Information for patients and carers

The short video below describes why and how we created the consultation support tool with the help from patients and their doctors.  We want to be able to improve the way doctors, nurses and patients communicate with each other and share information.  To be able to progress this work further, we would really value your opinions about the tool, but we will explain a bit more about this later.  As a starting point, please watch the video or read the script of the video by clicking on the link below.

Script for the video clip introducing the consultation support tool.

My name is Lynn and I want to introduce you to a consultation support tool that we developed in the cancer department of a large teaching hospital in the East Midlands.  This research was funded by NIHR Research for Patient Benefit and was supported by the University of Leicester and the hospital Trust.

A group of patients who were diagnosed with cancer and some carers were very much involved in the design and conduct of this research project from the start and helped with the final design of the consultation support tool.

If you want to read about this study then please go to the publications page on this website and select the paper published in the British Journal of Cancer called Improving consultations in oncology. The link will take you straight to the paper.

In summary, though, we wanted to develop a tool which could be used jointly between patients diagnosed with cancer and their doctors or senior nurses.  We wanted a tool to help improve communication and the sharing of information in the consultation and to create a positive consultation experience for all involved. As a team of clinicians and academics working in cancer services, we recognised a need for a tool such as this.

At the start of the study we had no idea what the tool would look like or what information it would contain. The final product would be determined by what patients and doctors told us about their consultation experiences with each other and what we learned from the audio recordings of these consultations.

We found that despite advances in the way doctors are taught communication skills some doctors were often uncertain or hesitant about what information they could share with patients. They were uncertain about what patient’s had been told about their cancer diagnosis and possible prognosis (which is a doctors opinion of the likely or expected a progression of a disease or of a patient’s chances of getting better). This is often a difficult conversation to have with patients. Some uncertainty came from the fact that they didn’t always know what information their colleagues in other departments might have told patients before they saw them or they could not tell how much information a patient may want to know. This was not a new finding and is a challenge mentioned in a number of medical journals.

We also found that patients’ needed to be better informed about what happens in consultations, and how the conversations may unfold. They often didn’t know what to expect. Patients’ also needed to be better informed about how they might want to prepare for a consultation. By this we mean, think about what level of involvement they may want to have, what they specifically wanted to know, whether or not they wanted detailed information and how involved they might want to be when making decisions about their care and treatment plan.

When we analysed the data, we designed the tool and ran some  focus groups with doctors and patients to explore what they thought about the consultation support tool. Their views were very positive and a number of patients told us that they wished they had had such a tool to use when they were first diagnosed with cancer.

The tool is in three parts.

1. There is a booklet called Your consultation which is designed for patients and their families to read. The information in this booklet is taken from patient accounts and what they wish they had known.

2. There are two leaflets: One is called your first consultation with the cancer doctor (oncologist) and the second is called a follow-up consultation to be used when the patient feels the need to use it. The idea behind these forms are to help patients be clear about what they already know, what they want to know and how involved they might want to be in terms of making decisions about their care and treatment. They can then share this information with the clinical team prior to seeing the cancer doctor. For further information about this see the video clip for patients about how we suggest the leaflets are used.

3. The third part of the tool is a booklet called a guide for doctors which has been produced to remind doctors of the basics of communication-based on the findings of our research study. For further information about how we think doctors and senior nurses might use the consultation support tool please see the video clip for healthcare professionals about how we think you might want to use the consultation support tool in your clinics or if presented with it by one of your patients.

We have used the tool in a couple of small pilot studies but the tool isn’t routinely used in clinical practice yet. We want to design and carry out a much larger research project using the tool but before we can do that we want to invite patients diagnosed with cancer and their doctors or senior nurses to use the consultation support tool with each other. We want to know if using the consultation support tool has been useful and if it is easily accessible online.

We have included a short questionnaire we hope you would complete to help us develop this work further and if possible we would be interested in chatting to some of you to find out about your experience of using the tool and/or accessing it in this way.

If you are willing to talk to one of the team then please indicate this on the questionnaire or use the contact page on this website to get in touch with us if that is easier. Any chat would be kept brief and can be conducted over the phone, via email or on skype for example.

Thank you for taking the time to watch this video and we look forward to hearing from you. If you have any questions please don’t hesitate to contact us via the contact us section of the website.

Guidance for patients using the consultation support tool

We have observed the tool used in a handful of consultations.  We have also listened to patients describe their experiences of using the tool with their doctors and we
thought it might be helpful to share some of our findings with you in the following short video.  This video will also explain how best to use the tool.  

