Since this morning I've seen a lot of activity out there (social channels, media, etc) and it seems today everybody is talking about cancer. In some kind of sense, these are good news, but at the same time I was wondering what is the sense of all these awareness campaigns.

I would like to say that it is great to have a date like this one to notice that we are progressively winning the battle against cancer. But, at the same time, articles like the one Andrew Schorr published at Patient Power Europe made myself to reflect. When we think about cancer, do we really need to wait until 4th of February to see those nice videos, awareness campaigns and press releases to say: "Hey there! Let's talk about cancer today!". To be honest, I don't really need to have this "one hit wonder" that 4th February seems to be to realize that cancer is there. On my daily basis I'm used to see people who is suffering this disease and I would be an hypocrite if I say that I like to see so many celebs, campaigns and ribbons which will be forgotten just a day after.

I will be fair. I know patient advocacy is making a great progress in many different fields, from support to research, but I don't really get the point of this day. As Andrew stated "if the World Cancer Day is a spark, that's great! But let's work for this year to be the one in which could say that we really made a step forward in our battle against cancer".

Let's keep on working hard to have great highlights in any other day than 4th February. This way we could be proud of all our work and not just say "cancer exists". After all, who is not concerned, in one way of the other, about this disease?

Summer time has come and I thought that it was a great opportunity to resume the normal activity of the blog. A few days ago I read a post in Celia Marin’s blog talking about an interesting topic which can be summed up in the new challenges of the professionalisation of patient organisations and how this can distance them from real patients.

Let’s start by saying that patient organisations (associations, networks, foundations, etc.) are quite different one from each other depending on their objectives, scope and organizational structure. You can find, for instance, from small volunteer-based support groups to big professionalised organisations; from local associations providing patient support to supranational foundations lobbying for treatment access; from Boards constituted by patients to HCP drive entities. Also you might find a wide variety of profiles in their driving-forces: patients, relatives, physicians and professionals of all areas, who can develop their work in a volunteer, part-time or full time paid basis.

Keeping in mind all these peculiarities of the advocacy community, let’s focus on the key issue: should it be mandatory to have patients involved in the driving-force of a patient organization? Even this is a hard question to answer with a yes or no, from my humble opinion, I would say no. Let’s go deeper into details.

Before I get started, don’t get me wrong: I think that patients and their inner circle can play an important role in patient organisations, basically because they are the ones experiencing the disease in their own flesh and this will certainly lead them to take some action in order to improve their lives and try to meet their uncovered needs. However, it is common to listen “only a patient can understand what another patient is going through”. Of course, there are many common feelings from patients suffering the same disease, but every journey is unique and, even it can be quite supportive for certain individuals, it shouldn’t be taken as the Holy Grail or we will fail into the error of proselytizing the role of the patient in the advocacy community.

A part from that, regardless of our organisation focus, there is always something to measure the actions of our organisations: the outcomes for patients. No matter if we’re focusing on providing psychological support in a one-on-one basis, developing educational tools about self-care, lobbying for better treatment access, funding clinical research or advocate for policy changes. At the end of the day what really matters is that patients are doing better than yesterday until we reach the point in which we won’t be longer needed, staying away from anecdotal or non-relevant results.  And for that, being a patient is not a must. What it is a must is commitment, liability, seriousness and hard work of every single person with an active role in our organisation, no matter whether they are volunteers, paid staff or trustees, no matter whether they are patients or not.

I know this is a controversial topic which has been raised in some forums in recent times and here it is my point of view. I would like to know yours. What do you think about it? I’m looking forward for your comments!

We talk about invisible illnesses to refer to those diseases in which symptoms might not be apparent to other people's eyes. These diseases are usually chronic and have a variable impact in the quality of life of patients. It is complicated to strictly categorise all of them, but they include diseases such as diabetes, arthritis or heart diseases, to name just a few. According to some studies^[1], approximately 96% of people who live with a chronic illness may look perfectly healthy but might suffer from symptoms such as fatigue, pain, dizziness or cognitive impairment. Many patient organisations around the world work hard to raise awareness with the goal of throwing light on this reality.

Most of these diseases are well known by the scientific community and there are lots of experts and many ongoing clinical trials aiming to get either a cure, either a proper management of the symptoms. Even a society used to ask for healthy and productive individuals knows, to some extent, about them and is usually aware of the constraints that patients may experience. But, what happens when some of this diseases are not only invisible to the eyes of society but also to the vast majority of the healthcare professionals and the pharmaceutical industry even when scientific evidence has already proved their existence?

The video will be subtitled in Spanish and English in the upcoming days. In the meantime, you can watch the full video here!



