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World Haemophilia Day 2021

Today marks World Haemophilia Day and this year’s theme is “Adapting to Change. Sustaining care in a new world”. This is something we’ve all had to deal with in the last year. We’ve all had to make changes and do things differently. Please remember that even though we haven’t been able to meet and hold events face-to-face, that you can still get in touch with us for support. We are just a phone call, Facebook message, Twitter message or email away.

Infected Blood Inquiry Hearings

With the Belfast hearings taking place this week (week beginning 29th March 2021), Haemophilia NI is here to support our members affected by the contaminated blood crisis. If you are affected by the inquiry hearings and wish to talk to a member, Simon Hamilton would be happy to speak with you in confidence or help you access the Trust's or inquiry's psychology support.

International Women's Day

Today, as International Women's Day, is a real opportunity to recognise and thank all the women in Northern Ireland affected as mothers, sisters, daughters and carers who dedicate love and support to haemophiliacs. They play an immense part in handling the health traumas and carrying the worries of their loved ones in the everyday experience. We would like to remember the wives and partners of haemophiliacs who have succumbed to their health challenges (which is particularly pertinent in light of Minister Swann’s recognition of financial support last week). We would also acknowledge the community of women sufferers with von willebrand’s disease and other bleeding disorders. Your struggle is our struggle too.

Findings of the Northern Ireland Infected Blood Payment Scheme

The final report can be found on the DoH website and represents the response of scheme recipients to a survey conducted by the Department. This was in response to the meetings held with Minister Robin Swann where he committed to engage with infected blood scheme recipients. Haemophilia NI Chairman, Simon Hamilton, explains

“When the campaign group met with Minister Swann last February and March, he committed to provide an uplift for scheme recipients that was delivered at the end of the summer. This was part of the three phase plan he discussed with us and the welcome announcement of uplift for the non infected bereaved spouses and partners is another part of that. The report was carried out as part of his engagement with victims and provides a breakdown of responses.”

PRESS RELEASE: Minister Announces the Introduction of Financial Support to Infected Blood Bereaved Spouses and Partners

News that the Health Minister, Robin Swann, has decided to introduce annual financial support for non-infected bereaved spouses and partners of victims of contaminated blood has been strongly welcomed by the local charity Haemophilia NI. Their Chairman Simon Hamilton praised the Minister for the announcement.

“We have been part of a campaign group (made up of the Northern Ireland and UK Haemophilia societies and the Families and Friends of Haemophilia NI) which has fully engaged with Minister Robin Swann over a period since we met last February. Mr. Swann has proven himself to be a champion of our cause and this further commitment continues his plan to support our infected blood community. The bereaved recipients have finally got recognition and support in a way that will help them after years of trauma and hardship.”

Mr Hamilton said that the Infected Blood Inquiry, which is continuing through the pandemic, would provide a detailed picture of the workings of the worst scandal in the history of the NHS.

A message from our Chairman

Friends and fellow sufferers

Haemophilia NI is an independent regional charity whose focus is to provide information, support and advocacy to everyone with Haemophilia, Von Willebrands and other bleeding disorders. We believe in the importance of including families, carers and the bereaved and I would encourage you to interact with us.

While we are independent of the UK Haemophilia Society, we have co-operative relationships with them and the Welsh and Scottish societies which are established through a joint memorandum of understanding. The importance of a working collaborative voice is essential to ensure that you, our members, get the greatest advantage (as you will know through our collaborative advocacy in the contaminated Blood Inquiry). We will continue to work with that aim.

I’d like to welcome you to our website. It has been designed as a point of reference for you and as a means of focussing our attention on members of the local community with hereditary blood disorders. We are a small but significant community with a variety of needs.

As you will note from our charitable purposes, we function to support your wellbeing and serve you through advocacy, but this is only fully possible with your engagement. I do hope you will include us in your contact list and keep an eye on what is happening so that you can get involved and enjoy some of the events we run.

Thank you

Simon Hamilton

Chairman Haemophilia NI