Never attribute new symptoms to the learning disability itself. Always investigate as you would in any patient. The most common cause of preventable death in LD is an unrecognised or ignored physical illness.

Behaviour change in a non-verbal patient is almost always trying to communicate something — typically pain, discomfort, fear, or distress. Start by investigating physical causes before considering behavioural or psychiatric explanations.

Up to 70% of people with severe LD have chronic constipation. It causes pain, behaviour change, vomiting, and UTI. Always enquire about bowels. Low threshold to treat and monitor.

10–20% of adults with Down syndrome develop hypothyroidism. TFTs should be checked annually. Also screen for Alzheimer's dementia from age 40 — it is 3–5x more common and presents earlier in this group.

A patient may have capacity for some decisions (choosing what to eat) but not others (consenting to surgery). Always assess capacity for the specific decision at hand. Document each assessment separately.

Under the Equality Act 2010, NHS organisations must make reasonable adjustments. This includes double appointments, easy-read materials, quiet waiting areas, and allowing carers to attend. Failure to adjust is unlawful discrimination.

Up to 30% of people with LD are prescribed antipsychotics, often for behaviour rather than psychosis. STOMP (Stop Over-Medicalisation of People with LD) aims to reduce this. Review antipsychotics at every medication review and challenge if no clear psychiatric indication.

Aspiration pneumonia is a leading cause of death in people with LD, especially those with cerebral palsy or severe LD. Consider SALT (Speech and Language Therapy) referral for swallowing assessment. Review thickeners and feeding strategies regularly.

Epilepsy affects 25–30% of people with LD (vs 1–2% general population). Ensure annual bloods for AED monitoring, review seizure diaries, and check for drug interactions. Buccal midazolam rescue plans should be in place for all patients with known prolonged or cluster seizures.

The LeDeR (Learning from Deaths of people with LD) programme has repeatedly found that deaths are often premature and avoidable. Key themes: delays in diagnosis, poor communication, inadequate reasonable adjustments, and lack of proactive monitoring. Every avoidable death is a failure of the system.

Every patient with LD should have an up-to-date hospital passport. It tells secondary care: how to communicate, what the person's baseline is, what medications they take, what their triggers and likes/dislikes are. Send it with every referral. Review and update it at every annual health check.

People with LD are often on multiple medications — antiepileptics, antipsychotics, laxatives, PPIs. Review at every annual health check. Anticholinergic burden is often high. Antipsychotics should be for specific psychiatric indications, not behaviour management. Deprescribe proactively where safe.

MCA 2005 protects both patients and clinicians. Document all capacity assessments clearly. When a patient lacks capacity: make a best interests decision with appropriate involvement. For major decisions with no family or friends, an Independent Mental Capacity Advocate (IMCA) must be involved.

Book double appointments as standard for all patients with LD. People with LD need more time to process information, ask questions, and feel comfortable. Rushing increases anxiety, reduces communication quality, and means important things get missed. If your clinical system doesn't flag this automatically — flag it yourself.

Easy-read materials (pictures with simple text) improve understanding, consent, and health outcomes. They are required under the Accessible Information Standard — not a nice-to-have. Use them routinely for all health information. Standard medical letters are confusing and frightening for many patients with LD. Easy-read reduces anxiety and improves engagement.

Carers provide vital collateral history and know the patient better than almost anyone. Use them — but always address the patient directly first. Check privately whether the patient is happy for the carer to be present. A good carer supports autonomy; a controlling one can undermine it. Read the room — and the safeguarding possibilities.

Attributing new symptoms or behaviour change to the learning disability itself, rather than investigating properly. The single most common cause of preventable death in LD.

Assuming a patient lacks capacity just because they have a learning disability. Capacity must be assessed for each specific decision. Many patients with mild–moderate LD have full capacity.

Directing all communication to the carer and ignoring the patient. Always address the patient directly first, even if their communication is limited.

Example: Asking the carer "Does he eat properly?" while the patient sits looking at you.

How to avoid: Turn to the patient first: "Hello, how are you today?" Only turn to the carer for collateral after you've addressed the patient directly.

Prescribing antipsychotics as a first response to behaviour change, without investigating physical causes or applying STOMP principles.

Example: Prescribing risperidone for "challenging behaviour" without checking for pain, constipation, or infection.

How to avoid: Apply PAIN-MEDS first. Antipsychotics are only for psychosis or severe agitation after all physical causes excluded. Involve LD psychiatry. Review and attempt reduction regularly (STOMP).

Not asking about bowels. Constipation is the single most common and most frequently missed treatable cause of behaviour change and distress in people with severe LD. Always enquire specifically.

Failing to offer double appointments, easy-read information, or accessible environments. Reasonable adjustments are a legal duty under the Equality Act 2010, not a discretionary extra.

Failing to screen for, document, or act on safeguarding concerns. People with LD are 6x more likely to experience abuse. A low threshold for referral is essential.

Not proactively recalling patients for annual health checks. Over-reliance on patient self-referral misses the majority of health needs. Proactive, structured health checks are the most important preventive intervention in LD.

Making capacity-related decisions without documenting the assessment and reasoning. Poor documentation leaves the patient (and clinician) vulnerable. Document the decision, the assessment, and why the best interests decision was made.

Not establishing a cognitive and functional baseline in adults with Down syndrome, and missing early signs of dementia. Alzheimer's onset is 10–20 years earlier in Down syndrome. Establish baseline by age 30–35 and monitor annually.

Sending referral letters with no information about communication needs, baseline function, or medication — leaving secondary care unprepared.

Example: Routine referral for a non-verbal patient with no hospital passport, no mention of LD, no communication guidance.

How to avoid: Always send the hospital passport with every referral. Include communication needs, baseline function, triggers, and medications. Flag as a vulnerable adult.

Trying to manage complex cases without specialist input from LD nurses, psychiatry, or other allied health professionals.

Example: Managing refractory epilepsy or severe mental health problems in isolation without neurology or LD psychiatry input.

How to avoid: Know your specialist LD team. LD nurses, psychiatry, SALT, OT, and social care are there to help. Use them. Complex cases need MDT working.