Giving voice to the 'lived experience' - Phil's story of stroke survivorship

How Phil Collis puts into practice ideas for stroke survivors 

Suffering a stroke at the age of 17 was a devastating event in my life, knowing that I would probably never again be able to kick a rugby ball from the half way line or have to make the choice of playing for Ireland or England?

I had more immediate priorities, like learning to talk and walk again, to ‘get a life’!  My lifetime of rehabilitation and recovery continues daily. Strokes only happen to ‘old’ people and health services were geared up to manage geriatrics not the young or people of working age and I wanted to change it, but how?

I managed to get into employment and worked for an American management consultancy for several years and a couple of other companies. Then a dream opportunity came my way, I started working for a small charity in the Eastend of London.

The charity provided community support to people affected by stroke. It operated on a voluntary basis supporting around 30 people per week.

I saw the project as a fantastic opportunity to put into practice and develop my ideas, share ideas and plans with the involvement of fellow stroke survivors, families, carers, community and health professionals.  I am proud to state that 18 years on the project now supports nearly 400 people each month 7 days a week with full time employees and numerous volunteers. The project provides many services and opportunities for people affected by stroke to get involved in e.g. exercise, communication, return to work, research, self-help etc.

During the success of the project I joined the All Party Parliamentary Working Group Looking at Stroke provision in England.  I was invited onto the Steering Group that developed the 2007-2017 National Stroke Strategy for NHS England.

It was at this point that I joined (INVOLVE) a patient involvement organisation. I wanted to underpin my knowledge and experience and found EPAP a useful tool to do this. I have become more involved in health research working with many organisations including NIHR, NHS England, Stroke Association and British Heart Foundation.

I have found a role in research, as a Public, Patient and Carer Involvement lead and I am passionate about giving voice to ‘lived experience’ sharing and working with health professionals to improve health for everyone.  I am currently involved with Birmingham University in 2 projects – ‘Medication non-adherence for people with hypertension’ and ‘TIA Follow-up’.  I am also involved in the ICONS 2 and 3 research (continence management) and co-applicant on the MIDAS research project (management intervention of dehydration in acute stroke) with University of Central Lancashire.

I was once asked by an ex-GP who attended one of the stroke groups if ‘I felt I was lucky or unlucky to have had a stroke at an early age’…. I would most definitely say ‘very lucky’! ‘giving up is never an option’.