Willie O'Dea (Limerick City, Fianna Fail)
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83. To ask the Minister for Health the supports he plans to put in place for persons suffering from narcolepsy and other medical complications following vaccination with Pandemrix; and if he will make a statement on the matter. [22619/13]

Michael Moynihan (Cork North West, Fianna Fail)
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118. To ask the Minister for Health when he will meet with members of SOUND to discuss their concerns and the commitments he has previously made to them; and if he will make a statement on the matter. [22608/13]

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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135. To ask the Minister for Health when the package of supports for children and young persons diagnosed with narcolepsy as a result of vaccination with Pandemrix will be delivered as promised; if he will meet with the parent representatives; and if he will make a statement on the matter. [22554/13]

James Reilly (Dublin North, Fine Gael)
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I am pleased to inform the Deputies that a number of supports are in place for persons diagnosed with narcolepsy following pandemic vaccination. My priority is to ensure those affected by narcolepsy, with symptom onset post-pandemic vaccination, are provided with a range of services and supports to meet their health needs. My colleague, the Minister for Education and Skills, Deputy Quinn, wishes to ensure their educational needs are also supported. The Health Service Executive has responsibility for health service delivery and, at my request, the HSE developed a range of appropriate services and supports to address the needs of this group.

Together, the HSE and the Department of Education and Skills provide a very comprehensive range of services and supports to those affected. These supports and services include access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred. This includes expenses for counselling services for individuals and also for families of children affected by narcolepsy following pandemic vaccination in cases where such services are not already available through the HSE. Multidisciplinary assessments which allow for appropriate individualised health and educational supports to be put in place are ongoing. The National Educational Psychological Service, NEPS, is also engaging with the HSE and with the individual schools and parents of children concerned to identify and provide educational supports for the children and adolescents affected.

The HSE's advocacy unit is in regular contact with the support group, SOUND, and last met representatives of the group on 28 February 2013. Through regional co-ordinators, the HSE also has frequent contact with individual members of SOUND to assist them in service access and reimbursement of expenses. On 22 March, the HSE held an information day to ensure those affected were fully aware of all the services available. My Department is considering all possible supports which may need to be put in place for those affected by narcolepsy following pandemic vaccination. I assure the Deputies that this matter continues to be a priority for my Department. A further meeting with SOUND will be arranged when the matter has concluded. It is important we support those who have adverse events following vaccination because they are administered in good faith and taken in good faith with benefit not just to the individual but also to the wider community.

Billy Kelleher (Cork North Central, Fianna Fail)
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The national narcolepsy steering committee reported more than a year ago.

Commitments were made and while I acknowledge that there have been meetings with the HSE and other agencies of the State, what the representatives of children afflicted with narcolepsy on foot of the Pandemrix vaccine want is a clear pathway outlined on access to health and education services and some form of redress. With all due respect, this issue was to be addressed last September. A paper was due to go to Government in October but we are now in May 2013. While some individuals may have access to the various agencies of the State in terms of assistance and assessment, what they want is a guaranteed mechanism to be put in place vis-à-vishealth, education and redress in order that they can get on with their lives. That is critical, especially if we are to have confidence in vaccination schemes on a broader level. Clearly, if something goes wrong with a vaccination programme, it should be addressed because people have their children vaccinated in good faith and for the right reasons. The current situation whereby 30 children or more are now afflicted with narcolepsy and are effectively left to campaign on an individual basis is not good enough.

James Reilly (Dublin North, Fine Gael)
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As I outlined earlier and for the record, by 10 May the Irish Medicines Board had received 48 reports confirming a diagnosis of narcolepsy with symptom onset following the Pandemrix vaccination. The majority of these reports relate to children and adolescents. Further possible cases have been investigated by the HSE and the Irish Medicines Board. As I have pointed out, a range of services are being provided through the Department of Education and Skills and the HSE. The development of a national centre for narcolepsy treatment is under active consideration by the HSE and money has been set aside for the development of such a centre in 2013. There has been active engagement between the Department of Health, the HSE and the Department of Education and Skills to meet the needs of those affected. There has also been active engagement with representatives of Sufferers of Unique Narcolepsy Disorder, SOUND, the advocacy group for those affected. The HSE's advocacy unit acts as liaison with service and support providers and other Departments to facilitate access to required services. The HSE has established a network of liaison officers countrywide to allow a single point of service contact for those affected by narcolepsy. The HSE has also provided a range of services to those affected, including access to rapid diagnosis, clear care pathways and temporary medical cards, and expenses incurred by parents are being met by the HSE. The total amount expended since the reimbursement scheme began in 2011 is approximately €60,000.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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When will the Minister meet the representatives, that is, the parents of the children affected? I understand that 54 affected persons are represented by SOUND. It is important that the Minister would meet the representatives as soon as possible. When will the Minister deliver the promised supports for these children? It must be borne in mind that what they are asking for is very reasonable indeed. They want an awareness campaign for medical professionals and the public, which would be very sensible. They also want access to rapid diagnosis, a special services medical card, continuing educational supports, access to new drugs and treatments and compensation. This is a matter that deserves cross-departmental address but the Department of Health has to be the lead Department. Finally, the advocacy group is also calling for the official recognition of narcolepsy as a disability. That is very important because these children will grow up into young adults and future adult life and their condition may very well affect their employment prospects. Only by designating narcolepsy as a disability will they be able to access disability allowance if their work life is interrupted in any way.

