When seeing the GP becomes a whole task

Why a small task can become a large one

A GP appointment may begin in different ways. Someone close to you says that you need to call today. A letter or text asks you to book, attend or respond. Or you are unwell and know that you need to make the call yourself.

Each route can add pressure. Being told to call may come with concern or the feeling that you should have acted sooner. A letter can contain unfamiliar wording, a deadline or a demand to act without warning. Being ill makes every step harder at exactly the point you need to organise help.

The ten-minute appointment may create an hour, an afternoon or more of work around it. That will not be true for everyone, but it is a familiar pattern for some autistic adults: preparation, travel, waiting, explaining, getting home, working out what was agreed and recovering from the interaction.

A 2022 BMJ Open survey found that 80% of its autistic adult respondents reported difficulty visiting a GP when needed. The same respondents commonly reported difficulty deciding whether symptoms warranted a visit, making appointments by telephone, communicating with the doctor, prioritising health issues and summarising the problem because they felt a need to give the whole story. The study used a self-selected online sample, so its percentages do not describe every autistic adult. They do show why advice such as “just ring the GP” can miss much of the work involved.

Getting through the booking conversation

Many people find same-day appointment systems stressful. You may not know whether a problem counts as urgent, what information is relevant, or whether you are saying it in the right way.

Reception or care-navigation staff are normally asking questions so the practice can decide who should respond and how urgently. They are not asking you to diagnose yourself correctly. NHS England says practices should have a senior-clinician-approved process for gathering information, managing requests and escalating concerns.

The receptionist is not necessarily the problem. The system can still be difficult to use.

If you are able to, start with the simplest accurate description of what is happening. You do not need the medical name for it. It may help to say:

“I need help with a health problem. I find it difficult to explain things quickly on the phone. Could you tell me the best way to give the necessary information?”

Then give the facts you have: what is happening, when it began, whether it is worsening and anything that has changed. If you think it needs urgent attention, say so plainly.

Your practice may offer an online form, text messaging, email or another contact route for some requests. Ask what is available and whether a communication need can be recorded. Practices differ, and not every route will be suitable for every concern.

Ask for clear, direct communication

You do not need to have the perfect explanation before you can ask for clarity. These requests are allowed to be simple:

• “Could you say that more directly?”
• “Could you write down the next step?”
• “I need a moment to think before I answer.”
• “Can we deal with one concern at a time?”
• “Could you check that I have understood correctly?”

Clear communication is not the same as being spoken down to. It gives you a fairer chance to understand what is being asked and to say what you mean.

The Care Quality Commission’s review of autistic people’s experiences of primary care describes phone access, situational anxiety, sensory differences, communication adjustments and a perceived lack of time to explain concerns. It also stresses that autistic people have different needs and preferences.

Autistic communication can be misread, particularly under stress. If you know that stress changes the way you communicate, it may help to say so briefly in advance or to have a trusted person with you. It should not be necessary to perform distress in a particular way to be listened to.

Use the note without completing it

You already have your three things. If you want somewhere to put them, use the ZenEmu appointment note. You do not need to fill every box.

You can read from it, give it to the GP at the start, or simply use it to keep your own thoughts in one place. Guidance for autistic people preparing for healthcare appointments also recommends noting what you need to tell the professional and ask them, with clear language and time to process information.

Support without losing agency

A partner, friend, relative or advocate can make an appointment more accessible. They may help make the call, set expectations beforehand, prompt you to mention something important, ask for clarification or help you remember the plan afterwards.

That support does not make them the patient. You remain the person whose health, preferences and decisions matter.

A helpful supporter checks what you want before stepping in. They speak only as much as you want them to, leave room for you to answer in your own words, and do not turn support into control. If you do not have someone you want to take with you, a short note can do some of this work. You can also ask the practice about written communication or other reasonable adjustments.

Afterwards: allow for recovery

Getting through the appointment is not always the end of the task. Some people feel exhausted afterwards. Some replay the conversation in their head that night or for several days, especially if they are unsure whether they explained themselves properly or were understood.

Where possible, leave some unscheduled time around the appointment. Put instructions, prescriptions, referrals and follow-up dates in one place. If someone supported you, compare notes while the details are fresh.

You do not need to solve every part of the problem in one conversation. The useful question is smaller: what would make the next step more possible?