The Irish Haemophilia Society offers outreach and support services including home and hospital visits, regional visits, school visits and counselling to:
- Adults with haemophilia
- Older adults with haemophilia
- Children with haemophilia and their families
- Families with a new diagnosis of haemophilia
- Persons with haemophilia who have been affected with HIV and/or Hepatitis C
- The families of those who have died of either or both viruses
- Carriers of haemophilia
- Persons with von Willebrand’s Disorder
- Women with bleeding disorders
- Individuals with rare bleeding disorders
- Persons with haemophilia and their families who have moved to Ireland from abroad
The ongoing level of personal contact between the I.H.S. staff and I.H.S. members is very high. Each member of staff is trained and educated sufficiently about haemophilia and the ramifications of living with a bleeding disorder to enable them to proactively engage with and assist members. Members build relationships with the staff team from their attendance at conferences and meetings. These relationships are very helpful in allowing us to optimally help the members. We maintain a database for member contact and each call to a member is logged. In this way, we can check to ensure that there are not a large number of members who have not been contacted.
Staff are routinely in contact with members within normal working hours and often at weekends or in the evenings, as many members cannot be contacted by phone during the day, due to work or college commitments. Specific advice and support will continue also to be provided by the I.H.S. in relation to services available under the Health Amendment Act Card to members with HIV and/or Hepatitis C.
Please contact the office on 01 6579900 if you require some information or support.
In the case of an out of hours emergency, please call the office on 01 6579900. You will be directed to the answering machine, where you can obtain contact details of our emergency contact person.
Hospital & Home Visits
The Society offers support to persons with haemophilia, von Willebrand’s disorder, related bleeding disorders and to their families on any issue which relates to their haemophilia or their ability to deal with their medical condition. This support includes regular hospital and home visits.
Meeting members in their homes allows us to integrate our understanding of the issues which specifically affect members in that area and allow us to optimise our advocacy efforts on their behalf. The I.H.S. are aware that not everyone can attend our events due to numerous reasons. However, this does not mean you do not need support. The I.H.S. can arrange a home visit to you at your convenience.
Being in hospital can be a scary and lonely time. The I.H.S. office is located in Dublin City Centre so it is easy for staff to attend St. James’s Hospital and Children’s Health Ireland, Crumlin. If you or your child is in hospital and you feel like you need support, a chat or maybe a newspaper don’t hesitate to contact the office. Remember, the staff are here for you! We can offer you assistance and practical support during your hospital stay.
Please contact the office on 01 6579900 if you need some support.
Academically there is no difference between a child with haemophilia or related bleeding disorder and a child with no bleeding disorder. However, sometimes children may miss school when they are recovering from a bleed. Teachers should do their best to make the child comfortable when they come back, and should help them catch up on work they have missed.
At playgroup and primary school normal play activities present little in the way of problems and the child should be allowed to play alongside the other children. Primary school level sports are usually less competitive and children with haemophilia and related bleeding disorders should be allowed to take part in all activities, unless they have specific problems. In secondary school, sports often become more competitive and injuries are more common. Sports with a high level of physical contact such as rugby or boxing are not recommended.
If your child is starting crèche, playschool or primary school and you are a little worried, please call the office on 01 6579900. We can arrange to visit the school and will talk to the teachers and educate them about haemophilia or a related bleeding disorder. We can also supply the school with I.H.S. publications. This service can be arranged at the school’s convenience.
Benefits & Entitlements
Any member of the Irish Haemophilia Society who wishes to apply for social welfare, will be offered support as follows:
- The I.H.S. will engage with the member and guide them through the process of applying for the benefit with the assistance of Citizens Information.
- The I.H.S. will accompany the member to any meetings, assessments and appeals when requested.
- The I.H.S. will provide the member with a letter which will support the member’s application.
- The I.H.S. will engage proactively with the Department of Social Protection on the members’ behalf.
If you would up to date information in relation to benefits, entitlements and social welfare or assistance in relation to applying for social welfare, please contact the office on 01 6579900.
Please click on the links below to view I.H.S. publications on:
• A guide to benefits & allowances for adults with haemophilia
• A guide for parents of a child with haemophilia
• A guide to benefits & allowances for carers