Common health issues in people with a learning disability: management strategies

People with a learning disability often have poorer physical and mental health than the general population, and there are certain health problems that can be more complex in this population due to genetic and lifestyle factors. They are also underserved in access to healthcare and experience high levels of health inequality.

Research has shown that, compared with the general population, people with a learning disability are three to four times as likely to die from an avoidable medical cause of death. Most of the avoidable deaths in people with a learning disability were because timely and effective treatment was not given.¹

It is one of the many reasons why it is important that people with a learning disability have an annual health check and health action plan to not only identify any medical problems but also to prevent other health issues from worsening.

Here are some common health conditions that health and social care professionals should keep on their radar.

Epilepsy and learning disability

Epilepsy is one of the most common serious neurological conditions globally, with around 626,000 people affected in the UK. About one in five people with a learning disability will be diagnosed with epilepsy in their lifetime.²

The condition is made more complex in this group as it is less likely to be well controlled due to lack of regular reviews and comorbidities such as higher rates of high cholesterol, type 1 diabetes, osteoporosis and migraine than control groups.³

In addition, there is a greater risk of polypharmacy and neuropsychiatric side effects of drugs. Assessment can also be complicated, meaning there is a higher chance of misdiagnosis due to misattribution or misinterpretation of other physical health conditions, psychiatric/psychological presentations, and behavioural disturbances.⁴

Epilepsy deaths have also been flagged as a significant concern in the Learning Disabilities Mortality Review (LeDeR), which investigates deaths in people with learning disabilities. In the latest report, epilepsy was the second most frequently reported potentially treatable cause of death.

It is suspected that approximately 50% of epilepsy-related deaths are attributed to sudden unexpected death in epilepsy (SUDEP), and over half of these could have been prevented.⁵

NICE quality standards state that each person with epilepsy should have a comprehensive epilepsy care plan that covers their care and treatment needs, as well as how to reduce risks and improve their safety. This should involve the
healthcare professional and any care teams or care organisations who support the person, as well as the person themselves and their family members.²

Risk assessment should be personalised, and each risk should be considered individually. Where available, risk assessments should be person-centred and include standardised, semistructured, evidence-based tools such as the
Clive Treacey Safety Checklist.

This was recently launched by NHS England and SUDEP Action, and named after Clive Treacey, who died from SUDEP in 2017. It includes measures that help ensure people with epilepsy have up-to-date risk assessments, that their concerns are heard, and that staff who work with them are trained appropriately.⁶

Epilepsy can also cause poor mental health (including mood and anxiety disorders), difficulty sleeping and some impairment in cognitive function and memory.

Constipation and learning disability

People with a learning disability are more likely to suffer from constipation than people without learning disabilities. They are also more likely to have unusual presentations and may not be able to communicate symptoms very well, which can lead to misdiagnosis and avoidable emergency admissions to hospitals.

suggests prevalence ranges from 33-50%, and this figure increases to nearly 60% in people with profound and multiple learning disabilities (PMLD). The LeDeR report also found that in 23% of deaths, constipation was identified as a long-term health problem.⁷

This is why it is important that carers and anyone supporting a person with a learning disability are aware of the higher risks of constipation and how to manage the condition.

It can be difficult to identify and diagnose constipation in a person with learning disabilities. This then leads to a vicious cycle where constipation worsens, culminating in a large (often loose) stool, often thought to be diarrhoea. Laxatives are therefore stopped to prevent stool from accumulating again.

Over time, the bowel becomes hugely distended, storing very large volumes of stool, and the problem becomes very uncomfortable (and risky) for the sufferer. Deaths have occurred because of bowel ischaemia and bowel perforation.

Diagnostic overshadowing also means that symptoms of constipation can be overlooked and deemed to be behavioural issues or a personality change.

