How to use it: you don't have to read it all in one go. Each step stands on its own. One step, one appointment, one small ask at a time.
You might be wondering whether it's worth the effort. Here is the honest return:
- Being believed earlier. When you can describe what you need in words that fit you, you get taken seriously sooner — and problems get caught earlier.
- Adjustments that make care possible. Longer appointments, quieter waiting, written information, questions sent in advance. These exist, and asking is often all it takes.
- Safer care. People who know your needs make fewer mistakes with you. Pain you can't express gets noticed. Communication you can't process gets written down instead.
- Less exhaustion. Every appointment currently costs you a masking tax. Advocacy pays some of that cost back.
- A file that speaks when you can't. The biggest return: ask once, and your needs stay in your record. The next appointment starts where this one ended.
And the honest cost: the first ask is the hardest one you'll ever make. Every note on your file makes the next ask smaller. The return builds each time.
Step 1 — Know what you need
Self-advocacy starts with you knowing your own baseline, so you can hand it to someone else in words.
You can fill in our free How to Work With Me sheet (on the resources page — it covers exactly this: how you communicate, your sensory triggers, what helps you before, during and after) or build a one-page "This helps me" sheet of your own. Keep it short — one page is the whole trick. Cover:
- Senses: what hurts (bright lights, noise, smells, being touched without warning) and what helps (dimmer light, sitting away from the desk, knowing what will happen first)
- Communication: what works (written lists, direct questions, time to think, no idioms) and what doesn't (being rushed, open-ended questions, being touched on the arm to reassure you)
- Pacing: how long you can comfortably go, and what a break looks like for you
Try this: write yours in 15 minutes, in your own words. You'll use it in Step 2.
Step 2 — Get your records working for you
- Make sure you're registered with a GP — almost every door in this guide opens from there.
- Ask what's in your Summary Care Record, and what you'd like added.
- Ask your GP practice to note your adjustments on your file — hand over your "This helps me" sheet and ask for it to be added to your record. Say: "Could this be added to my notes, so I don't have to explain every time?"
- If hospitals are likely, a hospital passport (a short document about your needs, free templates online) travels with you and does the talking.
- Keep an up-to-date medicines list — names, doses, what they're for.
Our free Hidden Menu page lists the official alert names and a fill-in message you can copy. One written ask, and every future appointment starts with your needs already on screen. You can also see what's on your record — flags included — by asking for it (Step 5).
Try this: one phone call to the practice: "I'd like my communication and sensory needs noted on my record. What's the best way to get that done?" — and one written message to hospital PALS: "Please add an alert to my record" (name it from the Hidden Menu).
Step 3 — Before the appointment
You're allowed to shape the appointment before it happens:
- Choose the shape: phone, video, or in person; a longer or double appointment; the first or last slot of the day (shorter waits, calmer rooms). Just ask when booking — reception can do all of this.
- Write your three questions — the three things you actually want answered. Bring the paper. It's your tether.
- Bring your one-pager and your medicines list.
- Bring a person if it helps — a supporter can listen while you process, and remember what you can't.
- Tell reception how waiting affects you. Some practices can text you when to come in so you wait in the car, or seat you somewhere quieter.
- Use the ACCESS line on hospital letters. Appointment letters carry a small note: "If you require special access or reasonable adjustments… contact the relevant Outpatients department beforehand." That line is permission. Use it: "I'm contacting you about the ACCESS line on my letter — I need a quiet waiting area / a first-or-last appointment." For needs that should stick to your record forever, the PALS route in Step 2 is the stronger one; for this one appointment, the ACCESS line is the fast one.
Try this: when you book, say one sentence: "I need a longer appointment and a quiet corner to wait in, please — it's in my notes."
Step 4 — In the room: words that work
You don't need perfect words. You need true ones, said plainly. Some that work:
- "I need you to write that down for me — I take in written information better."
- "Please slow down. I understand better when you give me one thing at a time."
- "I might need a short break partway through. That's not a problem, it's how I process."
- "Please don't touch me without telling me first."
- "Can we agree the plan before I leave? I'd like it in writing."
- "I don't understand that word — can you say it another way?"
