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Grandparents as patient advocates

In our fast-moving ever-changing lives, Grandparents can feel outpaced by the modern family. Where and how can grandparents find a way to feel productive and useful within their extended families?  Well, there are a variety of ways that we grandparents can contribute and be helpful within the family and make ourselves useful and even productive.

By Julia Putman

There’s the historian, the storyteller, the singer of lullabies from times of old, the guardians of generations of delicious recipes, caregivers, the fixer, the calm in the storm and many other intergenerational connections forged through a common theme: … ’love’.   We love our grandchildren and want the very best that life has to offer for them.  The degree to which we can help them achieve the best is dependent upon a variety of conditions and circumstances but, broadly speaking, we grandparents will move Heaven and Earth to help the children of our children.  We have more time, more experience, more knowledge and more resources as our families grow, and we also have a deeper understanding of the most precious of all our possessions, health!  Its importance and value is worth more than any riches. Without health, we have nothing.  For this reason, when the health of our grandchildren is suddenly in question, we become warriors, we know what we’re fighting for and leave no stone unturned in the search for answers or a solution.

This is where I suddenly found myself, in the midst of a quest for knowledge and help for our new baby grandson. He was born with a significant vascular birthmark which baffled the medical team surrounding him as he was newly born. Some of the medical professions were a matter of fact, honestly stating they had never seen anything like his birthmark before, one announced it was probably just dry skin, whilst another advised it was an allergy to fabric conditioner and advised a change of laundry product.  As he grew, and the integrity of his skin appeared to be compromised, I was fervently scanning the internet for any information I could find.  I knew that his parents were very concerned but also, very busy caring for two small children and continuing to work and take care of business.

I found Lex Van der Heijden, CMTC & OVM through Facebook and was immediately reassured. I felt empowered and determined to continue my search for more information.  My experience as an Advocate for young people in a professional capacity has taught me that children need a voice, someone to have their back when words fail, and stressful situations overwhelm them. I am passionate about advocacy and feel we all need an advocate from time to time.  I urged my son and his partner to push their doctor for specific, specialist help and through the knowledge I was gleaning through CMTC’s information, I was able to support them to seek a referral to the UK’s St Thomas & Guys Hospital in London. They attended an initial appointment locally with a Dermatologist, armed with an informative typed list written by Grandma, carefully, diplomatically worded to lead the Dermatologist to look beyond an allergy or a skin rash.  I included all the salient information for the Dermatologist, including the Vascular Anomalies Clinic in Guys/St Thomas’s Evalina Hospital and even the name of the lead Specialist.  My grandson now has an appointment with the UK’s top specialist team in vascular anomalies where they will be offered the best the UK can offer, should it be necessary.

I applaud Lex and his Team in broadening their Advocacy Support network to include Grandparents. We are known to have more time on our hands and are able to volunteer within the community, giving back something to society. I am still actively working in a Therapeutic role and still devoted to my family, but being a Grandparent is by far, the biggest joy in my life. What could be better? I am able to offer support to anyone in need of advice, or an advocate, to achieve the best outcomes in obtaining appropriate medical services and I am looking forward to working with Lex and his team.