The Invisible Mask


 Inspiring stories · Article

Written by Joao Medeiros

The use of a mask has never been more discussed than it is today. For us, this subject is not new, and the invisibility of our mask has been part of our lives since we were diagnosed with MS and many times even after the period of mourning that we have all been or continue to go through.

But how can we deal with this?

Times have changed, we’re now living in a world that must be able to keep focused on different changes happening all around us. How can we empower the MS community to implement these changes?

Patient Empowerment is this century’s blockbuster for many HCPs. They try to give patients the capacity to understand their role in all the process and provide several exits to face the disease.

    1. It’s quite simple
    2. It has a positive impact on the NHS: (Better results; satisfaction for all parts involved; more healthcare quality and undercharged Health System).
    1. Society 
    2. Government 
    3. Healthcare Institutions
    4. Scientific Societies
    5. Pharmaceutics Labs 
    6. Patient Associations
    7. HealthCare Professionals and Patients

    In all levels...but in different forms 

    1. Macro Level – The all System
    2. Meso Level – The Institution
    3. Micro Level – Medical appointment

    As soon and as much as possible! We start with the Diagnostic March.

    1. Diagnosis with shared therapeutic commitment
    2. Monitored treatment
    3. Disease evolution 

    1.    Preventing education and instilling confidence:
    a)    Patient & HCP tie-in
    b)    Trust from the beginning
    c)    Shared decisions
    d)    Communication skills: Recommendations and good practices

    2.    Valuing PROs (Patient Reports Outcomes):
    a)    Minimise the disparity between the perception of the patient and the doctor
    b)    Enhancing the patient's QoL (Quality of Life)

    3.    Provide credible sources of information:
    a)    Accredited sources and reliable literacy

    4.    Enhancement of therapeutic adherence
    This adhesion is linked to many external factors, such as economic, social and cultural factors. Also, to those related to HCPs, such as the perception of the disease and therapeutics prescription.

    Regarding the patient, we can summarise it in three stages:

    1st Stage – Therapeutic agreement:

    • Family involvement
    • Information on the disease and its treatment
    • Drug administration mentoring
    • Side effects and monitoring of instituted medication

    2nd Stage – Adhesion

    • Continuing education

    3rd Stage – Maintenance

    • Management of expectations regarding therapeutics
    • Regular contact
    • Monitoring support programmes
    • Therapeutic re-evaluation and review whenever necessary
    • Assessment of the adaptation of the patient and his family to the disease.

    So, how important is it to trust your neurologist?

    Trusting your doctor has clear health benefits. You'll be more likely to try new drugs, follow your treatment plan (jointly agreed with your trusted doctor), share important medical information, take preventative measures and have better control of your MS. 

    Up to half of the failures in treatment reported by patients are due to not following the regime suggested by doctors. This increases the risk of hospitalisation and extended ill health. One study found a small but statistically significant association between how much patients trusted their doctors and how much their symptoms improved within two weeks (allowing for different factors that could have influenced the outcome).

    If your doctor takes your problems seriously, if they listen to you with empathy, feel like your ally, involve you in decision-making (sharing the pros and cons of treatments in a straightforward way), then you're naturally more likely to trust them. Judging their clinical competence is harder, but you may be able to go on past experience. Anything that reduces the power difference between you and your doctor encourages trust. 

    Our invisible MaSk should be removed as soon as possible! Talk to your neurologist and they will help you to take off yours.

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