Members' Day and AGM 2024

We are delighted to be able invite you to our Members’ Day and AGM on the 26th October from 9:30am to 4pm at the DoubleTree Hilton at Templepatrick. We have a fantastic line-up of speakers including Helen Manson (Haemophilia Nurse), John Deardon (Vice-Chairman Haemophilia Scotland) and Valetin Brabete (President of the National Association of Haemophiliacs of Romania). Tea, coffee and lunch will be provided on the day. Childcare is also available for children of primary school age and up.

Places are limited so please let us know if you are able to attend, we would love to see you there. If you have any questions about the event, please get in touch.

To register you and your family, please email us at NIHaemophilia@outlook.com. Registration closes on the 12th October.

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:

https://www.justgiving.com/haemophiliani

Infected Blood Financial Support

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

https://www.health-ni.gov.uk/news/infected-blood-financial-support-bereaved