Colm Burke (Fine Gael)
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I welcome the Minister of State to the House. I know he is stepping in for the Minister for Health on this matter. Ireland has the highest rate of hereditary haemochromatosis, which is a condition caused by the gradual accumulation of excess iron in the body, in the world. Haemochromatosis can develop without symptoms until it reaches an advanced stage at which it can be fatal. The treatment of hereditary haemochromatosis simply involves the removal of a pint of blood. At the moment, the process in the Cork region is that it is dealt with in a clinic at Cork University Hospital, CUH. A number of general practitioners who are prepared to offer this service have come together. It is not about trying to take over someone else's territory; it is very much about trying to alleviate the problems in the clinic in CUH. All of this would have huge benefit for patients in the clinic in question. If the GPs were able to deal with it, a substantial cohort of patients would be rapidly and permanently removed from CUH. This would allow the relevant department in the hospital to service an additional clinic. It would be cost-neutral from an infrastructure and manpower perspective. Waiting lists would be gradually reduced.

I will set out what the GPs are basically looking for. University College Cork, UCC, is prepared to come on board to research the viability of the project. I understand the amount of money involved in putting it together is approximately €28,000. UCC is prepared to carry out the research. A number of GPs would work with CUH and UCC to develop a clear protocol for the management and treatment of hereditary haemochromatosis. The GP practices would rigorously implement the agreed quality protocol. When patients enter the maintenance phase of management, they would be referred to the Irish Blood Transfusion Service to become blood donors. Patients who are not eligible to become blood donors would continue to attend the treating GP. I understand that the blood taken from the patients attending CUH is destroyed. It does not even go to the blood bank.

It is being proposed that this service should be provided as part of a joint approach between CUH, the GPs, UCC, which will do the research, and the Irish Blood Transfusion Service. I understand the annual cost saving in the Cork region alone would be approximately €1.2 million. I am astonished that the HSE is not buying into the proposal. I have been told that the GPs who came forward with the proposal are talking about walking away from it because they feel it is being pushed down the road. I believe it should not be pushed down the road. If this cost-saving exercise leads to the provision of this service in local areas around the county of Cork, people will not have to travel all the way into CUH from north and west Cork, etc. I think that is another one of the advantages of this scheme.

Joe McHugh (Donegal North East, Fine Gael)
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I thank Senator Burke for raising this issue. It is close to my heart, if Members will pardon the pun, because I have haemochromatosis. It is important for me to declare that conflict of interest before we move on. I am delighted that the Senator has raised it. I have worked closely with Margaret Mullett, who is the chairperson of the Irish Haemochromatosis Association. Her husband passed away because too much iron had built up in his blood. Obviously, that was before she became aware of this issue. That is how she ended up getting involved in the association. Her objective is to raise awareness. I hope the raising of this issue by Senator Burke this evening will help Ms Mullett on her journey as she tries to create awareness.

I am responding on behalf of my colleague, the Minister, Deputy Varadkar. Haemochromatosis is a relatively common condition in Ireland. If a person has haemochromatosis, his or her body absorbs too much iron from his or her diet. After it has been diagnosed, it is treated by removing blood regularly to get rid of excess iron. This process is referred to as venesection. Patients with haemochromatosis in Ireland were traditionally treated through their general practitioners or as outpatients in a hospital environment. Under a framework agreement that was signed on 4 June last, the HSE, the Department of Health and the Irish Medical Organisation have commenced substantive talks on a new General Medical Services GP contract. The inclusion of chronic disease management for patients and the provision of mechanisms to ensure patients are treated in the community, where possible, will be prioritised in these discussions. I expect that haemochromatosis services will be considered in this context.

As the treatment for haemochromatosis involves blood removal, and because patients are often well and eligible to be blood donors, the Irish Blood Transfusion Service has developed a haemochromatosis service in recent years.

It has resulted in the cost effective treatment of people with this common disorder. It is provided free of charge to those with haemochromatosis and, in turn, the Irish Blood Transfusion Service, IBTS, can use the blood for transfusion.

The IBTS started a programme of treating haemochromatosis patients at its Stillorgan centre in 2007. The centre operates a full care model where the IBTS manages the ongoing care of the haemochromatosis patient while performing the necessary venesections. The patient must attend his or her referring clinician for annual review. A total of 600 patients are now being treated at the Stillorgan centre, which is at full capacity.

In August 2013, the IBTS commenced a second haemochromatosis service at its D'Olier Street blood donation clinic in Dublin. A further service commenced at its Cork centre in January 2014. At both locations, clinical responsibility for the patient remains with the referring clinician, but the IBTS provides an option of a maximum of four venesections per year. In many cases, where these patients meet all of the normal blood donation criteria, they can then become blood donors. I am delighted to inform the Seanad that the IBTS plans to expand its haemochromatosis service further at its Limerick centre. A planning application in this regard is being finalised by the IBTS.

The haemochromatosis service provided by the IBTS is positive for the overall health service. Eligible haemochromatosis patients are provided with a free service and the maintenance of the national blood supply for patients in our health care system is enhanced. Many haemochromatosis patients also have the satisfaction of becoming regular blood donors to the benefit of others. Services for haemochromatosis patients have improved significantly in recent years and I look forward to their further enhancement as current plans come to fruition.

Colm Burke (Fine Gael)
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I thank the Minister of State. His response was positive, but there is a great reliance on the IBTS developing services. We are discussing rolling out a small research project to a number of general practices across the country. By working with general practitioners, GPs, in Cork, Cork University Hospital, the IBTS and UCC could identify the best way of managing this system and set out a national template. The sum of money to allow for that research would be small at approximately €28,000. UCC is prepared to do this work. It has spoken with the HSE, but the latter is hiding behind the Irish Medical Organisation, IMO, negotiations. They should not be used as an excuse not to address this issue. This is a great opportunity to determine whether a more comprehensive service can be provided at a much reduced cost for the HSE and taxpayers. It should be considered carefully.

Joe McHugh (Donegal North East, Fine Gael)
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I acknowledge the drive of the Minister, Deputy Varadkar, and his officials in working with the IMO on a new contract. I hope that progress can be made on that front.
If there are areas of research and sums of money are required, it is important to be as inclusive of the stakeholders as possible. I am aware that there will shortly be a meeting between the Irish Haemochromatosis Association, IHA, and the Minister. The Senator has shown an interest, so it would be important were he at that meeting. I can give him the details.
Many people have haemochromatosis.I have it. As I do not know the technical details, I will not go into them. Basically, I must give blood every now and again due to my ferritin levels. Previously, the blood I gave was not used and was instead dumped, so I am delighted that, in recent years, people with haemochromatosis have been able to donate their blood. It is important that their blood can be used. Solutions may be possible at ground level in communities, primary care centres or GPs' surgeries. It is just a question of giving blood. It is not rocket science. It is done to monitor ferritin levels. Science is improving and more companies are getting involved on the monitoring end of things. I will name drop and refer to Randox Teoranta in Dungloe, County Donegal, which is involved in this business and introducing new technologies and sciences to ensure that people with haemochromatosis are diagnosed at an earlier stage.
My only anecdotal advice is this - if people are feeling fatigued, they should go to their doctors to get their blood checked for ferritin levels. They may have haemochromatosis. Since I started giving blood, my fatigue levels have improved immensely. I do not get any sleep anymore in my new job.

Catherine Noone (Fine Gael)
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On that delightfully positive note, we have reached the end of matters on the Adjournment.