Colm Burke (Fine Gael)

I thank the Minister for Health, Deputy Reilly, and the Minister of State, Deputy Shortall, for attending the House today to deal with this matter and to listen to the Senators' views. I thank all the Senators who contributed to the debate. Everybody who did so was very constructive and supportive of the work the Minister and the Department have done to date in dealing with this matter by setting up the taskforce and ensuring there is a timeframe to deal with this issue. That is extremely important.

The Minister indicated the report of the taskforce will be in place towards the end of the year. I welcome that today he advised us that a proposal has been submitted to the HSE national director of clinical strategy and programmes about establishing a national clinical programme for rare diseases. It is good that a proposal has been submitted but what is important now is that the proposal be looked at and implemented at the earliest possible date. I ask the Minister that this be put in place as soon as possible because it is very important.

All speakers mentioned the availability of information and ensuring that once a problem is found, first, the disease be identified and then that the programme of care be put in place at a very early date. A number of people made the point that we will have the Presidency of the European Union in 2013. Again, I refer back to November 2009 when the European Commission set out a strategy to deal with this from a European point of view. This is a considerable opportunity for us to take the lead in this area during our six months, not only by ensuring our own plan is in place by December 2012 but then by leading. That is very important.

Every speaker today emphasised that the priority is for the families who have to deal with an issue like this, which is so very difficult. I have met a number of families in recent months and have had to deal with fund for treatment abroad for those who could not get the proper treatment here. People have such passion, commitment and emotion as they try to get the treatment they require. When one meets such a family one sees it is a 24-7 job for them. It is our duty and that of the Department of Health and the HSE to ensure we can lighten that workload for people.

What struck me during the debate in the Oireachtas joint committee was the commitment of people in this area. I acknowledge and thank all those who attended today, including Avril Daly and all those with her and Tony Heffernan, who was involved in B for Battens and has had his own long road dealing with his own situation but who has tackled the issue and been very innovative in the way he has approached it. I also include all those involved in fund-raising for many of these organisations. We should not ignore them because much of the work would not be done without the voluntary fund-raising work of a great number of organisations and by people who are not members of any organisation but who come along on the day to give their help and support.

I thank everybody for their contribution, including the Acting Chairman, Senator van Turnhout, and thank her, too, for dealing with this debate. This is a useful forum for highlighting an issue of this kind. I have marked down the end of October in my diary so that we will not have to wait for the end of December for this to be finalised. The Minister of State should not be surprised if there is another motion in this House at that time.