After caring for her husband, diagnosed with vascular dementia, a Portsmouth woman has become a Patient Research Ambassador at her local community Trust to promote the importance of patient focused healthcare research in the NHS.
There are many ways that patients and the public can support and get involved in research. Of course participating in research trials is a key contribution, but equally important patient roles are emerging and gaining momentum.
Patients and carers are fundamental research partners, collaborating with researchers to develop healthcare research that meets the needs of the public and works in a real life setting. Their experience of living with particular conditions and the challenges faced on a day to day basis are invaluable to the success of research.
One Portsmouth woman, Mary Ramsay, has become a Patient Research Ambassador at her local community Trust to share her experience caring for her husband, and generate more public interest in research in her area.
Mary met Roger, a retired airline pilot, in October 2010. It wasn’t long before they realised how special their relationship was and they were married in June 2012. Having travelled extensively as a pilot, Roger flew with Mary to The Gambia the following year to share with her his favourite destination. This was when the first signs of illness became clear.
Mary said: “Roger woke me during the night to tell me that he couldn’t remember how to shower. At the time I felt annoyed that he had woken me just to tell me that, but later his body began twitching violently and I knew that something was wrong.
“We received the diagnosis of vascular dementia in March 2014. I made up my mind from the onset of the diagnosis that our life was going to be normal; dementia would live with us not rule our lives.”
Mary worked tirelessly to overcome the obstacles that crept into their lives as Roger’s caring needs increased, but within a short space of time Roger was unable to live a normal life and relied entirely on Mary for support.
As a carer to her husband, Mary realised that a number of campaigns highlighting the illness didn’t show the real picture. She said: “I wanted to be able to have an involvement in getting the “raw” message out into the public domain so it could be fought and research was top on the agenda.”
During this time Mary consented to take part as a healthy volunteer in a dementia study funded by Alzheimer’s Research UK and sponsored by the University of Southampton. The study involved a straightforward home visit with Mary by the research team, which comprised of a short memory and blood test. This was Mary’s first venture into health research, but her journey was only just beginning.
Roger’s condition continued to deteriorate and within the space of a few months he had passed away. Mary became even more passionate about supporting and generating interest in research. Participating in the research trial had given her a sense of pride, a sense that she was contributing to a future without dementia, but Mary was determined to do more. Becoming a Patient Research Ambassador at her local NHS organisation, Solent NHS Trust, has enabled Mary to continue her campaign for healthcare research.
She said: ‘I remember the desperation I felt when we received Roger’s diagnosis. I want to encourage people to understand that this illness does not discriminate and unless we find a cure it will continue to destroy future generations. Research into the cause, diagnosis and treatment can and is happening but it needs ongoing support and resources.’
David Higenbottam, of the National Institute for Health Research (NIHR), said: ‘It’s fantastic that patients and carers like Mary take part in research and use their experience to encourage others to do the same. Their involvement will not only help future generations, it can also benefit many people living with this condition right now. I would encourage anyone that is interested in research opportunities to speak with their healthcare professionals or visit the Join Dementia Research website.’
If you are not yet registered with Join Dementia Research, why not sign up today?