Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton


Sonia’s Carer-Voice SHOUT-OUT

Sonia’s FEEDBACK regarding the ‘connecting with the patients’ roundtable we moderated.

“The interaction with the tables was a bit one sided with connecting with the patients. They need to connect and open up more. They expected us to answer ‘their’ own questions.”

Sonia Hawkins speaking about the Impatient Roundtable ‘Connecting with patients’, 17th October 2018, eyeforpharma Patient Summit, London.

Why just collect the views of patients when the voice of the carer is just as important?
And, who is educating them?

My colleague, and fellow Founding Five Member of FibroFlutters, Sonia has since spoken to me about the time she did a ‘connecting with the customer course’ through her work, and then she suggested it as an idea to put forward to pharma.  “It may help them to learn how to connect with patients”, she said. 

  • They need more meetings with patients to connect.
  • They need more input from the carers, carers deal with all ages, their medications, appointments etc

Sonia has been carer-mom for some time now and has an excellent perspective on the kinds of things that carers know.   She has cared for her own daughter, who was born with heart problems and had heart surgery as a baby and followed by many other surgeries and another one in the future.  Naturally, they have both seen many consultants where she had to make the decisions regarding medications and treatments. 

Sonia was in charge of her daughters medication routine, meaning she had the role of managing drug adherence, hospital appointments and any other special requirements.  Her thoughts are precious regarding drug adherence as she was the one making sure her child took the medications at the right times with food, without food, an hour after such and such.  It is a proper job monitoring so many medications and I have this problem myself with my own. Now she has to monitor herself aswell.

Carers have more insight than the patient in such an instance so pharma are missing a huge part of the ‘patient-pool’ regarding ‘adherence statistics’ and ‘data gathering’ for clinical trials. ~ Carole own opinion!

Sonia now uses her voice to help spread this message and during her time at the eyeforpharma conferences has developed a passion for external advocacy as much as I have.  Together we make a great team because we can give a dual insight into the world of chronic illness. You can see Sonia in Barcelona along with myself in March.

Some people don’t quite understand why Sonia and myself have chosen this journey and it is difficult to explain in ways that are easy to understand.  Most of the population don’t understand ‘pharma’ and / or care about it so you have to go into quite some detail when talking about it.  Convincing regular people, patients, carers etc about the fact pharma is changing is as much of our duty as it is to learn from pharma and to educate them back. 

We are having to convince patients as much as we are pharma, and …

… Seriously, we don’t think pharma realise this at all!

Sonia and I posing for the camera

Unfortunately, Sonia developed fibromyalgia and other health conditions that cause her tremendous pain and fatigue, but she still has that carer role…  and she also still works part time too.  However, she struggles daily with this and finds it incredibly difficult to manage her conditions alongside the things she has to do.

… The only difference now is that her voice is even more valuable as a patient-carer

So? Sonia’s question to pharma is…

Why aren’t you listening?

“They need more meetings with patients to connect.
They need more input from the carers, carers deal with all ages, their medications, appointments etc”

Sonia Hawkins, Patient-Carer Voice

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