Date: 07 March 2018
In 1997 Nicola Whitehill, was a young twenty-something, ‘climbing the corporate ladder’ of a pharmaceutical company and dreaming of becoming a Barrister. After developing swollen fingers with tight, shiny skin and a variety of symptoms, she was diagnosed with the rare autoimmune disease, scleroderma and Raynaud's, given a 15 month prognosis and told there was nothing more to be done, other than take chemotherapy (and, that she could forget becoming a Barrister). Not one to accept ‘its over’ for an answer, 12 months later, she discovered the Scleroderma Unit within the North Thames area Royal Free Hospital. Fast forward another 17 years, including 4 spent studying and passing exams to become a Barrister, and many clinical trials later, Nicola had confirmed that her skin is cured of Scleroderma.
Nicola has been involved in more clinical trials than most. She writes in her Rare Disease Day 2018, Article: “Over the course of the last few decades, I have taken part in several clinical research trials. I am not the most willing of participants for taking any kind of medication, especially not unlicensed therapies. However, for medical research clinical trial purposes, all “mystery” medications have undergone rigorous testing before reaching the clinical trial stage of testing on humans.”
“However, this does not eliminate every or any potential risk of taking a medication. For a new treatment to reach the marketplace, strict criteria must be met for it to become licensed for the indications it represents. This is where the design of a clinical trial’s details is imperative.”
“I have been involved with many clinical trial design setups with chemical substances that only have a numeral designation rather than a name, as they have not even been named yet. In relation to the clinical trial design for scleroderma patients: ALL clinical trial assessment criteria now include digital ulcer involvement, further to my insistence!”
Her enthusiasm as a research participant, borne by a desire to rid her body of the excruciating symptoms of her disease including (and no way limited to) the musculoskeletal 'tin man' mobility issues, has extended beyond participation, and into advocation. Nicola writes extensively about all aspects of Scleroderma and Raynaud's symptoms, management, and research on her blog: raynaudsscleroderma.blogspot.co.uk and has a guest column on the website sclerodermanews.com. In 2013 she became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology; In 2013, a patient expert adviser with the European Medicines Agency; and in 2018 has joined the National Institute for Health Research (NIHR), Patient Research Ambassador Initiative (PRAI).
A Patient Research Ambassador is someone who promotes health research from a patient point of view within NHS Trusts, and on behalf of the NIHR. They could be a patient, service user, carer or any person who is enthusiastic about health research and is willing to communicate that to other patients, the public, as well as other healthcare professionals. Many patients, carers, and members of the public are already doing excellent work in the healthcare research community and may not recognise themselves as unofficial ‘Patient Research Ambassadors’. Nicola has blogged about the importance of an early diagnosis; the role of medical research; the importance of expert specialist centres; and about her personal experiences of taking part in research trials. Nicola was already promoting interests of patients and research, officially joining the programme was a natural next step.
She says “I am delighted to have become a patient research ambassador for the dermatology and musculoskeletal departments at the Royal Free Hospital. Many clinical trials are currently taking place at the Scleroderma Unit at Royal Free Hospital. All of the trials I have participated in were at the unit.”
“Having been a diffuse scleroderma, rare disease patient for 21 years, I believe research provides immense hope. Hope that the desperately needed understanding of scleroderma’s cause and cure will be discovered. #SclerodermaFreeWorld #RaynaudsFreeWorld".
If you would like to speak to someone in your area about how to become a Patient Research Ambassador you can view a list of local contact details.
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