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!