Carer Discussing Sudden Jerky Movements in A Young Man with A Learning Disability — Free SCA Practice Case
Carer discussing sudden jerky movements in a young man with a learning disability
Station Timer
Golden Minute
Initial Introduction
•Introduce yourself
•Ask an open question — "How can I help you today?"
•Listen — don't interrupt
•Catch early cues
Data Gathering
History, ICE & Diagnosis
Clinical Management
Diagnosis, Plan & Decisions
Safety Net
Follow-up & Close
Five cases are free: a live 12-minute consultation with an AI patient each, marked, and no card.
Materials for Candidate
Please review before starting the consultation
Full Name
Thomas Miller
Age
24 years
Consultation Type
TelephoneAge
24
Caller
Sarah Jenkins (Key Worker / Lead Carer at his residential home)
Reason for Encounter
"Carer wants to discuss Thomas. He has developed sudden jerky movements over the last 48 hours. She wants to know what could be causing this and what to do."
Medical Records
- ●PMH: Severe Autism Spectrum Disorder (ASD), Moderate Learning Disability, Epilepsy.
- ●Medications: Lamotrigine 100mg BD (Stable for 3 years). Risperidone 1mg BD (Started 3 weeks ago by Community Psychiatry; increased to 2mg BD five days ago).
- ●Allergies: NKDA.
Recent Notes
- ●3 weeks ago: Psychiatry letter noted increased "challenging behaviour and agitation" at the care home, resulting in an incident where Thomas pushed another resident. Risperidone initiated to manage agitation.
Patient Script
For the friend playing the patient role
Character Overview: You are Sarah, the lead carer at Thomas's residential home. You have worked with Thomas for four years and know him incredibly well. You are a passionate advocate for him. Over the last two days, Thomas has developed frightening, unnatural muscle spasms in his neck and jaw, and he cannot stop pacing. You know his usual autistic "stimming" (hand-flapping), and this is completely different. You are highly suspicious of the new medication (Risperidone) because the dose was doubled last week. You have read about the "STOMP" campaign (Stopping over-medication of people with a learning disability) and are secretly furious. You believe the psychiatric team is using a "chemical straitjacket" to sedate him rather than helping you address the environmental triggers for his anxiety. You will not volunteer your anger about the medication or mention "STOMP" unless the doctor actively listens to your timeline and asks what you think is going on.
Consultation Flow & Responses:
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The Opening
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If the doctor asks an open question: "Hi Doctor, it's Sarah from Oakwood House. I'm calling about Thomas Miller. I am really worried about him. Over the last two days, he's started having these sudden, aggressive jerky movements in his neck, and he's pacing the corridors constantly. I want to discuss what's causing this, because it's not his normal autism."
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Data Gathering
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Layer 1: Differentiating the Movements (Seizure vs. EPS vs. Tics):
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"It's not a seizure. He doesn't lose consciousness. He looks absolutely terrified when it happens."
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"His neck suddenly twists to the side, and his jaw clenches shut. It lasts for a few minutes, then relaxes, then happens again." (Classic Acute Dystonia).
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"He also can't sit still. He's literally shifting from foot to foot. He looks like he's jumping out of his own skin." (Akathisia).
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Systemic / Red Flag Screen (Neuroleptic Malignant Syndrome):
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"No, he doesn't feel hot. I took his temperature and it's normal (36.8)."
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"He is drinking water, but he's struggling to eat solid food today because his jaw keeps clamping."
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Medication Timeline (The Clinical Clue):
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"Well, the psychiatrist put him on Risperidone three weeks ago because he had a meltdown and pushed someone. Then last Friday, they told us to double the dose to 2mg twice a day. These jerks started two days later."
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ICE — Ideas, Concerns, Expectations (Only reveal if the doctor directly explores the patient's/carer's perspective. Do not volunteer unprompted.)
