Preparing for health appointments

“MND feels like being swept away by a current, dragged through the system, landing wherever it decides to drop you. At times it feels like there is no sense of control, only motion. But here’s what I have come to understand: control and self-advocacy aren’t the same thing. Control is about outcomes; self-advocacy is about direction. I can’t control what this disease does to my body, but I can decide how I live with it, how I show up each day, which path I choose to follow, and who’s advice I choose to take.

The truth is, no one, not even the most qualified specialist, lives inside your skin. They can offer knowledge, but not certainty. They can guide, but not decide.

On my MND journey I have learnt to hand-pick what I agree to, how and when. If an appointment doesn’t feel like the right step, I say no. If an appointment is more about data collection than helping me live better, I skip it.

Self-advocacy doesn’t just change how you deal with the medical system, it changes how you see yourself. You are not the patient sitting quietly in the corner anymore. We have to stop asking, “What’s wrong with me?” and started asking, “What feels right for me?”

– Peter Russo, MND Australia Ambassador

Preparing for a health appointment can help you get the care that is right for you. You know your own body and your own priorities better than anyone else.

People living with MND and their families shared these practical ideas:

• Plan ahead where you can. Let the clinic know about your needs before your appointment and think about the best time of day, travel arrangements and what to bring.
• Save your energy. Consider options such as Telehealth, home visits, combining appointments or arranging transport help if these are available.
• Tell healthcare professionals what matters to you. Explain any changes in your condition and any adjustments you need to help you stay safe and comfortable.
• Bring support if you want it. A trusted person can help you communicate, remember information and take notes.
• Be prepared. Bring important health information, write down your questions and keep track of any changes in your symptoms.
• Remember you have rights. You have the right to be treated with dignity and respect, to ask questions, and to be involved in decisions about your care.

Every person with MND is different. You may not need all of these ideas now, but different tips may be helpful at different stages of your journey.

Your healthcare provider

Sometimes I had to politely insist on seeing a health care professional who has experience.

You have the right to ask whether you can see a healthcare professional with experience caring for people with MND (or similar conditions). If the clinic does not have someone with this experience, let them know your State MND Association can provide them with information and support.

State MND Associations can support with upskilling professionals and providing information about MND.

Your needs
Let the healthcare provider know your needs before your appointment. This gives them time to prepare. Even if they know you, your needs might have changed. 

So I rang the clinic and said, ‘This is the change in his condition since he was there. Can you modify how you're going to do it – where you need to put him – so that you can do it?’ which they did, they were terrific.

You may need:

• to stay in your wheelchair during the appointment
• enough space for a large wheelchair and your support people
• power to plug in equipment (such as a BiPAP)
• a quiet room, to make communication easier
• help with transfers (for example, to be weighed)
• access to a suitable bed
• privacy for tube feeding or respiratory support needs (NIV or non-invasive ventilation)

TIP: Explain why your needs are important
You have the right to say what matters to you. Changes are more likely to happen if you can explain why something needs to be done differently.

For example:

“I can’t lie flat, or in a reclined position, because I may choke.” 

“I need more space and wide doorways because my power wheelchair is large."

Appointment times that work best for you

I ended up asking, ‘Can you please put the appointments into one day, so we aren’t travelling backwards and forwards?

• If you travel a long way, ask if appointments can be booked on the same day.
• If possible, book appointments for when you have the most energy.
• Allow enough time between appointments for breaks and moving between areas.
• Ask for a longer appointment if you need extra time to move, speak or get ready.
• If long appointments are tiring or make breathing difficult, ask about having two shorter appointments instead.

Arrange to bring someone you trust 
If you can, arrange to bring someone you trust to your appointment. They can be your partner, friend, or someone else you trust. They can:

• take notes
• help you communicate
• offer another point of view
• help you remember what to do next.

Tell your trusted person whether or not they can speak on your behalf.

There are times where I don't want the support worker to be in the room with me as I want to have a private conversation. In these cases I book the appointment when my partner can join me instead (in person or via phone).

Health care appointments generally happen at a clinic or health care provider’s office, but there may be other options.

Appointments in your home
Some appointments can happen at home. Sometimes health professionals can arrange a visit by two or more health professionals at the same time. Ask your healthcare provider whether this is possible.

Telehealth 
Telehealth can be incredibly helpful when going out by vehicle is not possible. It keeps a connection even though it is not the same as face-to-face appointment.

Some appointments can be done by video or phone (telehealth). This can save time and energy. Ask your healthcare provider whether this is suitable for you.

You can find out more about how to use telehealth here [link], or ask your state MND association to help.

Check access before you go.
Parking and accessible entry.

I needed to make sure I was aware of parking, how close the parking was to where we needed to go. Was the access easy? Was there a ramp? Was there a lift if needed?

Some questions you may like to ask:

• Where is accessible parking?
• How close is it to the entrance?
• Are there parking time limits or fees?
• Where is the best accessible entry?
• How far is the appointment from the accessible building entrance?
• Can you give me directions from the carpark to the appointment area?

