Patient Reference Group
The RUSH Patient Reference Group helps the team plan & conduct research.
The researchers in RUSH firmly believe in patient, carer and public involvement (PCPI) when designing and conducting our research.
We follow guidance from our sponsor, the Academic and Clinical Central Office for Research and Development (ACCORD), and the NHS INVOLVE national advisory group.
Our patient reference group (PRG) meets at least once every year in person. Members comment on study priorities, design and materials by email in the interim. The current members of the RUSH PRG have kindly provided the own biographies below.
The RUSH Patient Reference Group
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.
At 60 years old, completely without warning and, until the event, very fit and healthy, I suffered Intra Cerebral haemorrhage in January 2017. Fortunately, my recovery aided by excellent care has been rapid. The ICH now seems a distant memory that, given the statistical outcomes for the condition is indeed very fortunate.
Joining the RUSH PRG has been therapeutic and a fascinating experience. I have also taken part in the research process as underlying causes for the ICH could involve brain structural weaknesses or other conditions. This involved having a PET (positron emission tomograph) scan, to determine whether any of these conditions were a factor. Happily, the results indicate that not only do I have a brain, but it is also looking healthy. The reasons for the ICH remain unclear. Hopefully having the privilege of working with the PRG will keep me informed of the latest advances in our understanding of the condition.
I had another CVT in early 2009, with associated haemorrhage. My recovery this time took much longer and my personal experience was vastly more profound. Amongst the changes it engendered, it took me from my previous career working in media, to a new role as Head of Information in Scotland, for the charity the Stroke Association.
I sit on the RUSH Patient Reference Group in a personal capacity and am delighted to do so.
John White OBE
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 but with help I was enabled to see this as both a gift of liberation and an opportunity to set about establishing my new identity and exercising my transformed capabilities. I am currently Vice-Chair of Voluntary Health Scotland, trustee of Aid & Abet SCIO and a member of the Independent Prison Monitoring Advisory Group for HM Chief Inspector of Prisons, Scotland. I have donated my three bicycles to good causes, disposed of my DIY ‘stealth’ camper van but still have, and now can use my digital SLR.