Communicating about my needs

Some people find it hard to communicate. This can make medical appointments and hospital stays more difficult.

This page is for:

  • Trans people who might need to ask for extra support from healthcare staff.
  • Trans people who find it hard to talk to people.
  • Trans people who find it hard to understand what people are saying.

The questions and prompts we’ve put on the page are here to help you think about what you might want to say.

There might be things missing from this page you need to ask or tell doctors, nurses or other medical professionals. It is important that you do ask and say these extra things if you need to.

What are access needs?

Different people have different access needs. Some people might need step-free access inside a building. Other people might need a quiet space away from noise. And other people might need people to give them information in small chunks.

Everyone should be able to expect that their access needs will be met when they are having medical care. If you are disabled and you are disadvantaged by a medical provider not meeting your access needs, they might be breaking the Equality Act (2010). You have the right to complain.

How do I know what my access needs are?

If you’re not used to talking to people about your access needs it might be useful to start by asking yourself two things:

  • What things do I find more difficult than most other people?
  • What makes these things less difficult for me?

If you’re struggling to answer these, these extra questions might help:

  • Do you have mobility difficulties? For example, do you find it hard to walk up and down stairs?
  • Are you D/deaf or hard of hearing?
  • Are you blind or visually impaired?
  • Do you find it hard to understand people when they’re taking to you? Is there anything in particular that makes people harder to understand?
  • Do you find it hard to communicate with other people?
  • Do you find it difficult to ask for the things you need? Do you need someone to help me you to ask for them?
  • Do you find it difficult to read and write?
  • Do you find it hard to say no?
  • Do you find certain situations more stressful than most other people do? If so, what are they?
  • Do you find certain things very upsetting or overwhelming? If so, what are they? For example, fluorescent lighting or loud noises.
  • Do you need extra time to think if something unexpected happens?

It might also be useful to ask supportive friends and/or family members what access needs they think you might have.

It’s important that medical professionals are able to understand you during appointments and if you’re in hospital. This is because:

  • They need to understand you and your experiences to be able to make decisions about your care.
  • They need to know if there is anything that could put your health at risk.
  • Everybody should expect to be listened to by the healthcare staff who are caring for them.

It would be a good idea to let them know if you:

  • Use BSL – there’s a section on this page about arranging for an interpreter.
  • Use an AAC device (such as a Lightwriter or GoTalk).
  • Will need an interpreter because you are learning to speak English.
  • Communicate by writing things down on your phone or on paper.
  • Communicate by pointing to or exchanging objects, pictures, symbols or words, or pointing to letter stencils.
  • Struggle to choose which words to use.
  • Are sometimes or always non-speaking (for example, going quiet and not speaking when you’re anxious).

Giving the healthcare provider this information in advance will give them the chance to make any extra arrangements or to educate themselves on your communication methods and/or needs.

There are some suggestions on how to talk about healthcare professionals about your access and/or communication needs in the other sections on this page.

It’s a good idea to communicate about your access needs before going into hospital for surgery.

For appointments that don’t involve a hospital stay, it will depend on what your access needs are. For example, if you need paperwork to be in large print it would be useful to tell them before you go to an appointment.

If you want healthcare staff to know about your access needs before an appointment or hospital stay, you could e-mail or phone them.

It is important to:

  • Tell them your name and date of birth (so they can find your medical record).
  • When your appointment is and who it is with.
  • What your access needs are and what support you need.
  • Ask them to give the information to the person you’ll have your appointment with.
  • Ask them to put the information on their notes about you.

If you’re sending an e-mail, you could attach a copy of your communication passport or patient passport if you have one. You’ll find more info on those in the next section.

If you find phone calls hard, you could ask a friend or family member to phone the clinic or hospital for you.

Prepare for the appointment

Before you go to your appointment, it might be useful to write down the information you want the medical professional to know. This is useful because it will:

  • Help you to remember everything you wanted to say.
  • Be useful if you struggle to talk during the appointment – you can pass it to the person you’re talking to.
  • Be useful for the medical professional – they could keep a copy and add it to your notes.

You might also find it useful to make your own communication passport or patient passport if you don’t have one. You’ll find more info on those in the next section.

Some people find it helpful to take a friend, family member or support worker with them to appointments. If you think it would be helpful for you, make sure you arrange it with the person who will be going with you. Talk to them about what you’d like the medical professional to know about your access needs, and ask them to tell the professional for you if you don’t feel confident to say it yourself.

During the appointment

It is useful to tell people about your access needs at the start of an appointment, particularly if they are to do with communication.

It can be tricky to know how to start talking about this, especially if a medical professional seems to have a set idea of how an appointment might go. Try not to worry about things being awkward, most medical professionals will want you to feel comfortable and to do their best to support you.

If you have a communication or patient passport, giving this to the medical professional will give you a natural way of starting the conversation. If you don’t have one, that’s ok. There are other ways to start the conversation about your access needs.