Waiting area

But you get parked in the normal waiting room. It is really difficult because [he] would start to choke, but he couldn't cough, so we were in the waiting room, right next to other people, while we're trying to help him cough and not aspirate.

Some of the waiting rooms aren't super accommodating, with small chairs or rigid chairs … you get very tired sitting up straight, with nowhere to lay down or chairs that go back.

Ask if there is space where you can:

• Have some privacy. You may prefer to be in a private area – for example if you have difficulty speaking, or if you experience drooling or coughing.
• Plug in your equipment.
• Sit comfortably with your wheelchair and support people.

Toilets

They’d say ‘yes we've got a disability toilet’ … but then we’d find the door didn't open wide enough.

• Find out which way the toilet doors open.
• Ask where the most accessible toilets are.
• Let staff know if you will need equipment or help to use the toilet (for example, a hoist).

These resources can help you find suitable toilet and changing facilities:

• MLAK key
• National Public Toilet Map
• Home | Changing Places

The day before we went, I had to make sure he did nothing so he could build up his strength and his energy and not waste it I knew the day of the clinic would take it out of him completely.

Appointments can be tiring, emotionally and physically.

If possible, plan to rest the days before and after your appointment.

If you are travelling far, think about staying overnight near the healthcare provider.

“Don’t just book your accommodation online – actually phone the accommodation to ensure that they have exactly what the person needs.”

If you are staying somewhere new, call the hotel to check it meets your needs. (Do not rely on online information about access, toilets etc).

For more tips about booking hotels see ourTravel and Holidays factsheet

Transport 
Save your energy for your appointment. Think about getting there in a way that uses less energy. Some options include:

Taxi. You may be eligible for taxi vouchers or other support. Ask your MND Advisor for more information.
Lift from a support person.
Information about travel subsidies can be found here.

 

Bring important health information, such as:

• list of medicines
• list of other medical conditions
• a completed My Care Needs form
• advance care plan or an Advance Care Directive
• a completed MND Hospital Bedside Alert (if being admitted to hospital)

Keeping this information in one place can make it easier to access. To help with this, you may choose to use MyHealth Record so your information is available to you and your healthcare team, including in an emergency.

Pack your bag – (and plan for delays).

Have a bag packed that's got everything in it that you think you need.

So I had a list of very practical things that I needed to grab ... because they were very easy to forget, otherwise you'd be making several trips back for him to pick them up.

You might be there longer than expected (especially if you go to a hospital). Pack a bag with:

• food and water for everyone (including a syringe if you use a PEG).
• toileting needs: (pads or pull-ups, scissors, wipes, plastic bags, spare clothes)
• umbrella or raincoat
• phone charger or battery pack
• warm clothes or light blanket.

You get so tied up in doing all these appointments … then about 3 o'clock in the afternoon, I’d be starving, hungry. Where do we get him something to eat? So, it's useful to take a picnic.

Every visit we had, we wrote down in great detail what we were there for, and dot-pointed it so that nothing got missed. It can help to write down your questions before your appointment. The ultimate key is to be as prepared as possible. I always write down any questions I may have before going to any appointments.

Write down your questions
Think about:

• What is affecting your daily life?
• What needs attention right now?
• What matters most to you?

Some suggested questions for you to ask:

• What should I expect in the near future? How can I plan ahead?
• What is the best-practice advice for managing my symptoms?
• How can I connect with other people living with MND like me?
• How can we access more care and support at home?
• What respite care options are available?

Questions your health professional may ask you

Being caught off guard by questions can be unsettling, especially if you’re fatigued or anxious.

You may be asked about:
 

• Medications: Are you taking everything as prescribed? Any side effects?
• Symptoms and changes: What’s changed since your last visit? Any new symptoms? How is your breathing/swallowing/speech?
• Daily functioning: What can you do now that you couldn’t before, or vice versa? How are you managing at home?
• Support and care: Who helps you at home? Is that support enough?
• Mood and wellbeing: How are you coping emotionally? Are you sleeping?
• Goals and preferences: What matters most to you right now? What do you want to focus on?

Keep a track of symptoms
Keeping track of symptoms can help you share what is changing.

You can:

• write notes in a diary or online.
• use a simple online tracker like this or an app like this.
• You can also use the My Care Needs form to explain what you need to stay safe.

Communicating

What I have seen more times than I like is that the health professional will direct questions to the carer or family member, instead of the person with MND.

Let your provider know whether:

• they should talk to you directly, or to your support person.
• you need time for you or your carer to meet alone with the healthcare professional.

If speaking is difficult, see ourspeech and communication resources.
Remembering what was discussed at your appointment
Ask your health care provider for:

• a written summary of the appointment – (including any words you are not familiar with, or instructions they give you)
• a copy of any referrals they make
• relevant pamphlets about medications or procedures

or, you or your trusted person can take your own notes.

Remember you have the right to be treated with dignity and respect. If things go wrong or you feel dismissed, you have the right to a second opinion or you may choose to make a complaint. We hope the ideas in this resource make appointments safer, easier and more useful.