The HMViP team has created a series of short films to support patients. This one addresses a patient’s first appointment.
Your first appointment is a crucial step in your journey towards improved respiratory health. During this appointment, you’ll meet with your healthcare team, which can include doctors, nurses, and physiotherapists. It’s an opportunity to discuss medical history, address concerns, and establish a personalised care plan.
This video provides you with an understanding of what to expect and guides you through the procedures which your medical team will carry out. We’ve also provided below a Q&A with Dr Becky D’Cruz who features in the film below and a list of questions which you might ask your consultant at your first appointment.
A Q&A with Dr Becky D’Cruz, Consultant at Guy’s and St Thomas’ Hospital
Can you briefly introduce yourself and your role at the Lane Fox Respiratory Unit?
I’m Dr Rebecca D’Cruz and I’m a Respiratory consultant at the Lane Fox Respiratory Unit. My role involves meeting patients in clinic who may need home ventilation now or in the future, and following-up home mechanical ventilation users to monitor their health and ventilation.
Could you tell us why it’s important for our viewers to watch this video?
You might have sought out this video because you have an upcoming appointment at a ventilation clinic. You may not know why you have this appointment or what to expect. We hope this video can take you through the process step by step, from why you were referred to the clinic, to what to expect on the day of your appointment, and what happens after your appointment.
What is the point of your ventilation clinic appointment?
The purpose of your first outpatient appointment at a Ventilation clinic is to get to know you, understand the health condition that may mean we would recommend a home ventilator, and tell you more about what a home ventilator is, how it is used, and why it is recommended.
You may have been referred from another hospital to the specialist ventilation clinic as another clinician feels you could benefit from a specialist consultation. Some ventilation centres provide ventilator machines to patients when they are admitted unwell to their local hospital before they are discharged. The purpose of your ventilation clinic in this case is to meet the team that provided your ventilator, monitor how you are getting on with it, address any problems and arrange follow-up in the long-term.
What can patients expect at their appointment?
At the clinic, you’ll meet with the specialist team, which can include doctors, nurses, and/or physiotherapists. You will be welcomed by the staff and guided to a clinical room, where you will have some measurements taken before you meet the specialist clinician. This will usually include your height and weight, and oxygen level and heart rate using a finger probe.
You will then meet the specialist ventilation clinician. They will ask you detailed questions about your health, breathing symptoms and sleep symptoms. They may perform additional tests, such as measurement of your breathing strength (“sniff test”) and the force of your cough (“peak cough flow”), blowing tests (“spirometry”) and testing of your oxygen and carbon dioxide levels. This may involve a blood test at the wrist called an arterial blood gas. This can be a temporarily painful test and you can ask for local anesthetic to numb the skin. They may wish for you to have tests such as lung function testing for which you may be offered a separate appointment, or an “overnight oximetry”, which is a sleep test that you can do at home to monitor your oxygen level, heart rate and other measurements while you sleep, usually using watch, finger probe and chest sensor. Your clinician may recommend an overnight hospital stay to monitor your breathing while you sleep, if they need extra measurements that cannot be taken at home.
What’s the significance of these tests?
These tests help us create a clear picture of your respiratory health. They enable us to understand whether home ventilation would be recommended for you and to tailor our approach and recommendations according to your individual needs.
Will I be given a ventilator at my clinic appointment?
If your clinician recommends home mechanical ventilation to you, they will explain what is involved with this therapy, and why they are making this recommendation for you. Depending on your particular case and the specialist clinic, you may be given a ventilator machine that same day. You will be shown the equipment and use it for a short period so you can get used to the sensation, and given training so that you feel confident using it at home. It can be helpful to bring a family member, friend or caregiver with you to support you with this. In other cases, your clinician may recommend that you are admitted to hospital for usually 1-2 nights to issue you with a ventilator. This allows a higher level of monitoring and time to personalise the ventilator to suit you.
How important is the patient’s participation in this appointment?
This is your chance to voice your concerns, ask questions, and actively engage in your healthcare journey. Feel free to ask about your condition, potential treatment options, and how we can support you. You may not be clear on why your clinician has recommended home ventilation to you – your clinic appointments are your opportunity to discuss this. We understand that using home ventilation can require time, patience and commitment. You will feel more comfortable and confident in using your ventilator if you are clear on why it has been recommended to you and what its potential benefits are. Questions about lifestyle adjustments, medication, and the overall management plan are also beneficial. You might want to bring a list of questions you might have, and if you’re not sure what to ask, we’ve provided a sample list which can be found in the ‘living with HMV’ section on our website.
How do patients typically feel after the appointment?
Many patients express relief and a better understanding of their situation. They often appreciate the clear communication and personalised care plan that we provide during the appointment.
What happens after my ventilation clinic appointment?
If your clinician has recommended that you would benefit from home mechanical ventilation, they will arrange a follow-up appointment to see you again. All home mechanical ventilation users are followed up indefinitely by the specialist ventilation clinic. If you have been given a ventilator machine, you will be given details of who to contact if you run into difficulties or have further questions before your next appointment. It is very important that you attend your follow-up clinic appointments. Ventilator machines are specialist equipment that need regular checks and servicing, and your clinician needs to monitor you at regular intervals to check that it is supporting you in the way it should and understand whether its settings need to be adjusted to support you better.
How does the detailed PDF guide complement this video?
The accompanying PDF guide serves as an invaluable resource beyond this video. It outlines the steps of the elective referral process, provides additional insights, and offers a list of questions for you to consider. It’s a tool to support and empower you as you continue your healthcare journey.
What message would you like to convey to patients who are considering an elective referral appointment?
Our team is here to support you every step of the way. An elective referral appointment is a collaborative effort to improve your respiratory health. We’re dedicated to providing compassionate care, addressing concerns, and working together towards your well-being.
Questions to consider asking your consultant at your first appointment:
- Why do I need HMV?
- How does it work?
- When do I need to use it? Do I need it all the time or only at certain times of the day?
- What will happen if I don’t use my NIV?
- Will I become dependent on it?
- What will happen if it breaks down?
- Who will train my family / carers if I need assistance?
- I am claustrophobic – will I manage to tolerate the mask?
- Will the noise disturb my partner?
- Does it use oxygen?
- If it uses electricity, how expensive is it to run?
- Will I be able to speak with the mask on?
- What benefits can I expect to see/experience?
- How will I know that it is beneficial/working?
- What equipment will I need?
- Is there anything that my family and carer need to be aware of? Will they receive instruction in how to support me?
- Are there any downsides to starting HMV treatment?
- How often will I need to come into clinic?
- What do I need to bring with me for regular appointments?
- What tests will you do?
- What happens if I need to be admitted to another hospital? Do I need to contact the clinic here or will the hospital automatically contact you?
- How do I get spare equipment if I need, for example, new tubing or a mask?
- Is the equipment portable? Can I take it with me if I go out for the day?
- What are the implications for travelling with my ventilator?
- Is there a resource which offers troubleshooting information?