A question arising from the NAC Thursday Sessions
During a recent NAC Thursday Session, members shared experiences of communicating with healthcare professionals and trying to get their concerns heard.
One difficulty raised was following a doctor’s speech. This prompted a wider question: what happens when a patient is listening carefully but cannot understand enough of the conversation?
This article develops that question. It considers hearing and sight difficulties, problems using written information, and how patients and healthcare teams can prepare for a clearer conversation.
Straining to catch the words
Sometimes the difficulty starts before you can think about what the doctor means. You are concentrating on recognising the words themselves.
While you are working out one sentence, the next has already begun. You lose the thread and become increasingly tense. Your heart sinks as you realise that important information is passing you by.
Perhaps the doctor speaks quickly or quietly, their accent is unfamiliar, or they use medical terminology. Background noise can add to the difficulty. If you are also hard of hearing, tired, breathless or anxious, following the conversation can take considerable effort.
You ask for something to be repeated, but still cannot follow it. You may feel embarrassed about interrupting again or worry about using up the appointment.
So you nod—and may leave unsure about a medicine, a test result or what happens next.
You may be trying very hard to understand. The way the conversation is happening needs to change.
The responsibility should not fall on the patient
Patients can explain what would help, but they should not have to keep overcoming embarrassment or repeatedly asking for the same adjustment.
The clinician is responsible for explaining information clearly, responding to communication difficulties and checking understanding. NICE guidance recognises that accents and dialects can affect communication and recommends adapting explanations, avoiding jargon and summarising important information.
A short appointment does not remove that responsibility. Understanding the treatment plan is an essential part of receiving care.
Simply asking “Do you understand?” may not reveal a problem. Someone who feels tense or rushed may say yes even when they are uncertain.
Telephone appointments can be particularly difficult
On the telephone, you cannot see the clinician’s face, lip movements or gestures. Poor sound quality can make words harder to distinguish.
You may understand the general subject but miss a medicine name, a dose or a change in treatment. Repeating the same sentence over the same connection may not help.
You can say:
“I’m missing too much of this conversation to understand the advice reliably. We need another way to go through it.”
The clinician should recognise when the format is not working and arrange an accessible way to continue, taking account of how urgently you need care. NHS England’s Accessible Information Standard recognises that some people with hearing loss cannot use telephone services effectively and need alternative communication methods.
There are two things to address: making today’s treatment clear, and preparing better arrangements for next time.
For today: get a treatment plan you can use
If you have struggled to follow the appointment, explain this before the conversation ends:
“I’m still unclear about the treatment plan. Please go through it with me and give me the instructions in a format I can use afterwards.”
The plan should explain, where relevant:
- Which medicines to start, stop or change, including doses, timing and duration.
- Any tests or monitoring needed.
- What happens next and when.
- What to do if symptoms worsen or there is a problem.
- Who to contact with questions.
For many people, having this written down is helpful. NHS advice supports asking for information to be written down and unfamiliar words explained.
But written information only helps if you can read, understand and use it.
If reading or writing is difficult
Some people find reading difficult or cannot read or write. Others have sight loss or cannot use the document they have been given.
You do not need to explain the personal reasons for finding something difficult before asking for help. You can say:
“I find written instructions difficult to use. Could we go through the plan another way?”
Depending on your needs, useful options might include:
- Large print, Braille or an accessible electronic document.
- An audio version or explanation you can replay.
- Easy Read information using clear words and supporting pictures, if that helps you.
- A spoken explanation, one step at a time, with a practical demonstration where appropriate.
- Support from someone you choose.
The Accessible Information Standard specifically covers communication needs related to disability, impairment or sensory loss, including accessible formats and communication support. Difficulty reading or writing can also arise for other reasons; the healthcare team still needs to explain your care in a way you understand.
If sight loss makes it difficult to identify medicines, ask the clinical team or pharmacist how you can distinguish and use them safely.
