John McGuinness (Carlow-Kilkenny, Fianna Fail)
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69. To ask the Minister for Health his plans to bring forward a Lyme disease strategy to help those suffering from the condition. [43600/18]

John McGuinness (Carlow-Kilkenny, Fianna Fail)
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Writing in July 2018, Kerry Lawless outlined her experience of suffering from Lyme disease:

My life became this tiny thing. Someone who had worked hard, played hard, travelled extensively, loved large, lived life to the full. I became a shadow, housebound, a virtual recluse with one or two good friends to sustain me... I thought about ending it all.

There have been regular protests outside the gates of Leinster House about Lyme disease. What is the Minister doing to ensure this matter is dealt with?

Simon Harris (Wicklow, Fine Gael)
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I have received correspondence from the Deputy on this issue on which he has advocated strongly.

The Health Protection Surveillance Centre has a Lyme disease sub-committee which has been tasked with producing a report which covers awareness of Lyme disease among clinicians and members of the public; identification of best international practice in raising awareness about Lyme disease; development of policies for primary prevention of Lyme disease; exploration of ways in which to improve surveillance of Lyme disease; and the development of strategies to raise awareness of Lyme disease, particularly in areas of higher tick populations.

The Health Protection Surveillance Centre is aware that the National Institute for Health and Care Excellence in the UK has undertaken a systematic review of Lyme disease which resulted in the institute publishing new Lyme disease guidelines. These are based on the most exhaustive systematic review yet undertaken of the evidence around Lyme disease and focused on producing recommendations based on best available evidence relating to diagnosis, management and public awareness of Lyme disease.

The final report of the Health Protection Surveillance Centre’s Lyme disease sub-committee has been delayed to ensure the evidence presented in the institute's guidelines can be factored into its final report. It is appropriate we should learn from best international practice and experience.

The report should be finalised in November, at which point it will be sent for consideration to the Health Protection Surveillance Centre’s scientific advisory committee. At this juncture, it would be inappropriate to consider making changes to the testing, treatment and management of the condition until this deliberative process has been completed. I know people have been campaigning for recognition of the disease in this country. I hope when the report is finalised we can make informed decisions as to how we can improve treatment, awareness and diagnosis in line with other jurisdictions.

John McGuinness (Carlow-Kilkenny, Fianna Fail)
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The Minister cannot ignore the words of Kerry Lawless when she stated, "I was worn out. Beat down. Broke. Defeated. I couldn’t face another ten years". If one listens to the reply he has just given, however, while work is ongoing, the campaign for the recognition of Lyme disease has gone on for years but little or nothing has been done.

While the Minister is waiting for the report, the fact of the matter is that in France the Government has a model of care and understanding of Lyme disease that could be copied by this country. No effort is being made to inform the public in any meaningful way. The only organisation I see doing this is Tick Talk, and Ann Maher writes to the Minister on a regular basis on behalf of the organisation highlighting the issues and the costs of going to Germany for diagnosis and treatment. It is extremely unfair that people in this country who have Lyme disease can, like Kerry Lawless, be left undiagnosed from 2007 to 2017. We are ruining the lives of people. Simple mistakes are being made and not being recorded.

Simon Harris (Wicklow, Fine Gael)
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My record on this is not one of doing nothing but asking that we update our scientific advice, not just based on our experiences and evidence but also looking at what has been done across the water in the UK. We will have the basis of information next month, which will enable us to make informed decisions in this regard.

Lyme disease can be very successfully treated in many cases using common antibiotics. These antibiotics are effective at clearing the rash and they help to prevent the development of complications. Antibiotics are generally given for up to three weeks and if complications develop intravenous antibiotics may be considered. Tick Talk Ireland, the support group referenced by the Deputy that does excellent work to encourage awareness, prevention and treatment of Lyme disease in Ireland, has requested that the guidelines produced by the International Lyme and Associated Diseases Society be used instead of those recommended in the 2012 consensus statement.

The Deputy is probably aware that on 25 September a meeting took place between the Department and members of the cross-party action group on Lyme disease. Tick Talk Ireland was represented at the meeting. I accept this is an issue on which there is an awful lot of concern. I accept the testimony the Deputy has given me from a person with whom he has been in contact. I hope that by this time next month we will have an evidence base on which to move forward.

John McGuinness (Carlow-Kilkenny, Fianna Fail)
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I impress on the Minister the urgency of this. We tend to do an awful lot of reports and we do not learn from other countries. I have highlighted the fact that France seems to be leading the way but Canada has a similar approach to this disease. In New York the same thing is happening, with a cross-departmental approach to solving the issue of Lyme disease. If all of these countries are taking roughly the same initiative and if the European Union is debating having a similar approach then surely we can force as a matter of urgency that the report be completed and the appropriate actions out of that report to be taken. I urge the Minister not to allow this to go on for long more. Tick Talk and others recognise the work being done by the Minister in this area but they point out that time is hugely important to them and ask the Minister to recognise this in the context of action being taken.

Simon Harris (Wicklow, Fine Gael)
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I recognise that reports are only as good as their implementation and the commitment I give the Deputy is that when the report goes to the scientific advisory committee I and the Department will base our actions, and I use the word actions, based on the scientific advice. I would be happy to meet the Deputy to discuss further these actions and implementation, once the report has been received in November.