guide and checklist - novartis · you get enough vitamin d. 07 — patient consultation guide and...

Patient consultation guide and checklist: Making the most of your appointment

About this guide

This guide is designed for you to get the most from your appointments with your doctor or nurse. It provides advice on how to share the right information about your melanoma diagnosis to ensure you receive the best possible care and treatment.

This booklet also includes some upfront information about the multidisciplinary care team who may be involved over the course of your care, and where you can find more information about the support that is available to you.

03 — Patient Consultation Guide and Checklist

Contents

01 — Introduction to your melanoma multidisciplinary care team

02 — Working with your multidisciplinary care team

03 — Things you may want to consider / ask:

— Before your appointment

— During your appointment

— After your appointment

04 — Patient checklist

05 — Questions to ask your healthcare practitioner


Introduction to your melanoma multidisciplinary care team1

Being diagnosed with melanoma can be a stressful, worrying and lonely experience, but knowing your care team and understanding your condition and symptoms can help you be more involved in the decisions about your care and treatment. Through the course of your care and treatment, you will meet a range of healthcare practitioners who specialise in different areas of treatment or support. It’s important to understand what their individual roles are and how they can support you with your diagnosis and treatment.

Your main medical team may include:

— Dermatologists (doctors who specialise in skin conditions)

— General practitioners (doctors who provide routine healthcare, including basic tests)

— Nurses (nurses of various specialties may be involved in your care, through diagnosis, surgery and treatment)

— Oncologists (doctors who treat cancer with drugs or radiotherapy)

— Pathologists (doctors who examine tissue samples)

— Plastic surgeons (doctors who repair or rebuild missing or damaged areas of tissue or skin)

— Radiologists (doctors who carry out and examine scans of the body)

These professionals often work together in a team called a ‘specialist skin cancer multidisciplinary team’ (or MDT for short). Not everyone will have access to all these healthcare professionals. Ask your dermatologist, oncologist or nurse to tell you who will be part of your care team.


Working with your multidisciplinary team

Your care team should talk with you about melanoma and they should explain any tests, treatments or support available to you. Your family or carer can be involved in helping to make decisions, but only if you agree. There are questions in this guide that you can use to help support you in speaking with your multidisciplinary care team.

Your care team will consider many factors when advising you on the best treatment for your melanoma, which will take into account your general health, the stage of the melanoma and its location on your body.2 They will also refer to national treatment guidelines to decide the most suitable treatment for you.3

During your appointment, they should also:4

— Give you information that is tailored to your own needs.

— Ask you what other types of information and support would be helpful to you, for example if you want to know whether your relatives could develop melanoma and how they might reduce their risk.

— Tell you about the support that’s available to help with any problems you might have because of your melanoma, such as physical side effects from treatment, anxiety and worry about the melanoma, or practical problems with work, school or finances. They should also give you this information in written form, such as a leaflet, that you can keep.

— Provide a nurse called a skin cancer clinical nurse specialist to help with any questions or concerns you have.

— Tell you how you can contact a member of your care team quickly and easily, and give you this information in a written form that you can keep.

— Invite you to bring a companion, such as a friend or family member, to your appointments if you wish.

— Explain how you can protect your skin from sun damage while making sure you get enough vitamin D.


Things you may want to consider / ask before, during and after your appointments

Your appointment is an opportunity to openly discuss the impact of melanoma on your life, as well as work closely with your doctor or nurse to discuss and agree next steps. There are three stages to think about:

01 — Before your appointment

02 — During your appointment

03 — After your appointment

The checklist at the back of this booklet outlines the different aspects of your appointment that can act as a prompt for discussions, as well as some questions that might help to guide your consultation.

01— Before your appointment

— Thinking about what you want to get out of your appointments before you go will help you to have more productive conversations, allowing you to ask specific questions about your diagnosis and care and cover everything you need.

— Take time to prepare and write down key points you want to discuss with your doctor or nurse at your appointment, giving specific examples where possible, to provide context.

— Some people find it useful to talk through what they plan to discuss with family, friends and carers before an appointment.

02— During your appointment

— Take your time – try not to feel rushed, stay relaxed so you remember the key points you wanted to discuss. Referring to your notes should help with this.

— Be forthcoming – do not wait to be asked about a symptom or a concern. Tell the doctor or nurse what is on your mind. Give as much information as you can by referring to your list if you have prepared one.

— Be open – tell your doctor or nurse about how you are feeling and your overall wellbeing. Try to be specific about what is affecting you.

— Write things down – particularly if you do not have time to discuss everything you wanted to raise. If you have someone with you, ask them to write notes for you.

— Ask questions – do not be afraid to ask questions if there is anything you do not understand. It is important to be completely clear about your treatment and care.


— Keep a record – make sure that you obtain a copy of any relevant documents during your discussion, such as referral letters and test results, as you may need to refer back to them later.