Adjustments you can ask for in the moment, any time: a written summary, no small talk, direct yes/no questions, the door left open, the light adjusted, a few minutes of quiet before you answer.
Try this: pick one sentence above. Take it written on a card. Handing over a card is allowed too.
Step 5 — Your rights, in plain English
No legal letters needed. Just know these exist:
- The NHS Constitution says you have the right to accessible information and to be involved in decisions about your care. "Accessible" means accessible to you.
- The Equality Act 2010 means services must make reasonable adjustments for disability — and you do not need a diagnosis to ask for an adjustment you clearly need. This covers sensory environments too — lights, noise, waiting spaces — not just ramps and interpreters.
- You can ask to see your records — at a hospital, that includes any adjustment alerts on your file (they're released under a subject access request) — and you can ask for a second opinion.
- You may bring an advocate — someone who speaks with you, or for you. Independent advocacy services exist in most areas, often free.
Try this: the phrase that opens most doors: "I'm asking for a reasonable adjustment." Then say what it is.
Step 6 — When you're not heard
First, calmly repeat. Say: "I need you to note that I've told you this, and that it isn't resolved." Being noted matters.
If it still doesn't land, there's a ladder, and every rung is allowed:
- Another clinician at the same practice — a different person, same problem.
- The practice manager — they run the appointment system and can fix access problems.
- PALS (Patient Advice and Liaison Service) — free NHS help for exactly this, in every hospital trust. And PALS can do more than listen: at some trusts (Great Western included) PALS is the team that can add adjustment alerts to your record — see Step 2.
- An advocacy service — someone in your corner, free in most areas.
- A formal complaint — your right, with a proper process. It isn't war; it's feedback with teeth.
The chase-once rule: after any request — an alert, an adjustment, a summary — chase it once, politely, in writing: "Just checking my request hasn't been lost." If it's still nothing after that, move up the ladder without guilt. You asked; they dropped it; the ladder exists for exactly this.
You are not being difficult. You are giving the system the information it needs to do its job.
Try this: "Could you write down in my notes that I've raised this today, and what you're doing about it?"
Step 7 — After the appointment
- The same day, write down what was said — what was decided, what happens next, who does what. Memory lies; paper doesn't.
- If nothing came in writing, ask: "Could you send me a summary of today's plan?" Practices and hospitals do this more than people realise.
- Keep a health diary — symptoms, triggers, what helped. Patterns you can show beat patterns you can only feel.
- When something worked, say so. Feedback that praises an adjustment keeps it on your file — and makes it likelier for the next person too.
Step 8 — The maze map: who does what
- Reception — bookings, appointment shapes, noting your adjustments. Their power is bigger than their job title.
- GP — the door to nearly everything: referrals, medications, fit notes, records.
- Practice manager — the person who can change how the practice runs.
- PALS — free NHS help at every hospital trust: the listening ear for problems and, at some trusts (Great Western included), the team who add adjustment alerts to records. Email or office visit — find them on the trust website.
- NHS 111 — urgent-but-not-emergency advice, any hour, and they can book you in.
- Your pharmacy — repeat prescriptions, medicine questions, small miracles.
- Hospital teams — they write to your GP; ask for copies of letters about you.
And yes — chasing a referral is allowed. "Could we check my referral is moving? I'd like to know where it is and what happens next."
Your pocket cards
Every card in this section also exists as a free printable Pocket Pack — fill-in, cut-out versions you can keep in your bag (and a fill-in version of the letter below). It lives on the resources page.
Please: speak plainly · one thing at a time · write important things down · tell me before touching me.
I may need a short break. This is in my notes.
What I want from today: …
Bring: one-pager · medicines list · supporter · this card.
"Could I have a written summary after, please?"
The full list of official alert names lives at the Hidden Menu — free, printable, no sign-up.
A letter that says it once
A kind small print: this guide is practical information, not medical advice. For urgent help, NHS 111; in an emergency, 999. PALS and independent advocacy services are free — you never have to do any of this alone.
You deserve healthcare that fits your nervous system. Asking for it is not a favour. It's how it's supposed to work.