Advice for patients using the consultation support tool

If you read the patient booklet you will see answers to some of the questions or concerns that patients raised with us in our original study.  For example, why do I see a different doctor to my Oncologist, or why have I been waiting so long to be seen in the clinic.  You will also see some quotes from patients describing their experiences or thoughts.  These are patients who have been through the journey that you are now starting on.  There are also some suggestions to help you prepare for your consultation.  We found in our study, that some patients and their partners or family members prepared questions before seeing the doctor but didn’t always feel they could ask their questions in the consultation.  Some patients left their consultations confused or uncertain about what was happening to them and doctors were not always aware of this. 

In reality, doctors tend to follow their own particular style of conducting discussions with patients because this becomes familiar to them and helps them ensure that they cover everything that they need to cover.  We call this the doctors agenda.  Whilst this approach is good in many ways it can fail to take into account your specific needs and let’s face it, this is your consultation.  You have a limited amount of time to say what you need to say and to learn what you need to learn. 

You may not remember me saying this in the first video but sometimes doctors are:

> uncertain about what you already know and

> what you might want to know and

> how involved you might want to be in helping to make decisions about your treatment plans and care. 

So, the leaflet achieves two main things.  It helps you prepare for your conversation with the doctor and if completed well it helps the doctor understand more about you. I have completed a form so that you can see what this might look like and it will appear at the end of the video. 

We have tested the tool out in clinics with a small number of patients and their doctors. We saw that this tool can really help the doctor tailor what they need to say, to help you.  Some doctors told us that they thought the tool made them look more professional and organised.  They also told us that they thought it reduced the anxiety of some patients early on in the consultation because they could address their main concerns first.  Additionally, some patients told us that whilst they might have been anxious on first reading the leaflet and walked away from it.  It did actually help them think about what was happening to them and process their thoughts in the privacy of their own home.  They then went back to the leaflet and filled it in.  When they did this they felt much better.  Some patients also told us that the tool also helped them have better conversations with their family about what was happening to them. 

So, how might you use the tool? Well as the tool is online we can’t really control how you use the tool but we suggest the following: 

1.Read the booklet ‘Your Consultation’ booklet before seeing cancer specialist and as and when you want to dip into it (some patients told us they read it on a number of occasions).

2. If you are seeing the cancer specialist for the first time, then complete the first consultation leaflet and take this with you to your hospital appointment.  You might want to ask the receptionist when you arrive in clinic to put this leaflet on the top of your medical notes so the doctor sees it before seeing you, or you could just hand it to the doctor when you are being introduced to each other.  You might also want to tell them about this website and how they can learn more about the tool and how they can access it. 

3. For future consultations, you might want to consider using the follow up leaflet which also asks you to indicate if you want to see any scan results or x-ray images in the consultation.  If you want to do this, it might be better if the doctor knows about his before seeing you so that they can get the images ready for you.  Please note though that we have no control over this and if the reports aren’t ready or the doctor doesn’t have those facilities to hand then this might be difficult to achieve.  

At the end of the consultation you can either take your leaflet home or ask the doctor or nurse to put it in your medical notes.

One important point to take away from this is that these are your consultations at the end of the day and you need to feel confident and comfortable about addressing your agenda.  For example, your specific need for information and involvement in your care and doctors and nurses are very much aware of the importance of this.  So, this tool will help you and it will also help them.

The two parts of the patient consultation support tool can be found by clicking on the images below.  The patient booklet which has useful information for you is called ‘Your Consultation’.

When you click on this image below, the booklet opens up. You can then download the booklet and read it whenever you need to.  Your family or close friends might also find it helpful to read.

The leaflets which you can write on to share with your doctor or nurse are presented in two different ways. Sorry if this is confusing, but it gives people the choose which option they prefer best.

  • Option 1: So if you want to simply print off the leaflets you can click on the image of the leaflet and print it off.
  • Option 2: If you would like to complete the leaflet online, you can click on the box called ‘First Consultation Leaflet’ if it is the first time you are meeting your cancer doctor, or the ‘Follow up Consultation Leaflet’ if you are seeing your cancer doctor again.  You can complete the leaflet online and when completed it will save to your email address.

You can then show your doctor or nurse an online version of your leaflet.

Your First Oncology

First Consultation

Follow up Consultation Leaflet

Can you help us out?

As we explained earlier we would like to hear your thoughts about either the tool itself or how you used the tool.  This information will really help us make recommendations for improving how we share information in consultations.  It would be really helpful if you could complete the form below and indicate to us if you would be happy to chat to us about your experience of using the tool.