Ask The Nurse // 3rd March 2020
Receiving a myeloma diagnosis is life changing. Patients, carers and family members not only have to adapt to the diagnosis but also learn how to navigate the healthcare system. As well as learning about medical terminology and processes, patients and carers also need to learn to ask questions, build relationships and ask for help.
We often get calls on the Myeloma Infoline and emails through the Ask the Nurse service from patients and carers asking our advice about how to deal with communication issues, what they can do to get the most from their care and improve their relationship with their team.
I often get frustrated after my appointment because I haven’t discussed everything I wanted to.
One thing you can do is to write a list of everything you want to discuss or ask in your appointment. This means you have a checklist to refer to so you are more in control of your appointment. You might even find it helpful to give the list to your haematologist or clinical nurse specialist so they can go through it with you.
If you still find it difficult to express yourself you can try rehearsing your questions with someone before your appointment. This can help you find the right words and an easy way to get your point across.
Making your team aware of your frustration can also help. If they know you are finding it hard to remember things or are feeling nervous about raising certain topic they can make allowances. They can make sure there is time for questions, give you prompts or proactively bring up topics you find hard to discuss.
Try not to be annoyed at yourself if you forget something; you will get other opportunities to ask questions and discuss your care.
I find my hospital appointments overwhelming and I often come out feeling more confused. What can I do?
If you’re finding it hard to remember everything said you can try recording your appointment, especially if you find it hard to write everything down. You can listen to it at home and write down things you don’t understand to ask later.
Taking someone with you can also help. They can help write notes, ask questions and even discuss the appointment with you afterwards.
You can also ask questions outside of your appointment. You can ask your clinical nurse specialist, your friends and family or our team of Myeloma Information Specialists on the Infoline (0800 980 3332) to clarify things for you.
Remember, there is no limit to the number of questions you can ask so don’t be afraid to repeat yourself or ask for clarification if you don’t understand.
My partner doesn’t ask any questions about their care or want to know anything about their myeloma. What can I do?
It is very common for one person, patient or carer, to want to know more than the other.
There are many ways to find out more about myeloma. Myeloma UK has a selection of publications to help you learn more about myeloma, its treatments and potential complications. The clinical nurse specialist or our team of Myeloma Information Specialists can also answer your questions.
If you have specific questions about your partner’s health it can be more challenging due to patient-doctor confidentiality.
We would suggest you start by talking to your partner about how you are feeling and let them know you would like to ask their healthcare team some questions.
Provided you are both happy to do so, you can ask questions during appointments when your partner is present.
If your partner is happy for you to know more but doesn’t want to be there when you are asking questions, they can give verbal consent by letting their healthcare team know they are happy for you to talk to them directly.
My healthcare team is split across different departments and I am worried they are not communicating well. Who can I speak about this?
As a first step, we would recommend that you tell your consultant if you have an appointment with a different department (e.g. orthopaedics, palliative care) as they are not always aware of all the appointments you have.
If you are still noticing issues you can speak to your clinical nurse specialist about your worries making them aware of the communication issues you have experienced. The clinical nurse specialist will have access to your medical notes and may be able to liaise with relevant staff to highlight your frustrations and to improve communication.
You can also contact the Patient Advice and Liaison Service (PALS) team at the hospital. They are there to help resolve concerns or problems when using the NHS, tell you how to get more out of your NHS experience and give you information about the NHS complaints procedure. You can contact the PALS team directly, via the main reception at the hospital or you may be able to find contact details on the hospital’s website.
For more information about what to expect or what to ask in an appointment, you can watch our video “Getting the most out of your clinic appointment”
You can also read our “Infopack for living well with myeloma” for more advice on living with myeloma.
If you have any questions about communication issues or building relationships with your healthcare team you can get in touch with us through the Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or the Ask The Nurse email service.
The Myeloma UK Information Specialist Team