Radu Costin Ganescu recently joined the EPF Board and is the President of the National Coalition of Organisations for Patients with Chronic Conditions of Romania (COPAC). Last year he had a healthcare-associated infection after a surgery: we asked him to share his experience with us for our focus on patient safety in June.

How did you acquire a healthcare associated infection (HAI)?

Last year I was hospitalised for a hip prosthesis surgery. The procedure went well but after five days spent at home, I started to have respiratory problems and chest pain. I quickly realised that I was facing a complication after surgery.

At the emergency hospital, I was diagnosed with thromboembolism but the diagnosis was later invalidated. I was released home with  antibiotics as they thought I might have a simple pulmonary cold. In the following 24 hours I had to be re-admitted to another hospital due to continuous chest pain and difficulty breathing. I had to re-do all the same tests  that showed a new diagnosis of possible bacterial pneumonia. One week and a lot of different treatments later, I asked to be discharged on demand without having a clear diagnosis, only a suspicion of hospital infection (nosocomial) caught after surgery.

What would you recommend to patients  to avoid getting infected when receiving care?

Besides hand hygiene information being readily available, I think we should emphasise cleaning the healthcare settings. It is crucial that people believe in these preventative measures and that they take them seriously. The cultural differences among healthcare organisations, but also among countries also plays a role in this. There is a clear need for a mindshift in Romania; for instance, to make sure that all those concerned (primarily managers) understand the key role of patients, mostly in the public sector, and keep patient safety in mind while working.  Sometimes, due to the underfunding of hospitals, the managers’ decision on spending the allocated funds is between buying good quality medical gloves or buying poor quality ones to save money for other expenses.

What can be done then?

From my point of view, these complications arising from hospital medical services need to be better monitored by the authorities. Unfortunately the problem in the Romanian healthcare system is that infections are not always reported. Even obvious cases of healthcare associated infections are not recognised as mistakes, so challenging the situation in court is not possible. What I think could work to prevent HAIs, and one of COPAC’s objectives as well, is to engage patients as equal partners in healthcare design activities, including those that refer to safety improvement. The first step would be to set up councils of ethics in hospitals, which would include a representative of patients, to better regulate the healthcare provision and the management of errors.

What is the cause for the prevalence of HAIs in Europe?

The main cause of threat to patient safety is the political interference in the appointment of managers and other health professionals, which implies lower healthcare quality standards. That is the reason why we stressed in the report that Member states should “ensure that health managers are appointed on the basis of their merit and not of political affiliation”.

Moreover, the austerity measures that some member states have applied to the health sector have a negative impact on patient safety, for example the reduction of medical personnel or of hygiene specialists increases the risks for patients to get healthcare associated infections.

What could be the role of patients and patient organisations in the prevention of HAIs?

Patients and patients’ organisations play a pivotal role in the prevention of HAI. It is essential to empower patients with key information to enable them to take informed decisions and give an informed consent. We need to make sure that patients and their organisations are actively involved in the treatment decision-making.

HAI can be prevented by adopting a patient-centred approach to medical treatment and by promoting the humanisation of treatments, for instance, providing home-care medical treatments, which can help patients psychologically and result in better healthcare performance.

What are the next actions you will undertake in patient safety?

I will keep working on this important topic at the European Parliament. I will also follow closely the work of DG SANTE and the EU working group on patient safety and quality of care. From bilateral meetings with the European Commission, we understood that the EC welcomes and shares the main messages of this initiative report, which will be used as a basis to justify further action to increase patient safety.

What’s on the top of your agenda?

Our biggest challenge, now that patients and their organisations are taken seriously, is to guarantee the active participation of patients with chronic diseases and to organise it in a way that respects our individual needs.

Why does your organisation exist?

In the past, the system was very fragmented. Many patients’ organisations were approaching policy-makers individually and they were not able to find a solution to every single problem. That is the reason why these patient groups came together to create this platform to provide a strong and united voice to Flemish patients.

What is your biggest achievement as an organisation?

After 15 years, policy-makers and other players in the healthcare field really start to listen to what the patient has to say about his or her health. The discussions no longer take place behind closed doors, now patients have an equal seat at the table.

Why did you decide to join EPF?

EPF and VPP share the same underlying vision and goals for the future. It will be very enlightening to exchange ideas and experiences with other national umbrella organisations of European patient organisations. We strongly believe we could all learn a lot from each other.

What is the biggest misconception about patients with chronic diseases in your country?

A common misconception about patients with chronic diseases is that they are no longer able to be active participants in society and their own health. In our experience, they want to work if possible, they want to maintain their social and family life and they are engaged in their patients’ organisation. Patients are no passive health care consumers, they are an active force that deserve acknowledgement.

I live with HIV/AIDS. I was infected in hospital, shortly after my birth, because I had to be treated for flu. Approximately 10,000 children have been affected at that time; only 5,000 are still alive today.  I discovered my disease at the age of 10. I remember it was during the world Cup in France, I saw a newspaper article about children infected by HIV in Constanta, which is my home town. From there I connected all the dots.  

There are two issues that are affecting my life and the one of all people living with HIV/AIDS: the therapy and the discrimination that we suffer from. We learn to cope with it, and from my experience two movies helped: “Dallas Buyers Club” which talks about Anti-Retroviral Therapy (ART) and “Philadelphia” about discrimination.

For a person living with HIV, to be adherent to the therapy is very important because this is the simplest way to control our health state. But also to manage what we eat as we need to follow a whole life regimen to remain healthy.

Discrimination is unfortunately still very present in our society. As a person living with a chronic disease we face difficult situations such as not being hired based on our condition, the fear we feel when we have to reveal our status to our loved ones, the fear we have when we think that any flu may be fatal.

But as we know: “What does not kill you makes you stronger”. Information is my power. We have to know our rights and react every time we feel that they are not respected. We have to fight for your rights; that’s for sure. I have also learned to get more out of life, to appreciate simple moments.

Right now I am an HIV activist. In my country I am involved in the biggest patient organisation in this field and I have an NGO that allows me to reach out all the people affected by this condition. We develop activities that improve their lives: support groups, new jobs qualifications, support for the poorest members of the group. I am also advocating for our rights and helping people to get to know their rights and how to act whenever their rights are disregarded

Normally, when a person is healthy he or she is not interested in what is happening with the healthcare system. A healthy person has not encountered cases like “healthcare system – mission impossible”.

Human’s philosophy is really interesting, how it changes depending on different situations. I am watching the people around me and I see patients that have suffered, but managed to overcome their illness and have now become leaders of patients’ organisations, to fight for something better.

Is it normal to live irresponsibly your life? Yes – you may be healthy now and you do not care what is happening in your country or in the EU – but isn’t this a huge irresponsibility to your future and the future of your family and friends? Does it have to happen to you to start being interested, to start being active?

The truth is that patients have valuable experience. They have fought, and they are fighting for their health, so they know where things are not working. They have a bitter but valuable experience that can be proved to be extremely useful in the future.

But this does not mean that healthy people should not be interested or that only patients should fight for quality care. That means all of us – sick or healthy- we should be active and we must have responsibility for the future!

Why do we have to become sick to see the healthcare problems? Why do we have to suffer to form an opinion? Why am I asking these questions so late when I have already passed to the “diseased side”? Because we are people. Because we are often self-absorbed and we make mistakes, but we can also save so much bitter experience by being active.