On July 5, 2018, over here in the United Kingdom, the National Health Service (NHS) celebrated its 70th year since its set-up by then-Health Secretary Aneurin “Nye” Bevan.
According to the NHS70 website, “For the first time, hospitals, doctors, nurses, pharmacists, opticians, and dentists were brought together under one umbrella to provide services for free at the point of delivery.”
I am eternally grateful to the NHS for keeping me alive, and for the excellent standard of care that I continue to receive. I truly believe that without the NHS, I would not have survived the aggressive onset and progression of disease I experienced between my diagnosis and when my disease activity became stable.
I remain overjoyed that my “skin is cured of scleroderma,” having not been able to stretch my arms in 1997 due to extreme skin tightness.
However, my daily reality is that symptom management is a full-time job. Even the hottest of summer days bring many challenges, including Raynaud’s attacks, due to temperature decreases in the evening, even if it’s a warm evening.
Thankfully, my symptoms are currently stable. I have regular monitoring appointments. These include annual heart and lung tests. I am now living with the damage caused by the disease at its most active period.
Ultimately, I know that I am a lucky scleroderma survivor, despite the disease removing many facets of my life I once enjoyed, and forcing my inner “Bond Girl” to abscond into oblivion.
However, due to my early-ish diagnosis, followed up by the world-class care I have received from the Scleroderma Unit at The Royal Free Hospital, combined with my local NHS provider care, here I am. I’m living the dream as a “scleroderma parrot” — obsessed with the dream of a scleroderma-free world, along with a Raynaud’s-free world.
My experience prompted me to profile patients from around the world, for my Scleroderma Awareness Month 2017 and 2018 campaigns. I have detailed more about my patient experience and journey, on day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.
I am extremely grateful to all the patients who have kindly shared their experiences for awareness purposes, and I owe a huge thanks to the families of patients who, sadly, have died from the disease.
The conclusions showed that for optimum patient care, three hallmarks preside:
- Early diagnosis
- Expert specialist centers
- Access to innovative medicines
Investment in medical research is crucial to improving the day-to-day reality of life with our disease, as well as the long-term outlook for the entire global scleroderma community. Although scleroderma patients are relatively few, 2.5 million worldwide, the small sample of patients included within my global patients profile campaign show that there are many Scleroderma-related conditions that need more attention.
Although these unmet needs are not immediately life-threatening, they cause havoc with the day-to-day quality of each patient’s life. Investment in medical research will most certainly improve the currently “soul-destroying” reality these unmet clinical needs bring.
In 2015, I was honored to become a patient voice for the NHS England advisory group for Specialised Rheumatology. I’ve been totally blown away by the involved medics’ commitment and dedication to improving the service the NHS has to offer in this medical specialty.
I feel particularly honored to have been a patient voice for the NHS England policy for the management of digital ulcers published in July 2015. I am also very honored to be a patient research ambassador for the National Institute of Health Research, the research side to the NHS. Here’s a video about my experience.
Due to the systemic involvement of my diffuse scleroderma, I am known to many of the different medical specialties included within the NHS umbrella.
For optimum practice and care, a medical “dream team” is paramount, with an expert specialist as the clinical lead.
I am truly grateful for my medical ‘”dream team,” made possible and available to me, by the world-class healthcare system, the NHS.
Thank you, NHS. Happy 70th birthday.
Living the dream, scleroderma style.
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