Friends, Family and Carers Support

As your child gets older, it is normal as a parent or carer to worry about their welfare, whether linked to their bleeding disorder or not. Your local haemophilia centre is there 24hrs a day, 7 days a week. Your centre will be best placed to direct you to additional support services beyond their scope including: 

• Specialist nurses or consultants
• Physiotherapists
• Play therapists & Paediatricians
• Specialist healthcare in other areas
• Social workers
• Local parent and patient groups

You may prefer to ‘buddy up’ with other parents or attend patient groups to meet people which children at the same stage of life who are experiencing the same things as you. This  is something you can discuss with your haemophilia centre.

There are also organisations who offer resources to carers, helping them get the information, support and recognition for example:

• Carers UK can help you stay healthy, retain paid work, and get connected to a network of other carers.
• The Princess Royal Trust for Carers uses the experience and advice of people from over 144 carers groups nationwide to give you the support you need.
• the Carers’ Trust offers expert carer support and care services across the county from award-winning, long-established charity

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