Martin Conway (Fine Gael)
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Go raibh maith agat, a Chathaoirligh. I am absolutely delighted the Minister of State is here, given that he is a busy man running his own Department. However, it is an absolute insult to this House that no Minister for Health is here. There are four Ministers for Health. There are two at Cabinet, and there are two Ministers of State. This is a very important health motion, and not having one of the Ministers for Health here is disrespectful to the House, insulting to the Members and a waste of Minister of State, Deputy O'Donovan's time. While I appreciate him coming in to reply to the matter, he should not have to do that. The Cathaoirleach needs to raise this issue with the Department of Health.

Jerry Buttimer (Fine Gael)
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We have already raised the matter. My predecessor and I have raised the matter with the Minister-----

Martin Conway (Fine Gael)
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I accept that. I have no doubt the Cathaoirleach has, and he might do it again, because this is the second-----

Jerry Buttimer (Fine Gael)
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As the Senator is aware, the House has no control over which Minister appears.

Martin Conway (Fine Gael)
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This is the second health matter I have raised that has not been addressed by a Minister from the Department of Health. It is a consistent problem with one Department which needs to be dealt with. Here's hoping because I know the powers of persuasion of the Cathaoirleach and his ability to get things done. This issue needs to be sorted.

I am raising the issue of haemochromatosis which affects one in 83 people in Ireland. Furthermore, one in five people is a carrier. Despite this, there is no national screening programme or national strategy. For the people affected, this is a lifelong condition. It is not considered a long-term illness when it comes to payments, long-term illness cards, etc. What is more frustrating than anything else is the fact that there is no consistency between the hospital groups. Some hospital groups do not charge for doing the basic necessary treatments for people with haemochromatosis whereas others do.

To put it in simple English, haemochromatosis is where people have too much iron in their body and a quantity of blood has to be removed to balance the iron. This job should be done by the Irish Blood Transfusion Service, IBTS, but it is not. I fully accept that, for various reasons, not everyone's blood can be accepted. I believe, however, that the IBTS should cover the cost of this service. We need to make the service universal and uniform. What happens in Dublin should happen in Clare and what happens in Cork should happen in Donegal. There should be no differences. That is what creates inequalities in healthcare.

We urgently need a national strategy to identify and deal with people who have haemochromatosis. We need a five-year plan and also a longer term plan. We need to create equality in access to care. We also need an information campaign. There are thousands of people who have the condition but do not even realise they have it. That is not good enough. We need a national screening programme and national information campaign to identify people with the condition.

Outside of the medical profession and those who suffer from it and their families, haemochromatosis is not a widely known condition but it should be. Every parent and carer should know about it. Some GPs provide supports and services while others do not. There needs to be an engagement with GPs in order to create a database of those who do and do not provide services. We also need to encourage the ones who do not provide the services and supports to do so.

We need three things, a national strategy, a national screening programme and an information campaign.

Jerry Buttimer (Fine Gael)
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I welcome the students from St. Benildus College, Stillorgan who are here today as guests of the Minister of State at the Department of Enterprise, Trade and Employment, Deputy Neale Richmond. I also welcome to the Public Gallery guests of Senator Malcolm Byrne, the winners of this year's BT Young Scientist competition from Abbey School in Tipperary, Shane O'Connor and Liam Carew. You are very welcome. Comhghairdeas roimh go léir.

Patrick O'Donovan (Limerick County, Fine Gael)
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I welcome the students from the Abbey School who have strong Limerick connections through their teacher and principal. I do not think they would have won the competition without that Limerick influence.

Jerry Buttimer (Fine Gael)
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Limerick did not do too well last night.

Patrick O'Donovan (Limerick County, Fine Gael)
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Wait until next week. We will soften your cough.

Senator Conway has made a valid point. We have to move to a position, by agreement with the Chief Whip or the Government, where there are thematic days in the Seanad, almost like oral questions in the other House, where Senators, with the Cathaoirleach's consent, can raise issues with notice and the Minister with responsibility turns up. Otherwise, it is just me reading a script I received five minutes ago, which is not just disrespectful to the patients Senator Conway referred to but totally out of order.