You could start by saying:

  • “Before we start, I’d like to tell you about my access needs…”
  • “It’s nice to meet you, I know you’ll have lots of things to tell me. First I’d like to tell you about my communication needs…”
  • “This might be something you ask me about later, but it’s important to me that I tell you now…”

Before going into hospital

It’s a good idea to tell the surgical team about your access needs before you go into hospital for surgery.

There are lots of different ways of doing this:

  • During your consultation with the surgeon
  • During your pre-op appointment
  • By e-mailing or phoning the surgical team’s office

Have a look at the other sections on this page for suggestions on how to communicate about your access needs in advance or in appointments.

Arriving at the hospital

When you arrive at the hospital for surgery, you will normally be taken to your room, bed or waiting area by a nurse. Tell this person about your access needs – even if you’ve asked for it to be put on your notes.

Make sure you:

  • Tell them what your access needs are and what support you are going to need.
  • Give them your communication or patient passport if you have one.
  • Ask them to give the information to the staff that will be looking after you.
  • Ask them to put the information on your notes.

During your hospital stay

Sometimes members of hospital staff don’t know about a particular patient’s access needs or communication needs. Some members of staff might forget about or misunderstand a person’s needs. This can happen for lots of reasons and it isn’t normally on purpose.

If this happens to you when you are in hospital, there are a few things you could do:

  • Remind them about your access needs and explain what you need them to do (or not do).
  • Ask them to look in your notes for information on your access needs.
  • Have a copy of your communication passport or patient passport on your bedside table and ask them to read it.
  • Ask another member of staff to talk to the person about your needs.
  • If you have visitors or support workers with you in hospital, ask them to talk to the person about your needs.

If it keeps happening or you think that they’re doing it on purpose, talk to the Ward Manager.

If you’re not happy that an issue you’ve raised has been properly dealt with, you can complain. If you’re staying in an NHS hospital in England you can do this via PALS. Find the relevant Patient Advice and Liaison Service. Private hospitals ought to have information on how to complain on their website.

You’ll find more information on staying in hospital for surgery on our What happens in hospital? and Recovering in hospital pages.

What are my rights?

People who use British Sign Language (BSL) or who don’t speak much or any English are entitled to an interpreter at NHS appointments.

  • You can ask NHS clinics and hospitals to arrange an interpreter for your appointments
  • You will not be asked to pay to have an interpreter at NHS appointments
  • You should not be asked to bring a friend or family member to act as an interpreter

If you’re D/deaf and are having issues with your gender clinic not providing an interpreter, Deaf Rainbow have created a template letter that you can use to remind the clinic of your rights.

How will appointments be different?

If you have support from an interpreter at your appointments, some things will be different:

  • Appointments will be longer
  • For in person appointments: the interpreter might be in the room with you, or they might join via a video call or phone call.
  • For online appointments: the interpreter will join you in the online room.
  • For phone appointments: the interpreter will join the call in a conference call set up.

If you’re using an interpreter, it is useful to say 1 or 2 sentences and then pause to give them chance to tell the medical professional what you said.

Further reading

It’s important to tell medical professionals what sorts of things you find it hard to understand. This is because:

  • They’re giving you information that can impact your health
  • They are asking you questions to help them make decisions about your health
  • Everybody should expect to understand the information a medical professional gives them

Different people find different types of communication hard to understand. However, here are some examples of ways someone could explain things they find difficult:

  • “I find it hard to process lots of information at once. Please use short sentences.”
  • “When people don’t say exactly what they mean, I find it confusing. Please say exactly what you mean when you’re talking to me.”
  • “I am not good at making inferences. When you’re telling me something, please make sure you don’t miss anything out or assume that I am going to guess what you mean.”
  • “I’m still learning English and don’t know many medical words. If you’re using medical terms, please could you remember to tell me what they mean?”
  • “It’s hard for me to process information I’ve heard but not seen. Please could you give me written copies of any information you give me?”
  • “I need time to process what people are saying to me. Please can you talk slowly to me and pause after each piece of information you give me?”
  • “I find it hard to remember what people have told me. Would it be ok if I record voice notes during our appointments?”
  • “I find it hard to understand what people are saying to me. Please can you check I’ve understood each bit of information before you tell me the next thing?”
  • “I have hearing loss and rely on lip reading. Please speak clearly and make sure I can see your mouth when you’re talking.”

When a medical professional is talking to you or e-mailing you, it’s because they want to give you some information. The want you to understand it, so are not likely to mind if you ask them to give you the information in a way that will be helpful to you.

If you don’t know what a word or phrase means:

  • “I’ve not heard that word before. What does it mean?”
  • “I don’t know what that means. Could you explain it to me?”
  • “What’s a….? I’ve never heard of one.”
  • “What does a….involve?”
  • “What is a….used for?”

If they’re asking you to imagine something or make inferences:

  • “I can’t imagine what that would look like. Could you show me a diagram?”
  • “Metaphors are hard for me to understand. Could you explain using a real life example instead?”
  • “I find it hard when people don’t say exactly what they mean. Could you explain this in a different way?”
  • “I don’t understand what you’ve just said. It might be because there’s something you have assumed that I know or will work out. I struggle to make inferences. Could you tell me again in a way that doesn’t miss anything out?”

