How many times did I feel that I am are alone, suffering from side effects and pain due to my disease?  How many times did I go to online webpages or social media to check which products I can consume and what other sufferers, like myself,  have gone through?  And when I found something that is in line with my diet plan, how many times did I share a photo of it with my  friends or family and recommend it to others?

My personal answer is: innumerable times!

Today’s reality is that the use of social media services such as Twitter, Facebook and Instagram has become an integral part of my daily life. With the advantage of accessibility, many young people tend to choose online research to learn more about their conditions, rather than going through hundreds of pages of different books. Others prefer to read someone else’s experiences from Facebook, Instagram or Twitter.

I find social media very useful, particularly as a platform of interaction where I can connect with other people suffering from the same disease. Such media offer a basic level of knowledge that is more youth-friendly than the medical words usually used by medical professionals.

Social networks allow us to easily upload content and become a creator, manager and distributor. We use such channels to voice our opinion and concerns in a local, national or international context. This makes youth empowerment more credible in the modern world we are living in.

The EPF Campaign on Patient Empowerment addresses the need for patients to access all the relevant information, in an easily understandable format, to make informed decisions about their health – mine are made thanks to social media!

The EPF Youth Group has opened its own Facebook Page and in a few months has reached out to hundreds of people. What are you waiting for? Join our online forum!

Why does your organisation exist?

Stigma around mental health problems is still very common across the EU. Access to quality care and support is lacking and the institutional model of mental health services is still prevailing in many countries. MHE’s mission is upholding the mental health and well-being of all citizens, from all minority groups and from the whole of Europe – We will continue our work as long as our objective is not yet fully realised.

 What’s on the top of your agenda?

Currently, the review of the EU by the UN Committee on the Rights of Persons with Disability is top priority. This is a crucial opportunity for getting mental health into the discussions and see whether the EU delivers or not in terms of human rights for persons with psychosocial disability.

What is your biggest achievement as an organisation?

MHE has done some very effective work on deinstitutionalisation. We conducted research showing how many people are still in institutions in Europe – an area where collating data has proved to be difficult.

The work that we have done on the link between mental and physical health was also a great achievement because research in this field is still quite limited. 

What is for you the key benefit of your organisation’s involvement in EPF?

It is a means for strengthening the link between mental and physical health and for ensuring joint lobbying efforts. EPF also offers many network opportunities and organises quality events, which we are always happy to attend. 

What’s the main misconception about your disease area?

That persons with mental health problems are dangerous! The truth is that persons with mental health problems are more likely to be a victim of violence than a perpetrator of violence.

Dementia is a syndrome, typically involving loss of memory, mood changes and problems with thinking, orientation, comprehension, calculation, learning capacity, language and judgement.

These symptoms occur when the brain is damaged as a result of one or more diseases or conditions, the most common one being Alzheimer’s disease. It is usually a progressive or chronic condition, which is not a natural part of growing old.

The way in which people experience dementia depends on numerous internal and external factors, including the support and treatment that is available to them. However, people with dementia are increasingly emphasising that despite the challenges it brings, it is possible to live well with dementia.

It is clear that no single country can overcome dementia’s financial and socio-economic impact; this will only be possible through a collective effort. In Europe, there are already many good examples of collaborative initiatives on dementia. The time has come now to bring these initiatives together under a comprehensive European strategy which is what we call for in our Declaration.

A public health priority

Dementia should be a public health priority for many reasons, including:

• Public health impact: there are currently 8.7 million people with dementia in the European Union and this number is expected to at least double by 2040.
• Socio-economic impact: the total cost of dementia disorders in the EU in 2008 was estimated to be EUR 160 billion, of which 56% were costs of informal care.
• Impact on carers: a survey by Alzheimer Europe found that the time spent on caring increases with disease severity: in the early stages, 20% of carers already reported that they spend more than ten hours per day caring for the person with dementia. This increases to 50% of carers of people with dementia in the late stages of the disease.

We will continue our campaign until 30 November, after which we will present the results at the European Parliament. Sign the #GlasgowDeclaration today and help make real change happen for people living with dementia!

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.

EPF launch conference kick-off was one of EPF’s best-attended meetings to date – a fact that highlights the level of importance that stakeholders attach to the concept of patient empowerment.

In our lives we expect – indeed demand – to have a say in the way services are delivered. If we engage an architect, we take into account their expertise but we expect them to deliver what we want from a building – not just what they want to give us. This is what we should expect from healthcare systems as well.

With the technological change we have witnessed in recent years, taking direct control of other areas of our lives has become natural. Take, for example, television: we used to watch what we were given, at the time of the broadcaster’s choosing. This is no longer the case. We can now watch what we want, when we want. We use social media to interact with others about programmes and we can even influence the outcomes of programmes. We are no longer passive consumers. This is the level of co-decision making we should expect from healthcare systems.

With the launch of EPF’s campaign, we have seen that there is a significant level of motivation within the patient community – and among other stakeholders. We also know that we have an external environment pre-disposed to the concept of patient empowerment. But what about the political environment?

I would argue that the time is right here as well. We have seen a Copernican revolution in Brussels over the past few months. Decision-making has become more political and more top-down than we have ever seen before. What happens at national and Brussels level has become more intertwined. The impact of events in one member state can be seen in other countries – think Brexit or Grexit. This combination provides the patient community with a perfect opportunity to set the agenda – their agenda – both in Brussels and at national level.

Patients have achieved so much over the past few years: they have made their voice heard and they have secured a seat at the table. Now comes the opportunity to make sure patients’ needs are at the centre of the healthcare systems that patients themselves co-design. Now is the time to win the argument for patient empowerment.

I am 16: an age to be young and find your first breath of freedom. This is also the age that I was diagnosed with diabetes. But, it’s not all bad. Initially the fear of having an illness that would expand a lifetime catapulted me into a new world where hospital visits became the norm, blood tests became routine everyday activities, and over-protective parents looked on.

It’s not the illness that is tiring. Chronic illnesses are invisible but their management is less so. The doctors and nurses always spoke to my parents but they did also take time to talk to me. Although I had the support I needed it was extremely difficult to become an empowered patient.

As a very aware young person, a health activist of many years, being empowered and asking the all-important question about seeking a better treatment option for my own health, felt like I was asking for a Gucci handbag from an H&M store. When you’re a patient, you don’t just take control of your own health, you begin to factor in other patients lives and needs.

Regardless of all these thoughts, the fact still remains that you are a patient and you deserve a slightly more personalised service. You do deserve the right to feel like you can take control of your new health problem and learn to adapt, live and develop as a normal individual.

You deserve not to be worried about your future because you can’t seem to manage this ‘minuscule’ problem in society’s eyes that you know is enormous. After almost a year and a half of this internal struggle to request a better treatment, I made the stand. It was coming close to that awful transition period between paediatrics and adult healthcare.

Despite meeting the criteria and having a clinical need for the newer treatment option (in my case an insulin pump), you have to be ready to battle every question you are asked about why you need it. It’s not a simple conversation between a doctor and patient, it can turn into a court room where you are the innocent being proved guilty.

Although there was resistance in my case from one doctor, I did not accept defeat. I fought to secure recognition of my changing needs and that is what every patient must do. In order to obtain what you need, you need to think like a politician or a lawyer; you will need an answer for every question.  Be persistent. Be determined. Be, if necessary, a nuisance because only perseverance will secure success.