Dysphagia Knowledge Hub — 吞嚥困難知識庫

How to Talk to Your Medical Team About Dysphagia: A Guide for HK Caregivers

Navigating the medical system in Hong Kong as a family caregiver can feel overwhelming — particularly when you are trying to raise concerns about a symptom like swallowing difficulty that may not be immediately visible to clinical staff. Dysphagia is often under-reported and under-assessed, especially in elderly patients who may not articulate their difficulties or who have adapted their eating habits quietly to manage the problem.

This guide helps caregivers communicate more effectively with doctors, nurses, and speech-language therapists (SLTs) — so that the person you care for gets the assessment and support they need.

What Information to Bring to Every Appointment

Clinical consultations in the public hospital system are short. A well-prepared caregiver can make a short appointment productive. Bring the following:

A written summary of swallowing observations. Before the appointment, spend a few days watching mealtimes and writing down what you notice. Include: how often coughing or throat-clearing happens during meals, whether it happens with solids, liquids, or both, how long meals take, and whether the person’s voice sounds different after eating. Specific observations (“he coughs 3–4 times during every meal, mainly when drinking water”) are far more useful to clinicians than general statements (“he has trouble swallowing”).

A list of current medications. Bring either the original bottles or a written list with dosages. Some medications affect swallowing — muscle relaxants, sedatives, and anticholinergics can all reduce swallowing efficiency. The clinician may not know what the person is taking from a different department.

Recent weight records. If the person has been losing weight, bring any records you have — even informal ones. Unexplained weight loss in a person with swallowing difficulty is a clinical red flag that supports urgent referral.

Any previous SLT or dietitian reports. If the person has been assessed before, bring the most recent report. This saves time and gives the clinician important baseline information.

How to Raise Swallowing Concerns with a Doctor

If swallowing has not yet been formally assessed, the doctor appointment is where you request a referral. Be specific and direct:

• “I have noticed he coughs every time he drinks water. I am concerned about aspiration. Can he be referred for a swallowing assessment?”
• “She has been losing weight and eating less. I think she is avoiding food because swallowing is uncomfortable. Can we arrange an SLT assessment?”

In the HA system, SLT referrals are made by doctors (in inpatient settings) or by community health workers and GPs. If your concern is dismissed, politely ask: “What would need to happen for a swallowing assessment to be arranged?” This shifts the conversation from “yes or no” to “what are the conditions.”

If the person is currently admitted to hospital, ask to speak with the ward medical social worker (MSW). The MSW can facilitate communication between the family and the medical team and can escalate concerns through appropriate channels.

Understanding the Roles in the Dysphagia Team

Knowing who does what helps you ask the right questions:

Speech-Language Therapist (SLT) — assesses swallowing function, prescribes the IDDSI texture and fluid level, recommends compensatory strategies (such as chin tuck or head turn during swallowing), and provides caregiver training. The SLT is your primary contact for swallowing safety questions.

Dietitian — manages nutritional status, reviews whether the person is getting adequate calories and protein on their modified texture diet, and recommends oral nutritional supplements if needed.

Occupational Therapist (OT) — addresses positioning, adaptive equipment, and home environment modifications to support safe mealtimes.

Ward Doctor or Specialist — manages the underlying medical condition (stroke, Parkinson’s disease, cancer) that is causing the dysphagia, and authorises referrals to other team members.

Nurse — implements mealtime care on the ward, monitors for aspiration signs, and communicates clinical changes to the medical team. In community settings, visiting nurses can conduct home-based monitoring.

Understanding an SLT Report

An SLT report after a swallowing assessment will typically include:

• The method of assessment used (clinical bedside assessment, videofluoroscopic study, or FEES)
• Findings about the oral, pharyngeal, and sometimes oesophageal phases of swallowing
• The prescribed IDDSI levels for food and liquid separately
• Any compensatory strategies recommended
• Follow-up recommendations

If you receive a report and do not understand it, ask the SLT directly: “Can you explain what this means for how I prepare his meals at home?” You are entitled to a plain-language explanation.

Key terms to know:

• IDDSI Level — the international scale for food texture (0–7) and liquid thickness (0–4). Higher numbers for food mean firmer textures; lower numbers for liquids mean thicker.
• Aspiration — when food or liquid enters the airway instead of the oesophagus.
• Silent aspiration — aspiration that happens without coughing — common in neurological conditions and especially dangerous because there is no external sign.
• Penetration — when food or liquid enters the upper airway but does not go below the vocal cords. Less severe than aspiration but still a concern.

At the Appointment: What to Ask

If you are at an SLT appointment, bring your observations and ask these questions:

1. What IDDSI level should food and drink be right now?
2. Is there any possibility of the level changing — either improving or needing to be stricter?
3. What warning signs should I watch for at home?
4. What should I do if he chokes during a meal?
5. When is the next review, and how do I contact you before then if I am concerned?
6. Is there anything specific about how he swallows that I should tell the care home or domestic helper?

Write down the answers. Many caregivers find it helpful to bring a second family member or a trusted friend to appointments, to help remember information under the pressure of a short consultation.

Advocating Without Conflict

The public hospital system is under significant pressure, and clinical staff are managing heavy caseloads. Effective advocacy is not confrontational — it is persistent and specific.

If you feel a concern has been missed:

• Put it in writing. A brief, factual letter to the ward nurse manager or department head summarising your concern creates a documented record.
• Contact the Patient Relations Office of the hospital for guidance.
• If the person’s condition is deteriorating, an accident and emergency presentation with clear documentation of the concern (coughing at every meal, weight loss, suspected aspiration) creates an urgent clinical record.

The goal is to be a reliable source of accurate clinical observation — caregivers who document carefully and communicate specifically are taken more seriously than those who raise concerns in general terms.

References

1. Hospital Authority, HKSAR. Patient Rights and Responsibilities. ha.org.hk.
2. IDDSI Framework v2.0. iddsi.org. 2021.
3. Ekberg O et al. Social and psychological burden of dysphagia. Dysphagia. 2002;17(2):139–146.
4. Langmore SE. Evaluation of oropharyngeal dysphagia: which diagnostic tool is superior? Curr Opin Otolaryngol Head Neck Surg. 2003.
5. Social Welfare Department, HKSAR. Medical Social Work Services. swd.gov.hk.