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Ideas: If the doctor asks "What do you think is causing this?": You let out a frustrated sigh. "Doctor, I've read about the STOMP campaign. I think this new drug is poisoning him. It's giving him movement disorders. He's not 'aggressive', he's autistic and the home was too noisy that day! I feel like he's been put in a chemical straitjacket just to make him quiet, and now it's damaging his nervous system. Is it the Risperidone?"
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Concerns: If the doctor asks "What are you most worried about?": "I'm worried this is going to be permanent — that this drug has done something to his brain that can't be undone. And honestly? I'm worried that if I complain too loudly, they'll just find another way to sedate him. He can't speak up for himself, so I have to."
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Expectations: If the doctor asks what she is hoping for from this consultation: "I want someone medical to actually say out loud that this is a side effect. And I want a plan to get him off it safely — not just 'we'll review it in a few weeks'. He's suffering now."
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If Asked — Medical History and Medications (Actor guidance: respond only if the doctor specifically asks about Thomas's other medical conditions or medications.)
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Lamotrigine: "He's been on Lamotrigine for years — 100mg twice a day. It's been brilliant for his seizures, actually. He used to have quite a few, but since they got the dose right about three years ago, he's hardly had any. He definitely hasn't missed any doses recently — I do his meds myself every morning and evening."
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Epilepsy history: "His seizures were always the same — he'd go blank and stiff, sometimes fall, and then be really sleepy afterwards for an hour or so. What's happening now looks nothing like that. He's wide awake and frightened."
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The incident that led to Risperidone: "He pushed another resident about three weeks ago. But it was the day they were doing fire alarm testing — the noise was unbearable for him. He was overwhelmed, not aggressive. I told the psychiatrist that, but they started him on Risperidone anyway. Then they doubled it last week because the home manager said he was still 'unsettled'."
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Allergies: "No, no allergies to anything that we know of."
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Social History and Lifestyle Impact
Thomas lives in Oakwood House, a small residential home for adults with learning disabilities. He has lived there since he was 20. His routine is everything to him — he follows the same pattern every day: breakfast at 8, his sensory room time at 10, lunch, then a walk to the park with Sarah or another carer, tea at 5, and a film before bed. He communicates using a mixture of Makaton signs, a picture exchange book, and a few spoken words.
Impact of the current symptoms:
- ●"He hasn't been able to use his sensory room for two days because he can't sit still long enough. That room is his safe space — it's the only place he properly relaxes."
- ●"We tried to take him on his usual walk yesterday and he couldn't do it. His neck kept twisting and he was getting more and more distressed. We had to bring him home after five minutes."
- ●"The night staff say he barely slept last night. He was pacing his room until the early hours. He's exhausted but his body won't let him rest."
- ●"The other residents are getting unsettled too because they can see something is wrong with Thomas and it's frightening them."
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If Asked — Associated Symptoms (Actor guidance: respond only if the doctor specifically asks about these symptoms.)
- ●If asked about tremor or shaking hands: "His hands aren't really shaking — it's more the neck and the jaw. His hands look normal to me."
- ●If asked about drooling or difficulty swallowing: "Actually, yes — he has been dribbling more than usual since yesterday. I assumed it was because his jaw is clamping, but now you mention it, he does seem to be struggling to swallow his drinks properly too. He's spluttering a bit."
- ●If asked about slurred speech: "He only has a few words anyway, but the ones he does say have sounded a bit off — thicker, like his tongue isn't working properly."
- ●If asked about tongue movements: "No, I haven't noticed anything odd with his tongue — no poking out or chewing movements."
- ●If asked about stiffness in the limbs or body: "His arms and legs seem normal. It's really just the neck and the jaw that go rigid."
- ●If asked about any changes in behaviour or mood before the movements started: "He was actually calmer after the first week on the lower dose, to be fair. It was only after they doubled it that everything went wrong."
- ●If asked about bowel or bladder changes: "No, nothing like that. He's been going to the toilet as normal."
- ●If asked about any rash or skin changes: "No, his skin looks fine."
- ●If asked about his eyes — rolling or fixed gaze: "Yes, actually — when his neck twists, his eyes seem to roll upwards a bit too. It looks awful."
