WFH Congress – Patient & Provider Perspectives
The format of this Session was to hear from a patient, a healthcare professional, and the audience on three subjects.
Adherence to treatment regimes
There was a strong feeling that while patients are ultimately responsible for whether or not they treat themselves there are a lot of considerations that can make things more difficult. Sometimes people simply don’t want to be reminded about your condition. Often young people feel bullet proof and want to take risks. People also have busy lives which can make always taking treatment on time difficult. We also need to remember that injections can be painful and distressful experiences when you are young can make things harder as an adult. Even though everyone accepts treatment is a patient’s choice it can be hard for healthcare professionals not to take lack of adherence personally.
Some people think negatively about counselling and see it as a sign of weakness. However, bleeding disorders in a family can lead to feelings of guilt, blame and resentment. Usually, people feel better about any issue if they talk about it. For most issues in life we talk to our friends and don’t think of getting a professional involved. However, formal counselling has several advantages.
– Can talk to people who aren’t so close to you that they are personally affected.
– Can give you the time and space to think about issues.
– There is no judgement in a professional counselling environment.
Talking to other people who have similar experiences can also be an important part of the counselling process. Properly training Patient Educators can help the to tell when someone needs professional help with an issue. Trained Patient Educators can help puncture the myths that can develop in some peer support groups.
Sexuality and Risk Reduction
Discussing issues around sex can be difficult for everyone involved. Conversations can be ducked in the Centre but many parents look to the Centre to raise these issues and vice versa. In reality everyone shares the responsibility. If a young person raises the issue it is likely they have thought carefully about who they are comfortable talking to.
Young people can be sexually active younger than either their parents to there Centre Team realise. Therefore, if problems are to be avoided it important to discuss these issues early. It may also be necessary to ask parents to step out of the room to allow a frank conversation. The language young people use when talking about sex, and what they mean by it, changes fast; it’s important to make sure you aren’t talking at cross purposes.
A good rule of thumb for questions about bleeding disorders and sex is “if you have blood there you can bleed there.”
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.