If you’re finding the information hard to process:

  • “Can I check I’ve understood you? Do you mean that…?”
  • “This is a lot of information. Please can I record it as a voice note to play back later?”
  • “I’m struggling to process this information today. Do you have a leaflet I can read about it? Or can you e-mail me a link to some information?”

If they’re communicating in the wrong way for you:

  • “I am struggling to understand you. Can I remind you about my access needs? I need you to…”
  • “I can’t hear you. Can I remind you about my access needs? I need you to…”
  • “I can’t see what you’re showing me. Can I remind you about my access needs? I need you to…”

If you struggle with communication because you don’t speak any or much English or because you’re D/deaf, take a look at the ‘What if I need access to an interpreter?’ section of this page too.

Sometimes people find it hard to talk in certain situations. This can include people who normally find talking very easy.

Lots of people have told TransActual that they find it hard to talk during medical appointments. This can be for lots of reasons, but it is sometimes to do with anxiety.

If you know that you struggle to talk when you’re anxious or upset, there are things you could do to prepare for an appointment or hospital stay.

  • Write down the things you’d like to ask or say. If you start finding it hard to talk, you can show the medical professional what you have written down.
  • Record voice notes of you asking the questions you want to ask and saying the things you want the medical professional to know. You can play them during the appointment or when you need to if you’re in hospital.
  • Take a pen and paper and write what you’d like to say as you think of it during the appointment or whilst you’re in hospital. You could also do this with your phone.
  • Print some symbols or pictures to help you to communicate. You could keep them as one sheet, or cut them up and attach them to a key ring. Widgit Health has some good resources for this. Have a look at the Medical Encounter Board and the Bedside Messages resource.
  • Take a friend, family member or support worker with you. Talk to them in advance about what you’d like the medical professional to know and what you’d like to ask. You might have a signal that shows them that you’d like them to talk instead of you.

    During the appointment, the medical professional might ask them to leave the room for a moment. They do this to check that you’re safe and that the person that came with you is not hurting you. Once the medical professional has asked you about this, you will be able to ask your supportive person to come back into the room.
  • Download an AAC app for your phone or tablet device. AAC stands for Augmentative and Assistive Communication. Some people use AAC devices or apps as their main form of communication. If you sometimes find it hard to talk, having an AAC app might be a useful backup option for you. Some AAC apps are free to download and use, others have to be paid for or have in-app purchases. Find information on some AAC apps in this article.
  • Print out and complete a communication passport. If you give it to healthcare professionals at the start of appointments or when you go into hospital, it’ll help them understand how to communicate with you if you stop talking. There’s information on communication passports in the next section of this page.

There are lots of good communication passport and patient passport templates online.

A communication passport is a form you fill in that tells people how you communicate and what parts of communication you find hard.

A patient passport is also a form you fill in. Patient passports often have space to share your communication needs, your name and pronouns, your access needs, and other things a medical professional might need to know about you.

Different people will find different things useful. Use the template that works best for you:

Community voices

“I plan on using the autism passport going forward and also get some of the autism awareness cards which list key elements of my condition.”
“Write out everything you want and just hand it to the surgeon at the beginning of your appointment – they will read and talk through adjustments. Nurses on the ward can have paper instructions for your care too.”
“Be honest with what you need. If you need support it’s better to have it and recover well then stress yourself out more.”
“My surgical team were amazing! I’m autistic and they were so accommodating. I filled in an “autism passport” which asked for details on things like how i respond/feel/communicate pain, things i dislike (sensory wise and general) and things i like.”
“Having someone else who is able to support you and maybe explain when you may seem overwhelmed. It’s helpful to have someone else to keep you grounded and on track, and to maybe reiterate and explain with you after a session what happened. For example, my partner took lots of notes in my consultations. We explained this wasn’t to trip them up, but more that I may space out and forget what is said afterwards, especially when these sessions are often emotionally exhausting.”
“Don’t leave the appointment until you’ve given yourself some time to react, breathe, think, process, and then ask any final questions. Resist being hurried out of the door, because it’s so much harder to follow up and do the admin after the fact.”
“I have brain fog but made them aware I can’t always think what I need to say and they were fine and patient.”
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Errors or omissions

Is there something missing from this page? Have you spotted something that isn’t correct? E-mail info@transactual.org.uk to let us know.

Important to know

  • The information on this page is for your information.
  • The questions and prompts we’ve put on the page are here to help you think about what you might want to say.
  • There might be things missing from this page that it is important for you as an individual to ask or tell doctors, nurses or other medical professionals. It is important that you do ask and say these extra things if you need to.
  • This page was not written by a doctor or a lawyer.
  • This page should not be used instead of advice from a doctor, nurse or other medical professional.
  • This page should not be used instead of advice from a lawyer.
  • We have provided links on this page. We chose them because we think they will be useful.
  • The links on this page might go to pages from a particular hospital, doctor or clinic. This does not mean that TransActual think that the hospital, doctor or clinic are a good one to go to. It is important to find that information out yourself.

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