— Agree your next appointment date – find out when your next visit will be and what you need to do before then, as well as agreeing next steps for your action plan.

03— After your appointmentHopefully you will have left your last appointment with a plan of action on how you want to manage your melanoma. Here are some suggestions to help you reflect and remember the key points you discussed and agreed:

— Reflecting on your appointment – if you took notes during your appointment, it’s worth re-reading them now to check if there is anything missing and/or if they make sense. Did you get answers to all of your questions?

— Updating your family, friends or carer – you might find it useful to tell your friends, family or carer about the outcomes of your appointment. This will ensure that they are fully informed about your care and are able to support you with your agreed next steps. If they were in the appointment with you, it may be useful to reflect on your appointment together. If they attended with you, do they agree with your thoughts and understanding of what was discussed? Is there anything you may have missed?

— Follow up appointments – while it’s still fresh in your mind, it might help to think about what went well and what you would like to do differently at future appointments. What questions would you have liked to ask? Make sure you make a note of these questions so that you have an opportunity to ask them at your next appointment.


Patient checklist

Your melanoma multidisciplinary care team Y/N Notes

Have you asked your dermatologist, oncologist or clinical nurse specialist who will be looking after you and do you know who will be involved in your care and treatment?

Do you have contact information for easy and fast access to your care team?

Have you received written information about your diagnosis, e.g., a leaflet?

Before your appointment

Have you thought about what you want to get out of your appointment?

Have you prepared a list of questions or key points you would like to cover with your doctor / nurse?

Have you spoken with your family / friends / carer about your appointment to support you in getting the most out of your appointment?

During your appointment

Have you brought a pen and notepad with you to take notes or do you have someone with you who can take notes on your behalf?

Have you asked for copies of any relevant documents, such as referral letters or test results which you can refer to later?

Have you agreed a plan of action or clear next steps with your doctor or nurse?

Do you know roughly when your next appointment will be so that you can prepare for it?

After your appointment

Did you get answers to all your questions?

Is there anything you may have missed?

Have you spoken to friends / families / carers about your appointment?


Questions you may want to ask your healthcare practitioner

General questions: — How will I be involved in making

decisions about my tests and treatment?

— Who will I be able to talk to about my tests and treatment?

— How does my age, health and other factors affect my options?

— What will happen if I do nothing?

Questions about the stages of melanoma:

— What stage is my melanoma? What does this mean?

— How will the stage of melanoma affect treatment options available to me?

— Does this mean the melanoma has spread?

— What steps can I take to reduce the risk of developing a new melanoma or other type of skin cancer?

Questions about melanoma treatment:

— What treatments are recommended for my stage of melanoma?

— Is there a treatment option that works best?

— How quickly must I make decisions about my treatment?

— What is targeted treatment? What is immunotherapy?

— How does knowing what gene mutation I have affect how my melanoma is treated?

— What is the BRAF mutation and why does it matter?

— What are the risks and benefits of each treatment for melanoma?

— Where will I be treated? Do I need to stay in hospital or can I go home after each treatment?

Do they agree with your thoughts and understanding of what was discussed?

Is there anything you need to do to prepare for your next appointment?

Is there anything else you can do to ensure that you are fully prepared?

Continued


References

01. NICE. Melanoma: assessment

and management. Available

at: https://www.nice.org.uk/

guidance/ng14/ifp/chapter/

Skin-cancer-melanoma.

Last accessed April 2019.

02. Macmillan Cancer Support.

How treatment is planned.

Available at: https://www.

macmillan.org.uk/information-

and-support/melanoma/

treating/treatment-decisions/

who-will-be-involved-in-my-

treatment-decision/treatment-

planning.html.


03. Macmillan Cancer Support.

Getting a second opinion.

Available at: https://www.

macmillan.org.uk/information-

and-support/melanoma/

treating/treatment-decisions/

who-will-be-involved-in-my-

treatment-decision/getting-a-

second-opinion.html#18873.


04. NICE. Melanoma: assessment

and management –Information

and support. Available at:

https://www.nice.org.uk/

guidance/ng14/ifp/chapter/

Information-and-support.


— When can I start treatment?

— What is my chance of being clear of melanoma after treatment?

— What side effects should I watch for during treatment?

Questions about surgery (if relevant):

— What surgery do you recommend for me? Why?

— What is involved in the surgery?

— What problems do I need to watch for after surgery?

— Does having surgery mean my melanoma won’t come back?

General questions about getting hold of more information on melanoma:

— Can you recommend any websites or reading materials about melanoma?

— Are there any cancer support organisations in my local area?

— Can you provide information for my family or carers?

Family members or carers: — What can I/we do to help and support

the person with melanoma?

— If my family member has been diagnosed with gene mutated melanoma, am I at higher risk of developing melanoma?


Job number: ONC19-C049c Date of preparation: April 2019

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