Jerry Buttimer (Fine Gael)
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As the Minister of State knows, it is not as easy as having thematic days because there is-----

Patrick O'Donovan (Limerick County, Fine Gael)
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I speak as somebody who represents a constituency where people are suffering from haemochromatosis. They would not like to think that someone is just handed a script and told to read it out, which is exactly what I am about to do.

I thank Senator Conway for raising this issue. Haemochromatosis is a hereditary condition, in which excessive amounts of iron are absorbed from the diet. This iron is deposited in various organs, mainly in the liver, but also in the pancreas, heart, pituitary and joints. Symptoms are often non-specific, fatigue, joint pain and others. Symptoms such as liver disease and diabetes, if left untreated, can be fatal. Hereditary haemochromatosis is common in Ireland. A 2015 HSE model of care review into the condition found that one in 83 Irish people carry two copies of the HFE gene, which is responsible for haemochromatosis. These people are predisposed to develop iron overload.

The treatment for the management of hereditary haemochromatosis is therapeutic services, which involves patients having their blood taken. This can happen in several settings including hospitals. The Department of Health and HSE agree that such services should be provided at the lowest level of complexity that is clinically and operationally feasible. By moving to community based treatment, it allows necessary flexibility for patients who require life-long care, eases additional costs and allows access to treatment at suitable times. Measures introduced in recent years have positively impacted treatment for hereditary haemochromatosis patients.

In 2019, agreement was reached with the Irish Medical Organisation, IMO, on a major package of GP contractual reforms and service developments. These benefit patients and GPs, who now provide services for General Medical Services, GMS, patients with haemochromatosis. This means eligible patients can be now managed locally. In 2022, 845 GPs provided 6,864 therapeutic services to GMS patients. This service has improved patient experience as patients no longer have to travel to secondary care hospitals for treatment. As announced in budget 2023, GP visit card eligibility is to be extended to those who earn the median household income or less. This will provide more treatment options for those patients who qualify under this expansion.

The Irish Blood Transfusion Service also accepts hereditary haemochromatosis patients who are eligible to donate blood at fixed and mobile donation clinics nationwide. Patients can attend, free of charge, a maximum of four times a year with a minimum of 90 days between them. Eligible patients continue to have their hereditary haemochromatosis managed by their physician. The Minister is aware that for many patients, treatment is still provided in hospital as an outpatient or day case. The Health (Amendment) Act 2023, which came into effect yesterday, 17 April, removes the acute public inpatient charge of €80 per day for people. This further benefits those hereditary haemochromatosis patients who attend hospital for their treatment.

It is important to be aware that any decisions about changes to our national screening programmes, or the introduction of new programmes, such as screening for genetic haemochromatosis, will be made on the advice of our national screening advisory committee.

Martin Conway (Fine Gael)
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I thank the Minister of State for reading the reply into the record. Like me, he has constituents with haemochromatosis. He understands the importance of raising this matter. I understand that things have to be done on the advice of the national screening programme. However, the question needs to be put. To try to elicit a more comprehensive response and engagement I will request that Fine Gael private Members' time be used to raise this issue as a motion to see if we can bring a Minister for Health into the House to have a proper engagement on the issue. I repeat my three asks. The first is for a national strategy, which I do not think is too much to ask for, along with a point of contact and engagement in the Department of Health for organisations representing people with haemochromatosis. The second ask is for a national screening programme, which would be good for people's health. If something is identified it can be treated and there can be interventions to support it. Third, there needs to be equality in terms of the cost. I agree the changes in the budget have gone some way towards that. Finally, there needs to be a national information campaign so people are made aware that this condition exists and they may have it.

Patrick O'Donovan (Limerick County, Fine Gael)
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Senator Conway raises valid points. This is a condition that affects a lot of people throughout the country. We all know people affected by it, how it interrupts their lives, the impact it has on their weekly and daily routines, and the difficulty some people have accessing remote services, particularly in rural areas. I will relay the Senator's points to the relevant Minister. If Senator Conway believes it would be appropriate to use private Members' time to address the issue further, that would be an opportunity to flesh it out.