Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

As health spokesperson for Sinn Féin, I would like first to welcome those parents with us here today in the Gallery and mention the many more who could not be here because they are caring for their children at home. I would also like to thank sincerely all the Teachtaí Dála, across the House, who have put their names to this motion. This is not just a Sinn Féin motion. It transcends parties and politics.

It is important that, as we rise for the summer recess, we remember that for thousands of families across the State there is no respite. They have sick children who need care and access to services. They battle every day for their children and, sadly, most of their battles are with the State. I think we all agree that that is fundamentally wrong. However, today I hope we can move to lifting one of the greatest hurdles these families are facing, access to medical cards.

What sort of system tells a parent of a young child with a disability or an illness that the granting or continuation of a child's medical card depends on the parents' jumping through bureaucratic hoops to prove they do not earn too much? Access to quality health care should be a right and not a concession to be granted or withheld by any Government, Minister or civil servant.

Let me tell the House about Réaltín. According to her nurse, Réaltín has had a particularly fragile start in life. Her mam has given me permission to use her name here tonight but it gives me no pleasure to have to share this story. Her nurse wrote in a letter:

This little girl has had a particularly fragile start in life and while she has hopefully come through very difficult surgeries for Duodenal Atresia and complex heart surgery, she has Downs Syndrome and [she] has recently been diagnosed as deaf and may require implants in the future.

She requires [a] CPAP [machine] at night for sleep apnoea [and] has significant developmental delay. Her road ahead remains very challenging and securing a Medical Card for her would certainly relieve some pressure for [her] family.

Needless to say, Reilitin’s parents, were very disappointed when Reilitin’s card was refused and [they] cannot understand why discretion was not applied to their daughters case.

A further communication from her nurse tells us that she was informed that Réaltín's continuous positive airway pressure, CPAP, machine is not covered by her long-term illness card. This has just added more stress for this family. The nurse describes Réaltín as a very deserving little girl and I do not think anyone would disagree with this, yet her medical card was not granted. We should not have to legislate for compassion but Réaltín's case proves that this is indeed what we must do. I, therefore, ask the Minister if he thinks it is right or fair that this deserving little girl has to wait. We do not think it is and the Teachtai Dala who have co-signed this motion do not think she should wait either. We need to end the two-tier health care system and we need to move towards a system where every person who needs health care will have that need met.

I firmly believe that no Deputy in this House would disagree that children with a terminal or a life-limiting illness should have access to health care and adequate personal support irrespective of means. The public would be behind us. Anyone who has been through the medical card application process or who knows someone that has would tell us, as legislators, to simply do whatever is necessary. They would say we should forget about getting P45s, P60s, PAYE balancing statements, bank statements and evidence of mortgage payments and social welfare searches, etc. They would say that once a person's illness or disability has been confirmed and a medical need established the State should do all in its power to help and support that person and his or her family. There should be no means tests, financial audit or, as the expert group under its terms of reference were initially examining, a list of specified medical conditions. We believe that access to a medical card should be on the basis of medical need only.

We need to move to a system that shows due respect and compassion, taking fully into account not only incomes, but the burdens imposed by medical conditions, illnesses and disabilities. We must see an end to the disturbing and insensitive practice of the requirement for those with life-limiting illnesses and permanent disabilities to respond to review after review, despite the ongoing progression of their illness and the reality that there will never be a recovery for them. Some people with terminal illnesses cannot get medical cards. There is no such thing as recovering from a terminal illness.

For those of us who are fortunate to have good health or for whom there are no caring responsibilities, the importance of a medical card cannot be fathomed in terms of quality of living and quality of care. First, it meets the costs of visits to the GP, medication, aids and appliances. Whether it is one's own diagnosis or that of a child or a loved one, being dealt the blow that one needs a range of aids or medicines to deal with it, as well as the illness or disability itself, can and does cause grave hardship. When a person's household is just over the income threshold, or just straddling it, and thus unable to get a medical card, getting access to these can be next to near impossible. I spoke to one family for whom two pieces of critical equipment for their child was the equivalent of the full year's carer’s allowance payment one parent was receiving.They were over the income threshold for the medical card as a household. This is not right.

Second, the medical card is a passport to gaining automatic access to a range of community based and primary care services. This is a particularly challenging position to be in if one has a complex condition requiring ongoing multi-disciplinary support in the community. A number of studies have found that people suffering from an illness or a disability are more likely to fall into poverty than people in good health or who have debt problems due to health care costs. This is not the kind of Ireland that I think any of us want to live in. We should support vulnerable people and not exacerbate their vulnerabilities and hardship.

If the intention is to move to universal health care where access is based on need and not ability to pay and to remove the inequalities associated with that, it is right that people with disabilities, chronic conditions and distinct medical need are put to the fore of this plan. Our first step concerns the 10,000 medical cards for sick children.

Then we must legislate for a distinct, new, medical need ground for eligibility for the medical card with an associated application route, using the DCA assessment framework as a model, an assessment involving the establishment of a threshold of medical need and not tested against a household's financial means or against diagnosis titles. We must legislate for this. Reviewing previous Committee of Public Accounts deliberations on the issue, the Comptroller and Auditor General, the Secretary General and the HSE are very clear. A system whereby qualification for a medical card is on the basis of medical need alone can only be given effect by a change in the legislation, not by a change in the administration of the scheme by the .

The Minister knows from his meeting with Our Children's Health that, for these worn-out parents, the medical card process is torture in slow motion, with constant form filling, endless reviews, rejection and appeals. For those who may get the medical card, discretionary or otherwise, which is a child's passport to the basic care plan, there is no relief. There is still the endless worry and anxiety. There is always another application and they are always waiting for the next review.

I know that the Minister, Deputy Harris, has issued a press release following our announcement of this motion, confirming that it is his intention to bring forward the legislation. Getting down to the practicalities, when do we envisage that those 10,000 children will see the benefit of this change? This, for many children, is very much a life and death issue and it cannot be long-fingered. If the Minister does not intend to announce the measure until budget day, when will the legislation be presented to the House? Looking at the swathes of support for this motion, I do not see any opposition to the legislation so its passage is going to be easy. We are on board already and want it to happen. If the Minister brings forward the legislation we will support it. The families need a timeframe and to know when the medical card eligibility criteria will be changed. They need certainty and the Minister should give us the certainty of a date by which the legislation will be enacted.

We welcome the Government's commitment but this group has had many false dawns. There is a track record of broken promises to these people and we should not waste any opportunity to give them the certainty they need. We will press the Minister and the Minister of State tonight to give us a date and to give the families who are watching in the Gallery and at home what they need. They cannot take another broken promise and need to know when the criteria will be changed. The Minister has support for the legislation. We have drafted it already and have attempted to table it. We can do this and we should make it a priority.

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