May 27, 2021

Has Volunteering saved my life?

I don’t know but it has made it worth living!


For a while now I have been involving myself with the wonderful work being done by QMUL and at the William Harvey Clinical Research Centre, St Barts, the Diabetes Lay Panel at the Royal London Hospital , the NHS, with my membership of TrialsConnect and the Public and Patient Advisory Group. I have also participated in UCL activities which have been very enjoyable and informative. Doing this, I feel quite useful again which is good. 


I think there may have been times when you may have felt this yourself but there have actually been times when I have exclaimed to myself “how on earth did I get into this!” but then immediately felt a buzz of adrenalin kicking in, giving me a high and the pleasure of achieving something worthwhile. This drove all those thoughts away. 


I love volunteering and am convinced that it has actually benefitted my physical and mental health a great deal over the past ten or eleven years. I was medically retired which knocks the confidence somewhat. It leaves you wondering what on earth you are going to do with the rest of your life. It also makes you wonder about your talents and how they can be adapted to new circumstances. What am I actually capable of doing both physically and intellectually. It becomes very easy to doubt your own abilities.


Well, I was extremely fortunate. My volunteering began when I was enrolled on a Clinical Trial called CANTOS at the William Harvey Clinical Research Centre at the invitation of Dr David Collier. He and the lovely team of Research Nurses and Research Scientists, in fact the whole staff, were so friendly and supportive that they helped rebuild my confidence and social skills which in turn led to me volunteering to help on Reception at the William Harvey.


I had taken part in a number of previous Clinical Studies at different locations but I was so impressed with the standard of care given by David and his excellent team that I felt I wanted to do something in return. The whole team made me feel at home and absolutely nothing was too much trouble for them. The cherry on the top was they do a wicked tea and toast when attending for a fasting blood test visit.


We built a friendly relationship and they always took the time to answer all my questions surrounding Clinical Trials and their procedures in general. I am by nature naturally curious and was always asking questions. I think this may be a legacy or remnant of my 25 years as a Solicitors Managing Clerk. Forgive me  – I am now a reformed character and no longer solicit, I promise!  


I overheard that help on Reception was needed and offered my services and I never looked back. My reception duties were especially enjoyable because I was able to greet and have a chat to patients as they attended and this built into many other varied activities including data entry, designing posters and leaflets, discussions on activities with patients and the public including interaction with members of the public informing them of the services available and Clinical Trials in general. I even joined several committees, which is something I never thought I would do. 


At one of the activities I met Jane Batchelor who, amongst many other things, runs Let’s Talk Hearts. She was promoting her free series of  talks for the public about the heart. Jane impressed me so much I asked if there was anything I could do to help her and this led to many other interesting activities where I was able to meet and engage with the public. I also helped her in a small way with the gargantuan task of organising the annual QMUL Science Festivals and numerous other smaller events .


You may have heard of TrialsConnect which is essentially a group of volunteers consisting of patients of the William Harvey Clinical Research Centre who come together when needed and requested to help in various ways utilising their skills and experience. These are too varied and numerous for me to list but one example is the Legal Eagles Group (which speaks for itself).


Patients willing to help the William Harvey go back many years and Paul Bowers-Isaacson is the ideal person to ask for more details as he and Dr David Collier have organised, planned  and run TrialsConnect for many years. I am a relative newcomer to this group and feel privileged and honoured to have been a signatory to the deed formalising the group. You can find our website at www.trialsconnect.org


Amongst other things, TrialsConnect have organised training sessions for patients and also arranged meetings with large international Pharma companies. Their staff got to hear from actual patients and had the opportunity to ask questions etc. I take no personal credit for it because it was a team effort but these meetings were pretty successful and I had positive feedback from the Pharma staff members who visited or passed through the William Harvey whilst I was working on Reception. Two of them even said that they were so taken with what we had to say that they had taken home a video recording to their families to show them what their work actually meant to people. We showed them that all their work dealing with procedures and data had actual real life benefits for real people. Many hundreds and thousands if not millions of us. 


Another interesting TrialsConnect event was a workshop with some of the top brass of the Pharma Company where we gave our views and feedback on a whole range of things. Paul had contacts with the Florida State University London Centre and arranged a feast of Danish Pastries for breakfast and a superb selection of goodies for lunch. I should perhaps mention that we were not lucky enough to wangle a trip to Florida (it was pre-pandemic) but attended their premises just off the Tottenham Court Road. It was very enjoyable nonetheless.


We have also recently helped some of our QMUL medical students online to give them the opportunity to interact with patients and practice their interview skills with a Clinical Trials questionnaire. This past year or so has been difficult for them because they could not meet patients on the hospital wards as normal because of Covid-19. We were able to help them prepare for their work on the Clinical Trials recruitment drive for the Janssen Vaccine at the Bethnal Green Library. These courageous young people were so successful that I did hear that they managed to recruit more than any other single unit in Great Britain if not the World. We should be proud of them all and the QMUL School of Nursing and tutors for what they do in training and helping these fine young people develop.


I have helped promote Clinical Trials,  Let’s Talk Hearts, attended different events within St Barts and QMUL at their open day promoting Clinical Trials and extolling the virtues of the brilliant staff and things they do in the Cardiovascular Department at St Barts and other things which I think may fall under the title of Public Engagement and also a whole range of other things too which I think probably comes under the heading of Involvement or Participation.


Activities such as discussion, planning and other things probably fall under these categories as does helping out in a number of other different ways including attending workshops, timetabling Work Experience Students biannually for their day at the William Harvey CRC during their week-long Work Experience visits and designing an unofficial logo for the Student name tags, supervising/keeping  activities to timetable/acting as interviewee in the large reception area. I must confess I do not take much notice of what category my activities fall under. I am just please to help in any small way I can.

 

I was also introduced to Barts NIHR BRC Patient and Public Advisory Group by Jane Batchelor and am a proud member of this. We recruit new members of the public at various events we attend but this has been somewhat curtailed during the pandemic. Notwithstanding this we have been able to continue the good work during this time which pleases me because PPAG is celebrating its 10th year this year. We owe a vote of thanks to Jane and Vernon Trafford our PPAG Chair for all the hard work they have put in over all these years and Dr David Collier for his support and input throughout. As such I have commented on and given feedback on Clinical Trials and Patient Information Sheets as have other members of our PPAG. Jane organises all our meetings with all the work this entails and has succeeded in keeping this going through the pandemic with newly acquired online skills. She has also kept all the members occupied and active throughout this period of over a year by passing on all the various activities which we can deal with or support online.

It is probably not relevant but I must confess I do not take much notice of what category my activities fall under. I am just pleased to help in any small way I can. What can I say – it feels good and does you good.


In sum, my volunteer work has been one of the best things I have done. I came into it in not the best health but the activity and mental stimulation I got improved me tremendously and I am convinced that if it wasn’t for this my condition would have deteriorated even further over the years. I would thoroughly recommend the volunteer role to everyone— you can do as much or as little as you wish…

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