James Reilly (Dublin North, Fine Gael)
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The Deputy asked when I will meet the representatives and the answer is "shortly". I have absolutely no hesitation in meeting them. They sent a letter to the Department outlining some of the things they would like to see happen and most of them have, in fact, already happened. The Deputy mentioned rapid access to diagnosis, which is already available.

They asked for a special medical card and they have been given that.

In the area of compensation we have already been notified that eight cases are going to court. On behalf of the State and as the Minister for Health, I have received six letters of notification of an intent to proceed legally in claims against the Minister, the HSE and the manufacturers, GSK, regarding damages suffered as a result of vaccination with Pandemrix. As yet no proceedings have been issued. It is our hope that we could avoid all that by perhaps going through the State Claims Agency, which is eminently suited to deal with this. I would prefer that any moneys available go to compensating those who have suffered pain and loss as opposed to the legal profession - I mean no disrespect to my honoured colleague beside me.

There are two things to say about calling for it to be named a disability. There are many conditions that result in disability but that are not labelled as a disability. The second point is a matter of some hope. I have been told unofficially - I am open to correction - that there appears to be some evidence abroad that some of those who have suffered narcolepsy as a consequence of this vaccination are beginning to recover. This may not, and, I hope, will not be a lifelong disability, but that is not to diminish in any way the huge distress that it has caused those it has befallen.

Billy Kelleher (Cork North Central, Fianna Fail)
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I refer to the issue of global information. There may be some evidence coming from abroad, including areas outside Europe, relating to people who have been affected with narcolepsy because of Pandemrix vaccination. If there is such information or if treatment becomes available that assists or benefits these people, will the Government examine the peer-reviewed material and other documentation to ensure that patients get the best advice, information, clinical assessment and treatment available in the world? We have several people that have been affected with narcolepsy because of this vaccination but there may be others throughout the world. By pooling information and sourcing elsewhere we may come up with solutions to these difficulties.

There is a broader issue and I hope these people meet the Minister in this regard. The idea that people are serving notice on the State in the courts for compensation is a clear indication that the State is not looking favourably on redress. If it were, then the first engagement or port of call would be the State, as opposed to having to force the State into a confrontation.

James Reilly (Dublin North, Fine Gael)
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With regard to the last point, no proceedings have been commenced but it is a statement of intent borne by the sense of hurt and loss that parents believe their children have suffered. We have to take that on board.

The other points raised by Deputy Kelleher are well made. Of course we should always look at best practice not only here but abroad and we should seek to pool information. We opened the e-health conference yesterday. More than 2,000 delegates are attending the Convention Centre, Dublin, at the moment to consider the subject of exchanging information and trying to accelerate change within our health services in the European Union and beyond. Three European Union Commissioners will be present during the conference. The President of the Senate of Massachusetts, Therese Murray, was present yesterday and we look forward to the presence of Deval Patrick, the Governor of Massachusetts, tomorrow. This is very much an EU-US initiative but it involves other people throughout the world feeding into an information process that will help us improve practice not only in the area of the treatment of narcolepsy but in many other aspects of health care.

Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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The report prepared and published by the national narcolepsy study steering committee was produced more than one year ago. In the Minister's response at the time of publication he stated that a package of supports would be in place before the summer recess. That was in 2012. We are now almost at the summer recess of 2013 and there is no permanent package of supports in place. There is no across-the-board package of supports which the parents have identified as a requirement for them and their children to cope with the condition, which must be most upsetting to deal with given all the situations that it can entail. Why has it taken the Minister so long to meet them?

Will the Minister be particular and give an indication of a date? He talks about shortly but that is non-specific. I do not understand why he has not met them already.

Joe O'Reilly (Cavan-Monaghan, Fine Gael)
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Deputy Ó Caoláin has the right to ask as many questions as he can, but when he does, it is difficult to answer all of them. He asked why I will not meet them. I have already said I will meet them and will do so shortly on the basis of fully understanding and being able to respond to the more recent communication we had in April around their requirements. We have put in place virtually all the educational and medical supports required at this point. We have held information days, and consultants in sleep medicine from the Mater Hospital, such as Dr. Catherine Crowe, Dr. Elaine Purcell, and Dr. Brian Lynch, consultant paediatric neurologist in Temple Street children's hospital, have made presentations and answered questions.

Every possible measures is in place to ensure rapid diagnosis, with the Mater Hospital sleep clinic providing a six-day service, including Saturdays, to facilitate those where a possibility of diagnosis of narcolepsy exists. The Department has been assured by the HSE that anyone who has a confirmed diagnosis of narcolepsy is fast-tracked through the system to ensure required services are provided at the earliest possible time.

We should all use this opportunity today to highlight the issue and the services that are in place. If people find themselves unable to access them, I would like to know in order that I can offer them the opportunity to avail of what is being provided. More will be required in the longer term in terms of compensation and redress, and we are open to that.