Foreword
Northern Ireland has an opportunity to strengthen how people affected by bleeding disorders contribute to the planning and delivery of healthcare.
While specialist clinical services continue to evolve, expectations around patient partnership have also changed. The Infected Blood Inquiry reinforced the importance of independent advocacy, meaningful patient involvement and sustained engagement with those affected by bleeding disorders.
Haemophilia NI believes this is the right time to establish the Bleeding Disorders Forum NI - a collaborative, patient-led partnership that brings together patients, clinicians, commissioners and government to improve services, strengthen communication and ensure that lived experience informs future healthcare decisions.
Building on the Legacy of the Infected Blood Inquiry
The Infected Blood Inquiry has highlighted the importance of independent advocacy, transparent communication and meaningful patient engagement. These principles extend beyond those directly affected by contaminated blood and provide an opportunity to strengthen patient partnership across the wider bleeding disorders community.
The Bleeding Disorders Forum NI will provide the infrastructure through which these principles can be embedded into service planning, policy development and continuous improvement across Northern Ireland.
Our Vision
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Our Mission
To establish the Bleeding Disorders Forum NI as the recognised regional partnership bringing together patients, families, healthcare professionals, commissioners and policy makers to improve outcomes through collaboration, co-production and shared leadership.
Why This Matters
People living with bleeding disorders bring lived experience that complements clinical expertise.
Creating a structured mechanism for engagement will enable patients, clinicians and commissioners to work together more effectively, leading to better-informed decisions, improved services and stronger public confidence.
The Bleeding Disorders Forum NI will provide this sustainable mechanism for collaboration.
The Opportunity
The Bleeding Disorders Forum NI will become Northern Ireland's recognised partnership for patient engagement in bleeding disorders by:
• providing a collective patient voice;
• supporting service planning and policy development;
• strengthening collaboration across health and social care;
• facilitating meaningful consultation;
• promoting innovation and continuous improvement.
Purpose
To provide a structured and representative forum through which all people affected by bleeding disorders can work collaboratively with healthcare professionals and strategic partners to improve services across Northern Ireland.
Strategic Functions
The Forum will:
• Provide meaningful patient representation. • Support service planning.
• Inform policy development.
• Facilitate consultation.
• Share best practice.
• Promote education and awareness.
• Encourage collaborative problem-solving.
• Strengthen communication across the sector.
Patients and Families
• Haemophilia NI
• Adults
• Parents and carers
• Young adults
• Women and girls
• Platelet disorders
• Rare bleeding disorders
Clinical Partners
• Consultant Haematologists
• Clinical Nurse Specialists
• Hepatology Services
• Physiotherapy
• Psychology
• Allied Health Professionals
Membership
Infected Blood Community
• People infected through NHS treatment
• Bereaved families
• Affected family members
• Compensation Authority (where appropriate)
Strategic Partners
• Department of Health
• Strategic Planning and Performance Group (SPPG)
• Health and Social Care Trusts
• UK Haemophilia Society
• Relevant voluntary organisations
• Academic and research partners (where appropriate)
The Role of Haemophilia NI
Haemophilia NI will establish and provide the Secretariat for the Bleeding Disorders Forum NI. The Secretariat will coordinate meetings, manage governance, support patient engagement, coordinate communications, facilitate partnership working, monitor progress and provide administrative and operational support. This role will ensure that the Forum remains independent, patient-led and strategically focused.
The Secretariat will also coordinate advocacy activity, monitor emerging issues affecting the bleeding disorders community and support implementation of relevant recommendations arising from the Infected Blood Inquiry where these relate to patient engagement, communication and advocacy.
Our 2-Year Journey
Better Outcomes for Patients
• A stronger collective voice.
• Greater influence on healthcare decisions.
• Better communication with services.
• Increased opportunities for engagement.
Stronger Partnerships
• A single, trusted patient partner.
• Better evidence to inform commissioning and service improvement. • Stronger collaboration with the voluntary sector. • More effective consultation and co-production.
Delivering the Legacy of the Infected Blood Inquiry
Outcomes and Impact
•Establish an independent advocacy function within Haemophilia NI;
• improve access to information and signposting;
• strengthen engagement with those infected and affected by contaminated blood;
• provide opportunities for patients to contribute to healthcare planning;
• develop a sustainable model of partnership working between patients and statutory organisations;
• support implementation of relevant advocacy and engagement recommendations arising from the Infected Blood Inquiry.
Better Services
• A sustainable regional infrastructure for patient engagement.
• Delivery of person-centred care ambitions.
• Improved policy development through lived experience.
• A scalable model for other rare disease communities.
Investment Required
Haemophilia NI seeks £20,000 per annum for two years to establish the organisational infrastructure needed to deliver this programme.
The requested investment will establish the organisational infrastructure required to coordinate the Bleeding Disorders Forum NI, provide independent advocacy, strengthen patient representation, support implementation of relevant recommendations arising from the Infected Blood Inquiry, improve partnership working and secure the long-term sustainability of Haemophilia NI.
This funding is intended as seed investment, enabling Haemophilia NI to establish the systems, partnerships and capacity required to secure future funding from charitable trusts, statutory programmes and other sources.
A Lasting Legacy
This proposal represents an investment in the future of patient partnership in Northern Ireland. It will establish the infrastructure needed to ensure that people affected by bleeding disorders are consistently involved in shaping the services they use, while strengthening collaboration between patients, clinicians, commissioners and government.
The Bleeding Disorders Forum NI will become a lasting legacy—creating a trusted regional partnership that supports better healthcare, stronger advocacy and improved outcomes for current and future generations.
Registered Charity No. 107635