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Infected Blood Inquiry Final Report

From our Chair, Nigel Hamilton:

As a victim of the Infected blood scandal and Chair of Haemophilia Northern Ireland I write from the Inquiry in London on the day of publication of the full Report by Sir Brian Langstaff's team.

There are over 1000 attending victims, infected and affected, Legal teams, and other support organisations like Red Cross.

The Report highlights the mismanagement and exclusion of victims by successive Governments and The National Health Service in addressing the key issues which led to this appalling tragedy. "I have been looking forward to the publication and this day with trepidation and a cascade of emotions ranging from relief a sense of achievement to pain, loss both personal and infected blood community as a whole and in Northern Ireland as a whole. I lost my twin Simon on Christmas day and several other close campaign victims in recent months and really feel the sense of loss being palpable.

As we wait for the Judge to come forward to address us and highlight is key recommendations I feel emotionally exhausted."

"This process has taken too long and the reaction from successive Governments too slow.

Now it has come to conclusion I don't feel elation nor closure and the term justice feels deflated and hollow.

"The culture and candour in Govt and the Northern Ireland Health Service needs to be rewritten. The one thing that must be learned is that patients must be involved in their treatment and transparency needs to be understood, respected and provided.

Justice isn't hollow it's complete and intact and essential for the victims and families of the Infected Blood disaster.the government must recognise the lessons to be learnt and put them into action. I asked our Health Minister to come to the Inquiry and he did I spoke with him about the report recommendations and will meet with him again several times once we've had times to digest them."

Haemophilia NI Community Day 2024

During this year’s Haemophilia NI community day on 22 Jun 24, we will be holding a panel where volunteers can talk about their experiences of life with a bleeding disorder, the positive and the negative. We currently have volunteers to share their experiences of dealing with a rare bleeding disorder, women and bleeding disorders and parenting with severe Haemophilia A throughout the years. We ideally require a further two volunteers from our bleeding community to support the panel. Discussions will last no longer than 10 mins per person and this includes time for questions. We will also have a Dr from the Haemophilia Centre supporting the panel for any tricky questions. Whilst we welcome all volunteers we would love to see a volunteer talk about the following:

  • Bleeding disorders from a male perspective
  • Transitioning to self-infusion
  • Treatment after the port

The aim for this panel is to allow others to hear real life experiences and have an opportunity to pose questions to people who are affected by bleeding disorders rather than just hearing a clinical perspective.

We are very keen for volunteers from amongst our bleeding community to support this event. We hope that this will bring some of our members closer together by sharing their experiences and assist some who may feel daunted by the diagnosis, whatever stage of the journey they are on. If this interests you, please contact us via our email address NIhaemophilia@outlook.com and one of our team will contact you.

World Haemophilia Day 2024

Today, Wednesday 17th April, is World Haemophilia Day, a day that focuses on the bleeding disorder community, and the experiences of people within the community.

The theme for this year is “Equitable access for all: recognising all bleeding disorders.” You have the opportunity to share your experience with a bleeding disorder, and hear about the experiences of other people in the bleeding disorder community. Go to http://whdstories.wfh.org to read about the experiences of others and share your own.

Infected Blood Scandal

In recent days, our Chair, Nigel Hamilton, was in London, as part of a group of victims and families, lobbying Westminster for compensation for victims and families affected and infected in the Infected Blood Scandal. Click Here and Click Here to see news coverage on Channel 5 and Sky News, featuring Nigel.

Rare Disease Day

Today, Thursday 29th February, marks Rare Disease Day. Rare Disease Day is a great way to raise awareness of the experience of living with a rare disease, including Haemophilia. Today, let's come together and speak up for those living with a rare disease.

Infected Blood Payment Scheme for Northern Ireland

If you were infected with contaminated blood following NHS treatment in Northern Ireland, you could be eligible for financial support through the Northern Ireland Infected Blood Payment Scheme.

To find out more, click on the following link: Northern Ireland Infected Blood Payment Scheme

Our Chair, Simon Hamilton

It is with deepest sympathy that we have been told that Simon Hamilton, our Chair of Haemophilia NI, has passed on Christmas Day, peacefully and with family. Simon's passing at the age of 63 years will be a considerable loss to the bleeding and Haemophilia Community in Northern Ireland and across the UK. His contribution toward addressing the injustice of the infected blood disaster has been considerable and his work both in this regard and on highlighting issues affecting our bleeding community in Northern Ireland has been tireless. Nigel, his twin and fellow Trustee, has described Simon as a gentleman and a leader of defining quality, willing to listen, capable of advising and achieving agreement under complicated circumstances. Simon's passion for the needs of our community has defined his position at the head of our organisation and earned the respect he greatly deserves.

Letter to the Prime Minister

The Chairs of Haemophilia NI, Haemophilia Scotland, and The Haemophilia Society, have written a letter to the Prime Minister, asking him to immediately take action to accept the compensation recommendations that Sir Brian Langstaff made in his report. You can read the letter here: Letter to the Prime Minister

Interim payments

Following announcements from central government in England and the Northern Ireland Health Minister regarding compensation for victims of contaminated blood, Simon Hamilton, Chairperson of Haemophilia NI explained:

“The Prime Minister, Boris Johnson, has confirmed that victims and those who tragically lost their partners to the infected blood scandal will each receive interim compensation payments of £100,000. This is interim compensation as recommended by Sir Brian Langstaff, chairman of the public inquiry into infected blood. It is not the final payment since the recommendations made to government by the government’s nominated independent adviser, Sir Robert Francis, include arrangements recognising the circumstances of the bereaved parents and children/siblings who acted as carers of those infected. During his evidence to the inquiry, Sir Robert outlined that the complexities of making fair and final compensation arrangements would require significant effort and more time and would be dependent on the conclusions and recommendations of Sir Brian Langstaff’s inquiry report.

Interim compensation - intended to address the immediate needs of victims who have already waited too long - will be paid to those infected and affected by contaminated blood products who are currently registered on a UK infected blood support scheme. Full arrangements regarding compensation for other affected victims not currently on payment schemes will be addressed at the conclusion of the inquiry.

Following direct lobbying with Westminster and the NI Department of Health by Haemophilia NI and other campaign groups and the intervention of Sir Brian Langstaff, the Northern Ireland Health Minister, Robin Swann, has provided assurances that there will be no delay in payments to scheme recipients in Northern Ireland, despite there being no executive at present. The DoH has produced a Q&A sheet to help victims’ questions.

Haemophilia NI board of trustees is grateful to the Minister and the Infected Blood Inquiry Team in his department for their work with the Treasury and Duchy of Lancaster’s office in ensuring that delays will be avoided in making payments to Northern Ireland victims and we will continue to work with them to ensure continued progress beyond Sir Brian’s final report which is due in the Spring of 2023 so that all victims will receive recognition."

World Haemophilia Day 2022

We hope everyone is having a lovely Easter weekend. As well as today being Easter Sunday, today is also World Haemophilia Day. Let’s never forget the importance of raising awareness for bleeding disorders.

One way in which this can be done is to share and donate to, if you can, our JustGiving page for our relay team in this year’s Belfast City Marathon. You can do so at the link below:


Infected Blood Financial Support

A reminder for those eligible to apply for infected blood financial support:


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