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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

Johanna Carrie

I joined the PRG as thank you for the care I received from the RUSH team, then at the Western, when I had a bleed in my brain.  Now 15 years of healthy life later, I hope the group will contribute to making communication with patients clear, supportive, and where appropriate, optimistic.

Gwynneth Clay

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.

Stewart Munro

Stewart Munro

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. 

Colin Oliver

I had a cerebral venous sinus thrombosis (CVT) in the late summer of 2007, at the age of 43. I was treated at the Western General in Edinburgh. I made a good recovery and returned to work that autumn.

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

My main qualification for being involved with the PRG is that I suffered a stroke in 2006. Up until then I had enjoyed a very healthy life, and as a result had very little knowledge or experience of the NHS. My eyes were opened by the specialist care I received and the dedication of the staff who provided it. I also now know that the frontline staff I met were only the tip of an army of dedicated Healthcare Professionals pushing the boundaries of medicine. I now feel that any assistance or involvement I can provide is a small price to pay for the gift of the rest of my life.

Pete White

Pete White

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.

Related links

ACCORD Patient and Public Advisory Service

INVOLVE: the NHS National Institute for Health Research national advisory group