Joe Flaherty (Longford-Westmeath, Fianna Fail) | Oireachtas source

At the outset I acknowledge the Minister's work and commitment to the health service. I know he is passionate about what he is trying to do and achieve. Sometimes it might feel as though he is almost a punch bag for everything that goes wrong with the delivery of the service. In that regard I have some sympathy for him.

However, the reality is that when things go wrong or even if there is a perception that things are awry there is an all consuming fear and suspicion that the State has failed society at large. As the Minister is well aware, the reality is that we have thousands of staff across the Departments of Health and of Social Protection and multiple other government agencies who work day in, day out, with the best of intentions and are singular in their commitment to deliver first class services. There is no public or civil servant who does not strive to deliver the best for their neighbours and community. It is a deeply laudable trait and that same tenacity and commitment needs to be reflected in the State approach.

I accept the Minister has a difficult task here today but the reality is that the public at large does not have the time, inclination or energy to drill into the minutiae of the cases and certainly would feel overwhelmed by the legalese of the Attorney General's considered opinion in these matters. I accept the State and various Governments pursued a policy for 15 to 20 years, largely on the basis that it was their considered opinion that medical card holders did not have an entitlement to free private nursing home care. I also accept that a limited number of cases were settled over the course of ten years where there were complicating factors. While no case ever proceeded to a hearing, the State has said it would have defended its position and would have had bona fide defences prepared in these instances.

The key point for the Minister and for us as a Government here is that the State would have defended its position and had defences prepared. The situation of the disability allowance payments is similar where the Attorney General found that there was no positive legal duty to make retrospective payments. The phrase "positive legal duty to make retrospective payments" does not inspire and does not ooze empathy. It rings hollow, lacks empathy and while technically and legally correct, it is not the message those who are suffering and battling against multiple odds needed to hear or need to hear now nor, in many cases, what their families need to hear.

The reality is that despite the Minister's earnest and heartfelt efforts and those of the people who work in the aforementioned Departments, the public still feels that we are too adversarial and that the State instantly retrenches to a line of defence. The experience of the past two weeks and the battle scars from the medical card and disability payment debacles should teach us as a government that we must embrace empathy. We cannot, as a society or as a Government, instantly retrench to a position of safeguarding the State's interests and coffers, as laudable as that idea or notion might be in some corridors of power and financial prudence.

There is an awful lot of anger and the slightest of perceptions can trigger ire. Vested interest groups, be they opposition parties or increasingly radical elements in our society will use this to their advantage. Regrettably it is driving a deep wedge into the heart of our country and somehow we need to take stock and find a way to allow us to simply do things better as a society and as a Government. In many instances, much like the medical cards and disability payments, it is simply a matter of communicating better, engaging with people and steadfastly abandoning what seems to be a default position of stand and fight in some Government quarters when things look wrong. We need to talk to people, we need to communicate better and we need to stop festering and fertilising deeply emotive issues that challenge the public's faith in the national agencies.

In my time in public office I increasingly find that if something was not done last year, was not done before or in the recent past, there is a deep reluctance to tackle the issue or try something different. It is almost a default position for the agencies of the State. Much of this fear on the part of staff might be due to living in an era of accountability and that is right. However, ultimately nothing should ever trump the need and requirement to do what is right for our people.

A case in point is that of Jonatan Safiak, an eleven year old boy from Longford town. He struggled with his health from the age of four months and his mother, Aneta, began a tireless tour of consultants and specialists to try to find out what was wrong. The most recent estimate is that they may have attended up to 40 different doctors and specialists.

The ultimate breakthrough came when the family visited Nottingham last year and met a team of specialists at the epicentre of the treatment in the UK for ataxia telangiectasia, AT, a very rare disease. In March last year we got that diagnosis. It is an extremely rare disorder which affects the nervous and immune systems and many other essential bodily functions. Unfortunately, people with the condition rarely live beyond 19 to 25 years of age, although there are some exceptions who live into their 50s. The kernel of the issue is that the condition is going to cause Jonatan and a small handful of other children who have a similar diagnosis in this country to lose their ability to walk. It will also significantly increase their chances of getting cancer during what is a very short life expectancy.

An Irish doctor is working on a groundbreaking treatment trial in Australia. While the scale and pace of the treatment for AT is somewhat more advanced in the UK, it has not as yet embraced the Australian trial. I understand a similar trial is under way in Germany, with a plant-based treatment which poses no physical to the patient. It is very much a case of managing the disease in these quarters, rather than curing it, because the general consensus is that there is no cure.

Unfortunately, we do not provide treatment for rare diseases very well in Ireland. I admit we are a small country, but that should not define us - and some might say it should inspire us. The reality is that teams across the world working on AT, including those in Australia, Germany or the UK, count among them many Irish people who are leading the charge in treatment of and research into this disease.

I accept that the number of children in Ireland with an AT diagnosis could be as low as five, but each case is heartbreaking and behind each case is a child and family desperately hoping against hope. We are soon to open one of the finest children's hospital in the world. It can be a beacon for child healthcare worldwide. Unfortunately, there are many other Jonatan Safiaks and those who have little known, but equally challenging, diseases and conditions.

We need to do better when it comes to treating rare diseases in this country and we need to make a much easier for families to access care and treatment outside the country. Time and again, when the country presses the empathy button nobody does empathy better. Empathy is much more than a virtue; it should define and underline how we function as a State and treat our citizens, especially those struggling with ill-health.

We also need to be more innovative in the delivery of our healthcare system at home. As we look to the opening of a new dedicated children's hospital, could we not look at an immunology-led team to take on the Australian inspired AT trial in Ireland? It would require six-week cycles in hospital for, at most, three to five children at any one time. Crucially, it could prolong their fragile life expectancy by several years.

I have the utmost and highest respect for the Minister, Deputy Donnelly, and I believe there is no one more passionate or wholehearted in this country at the present time about delivering a better health service that befits us as a modern, progressive and compassionate nation. We need to stop being so adversarial and take better care of the Jonatans of this world. I ask the Minister to take a personal interest in Jonatan's case in the hope that we somehow can provide his parents and siblings with a torch to guide them through what seems to be a very tense and never-ending fog.

See this speech in context