A retweet I saw earlier today by Prof June Girvin reminded me of why I have embarked on becoming a patient advocate. The original tweet was under the #patientexperience and quoted “the narrative in healthcare must change from what’s the matter with you to what matters to you”. Of course some prolific patient tweeters like myself (I admit I’m addicted) and Prof Girvin thought this strange we both agreed that what is most important to anybody who finds themselves ill is first and foremost “What is the matter with me?”

Without a proper diagnosis there is no platform for “what matters to me” you cannot replace one with the other it just doesn’t make logical sense. Of course once you have a correct diagnosis then “what matters to me” can come very much to the fore of your thoughts.

My lightbulb moment about what “matters to me” (after my family) came to me in Brussels early in 2016 when I attended a MPNE conference with my good friend Marion who has unfortunately since passed away due to this horrendous disease. I certainly felt that up to that point I had been a passenger in my own care. Marion even though she had experienced what it was like to fight for a life extending treatment also felt after that conference we really know very little about this disease or how we can help improve the situation for Irish patients.

Patient Education takes motivation and time, Bettina Ryll founder of MPNE has a favourite saying; “There is no shortcut to education”, I’m becoming more acutely aware of exactly what she means!!

Of course nobody expects to become a patient, some people are born with medical conditions, but the majority have the whole experience thrust upon them in what is often described as a rollercoaster ride or literally being thrown in at the deep end. I certainly didn’t go around studying the effects of cancer or its treatment before I became a patient I was too busy living like all pre diagnosis patients blissfully unaware or you could say blissfully ignorant.

One of the things that is vitally important to a newly diagnosed patient or their carer (perhaps if the patient is unable physically or mentally) is information. It is the number one thing if I ask patients what do you need or what do you want, top answer INFORMATION, INFORMATION, INFORMATION!!!

Don’t google we are constantly told, as patients. Listen to your doctor, they know best, but times have changed and the patient’s natural instinct is to seek out information for themselves. They may not have absorbed the information given at clinic due to shock, they may not have had time to ask the questions they wanted, they may sadly feel intimidated to do so by their consultant, they may not want to bother them with a “silly” question.

Where can they find the information they desperately need? Is it actually available to them? Is it reliable? Can they have an open conversation with their care team about their findings? Will they feel like they have some control over THEIR care plan?

The information can be found, of course on the internet mainly which brings its own problems. Sometimes it’s not accessible because you have to pay for it, medical journals have expensive subscription fees which are a barrier to patients. When you can access the information it’s often in “Doctor speak” so can be akin to reading a different language document,( a language that can be learned with practice).

Have you found a reliable source, I saw a program lately about food that showed clearly how the public can be easily mislead. It featured Ice Cream two types one contained milk, cream all the things you expect in a nice scoop the other looked similar but contained only vegetable oils and flavourings it could still be called Ice cream but not “Dairy” Ice Cream the devil is always in the detail.

It’s the same when researching health information. Websites, Natural medicinal products, lower rated medical journals, Facebook or twitter posts, tabloid and broadsheet newspaper reports can all be dressed up to look like the real thing,  I have become increasingly aware of this over the last two years, but unless you look deeper at where the ingredients so to speak came from for the information you can find yourself in possession of something that’s at best useless and a waste of money, or at worst unfortunately  actually potentially dangerous to your health and you should not base your healthcare choices on it.

A patient who comes to their care team with this unreliable information as a care option must never be rebuked or thought silly. They must be admired for firstly being proactive even if they have been mislead, they must not be told let it to me I am the expert, what this patient is trying to achieve is usually some sort of control back over the situation they have found themselves in.

It’s impossible for a healthcare professional to put themselves in the patient’s shoes even though they may have vast experience in that disease area it is never the same as actually having the disease. I was at a lecture recently and the subject of empathy from  healthcare providers was discussed, I think the jury is still out as to whether it’s something that can be thought but prehaps more interaction with patients, not at the bedside but at medical student, college phase of career which is being introduced through workshops and collaborative initiatives could help or at least that is the hope. The days of the doctor sweeping in white coat flapping telling you scant detail of your condition, and what THEY are going to do about it before sweeping out again interns in toe before you get to even open your mouth hopefully are consigned to history.


For the patient who does want to know more, the information is out there. There are ways to access it, become involved in the system as a patient voice, help to drive change, offer good peer support. In fact it is embraced by more and more organisations as they realise the benefits of patient engagement. I am at present starting my second module on a pilot education program for Irish Patients it’s not for everyone I realise that, this is also perfectly Ok. Many patients are happy to attend appointments and then not think about it or at least try not too until the next one, I tried that but it didn’t fit how I feel as a patient personally.

It is important that patients are represented on committees, boards, give their opinion on the information that’s being generated to be passed to the public such as Patient information leaflets. Feed-back on clinical trial protocols, medicine licensing, drug approvals, treatment protocols, hospital boards, palliative care, psychological support the list is endless so I will end with another great mantra I have learned as a patient “Nothing For Us, Without Us!!