Ms Finola Cassidy:

I thank the Chair and members. The Irish Thalidomide Association, ITA, welcomes the opportunity to be here today. I am the spokesperson for the ITA and I am joined by my fellow survivor and committee member, Ms Jacqui Browne. We thank the committee for the invitation and this great opportunity to tell it, from our point of view, what is going on.

The ITA represents the majority of about 40 survivors of the biggest pharmaceutical tragedy the world has ever seen who live in Ireland. The drug, thalidomide, when taken for morning sickness, crossed the placenta barrier and damaged the baby in the womb. We are thalidomide "survivors", but we do not use that word lightly and the committee will understand why.

During the period 1959 to the mid-1960s, of the 100,000 babies injured in utero, 90,000 died as miscarriages. Of the 10,000 babies born, 5,000 did not survive the birth or their first year of life due to their catastrophic injuries. Today, 60 years later, there are approximately 4,000 survivors worldwide. In Ireland, we number approximately 40 survivors, which includes both acknowledged thalidomide survivors and yet to be acknowledged survivors, who we call "the unacknowledged".

It is a recognised medical fact that the late sequelae of thalidomide-related damages has brought a crop of unplanned, unprecedented and acutely painful further injuries over the past 60 years. That is because of the overuse and misuse of our disabled limbs, missing limbs and shortened limbs, etc. These ongoing injuries, along with the progressive internal damage that we have, as well as deterioration in our nerve endings, have resulted in many of our members living with daily and chronic pain.

The UN Convention on the Rights of Persons with Disabilities, UNCRPD, provides a unique opportunity to improve the quality of life of disabled people, which includes Irish thalidomide survivors. Article 5.1 of the convention seeks to recognise that all persons are equal before and under the law and are entitled to equal protection and benefit of the law. Thalidomide survivors have been failed by this ideal, now and in the historical aspiration of Irish State law, when the child was purported to have the protection of the State.

It is difficult to understand how the non-ruling by the High Court of payments in the mid-1970s to Irish survivors, who were about 12-years-old at the time, happened, except to say that the State knew the court was unlikely to rule the settlements as adequate for catastrophically disabled children. In the spirit of Article 5, at least in more modern times, the High Court ruled that an offer of €62,500 to one of our members with severe intellectual and physical disability was wholly inadequate.

Article 5.3 of the convention is, to some extent, covered by the provision of reasonable accommodation for persons with disabilities under the Equal Status Acts. For the purposes of these Acts discrimination includes a refusal or failure by the provider of a service to do all that is reasonable to accommodate the needs of a person with a disability by providing special treatment or facilities, if without such special treatment or facilities it would be impossible or unduly difficult for the person to avail of the service.

While I have a number of examples of this failure, I will just mention a couple of basic ones. My first examples are the taking of blood samples in hospital and the taking of blood pressure. When we present ourselves to doctors or hospitals, in particular, any medical professional person trying to take blood, blood samples or blood pressure from a person with no arms is faced with an immediate challenge; likewise, with our shortened arms. The blood pressure machine does not work on our limbs. Therefore, there is a challenge. We have concrete evidence that survivors have been refused blood tests because staff in some public hospitals are not insured to take it from other parts of their bodies, such as legs. Similar issues have arisen in relation to blood pressure and other medical devices to assess what our problem is and how ill we are. Sadly, one of the most painful things that a thalidomide survivor undergoes is giving blood samples. The nerve ending damage adds enormous pain to these simple medical necessities. This process and, indeed, many medical procedures cause absolute terror and anxiety to our thalidomide family. This is because we remember the trauma of years of medical intervention and investigation into our unique bodies as children, and that has left a legacy of fear in our adult life. It is extremely hard in a chronically understaffed health system to expect the medical professional to deal with us adequately when we just walk in.

Our health and care system is extremely fragmented; it is disease-centred, difficult to navigate and does not consider the whole person. As a result, many thalidomide

survivors have experienced poor quality care, often in the wrong settings and with undesirable outcomes.

There is also a significant variation and inequity in the way that services are organised, especially geographically, with unco-ordinated appointment scheduling, a lack of communication between providers and a frequent lack of capacity and resources within the required services.

Thalidomide survivors need a continuum of services, according to our unique needs over time and across different levels of the health system. For healthcare and support to be integrated, it must be person-centred, co-ordinated and tailored to the needs and preferences of the individual. This means moving away from episodic care to a more holistic approach to meeting our unique health and support needs.

The recent cost of disability research report published by the Department of Social Protection states that there are significant additional costs faced by individuals with a disability and that they are currently not being met by existing programmes or disability allowances. On average, a disability can cost a disabled person from €9,600 to €12,300 per year.

Taking the 40 Irish thalidomide survivors as a microcosm of all that Article 5 and, indeed, the aspirations of the health service in Ireland aim to achieve, never has there been a more perfect example of a group of disabled people - a small group - now in their 60s, who have experienced significant barriers and inequality in their lifetime.