Patient Reference Group

In May 2016 I found myself in an altered reality.  In the space of a couple of hours I went from rock climbing to lying in hospital diagnosed with a haemorrhagic stroke.  I also became a patient – the other side of the coin from my job which involves the project management of the development of treatments for various medical conditions.

The healthcare professionals I’ve come into contact with have been great.  The stroke team at Edinburgh Royal Infirmary, the researchers in the RUSH group and the rehabilitation team at Astley Ainslie have helped me on my ongoing journey back to much of my former life.  I am constantly told it is still early days but I have been lucky that my progress has been very positive; I continue to work to regain the good things in life whilst working equally hard to reduce those aspects of my lifestyle which contribute to stroke risk.

I am delighted to have the opportunity to put something back into the much needed work of the RUSH team.

I feel I am  in the fortunate position of having survived two ICH incidents . The first occurred  3  years ago , out of the blue when I was skiing in Austria . I had the second one at home at the end of 2022. I have made a good recovery from both and hopefully have taken the necessary personal action to help avoid further events.  My work experience has been as a counsellor both in the NHS and with the bereavement counselling charity CRUSE. Prior to retiring I was the coordinator for a counselling project working with both statutary and voluntary sectors. Following  my two ICH events I have personally experienced the mental health issues caused such as fear and anxiety and have had to counsel myself which is perhaps not the recommended course of action ! 

Having lived in several countries due my husbands work I enjoy travelling . I try to keep as fit and healthy as I can ,with limited exercise at the moment walking my little dog Maggie.  My main current interest, art and painting, is very much part of my daily routine, which I find very therapeutic.  I am really looking forward to being part of the PRG and finding out more about the amazing work being done by the team in Edinburgh and hope I have something positive to contribute.

I had a stroke, caused by a haemorrhage, in 1998 at the age of 47. This left me with very little use of my left arm and leg. I have since then been able to live a fairly normal, active life, despite the obvious physical restrictions.  Fortunately, because I am right handed, I have been able to continue with my artwork/ painting.  However, this year 2023, almost exactly 25 years later, I suffered another stroke, this time caused by a blood clot.  Thanks to the excellent medical intervention I quickly returned to “ my normal “and am now embarked on this medical process to try to prevent further stroke incident .

I have been very fortunate and hope any experiences will be of future benefit to the medical understanding of this problem .

In Glasgow in March 2019 at the age of 65 I experienced a major haemorrhagic stroke whilst at a board meeting of the small Scottish charity of which I was both founder and CEO.  My journey back to my home in Edinburgh took over four months via the Royal Infirmaries of Glasgow & Edinburgh then Astley Ainslie Hospital. I was made redundant when the charity closed as a consequence of my changed circumstances. I was encouraged to see this as both a gift of liberation and an opportunity to undertake a journey of discovery in my new identity.  I exercise my transformed physical capabilities at the gym in the Thistle Foundation and get out and about on my recumbent e-trike.

At the end of 2022 I stepped down from membership of the board and advisory roles connected with my work within the Scottish justice system.  I am currently working on a memoir about my work within justice and my experience of life through and after my stroke.