- ●If asked about sweating: "No more than usual. He doesn't seem sweaty."
- ●If asked about confusion or reduced consciousness: "No, he's completely with it. That's what makes it so upsetting — he knows something is wrong with his body and he can't tell us what it feels like."
- ●If asked about any recent infections or illness: "No, he's been well otherwise. No coughs, no colds, nothing."
- ●If asked about falls: "He hasn't fallen, but I'm worried he will because he's so restless and tired. We've been keeping a close eye."
- ●If asked about weight changes or appetite generally: "His appetite has been fine up until today. Today he just can't manage solid food because of the jaw."
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Negotiation & Collaborative Management Plan
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If the Doctor agrees it is the Risperidone and suggests stopping/reducing it:
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Reaction: Relieved. "Thank God. I knew it. Should I just throw the tablets away right now?" (Doctor must advise safely reducing or withholding pending urgent review, rather than abrupt cessation without a plan).
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If the Doctor dismisses the medication link and suggests it's just his epilepsy getting worse:
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Reaction: Defensive. "No, I've seen his seizures for four years. This is completely different! He is fully awake and his neck is twisting. You need to look at the side effects of that antipsychotic."
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If the Doctor suggests Thomas needs to come to the surgery right now:
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Reaction: "Doctor, he is severely autistic and currently terrified by his own body. If I try to force him into a car to a busy waiting room, he will have a massive meltdown. Can you come here, or can we do a video call?"
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Minute 12: Safety Netting / Follow-up
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If the Doctor mentions warning signs like high fever or extreme sweating (NMS):
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Reaction: "Okay, I'll brief the night staff to check his temperature regularly. If he gets a fever and goes stiff, we'll call 999."
Mark Scheme
Domain 1: Data Gathering and Diagnosis
Domain 2: Clinical Management and Medical Complexity
Domain 3: Relating to Others
Clinical Learning Points
Recognising Extrapyramidal Side Effects (EPS)
Antipsychotics — including Risperidone, Haloperidol, and Olanzapine — block dopamine D2 receptors in the nigrostriatal pathway, disrupting motor control. EPS are dose-dependent and more likely after rapid dose escalation.
The four main EPS syndromes, in order of typical onset:
- ●Acute Dystonia: Sustained, involuntary muscle contractions causing abnormal postures — torticollis (neck twisting), trismus (jaw clenching), oculogyric crisis (eyes rolling upward). Onset within hours to days of a dose change. Highly distressing, often described as terrifying by carers and patients. Classic presentation in this case.
- ●Akathisia: A profound subjective feeling of inner restlessness and an irresistible urge to move — manifesting as pacing, inability to sit still, shifting from foot to foot. Onset within days to weeks. Critically, akathisia is frequently misidentified as worsening agitation or anxiety, which can prompt a dangerous dose increase of the causative drug.
- ●Drug-induced Parkinsonism: Bradykinesia, cogwheel rigidity, resting tremor. Onset within weeks to months. More common in older patients.
- ●Tardive Dyskinesia: Involuntary, repetitive oro-facial movements (lip-smacking, tongue protrusion, chewing). Onset after months to years of treatment. Can be irreversible — this is the permanent damage that Sarah fears.
Differentiating EPS from Seizures and Autistic Stereotypies
This is the core diagnostic challenge in this case. Three movement types must be distinguished:
- ●Acute dystonia vs. epileptic seizure: Dystonia occurs without loss of consciousness — the patient is alert and often visibly distressed throughout. There is no post-ictal phase (no sleepiness or confusion afterwards). Dystonic movements are sustained and posture-fixing, not rhythmic clonic jerks. Thomas's seizures (Lamotrigine-controlled) produced blank staring, stiffening, and post-ictal somnolence — qualitatively different.
- ●EPS vs. autistic stereotypies (stimming): Stimming behaviours (hand-flapping, rocking) are self-soothing, volitional to some degree, and associated with contentment or sensory seeking. EPS movements are involuntary, painful, new in onset, and cause distress — the patient cannot stop them. A carer with four years of experience is the best historian for this distinction.
