Lastly, consider the way in which cultural stereotypes may negatively affect the way we treat our patients are there any biases that we hold consciously or subconsciously towards these individuals? Avoiding diagnostic overshadowing can save lives.

References

1. Disability. The lives of disabled people in the UK, including disparities, outcomes for disabled people and impact on day-to-day activities. Gov.UK
2. Equality Act 2010. Duty on employers to make reasonable adjustments for their staff. Government Equalities Office.
3. LeDeR Annual Report Learning from Lives and Deaths: People with a Learning Disability and Autistic People. King’s College London, 2022.
4. Health inequalities. Mencap.
5. Learning from lives and deaths People with a learning disability and autistic people (LeDeR). Annual report and action from learning reports 2021/22. NHS England, 2021.
6. Constipation resources for people with a learning disability. Guidance. NHS England, 2023.
7. Stopping over medication of people with a learning disability, autism or both (STOMP). NHS England.
8. Health and Care of People with Learning Disabilities: 2017-18. NHS Digital, 2019.
9. Employment Rates for People with Disabilities 2021-22. Base.
10. Pelleboer-Gunnink HA, van Weeghel J, Embregts PJCM. Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination. Disabil Rehabil. 2021 Feb;43(4):489-497.
11. Improving public health and reducing health inequalities for people with learning disabilities. BJN, 2023.
12. Parkin E. Learning disabilities: health policies. Research Briefing. House of Commons, 2023
13. NHS Long Term Plan
14. Herrievan E. Learning Disabilities in the ED. RCEMLearning, 2018.
15. Defining Learning Disability, Don’t Forget the Bubbles, 2021.
16. Herrievan E. Down Syndrome for Emergency Physicians. RCEMLearning, 2018.
17. Kam J, Herrievan E. Autism Spectrum Condition in the ED. RCEMLearning, 2023.
18. Treat me well. Reasonable adjustments for people with a learning disability in hospital. Mencap.