HSE West and North West rolls out Hereditary Haemochromatosis (HH) Education Programme for GP Practices in partnership with The Irish Haemochromatosis Association

Ireland has the highest reported prevalence of Hereditary Haemochromatosis (HH) in the world, and the prevalence is highest in the West of Ireland.

HH is a disease resulting in excessive absorption of dietary iron from the intestine. Over time, excess iron accumulates in the cells of organs including the liver, pancreas, heart and pituitary causing damage. HH is more common in people of Celtic or northern European descent. It is the most common genetic disease in Ireland with approximately 1 in 83 people predisposed to develop HH and in some areas, 1 in 5 people are a carrier. Early diagnosis and treatment of the disease prevents organ damage and results in normal life expectancy. Treatment for the condition involves monitoring of iron stores using readily available blood tests. Based on the results, a venesection procedure may be required to remove blood, thus reducing the iron burden.

In the North West the majority of people living with HH are managed by either Haematologists or Gastroenterologists in Sligo University Hospital (SUH) and attend the Day Service for venesection. This procedure is low risk, with greater than 80% of the patients requiring minimal specialist input to manage their care, therefore, this procedure can be provided safely in Primary Care.  A small project team was established to explore transitioning care for these low risk patients to Primary Care thereby providing care close to home in a GP Practice, eliminating the need for patients to travel.  This will also increase in capacity in SUH for other day case procedures and therefore reduce waiting lists.  It was determined that a bespoke venesection education programme for GP Practices was required as no such project existed in Ireland.

The Centre for Nursing and Midwifery Education (CNME) Sligo, Leitrim, supported the development by Charlotte Hannon of a competency-based education and training programme, which has been approved by the Nursing and Midwifery Board of Ireland (NMBI). The project team and the CNME worked in partnership with the Irish Haemochromatosis Association which provided expert haematology nurses to support the programme and to conduct the nurse competency assessments. Community Infection Prevention and Control and the Primary Care Dietetics team were also involved in the delivery of the programme. The programme was delivered in the Sligo CNME on the 5th of March.

Presenter on the programme Dr Conor Mitchell, GP and HSE GP Lead for the Sligo/ South Donegal Community Healthcare Network stated “This is a vital training programme for GPs and GP Practice Nurses. The collaborative approach of Specialist SUH Consultants, GPs, the North West and Sligo Leitrim CNME has made delivery of this programme possible. We are delighted that more GP Practices will now be able to provide this care to their patients. This will potentially remove the need for patients to attend hospital to have a venesection procedure performed." 

Presenter on the programme Dr Andrew Hodgson,  Consultant Haematologist SUH said “I am delighted to be involved in the delivery of this bespoke education programme for GP Practices which is the first such programme available in Ireland.  It is an excellent example of integrated and collaborative working to improve patient care and develop staff whilst also implementing the core element of Sláintecare- delivering the right care in the right place at the right time”.

Kathy Taaffe, Professional Development Coordinator for General Practice Nursing and presenter on the programme said “General Practice is a busy workplace and when additional care is to be delivered the GPs and General Practice Nurses must be supported and enabled to do so to the highest standard. We appreciate the support of the Sligo, Leitrim CNME, and the Irish Haemochromatosis Association for developing and successfully delivering this bespoke programme. We look forward to embedding this programme in education centres nationally to support continuing excellence in healthcare delivery.”