Agree when and how you will receive the plan
Ask how the instructions will reach you and make sure that method works for you.
If treatment needs to start or change today, explain that you need usable instructions today, rather than waiting for a routine clinic letter.
Providing a document, message or recording does not replace answering your questions and checking that the plan is clear.
For next time: prepare the ground beforehand
If you already know that a particular appointment format is difficult, contact the practice or clinic in advance.
You do not have to write. You can use a contact method that works for you or ask someone to help with your permission.
For example:
“I have hearing loss and cannot reliably follow telephone consultations. Before my next appointment, please agree with me how we will communicate and how I will receive the treatment instructions.”
Or:
“I have sight difficulties and cannot read standard print. Please arrange information in a format I can use before my appointment.”
Ask the service to agree:
- A suitable appointment format.
- Any equipment or communication support needed.
- How the clinician will be told about your needs.
- How you will receive the treatment plan.
- How the arrangements will be confirmed accessibly.
Support might include a quieter room, more time, a hearing loop or professional communication support. Video helps some people who need to see the speaker, but it will not suit everyone. The arrangements should reflect your needs.
Preparing beforehand should reduce the effort you have to make during the appointment.
Ask for your communication needs to be visibly flagged
A diagnosis such as “hearing loss” in your medical history does not necessarily tell staff what to do.
Ask the service to record the practical support you need, for example:
“Needs staff to face her and speak clearly, one point at a time. Telephone consultations are difficult. Important instructions must be provided in an agreed accessible format.”
In England, the Accessible Information Standard requires disability-related communication needs to be identified, recorded, flagged, shared, met and reviewed. The flag should be highly visible to relevant staff—for example, an alert or banner on an electronic record.
It does not have to be literally red. What matters is that staff notice it and act.
Ask your GP practice and hospital clinic to confirm that your needs are recorded. Do not assume that information entered by one service is already visible to every other service. Ask for communication needs to be included in referrals and handovers.
You can check at the appointment:
“Have you seen my communication-support alert?”
That is useful, but the responsibility for acting on the information remains with the service.
Check the explanation—not the patient
The clinician can invite you to describe the plan in your own words, explaining that this checks how clearly they have communicated it.
You can also say:
“Let me explain what I think I need to do, so you can check I’ve understood.”
This should not feel like an examination or a memory test. It is an opportunity to identify anything that needs explaining differently.
NICE recommends that clinicians summarise the main information and check understanding at the end of a consultation.
If someone accompanies you, the clinician should continue to address and involve you directly, using your chosen support to help the conversation.
If your needs are not addressed
If you are still unclear, ask another member of the team for help:
“I have explained that I cannot follow the information, but I still do not understand my treatment. Please arrange for someone to go through it with me in a way I can use.”
For hospital care in England, the Patient Advice and Liaison Service (PALS) can help you raise concerns and communicate with the hospital. You can seek help without starting a formal complaint.
For a GP practice, ask the practice manager to help arrange communication support. Explain what remains unclear, what would help, and whether a recorded alert has been overlooked.
If the problem remains unresolved, ask about the service’s complaints procedure and independent NHS complaints advocacy. Those processes should also be accessible to you.
If you need clarification to use treatment now, contact the clinical team promptly rather than waiting for PALS or a complaint response. PALS cannot provide medical advice.
Understanding is part of your care
Our Thursday Sessions give people space to describe difficulties that may not be obvious during a busy appointment. Members share experiences, while questions that arise can lead us to useful information and guidance.
This conversation highlighted how much effort someone may be making simply to follow the words being spoken.
For today, you need a treatment plan you understand and can use. For next time, the service should have communication support ready. You should not have to pretend to understand.
Find out about the NAC online support meetings.
This article develops a communication issue raised during a Thursday Session without identifying participants. Hearing, sight and reading examples are wider guidance and do not describe individual attendees. The NHS flagging and PALS arrangements described apply to England; arrangements elsewhere may differ.
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