For this reason, NHS England recently launched a new toolkit to educate people with learning disabilities, healthcare professionals, and paid and unpaid carers about the signs of severe constipation, which can be life-threatening if it is not treated. The campaign was co-developed with people with learning disabilities and was launched alongside a new animation, posters for use in different care settings and toolkits for people with learning disabilities, carers and healthcare professionals.⁷

Diabetes and learning disability

Health problems such as diabetes can start at a much earlier age for people with a learning disability and require regular attention for effective management. People with a learning disability are also more likely to be admitted to hospital for diabetes-related conditions.⁸

Although the prevalence of diabetes in people with a learning disability is unknown, recent data indicate it is around 10% – nearly double the rate of the general population for both type 1 and type 2 diabetes. There are also higher rates of obesity seen in people with a learning disability compared to those without, which is a risk factor for type 2 diabetes.⁹

As research in this area is scarce, many health providers do not have a strategy to address diabetes management in populations with diabetes and learning disabilities.

The quality of diabetes care and education for individuals with all disabilities is also often poor. Gaps in education on diabetes self-management in this population are attributed to reduced cognitive ability, short consultations and communication difficulties, including inadequate communication by healthcare professionals and poor communication skills in patients.

In addition to regular monitoring at home, people with a learning disability will need regular blood tests and foot and eye checks. All these are important because poorly controlled diabetes can lead to hospitalisation, amputations or sight loss because of damage to blood vessels.¹⁰

Providing reasonable adjustments for those with diabetes not only improves diagnosis and detection of the condition, but also reduces complications arising from diabetes, e.g. amputations, diabetes-related A&E attendances, visits to the GP and missed appointments.¹¹

A recent Lancet study¹² suggests the following adjustments for diabetes review clinics and diabetes health checks in people with disabilities:

• Consider a meet-and-greet first appointment with the healthcare team as an initial step to get to know the staff and provide photos of the healthcare team
• For continuity of care, make reasonable adjustments so that the person is seen by the same doctor
• Allow extra consultation time for people with disabilities and their caregivers, and ensure reception staff offer double appointments where possible
• Ensure that the person is always accompanied by a caregiver or someone familiar to advocate for them during the consultation
• Build awareness of the disability with members of the healthcare service, including the reception staff and nursing staff
• Use and adapt resources to provide education for various procedures, such as monitoring blood glucose, blood pressure, height and weight.  Such resources could include a story or an online video about a visit to the doctor or nurse
• Promote patient-centredness, mitigate barriers to booking follow-up appointments, reduce time spent in waiting rooms, improve accessibility of clinic rooms (especially for physical examinations), and adapt language when giving information.

The paper concluded that a large proportion of managing any type of diabetes relies heavily on the individual making appropriate, health-conscious decisions on a day-to-day basis, such as being careful with their diet, taking
medication either as pills or by injections, and monitoring their blood sugar.¹²

It is therefore imperative that people with learning disabilities fully understand and are involved in their own condition and treatment.

Positive and consistent engagement with healthcare professionals in the education of diabetes self-management is associated with improved health outcomes, reduced diabetes complications, and improved quality of life.

It added that if there is no active commitment in managing the health of people with diabetes and disabilities from all parts of the healthcare structure, then the risk of serious and potentially fatal complications will increase.

Dementia and learning disability

People with learning disabilities are more likely to develop dementia and it is particularly common in those with Down’s syndrome with an early and more rapid onset in this group.

For people with more complex learning disabilities, the initial symptoms are also likely to be less obvious so can go unrecognised, impacting quality of life, life expectancy and experience of services.¹³

Estimates of the prevalence of dementia in people with learning disabilities vary, in part because there has not always been good recognition, assessment and diagnosis.¹⁴

However, some analysis suggests that people with a learning disability are five times more likely to develop dementia as they get older compared to the general population.¹⁵ It is also recommended to assess every adult with Down’s syndrome by the age of 30 to establish a baseline against which to compare future suspected changes in functioning. It is worth considering screening all adults with Down’s syndrome over 40 regularly because of the increased risk of dementia and the prevalence of undetected but treatable illnesses. This should link to the person’s health action plan.¹⁶