- ●Akathisia vs. behavioural agitation: Both present with restlessness and pacing. The key difference is that akathisia is an irresistible motor compulsion driven by the drug — not a behavioural or emotional response to environment. In a non-verbal patient, this distinction requires careful carer history and a high index of suspicion after any antipsychotic dose change.
Investigations
In a typical presentation of acute EPS after a clear temporal link to a dose change, the diagnosis is clinical — no investigations are required before initiating management. However, where the diagnosis is uncertain or NMS cannot be excluded:
- ●Temperature — must be checked to exclude NMS (fever is the key discriminator).
- ●Bloods for NMS: FBC (leucocytosis), CK (grossly elevated in NMS), U&E, LFTs, coagulation if concerned.
- ●The diagnosis of acute dystonia or akathisia does not require neuroimaging or EEG. Requesting these tests risks diagnostic delay and is not indicated where the clinical picture is clear.
Immediate Management of Acute Dystonia
The priority is prompt treatment — acute dystonia is painful and distressing, and does not resolve without intervention.
- ●Withhold the causative agent: Stop or withhold Risperidone immediately. Do not simply reduce the dose — in acute dystonia, the drug causing the reaction should not be continued until the patient has been reviewed.
- ●Anticholinergic treatment — Procyclidine: First-line treatment for acute dystonia. Dose: 5mg oral or IM (adult dose); IM route preferred if oral intake is compromised (jaw clamping, swallowing difficulty). Onset within 5–10 minutes IM, 30 minutes oral. A second dose can be given after 20 minutes if insufficient response. In practice, a GP undertaking a home visit should consider whether to carry and administer Procyclidine IM directly.
- ●Benzodiazepine (Diazepam): An alternative or adjunct where Procyclidine is not available or is insufficient — can reduce acute muscle spasm and distress.
- ●Swallowing and airway safety: Jaw clamping and drooling raise the possibility of laryngeal dystonia — extension of dystonia to the laryngeal muscles causing stridor or airway compromise. This is a medical emergency. If Thomas is spluttering with fluids or showing signs of respiratory distress, 999 must be called immediately. In the interim, advise soft foods and thickened fluids.
Management of Akathisia
Akathisia does not respond to anticholinergics. Management is distinct:
- ●First step: Reduce or discontinue the causative antipsychotic in discussion with the prescribing team.
- ●Low-dose Propranolol (e.g., 10–40mg TDS) is evidence-based and commonly used off-label — particularly effective for the subjective restlessness component.
- ●Clonazepam is an alternative where beta-blockers are contraindicated.
- ●Explain to carers that the restlessness is drug-driven, not behavioural — this distinction is essential for correct care home management.
Neuroleptic Malignant Syndrome — Red Flags and Emergency Response
NMS is rare but potentially fatal. It must be excluded in any patient on an antipsychotic who develops new movement abnormalities.
Classic tetrad:
- ●Hyperthermia (fever >38°C)
- ●Severe muscle rigidity ('lead-pipe' rigidity — generalised, not just focal)
- ●Altered consciousness (confusion, reduced GCS)
- ●Autonomic instability (tachycardia, labile BP, diaphoresis)
In this case, Thomas's temperature is normal and he is alert — NMS is clinically less likely. However, care home staff must be explicitly briefed to call 999 if he develops fever combined with worsening rigidity. Management of confirmed NMS: stop the antipsychotic immediately, 999, hospital admission for supportive care; Dantrolene or Bromocriptine in severe cases.
Note: Elevated CK is a sensitive early marker of NMS and should be requested urgently if the clinical picture is uncertain.
Prescribing Antipsychotics in Autism and Learning Disability — The STOMP Agenda
STOMP (Stopping the Over-Medication of People with a learning disability, autism or both) is an NHS England programme that reflects a national mandate to reduce inappropriate psychotropic prescribing in this population.
