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Guan lives in China and has Haemophilia A

Doctor & Patient

We understand that visiting your healthcare team can be daunting and you may feel overwhelmed or be unsure what questions to ask. With that in mind, we have developed this short discussion guide to help you when talking to your healthcare team.

Getting the most from your healthcare appointments

It is vital to remind yourself that you are one of the most important members of your healthcare team. Your healthcare team wants you to be as involved as possible, and having an open trusted relationship can help everyone. However, we understand that visiting your healthcare team can be daunting and you may feel overwhelmed or be unsure what questions to ask. With that in mind, we have developed this short discussion guide to help you when talking to your healthcare team - use as many or as few questions as you like, you don't have to cover them all in one appointment.

Questions for newly diagnosed patients and/or carers

  • How often should I visit the healthcare team?
  • Should I be visiting every time my child experiences a bleed?
  • Have the doctor re-check your treatment technique to make sure you are happy with the process
  • What are the symptoms I should be looking out for?
  • What can I expect as my loved one ages?
  • How do I connect with other families that have children with haemophilia?
  • Are there medicines they should or shouldn't use?
  • What are the chances my other children will have haemophilia?

Harry lives in the UK and has Haemophilia B

General discussion

  • Write down the most important question that is bothering you today.
    What do you want to discuss the most with your own or your loved one's haemophilia specialist nurse or practitioner?
  • Ask your healthcare team if they are happy with the general treatment and symptoms, is there anything else that you could be doing to improve your symptoms or the symptoms of a loved one, are you or your loved one adhering to medication?

Discussing exercise

  • Write down any exercises or physical activity that you regularly participate in and check with your healthcare team whether they think there is more or less you could be doing
  • Find out what types of exercise or physical activities you or your loved one should be doing
  • Can they recommend any local sports groups or clubs that would be beneficial?
  • Ask if there are any online resources that could help with exercising and staying healthy at home

Discussing joint health

  • How are you feeling overall about your joint health or the joint health of a loved one? Do you / they suffer with a target joint? Do you worry about what the future will hold in terms of joint health? Write down a couple of sentences about your overall joint health (or your loved one's joint health) and talk this through with the healthcare team
  • Ask the healthcare team if they are happy with your overall joint health or the joint health of your loved one
  • Check to see if there is anything else you could be doing to maintain your joint health or help maintain the joint health of a loved one
  • If you are not already seeing a physiotherapist, speak to your doctor about finding a physiotherapist for you or your loved one

Rafal lives in Poland and has Haemophilia A

Discussing mental health

  • You may feel like the haemophilia specialist team are not the people to talk to about mental health, but they absolutely are! Are you struggling with your mental health? Are you a parent or carer struggling emotionally? Take 20 minutes out of your day and write down five  things that you are psychologically or emotionally struggling with. Order then in priority (1 being the most important, 5 the least). Take this list with you to your next healthcare visit, you may be surprised where the conversation can lead 
  • Check if there are any local support groups that could help
  • Speak with your healthcare team if you think you need to be referred to a specialist for help with any issues you are having 
  • Do not be afraid to be open and honest about how you are feeling.

Potì S, et al. J Multidiscip Healthc. 2019;12:361-375

Related Pages

<b>Changing Haemophilia<sup>®</sup> video library</b>

Changing Haemophilia® video library

We found that sharing knowledge and the experiences of others can provide new information and perspectives. Find a number of videos that portray many stories.