Patient and Public Involvement (PPI) group
This group is made up of members of the community who have volunteered their services to assist us in our research.
Within this group we have two themes consisting of:
- Hardeep Aujla
- Gary Bannister
- Robin Bowler
- Paul Haywood
- Lathishia Joel-David
- Jagruti Lalseta
- Anthony Locke
- Sue Page
- Chandra Parmar
- Rajesh Patel
- Peter Read
- Mustafa Zakkar
PPI member stories
In 2016 I suffered a heart attack resulting in me having 3 stents. I decided to change my diet by eating healthier and walking everyday. One year later I had lost 5 stone. I read about "take heart Leicester" the adult and cardiac support group and as I like talking to people to try and understand what they went through as well as talking about my own experience, I decided to become a member. I also joined an exercise group called "heart smart" where I go every Thursday. Upon hearing about the "PPI Group" I realised they do amazing work/research which can only benefit future patients, so I decided to join this group and hopefully I can help in some way.
In the last 9 years I have had major heart surgery to replace the mitral valve twice. This is the reason I became a UHL Volunteer. I visit the cardiac ward at Glenfield weekly to speak to patients about their own/my own experience in relation to cardiac surgery. I am also a member of Take Heart Leicester, the Adult Cardiac Patient Support Group. For these reasons I got involved with the PPI group. It is also a way of me giving something back.
My father had plastic valves put into his heart 40 years ago and he lived until he was 88. I heard Professor Murphy talk at our Rotary Club and heart surgery has advanced significantly in that time but the unexpected still happens and if I can help in any way to reduce this then I would like to.
I am a member of Take Heart Leicester (THL), the Adult Cardiac Charity covering Leicester hospitals. THL runs an Adult cardiac support Group with many events to meet the needs of patients, ex-patients and carers. This includes social events from a walking group to lunches, dinners, boat trips and a monthly support group coffee morning. Money raised through donations is used to provide much needed equipment for cardiac patients. I became aware of THL following my own heart attack in 2014 and have been a hospital visitor on the cardiac wards since 2016. Before retirement I worked for the Ambulance service and still enjoy meeting and talking with patients. I have just become a cardiac surgery research volunteer, in which role I hope to visit in-patients who have volunteered for one of the research programmes to see how they are progressing and to answer any non- medical queries they may have.
Cardiac surgery research volunteer role
One of our main projects is how to get members of the public involved in research. We see the role of a volunteer as being similar to the existing patient volunteer but more "research" orientated. After a period of negotiation with both the University of Leicester and University Hospitals of Leicester, we succeeded in finding a member of the public who already had patient volunteer experience. Following a very successful 6 month pilot phase we were given approval to make this role permanent within Cardiac Surgery Research. It has also been suggested that in the future this could be extended out across the whole UHL Trust.
The role involves:
- Talking to and supporting research participants - some patients do not feel at ease talking to doctors or the research team but would talk to a volunteer
- Helping to explain clinical terminology in lay terms
- Reporting any issues or concerns to the research team
- Offering support to participants
- Help to present a positive image of research participation.
My name is Robin Bowler and I have recently retired having had a long and enjoyable career as a Civil Engineer working largely in hydraulics and public health (centred on the water industry). With a technical and scientific background I have always been interested in research and development and its practicable application.
Thus there is albeit a very tenuous link between the heart and blood flow and my background in hydraulics with its design of pipe systems, pumps and valves.
Why Cardiac surgery?
Like many I have an affinity with events that have had a major impact. My father, soon after he retired suffered circulatory problems and sadly passed away too early in life. I suspect that over the 30 intervening years, and thanks to research, outcomes are now improved; but I’m sure there is a long way still to go.
Whilst I have no medical background I hope to be able to provide help and support to the group in whatever limited guise that may take, such as volunteering to help in studies etc.
Alan Birchenall, MBE
We are honoured that Alan Birchenall, MBE, Ambassador for Leicester City Football Club has kindly agreed to be the Patron of the Leicester Cardiac Surgery Patient & Public Involvement Group. We hosted a British Heart Foundation Public Engagement Event on the 26 April 2018 and Mr Birchenall came along to speak about why it is important for him to lend his support to our group and how he is looking forward to being involved in our public events to promote heart surgery research.
Medical Student stories
I initially joined the PPI group to get involved in clinical cardiac research, making a difference to both the understanding of the treatment of cardiac conditions but also how best to support people who live with these diseases. Whilst keen to pursue this, I experienced something unexpected. In getting to meet the non-clinical members of the public who are devoted to furthering this field and offer their most sincere and deepest support, my appreciation for this research and what it means to the public has expanded and deepened. I have also been able to meet the people undertaking this research and witness their passion as they talk about their research and it's value and importance in improving people's lives. It has given me an insight into the passionate, dedicated and devoted people over time that have allowed each and every advancement in this field that allow the services at our own specialist heart hospital to save people's lives each day. At the core of every medical advancement are the researchers who first theorised, discovered, tested and retested it so it could be used in our clinical practice today. I hope to contribute to research through my involvement in PPI but will appreciate the significance of it all the more because of my experiences so far.