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Haemochromatosis care plan yet to receive funding commitment

In late 2015, the then Minister for Health Leo Varadkar requested that the HSE Acute Hospitals Division develop a model of care for HH, which would address concerns expressed by members of the Irish Haemochromatosis Association (IHA).

 A working group was subsequently established to develop models of care for HH and therapeutic phlebotomy.

This group consisted of members from the IHA, HSE, Irish Blood Transfusion Service (IBTS) and healthcare professionals. It was chaired by Dr Colm Henry, National Clinical Advisor and Group Lead for HSE Acute Hospitals.

The models of care detail the diagnosis and management of patients with HH and how treatment (via phlebotomy) is best delivered. A HSE spokesperson told MI: “One of the main recommendations is that the management of the great majority of patients should be transferred from the acute setting to the community. Consensus opinion is that phlebotomy need not be done in a hospital setting unless absolutely necessary due to the expense, unnecessary use of resources and the distances travelled by patients to attend hospital clinics. Most patients with haemochromatosis could be safely and effectively managed by GPs and receive treatment in the community. 

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Minister for Health Simon Harris launched National Haemochromatosis Awareness Day (1 June) with (L to R) Dublin GAA star Mr Jack McCaffrey; Ms Margaret Mullett, Chairperson of the Irish Haemochromatosis Association; and world rowing champion Mr Niall O’Toole Photo: Marc O’Sullivan

“In addition, HH patients constitute a safe source of blood for transfusion and the models of care reflect and detail how the IBTS and HSE should co-ordinate the care and management of patients with HH.”

 The two models of care were approved by the HSE leadership in late 2016.

“The next stage, subject to funding, is to implement the recommendations of the model of care and to integrate the recommendations into primary care and for the IBTS to consider the model of care, in terms of what opportunities it presents to expand their profile of services,” said the HSE’s spokesperson.

The IBTS has been running a haemochromatosis clinic in the Stillorgan (Dublin) blood donation clinic since 2007. In 2013 and 2014, the IBTS commenced provision of a programme for HH patients in its D’Olier Street (Dublin) and St Finbarr’s Hospital (Cork) clinics.

However, the IHA has been campaigning for expanded opening hours and locations nationally.

An IBTS spokesperson told MI: “The IBTS is examining how it might provide a more broad-based accessibility to HH patients across the country. We would hope to bring forward proposals in the coming months.”

People with HH who do not have a medical card or private health insurance have been subject to a €75 charge per visit [now €80] to access phlebotomy in some public hospitals. 

Venesection for the treatment of haemochromatosis is not considered a routine service under the GP GMS contract. Minister for Health Simon Harris has said he expects that therapeutic venesection services for patients with haemochromatosis “will be considered in the context of the overall GP contract review process”.

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