Friends, Family and Carers Support

Your Support Network: Beyond the Haemophilia Centre

As your child grows, it’s natural to worry about their well-being, but you’re not alone! Your local haemophilia centre is available 24/7 to guide you to a wider support network.

Expert Medical Care:

• Specialists: Nurses, consultants, physiotherapists, and paediatricians familiar with bleeding disorders.
• Additional Healthcare: Services for specific needs beyond your bleeding disorder care.

Emotional and Social Support:

• Social Workers: Can assist with practical concerns and emotional well-being.
• Parent and Patient Groups: Connect with others facing similar challenges.
• Buddy System: Find another parent to share experiences and support.

Support for Carers:

Some organisations offer resources to carers, helping them get information, support and recognition, for example:

• Carers UK: Offers guidance on staying healthy, managing work, and connecting with other carers.
• The Princess Royal Trust for Carers: Provides practical support and advice based on the experience of carers across the UK.
• Carers’ Trust offers expert carer support and care services across the county from award-winning, long-established charities.

Local councils often also have Carer networks; you can search for your local care organisation here.

Discuss these options with your haemophilia centre to find the best fit for your family.