Franz Josef Huainigg

“I want just three things: to live; to be at home with my family; to work …” These were the three wishes movingly expressed by Franz Josef Huainigg in a brief address to an ERS pre-ministerial conference in Brussels on 19 October.

Mr. Huainigg, a member of the Austrian parliament, has a progressive myopathy, a condition that requires mechanical ventilation. He has been confined to a wheelchair and breathing permanently through a portable ventilator since 2006.

He had expressed these three wishes to doctors and nurses during his last prolonged stay in a specialised medical centre.

Thanks to new policy introduced into Austria in 2009, allowing personal assistance of a nonprofessional after special training, Mr Huainigg was able to achieve those three goals. Explains Dr Sylvia Hartl, past ERS Secretary General and head of the Department of Pulmonary and Critical Care at the Otto Wagner Hospital in Vienna: “The idea of making it possible to send the patient home, even in cases where this demands extremely specialised care is fully supported by the health authorities here.

It means providing complete training to members of the family or non-professional personal assistance but pays huge dividends in the end through the patient’s ability to lead full, independent and productive lives within the community.

“This option is not open in other countries, as there is growing demand for specialist nurses service only, which is too expensive for most patients. Giving certificates after a training course to nonprofessionals, we created a quality standard to secure less costly personal assistance in home care. We hope the results we have achieved will serve as best practice for home care and demonstrate how positive the impact is on the life and wellbeing of patients with severe chronic disease,” concludes Dr Hartl.

Commenting Franz Josef Huainigg’s address, pre-ministerial conference Chairman John Bowis OBE said it demonstrated what can be achieved by sensitive and responsive health policies that “enable people to make life enhancing decisions – fighting for life and the right to have a life.” This is certainly the case for Franz Josef Huainigg, who immediately left the Brussels pre-ministerial conference to address his work at the Austrian parliament.

Other commentators welcomed such patient care initiatives, highlighting the need to establish standards and guidelines for training in home care of the severely chronically ill.

The only dark spot in this inspiring story illustrates nevertheless the daily battles that people with disabilities face. Despite the fact that a specially equipped taxi had been ordered to pick up Mr. Huainigg at Brussels airport, the one that turned up was not equipped and the driver sped off into the night. It was another three hours before an appropriately equipped taxi arrived and drove Franz Josef Huainigg to his destination in downtown Brussels.