18 April brought with it Patients’ Rights Day and this was finally commemorated in Malta, with the Malta Health Network organising a conference at SVPR on the day

It is interesting to note that patient organisations come together and discuss issues and learn about what Europe is doing with regard to this part of human rights. Due to work at my clinic, I had to leave an hour early but one could already take a certain feeling with the comments being made by the audience.

Indeed many pointed out certain faults with the waiting systems, with the entrance of residents at SVPR, on whether one can discriminate on the basis of maladies, and such. At university I am bringing smaller patient groups together in order to assess needs, with the idea that there is power in numbers to lobby for needs. We can certainly cooperate. However I was very pleased to see patient groups getting together and forming one mother network which participates at EU level and can therefore educate the general public.

Patients’ rights have to commence with respecting the autonomy of individual people; that is respecting that they can make choices with regard to health care based on a clear understanding, intention and when there are no controlling influences. It is from this basis that the notion of informed consent arises. Patient rights are not really about negligence and compensation. It should not be, although this does come into it when things go wrong. Nevertheless it would be a big mistake to put the cart before the horse. We need to foster a healthy relationship between health care professionals and patients and not turn it into something which can be perceived as an ‘us’ and ‘them’ situation. Indeed together we can lobby for further enhancement of the role of patients in health care, working towards a caring society that recognises we are all subject to illness.

One issue which I believe to be important is cross-border health within the EU. We know that when abroad, as EU citizens we have a right to access health care. But this is only for emergency situations and indeed one needs an application of form E111. It does not stop there. Patients have a right to seek treatment in another EU state if their own country does not offer it. But there is certainly more to it than this. What we should be working on is cross border primary health care. The EU is about facilitating economic transfer. This led to facilitating the transfer of workers from one country to another. Hence health formed part of it. But one can only get easy access if one becomes a resident in another EU state. What we should be working towards is finding appropriate health care even for short stays. Already there is work being made to make official prescriptions valid in all EU states. Unless these carry an official format or stamp, it is probably that it will not work. Moreover if I go on a holiday, why should I have to visit a GP and pay?

If we are to celebrate a Patients’ Rights Day, it is because we want to remind people of this cause once a year – something like Father’s Day, or Women’s Day. But it is also because we want to celebrate patients’ rights, which are still being violated in many parts of Europe. Having said that I do not believe that confrontation about painful issues, such as the bed situation, are things which patient organisations should get into. This is not to say they should not lobby the government for improvement. But in a small country like ours one can easily fall prey to politicising issues, which then lead to defensive medicine and defensive politics.

If patients’ rights are to move forward, they should do so in a non-political manner. The political side can easily be tackled by politicians – it is their job. Our job as patient advocates is to see that insofar as the principle of justice permits, rights are being respected. No government wants to fail its vulnerable people – patients. It is about fostering working relationships to tackle issues which need tackling. Simply pointing out a bed problem is putting salt on wounds. Unions often do this; but they are in a position to do so – even though they often abuse it.

Conversely patients can be involved – from discussions of primary care to participating in medical research not merely as subjects but as partners. International experience has shown the valid input patient groups have made to validate what otherwise would have been invalid projects. This is why we have to start with assessing the needs of each and every patient organisation. There are the big ones which have become major fund raisers. But there are the smaller ones which when put together contribute much to the biopsychosocial well-being of the patients they represent. Patient groups often simply want to help their members cope with their disease. In the process they educate members about the disease and also about rights. They offer support. Bigger mother organisations can become important lobby groups to empower the smaller groups. But the grass roots should not be ignored.

In such days it would be nice to hear positive experiences of individual patient groups and what they are doing and how needs are being met.

Pierre Mallia is Associate Professor in Family Medicine, Patients’ Rights and Bioethics at the University of Malta; he is also Ethics Advisor to the Medical Council of Malta. He is also former president of the Malta College of Family Doctors.