There is no definitive ‘test’ for dementia. Its presence is a matter of eliciting a clinical history suggesting dementia and establishing evidence of change in function from a known baseline and excluding other diagnoses that may mimic dementia.¹⁶

A simple clinical assessment asking carers if there have been any changes in behaviour, suggesting a deterioration of memory, communication skills, disorientation, decline in levels of self-care, difficulties in following routine, epilepsy, dysphagia or falls, should be sufficient to consider an assessment to exclude dementia.¹⁶

Currently, there is no cure for dementia, and the aim of management is to provide symptom control. There are both pharmacological and non-pharmacological treatments available for this.

Dysphagia and learning disability

Learning disability can lead to difficulties with communication and swallowing (dysphagia), which can cause three sorts of problems: choking, chest infections from food or drink ‘going down the wrong way’ into their lungs, and malnutrition.¹¹

Swallowing problems can be managed in several ways, and speech and language therapy (SALT) is a crucial service that promotes inclusive communication, accessible information, and safe eating and drinking for people with learning disabilities. These include choosing appropriate foods and learning about the importance of eating slowly and chewing properly.¹¹

Management by SALT teams should be done in collaboration with care homes or community organisations where appropriate.¹⁷ Care homes should also be informed about the number of staff who are required to be able to identify the
signs and symptoms of swallowing disorders.

Staff should then be trained on how to optimise nutrition and hydration for their residents with dysphagia, with one key worker named to champion appropriate dysphagia assessment and management.

Pharmacists may also help consider liquid formulations or alternative routes of administration. An occupational therapist may advise on feeding implements and adapted cutlery, and a dietician may advise on nutritional intake.

The signs of dysphagia include: coughing or choking when eating or drinking, bringing food back up sometimes through the nose, a sensation that food is stuck in your throat or chest and persistent drooling of saliva. However, many of those who aspirate do so silently (without any of the above signs), which may go unnoticed and have chronic health implications.¹⁸

Adverse outcomes may be more likely in people with learning disabilities who are unable to verbally communicate their dysphagia-related experiences, as they are less likely to receive the support they need to eat and drink safely.19
Having a learning disability may also make it more difficult to learn compensatory strategies
and retain skills, which may also increase the risk of adverse events.¹⁹

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Resources

• SUDEP and Learning Disability: https://sudep.org/epilepsy-safety/learning-disability-resources/
• The Clive Treacey Safety Checklist: https://www.england.nhs.uk/midlands/wp-content/uploads/sites/46/2023/11/Clive-Treacey-Safety-Checklist.pdf
• Identifying people with a learning disability and diabetes: https://www.diabetes.org.uk/for-professionals/improving-care/good-practice/for-people-with-learning-disability
• Dysphagia in people with learning difficulties: https://www.gov.uk/government/publications/dysphagia-and-people-with-learning-disabilities
• NICE guidance on constipation: https://www.nice.org.uk/guidance/cg99
• Review of constipation in people with a learning disability and autistic people: https://www.scwcsu.nhs.uk/documents/66-summary-report-review-of-constipation-in-people-with-a-learning-disabilityand-autistic-people-v1-1/file
• Bowel Interest Group – Dying for a poo: https://bowelinterestgroup.co.uk/news/dying-for-a-poo/
• Constipation awareness video: https://www.youtube.com/watch?v=R16WY6MLBBU
• Supporting Derek: https://dementia.mvm.ed.ac.uk/
• Alzheimer’s Society – Easy Read: https://www.alzheimers.org.uk/get-support/publications-factsheets/accessible-resources/easy-read
• National Development Team for Inclusion – Dementia resources: https://www.ndti.org.uk/resources/making-reasonable-adjustments-to-dementia-services-for-people-with-learning