You can find more information about the initiative here:

• "Patient Advocates In. Not Out" website
• Facebook photo album

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• Capacity building. It connects the passion (WHY) with the talent (HOW). Delegating tasks and, in some occasions, responsibilities in talented people can really make the difference. As I mentioned before, a good leader goal should be to create a team of talented people and to manage to convey them the passion.
• Networking. It connects the talent (HOW) with the work (WHAT). A mentor and good friend of mine told me once "Bring together goodwill talented people in the same place and you'll get results". That is networking. In this particular case, one plus one is more than two.
• Excellence. It connects the passion (WHY) with the work (WHAT). You should be able to see, touch and perceive the results. And that takes a lot of work. Inspiring this work from the passion is crucial for succeeding. This way the people won't work in your organisation just because they don't have anything better to do (if they are volunteers) or for the paycheck (if they are employees), but because they really want to be part of the organisation. This way the results will be outstanding.

First of all, I'd like to apologize I didn't write any entry for a long while. My mother has been sick and we have spent most of the time between the hospital and the doctor's practice. Fortunately, everything has come back to normality. In a sense, this post is inspired in everything that happened in the last few weeks. It's a topic I had in mind to talk about but, due to the circumstances, I'll do it before I thought.

I state my position clearly: I think there's a great gap that is not being covered in medical faculties that train our future doctors. Every single student will have to pass subjects such as anatomy, physiology, inmunology, pathology... Then everyone of them will have to choose their specialty so they will develope a in-depth knowledge on the heart, the endocrine system or the blood and the circulatory system. When they become interins in a hospital, they'll learn how to perform a precise diagnosis, how to handle symptoms and how to prescribe medications to cure the disease. Maybe, when they're ready to start working in a hospital, that young man who decided to become a doctor by vocation, may forget that a human being is in front of him while he's so busy dealing with a disease instead of a person. Is it his fault? Well, social and interpersonal skills are not required to go to University. But, what I'm almost 100% sure, is that nobody tought him how to comunicate with a patient, how to comunicate bad news or just how to stare at the eyes of a patient when he goes into the practice, leave the computer apart for a while and ask him: "How do you do?".

Last year, I had the inmense forturne to facilitate a seminar on paliative care in oncology on the occasion of the 8th Spanish Congress for Cancer Patients. Dr. Álvaro Gándara, president of SECPAL (Spanish Society of Paliative Care) was very clear: "Medical faculties are training healers, not carers". All the speakers, who were members of the Paliative Care Unit of the Fundación Instituto San José de Madrid, agreed that even the long-term outcome of the disease may be death, the doctor will consider this as a failure, because the treatment did not cure the patient. Alfredo Dominguez, nurse, summed it up well: "When a doctor says there's nothing left to do for a patient, everything still remains to be done". Also Maribel Carreras, psychologist, and María del Puerto Gómez, social worker, laid down the keys to make the change happen when treating a patient. They reinforced for me all the ideas that I had, not only as advocate, but as a patient and caregiver of a patient with a serious disease.

I've remembered a conversation that has taught me much as patient advocate. During lunch time, I was talking with my great friend and professional Fátima Castaño, psycho-oncologist, whom I was lucky to work side by side during 2 wonderful years. I was kidding about a movie in which a recent graduate psychologist extended her hand over the patient's arm to comfort him (in a very clumsy way, I have to say). I asked her: "Why psychologists use that compulsive habit of touching patients and relatives?". She explained me that in some cases this gesture can comfort the person and convey trust and complicity. So then the patient feels relaxed and shows his fears and concerns and doesn't keep them for himself. I have to say that I've remember this conversation every single day during the last weeks while I was accompanying my mother to the doctor, taking care of her at home, watching how she was nervous during various diagnosis tests and when I was waiting in the hall while she was in the operating room. And I have to say I was lucky to have that compassionate hand next to me. Sadly it never was a doctor's hand. Not because doctors were more or less sympathetic. Maybe, it was only because nobody taught them.

However, to be fair, I've the feeling that things are going to change. I am lucky to know medicine students who are members of the CEEM (Spanish Council of Medicine Students) and some others who organises the COE (Oncology Congress for Medicine Students). They are our future doctors. And they worry about patients. They want us to talk to them, to explain them our experience and concerns. When we talk to them, they express a critical point of view. This shows to me that they are treating us like equals and that they really want to confront the patients' speech with the healthcare professionals. On this relationship will depend that their training will change to be really focused on the patient and not only on the disease. There's still a long way to walk, but the seeds of change are already planted. Now it's time to watering them.