Key principles for GP practice:
- ●Antipsychotics should not be prescribed for 'challenging behaviour' in autism or learning disability unless a primary mental illness (e.g., psychosis, bipolar disorder) has been diagnosed and documented. Behaviour is a form of communication — it signals distress, pain, or unmet need.
- ●Before initiating any psychotropic for behaviour, a Positive Behavioural Support (PBS) approach must be offered: structured assessment of the antecedents, behaviour, and consequences (ABC model); identification of environmental triggers; sensory profile review; environmental modification.
- ●In this case, the trigger was identifiable (fire alarm testing — sensory overload) and a PBS approach was not documented prior to prescribing. This is a prescribing quality failure.
- ●GPs have an independent duty under STOMP to review and challenge psychotropic prescriptions in this cohort, even when initiated by secondary care. Annual medication reviews are mandated.
- ●If an antipsychotic is clinically justified, the rationale must be documented, the lowest effective dose used, and a clear de-escalation plan agreed with the patient (or their advocate) and the MDT.
Referral and Multi-Professional Coordination
This case requires urgent multi-professional action — not a routine review request:
- ●Urgent contact with the Community Learning Disability Team (CLDT) or prescribing psychiatrist: Same-day telephone call to report the adverse drug reaction, request formal medication review, and agree a safe tapering plan. A written referral or letter is insufficient — this requires same-day verbal handover.
- ●Community Learning Disability Nurse: Can coordinate a PBS assessment, sensory environment review, and carer support.
- ●CLDT pharmacist or prescribing doctor: To supervise safe Risperidone tapering — abrupt cessation of an antipsychotic can cause rebound symptoms and should be managed with a structured reduction plan.
- ●Reasonable adjustments: Any face-to-face assessment must come to Thomas (home visit or video consultation) — not the reverse. Insisting on a surgery attendance for a severely autistic patient in acute distress is clinically inappropriate and a failure of reasonable adjustment under the Equality Act 2010.
Safety Netting — Specific Instructions for the Care Team
Safety netting must be delivered to Sarah in clear, relayable language for the night shift:
- ●Call 999 immediately if: Thomas develops a high temperature (above 38°C) with increasing muscle stiffness anywhere in his body (possible NMS); Thomas shows any sign of breathing difficulty, noisy breathing, or cannot swallow at all (possible laryngeal dystonia/airway compromise).
- ●Call the GP urgently if: The jaw clamping or neck twisting worsens or becomes continuous; Thomas cannot swallow fluids safely; he becomes more distressed or agitated despite withholding the Risperidone.
- ●Interim nursing care: Soft foods only; thickened fluids if spluttering; close observation; do not attempt to physically restrain dystonic movements; document temperature every 4 hours.
- ●Arrange a specific follow-up call (same day or following morning) — not an open-ended 'call if concerned'.
Common Candidate Mistakes in This Case
- ●Attributing the movements to epilepsy: The most common misdiagnosis. The clue is preserved consciousness, absence of post-ictal drowsiness, and a clear temporal link to the Risperidone dose increase. Always take a detailed medication history before attributing new neurological symptoms to a known condition.
- ●Increasing the antipsychotic for 'worsening agitation': Akathisia looks exactly like agitation. Increasing the dose of the causative drug in response to akathisia is a recognised, serious prescribing error — it worsens the reaction and escalates risk of NMS. This is the 'tragic loop' that the marking scheme explicitly flags.
- ●Failing to address the immediate medication decision: A candidate who acknowledges the diagnosis but defers all action to psychiatry — leaving Thomas on the current dose while awaiting a routine review — has not managed the acute harm. Withholding the causative dose is a GP-level decision that should not wait for specialist availability.
- ●Ignoring swallowing difficulty: Jaw clamping with drooling and spluttering is a potential airway safety issue (laryngeal dystonia). Prescribing oral Procyclidine without considering whether Thomas can safely swallow it, and without advising on dietary modification, is a significant clinical omission.
Mapped to the RCGP curriculum topic: Learning Disability.
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