Turning your haemophilia thoughts into questions for your doctor

Turning your haemophilia thoughts into questions for your doctor

If you have trouble sharing what's on our mind about haemophilia, take a look at the following suggestions on how to start a conversation with your doctor. Feel free to personalise them and use your own words. Your doctor will be able to help answer your questions.

Enjoying my life and connecting with others

What you might be thinking Try asking your doctor
I've stopped doing an activity that I enjoy because I worry about bleeds 'I'd like to get back to doing this particular activity – what changes can I make to help me feel protected against bleeds?'
I don't think my current care fits into my day-to-day routine/family life 'In what ways can we make my treatment fit in better with my current lifestyle?'
I will be travelling and I am wondering how this could affect my care and/or treatment 'What adjustments might I need to make to my treatment and care when travelling?'
I am worried about how having haemophilia could affect my relationships and sex life 'Who can I talk to for advice on relationships and sex for people with haemophilia?'
I don't socialise as much as I would like to because of my haemophilia and/or treatment 'I feel that my haemophilia and/or treatment is affecting my social life – what can I do to help improve this?'
I'm currently facing emotional or mental wellbeing challenges 'I'd like help coping with how I'm feeling emotionally/mentally – who can support me?'

 

Living independently and managing my health

What you might be thinking Try asking your doctor
My joint/joints aren't moving as well as they used to  'I've noticed that I'm losing mobility in my joint/joints (ankle, knee, elbow) – what support or treatment can I receive to help with this?'
'In what ways can I keep on top of maintaining joint health?'
I'm worried about finding my veins when injecting myself 'I'd like support in giving myself injections and finding veins – who can help me with this?'
I'm not sure what to do with my treatment in certain situations e.g. when on holiday abroad or during a bleed 'What should I do before going on holiday (for example, a long-haul flight or staying in a country with limited healthcare services) to keep me protected?'
'What should I do when I have a bleed while on treatment'?
I find that I often miss or skip treatments 'I'm having trouble sticking to my current treatment schedule – what are the options to help me with this?'
I'm experiencing joint pain that is affecting my ability to do things and/or my mood 'I have pain in my joint/joints that is affecting my daily life and happiness – what can we do about this?'
I've noticed that I've been having bleeds even though I've been sticking to my care plan 'I'm not sure that my care plan is protecting me against bleeds as well as it could – could we go through my latest results and have a look at my options?'
I've had a bleed that has hospitalised me  'What could help prevent me from attending hospital in the future for my haemophilia?'
I'm not certain why I'm having a particular medical test 'Could you explain what this test is for and what the results mean for me?'

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.

Turning your haemophilia thoughts into questions for your doctor

If you have trouble sharing what's on our mind about haemophilia, take a look at the following suggestions on how to start a conversation with your doctor. Feel free to personalise them and use your own words. Your doctor will be able to help answer your questions.

Enjoying my life and connecting with others

What you might be thinking Try asking your doctor
I've stopped doing an activity that I enjoy because I worry about bleeds 'I'd like to get back to doing this particular activity – what changes can I make to help me feel protected against bleeds?'
I don't think my current care fits into my day-to-day routine/family life 'In what ways can we make my treatment fit in better with my current lifestyle?'
I will be travelling and I am wondering how this could affect my care and/or treatment 'What adjustments might I need to make to my treatment and care when travelling?'
I am worried about how having haemophilia could affect my relationships and sex life 'Who can I talk to for advice on relationships and sex for people with haemophilia?'
I don't socialise as much as I would like to because of my haemophilia and/or treatment 'I feel that my haemophilia and/or treatment is affecting my social life – what can I do to help improve this?'
I'm currently facing emotional or mental wellbeing challenges 'I'd like help coping with how I'm feeling emotionally/mentally – who can support me?'

 

Living independently and managing my health

What you might be thinking Try asking your doctor
My joint/joints aren't moving as well as they used to  'I've noticed that I'm losing mobility in my joint/joints (ankle, knee, elbow) – what support or treatment can I receive to help with this?'
'In what ways can I keep on top of maintaining joint health?'
I'm worried about finding my veins when injecting myself 'I'd like support in giving myself injections and finding veins – who can help me with this?'
I'm not sure what to do with my treatment in certain situations e.g. when on holiday abroad or during a bleed 'What should I do before going on holiday (for example, a long-haul flight or staying in a country with limited healthcare services) to keep me protected?'
'What should I do when I have a bleed while on treatment'?
I find that I often miss or skip treatments 'I'm having trouble sticking to my current treatment schedule – what are the options to help me with this?'
I'm experiencing joint pain that is affecting my ability to do things and/or my mood 'I have pain in my joint/joints that is affecting my daily life and happiness – what can we do about this?'
I've noticed that I've been having bleeds even though I've been sticking to my care plan 'I'm not sure that my care plan is protecting me against bleeds as well as it could – could we go through my latest results and have a look at my options?'
I've had a bleed that has hospitalised me  'What could help prevent me from attending hospital in the future for my haemophilia?'
I'm not certain why I'm having a particular medical test 'Could you explain what this test is for and what the results mean for me?'

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.