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References

1. National Institute for Health and Care Excellence. NICE impact: People with a learning disability. Available at: https://www.nice.org.uk/about/whatwe- do/into-practice/measuring-the-use-of-nice-guidance/impact-of-our-guidance
2. Epilepsy Action. Information for carers. Available at: https://www.epilepsy.org.uk/living/for-carers
3. Learning Disability Today (2023) Charities call for more social support for people with epilepsy.
Available at: https://www.learningdisabilitytoday.co.uk/news/charities-call-for-more-social-support-for-people-with-epilepsy/
4. Learning Disability Today (2023) New guide on managing epilepsy safely in people with neurodevelopmental disorders. Available at: https://www.learningdisabilitytoday.co.uk/news/new-guide-on-managing-epilepsy-safely-in-people-with-neurodevelopmental-disorders/
5. NHS England. Learning from lives and deaths -People with a learning disability and autistic people (LeDeR). Available at: https://leder.nhs.uk/
6. NHS England (2023) Clive Treacey checklist guidance. Available at: https://www.england.nhs.uk/midlands/wp-content/uploads/sites/46/2023/11/Clive-Treacey-Checklist-Guidance.pdf
7. NHS England. Let’s talk about constipation: Leaflet for carers. Available at: https://www.england.nhs.uk/long-read/lets-talk-about-constipation-leaflet-for-carers/
8. Dunn, K., Hughes-McCormack, L., & Cooper, S. A. (2018) Hospital admissions for physical health conditions for people with intellectual disabilities: Systematic review. Journal of Applied Research in Intellectual Disabilities, 31(1), 1-10. https://doi.org/10.1111/jar.12328
9. NHS England (2017) RightCare pathway: Diabetes reasonable adjustments for people with learning disabilities. Available at: https://www.england.nhs.uk/rightcare/wp-content/uploads/sites/40/2017/11/rightcare-pathway-diabetes-reasonable-adjustments-learning-disability-2.pdf
10. Shireman, T. I., Reichard, A., & Nazir, N. (2010). Quality of diabetes care for adults with developmental disabilities. Disability and Health Journal, 3*(3), 179-185. https://doi.org/10.1016/j.dhjo.2009.11.004
11. Public Health England (2017) Common health problems in learning disabilities: Guidance for social care staff. Available at: https://assets.publishing.service.gov.uk/media/5a81feaa40f0b62305b91ead/Common_health_problems_in_learning_disabilities_guidance_for_social_care_staff.pdf
12. Ng, S. M. (2023). An inclusive approach to people with disabilities in diabetes care and education. The Lancet Diabetes & Endocrinology, 11(1), 8-10
13. University of Bristol (2020) Dementia in people with learning disabilities. LeDeR Programme.

14. Public Health England (2018) Dementia and people with learning disabilities: Reasonable adjustments. Available at: https://www.gov.uk/government/publications/people-with-dementia-and-learning-disabilities-reasonable-adjustments/dementia-and-people-with-learning-disabilities
15. Strydom, A., Chan, T., King, M., Hassiotis, A., & Livingston, G. (2013). Incidence of dementia in older adults with intellectual disabilities. Research in Developmental Disabilities. 34*(6), 1881-1885. https://doi.org/10.1016/j.ridd.2013.03.019
16. NHS England (2018) Identifying and managing the health needs of people with a learning disability: A guide for general practitioners. Available at: www.england.nhs.uk/north/wp-content/uploads/sites/5/2018/12/IDD-GP-Guide-short-v1.9.pdf
17. Learning Disability Today (2023) Common conditions made complex: Dysphagia. Available
at: https://www.learningdisabilitytoday.co.uk/topic/health/common-conditions-made-complex-dysphagia/
18. NHS Inform. Dysphagia (swallowing problems). Available at: https://www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/dysphagia-swallowing-problems
19. Public Health England (2019). Health inequalities: Dysphagia. Available at: https://fingertips.phe.org.uk/documents/Health_inequalities_dysphagia.pdf