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A Patient Research Ambassador (PRA) is someone who promotes health research from their point of view. They could be a patient, service user, carer or ordinary member of the public who is enthusiastic about health research and is willing to communicate that to patients, the public and healthcare professionals. They also help research and healthcare staff understand more about the experiences of those who take part in research.
Our PRAs get involved in a variety of activities to help raise the profile of public engagement and the research department as a whole. Below are some examples of the activities that they have been involved in:
My name is David Smith and I am retired, although I do have a couple of voluntary roles that keep me busy and involved. I had a varied career from being an engineering officer in the Royal Navy, working in procurement for Shell International to working for The United Nations. I have been married to Gill for 45 years and we have two grown up sons and three grandchildren.
I have been under the care of Papworth hospital since 2010 after I had emergency surgery to repair a dissected aorta. I have another aneurysm which is being monitored and I take part in a research project looking at the quality of life of patients such as me after having had aortic surgery. It was through this that I became aware of The PRA role
Following my surgery I was, and remain, grateful to be alive. My survival was of course due to the great skill and care that I received from all the medical, nursing and support staff at the time. However I realise that without the research that underpinned the advances in medical science and practice my chances of survival would have been minimal. The PRA role enables me to give something back in a way that might help others in the future. This is important to me, as others have helped me in the past. In addition to this I feel that as a layman and a patient I can bring a different perspective.
Without research our ability to learn and advance is severely limited. I am old enough to remember the medical and surgical treatment that was available in the late 50s/early 60s. The advances since then have been nothing short of wonderful. Things that would have been a death sentence then are now treatable and year on year great advances have been made. None of this would have been possible without research
In the short time that I have been a PRA I have :-
Not only is participation in research vital for the continued advance of medical science, it is also gives a great sense of satisfaction that you are making a contribution that might help others and if you are unfortunate enough to suffer from a medical condition it might even help you.
It is a fascinating way to participate in what is for most of us an entirely new area, different what most of us have experienced in our working lives. You meet lots of new and interesting people and it is a supportive and caring environment.
My name is Ron Flewett. Most of my working life I have been involved in sales for over 30 years, in selling and designing Air Conditioning equipment for offices hospitals etc,
I am married to Maxine and between us we have 4 children and one Grandson with a further two expected.
I have been a patient at Papworth hospital since 2013, when I was referred due to scarring of the lungs. Since diagnosis of IPF on April 2014, I have been involved in several clinical trials, which lead me to hearing about the PRA role.
Since diagnosis I was extremely lucky to be prescribed the first medication (just Approved) called Pirfenidone. It’s not a cure but results showed it slows the scarring of the lungs.
I am Chair of the IPF Papworth support group and was lucky enough to meet a patient who was involved in the original trials of the drug and feel if it had not been for him and people like him I would not be here today.
So, I have made it my goal, and feel determined to follow his example and help research in any way possible, if not for me for others in the future.
My message is simple, if there is no research there will never be a cure for these awful diseases.
Research gives hope to others that they may have a future.
Getting involved in research gives you a sense of purpose, that you are doing something to combat these illnesses as well as a great deal of satisfaction that you are helping others in the future.
You meet some very interesting, kind and caring people, and although it is something I have no experience in, it gives you a lot to learn about how it changes people’s lives.
My name is David Burling and I am retired. My career started in electronic manufacturing at Cambridge Medical Instruments testing Cardiographs and Defibrillators. After a couple of years I moved to product development at Acorn Computers at the time of the first BBC Microcomputer. After 13 years I left and worked as a consultant Software Test Engineer for 3 years around East Anglia. I then joined Smallworld. Shortly after joining Smallworld they were taken over by General Electric and a few years later I because Quality Manager. In this position I was responsible for process quality across the global Smallworld business. I was also part of a GE Quality Audit team that audited GE sites around the world. At the age of 55 I took a change in direction and volunteered at Addenbrookes for 6 months facilitating Patient Surveys. I then joined Arthur Rank Hospice in a permanent role as Quality Manager where I setup a new Quality System as they went independent of the NHS.
After retiring I wanted to volunteer in a role that would be interesting, in an area where I could learn and in a role requiring some thinking not just repeating the same tasks. I contacted Papworth when they were moving to Cambridge to enquire about volunteering opportunities and noticed the role of Patient Research Ambassador.
All through my career I’ve been involved in design and development where I’ve seen the excitement of new product launches and the benefits they bring to the customer. In the Hospice I had to monitor all new NICE Guidelines and circulate relevant ones, this gave me oversight of many medical developments. It seems almost every month we read of medical advances where new operations and procedures are now being successfully completed, or drugs developed for an individual patient to cure an illness or improve their quality of life. All these advances are helping patients live longer and / or providing a better standard of living.
As part of my role at Papworth I have been involved with :
Everyone I’ve met has been willing to patiently answer any of my questions, no previous medical knowledge has been required. It has been good to learn about new things and be part of a great organisation. There is no pressure to do any task, people know you are a volunteer and hence appreciate your giving up your time.
We keep reading that in retirement we need to keep our brains active, this is a great way to do it. At the same time we are making a small contribution to the research teams that are improving the patient experience.
My name is Marijcke Veltman-Grisenthwaite. I have recently decided to step back from full time working and am about to start studying for a LLM in Medical Law and Ethics. I have a PhD in Psychology starting my career as a Psychology lecturer in Leicester and subsequently becoming a researcher in the Department of Psychiatry here at the University of Cambridge. I ended up primarily as a research manager, managing support teams to assist clinicians in delivering their mental health, clinical medicine and subsequently rare diseases studies. In this work we always had to ensure that the patient and carer’s voices guided and were included in the work supported.
The last few years I have worked for the University of Cambridge’s Development and Alumni Relations team, specifically working on policies and governance in relation to philanthropic gifts made to the University.
Having decided to stop working full time, I wanted to make sure I did something worthwhile in my spare time. Volunteering was the natural choice, especially in a field I consider so hugely important and can, hopefully, make a meaningful contribution to. This made me look at the options available on the BioMedical Campus. The role of Patient Research Ambassador at Papworth leapt out at me as something I would find very rewarding and is so important to the meaningful delivery of clinical research.
The NHS is such a unique and invaluable resource for research. Apart from being the most wonderful and egalitarian healthcare system, it provides incredible opportunities for research. Being able to reach out to, specific groups, as well as, potentially, large numbers of patients via their clinicians to ensure studies deliver results that can actually improve service delivery is key to this. The NHS is uniquely placed to help studies succeed in their ambitions and ultimately improve patient care.
In my working-life I was directly involved in ensuring academic clinicians could deliver their studies on time and on target through managing multi-disciplinary teams able to provide support as and when required. Central to this work was ensuring the patient’s understanding of the importance, outcomes and potential implications of the research for health and service delivery were communicated. We ensured we worked closely with NIHR initiatives such as INVOLVE, as well as disease specific patient groups.
If asked, try to take part if you feel able. It is so important to all.
My name is Joanne Mahon. I am a designer and manufacturer in the leather goods industry and have spent my career in the fashion sector, which I have thoroughly enjoyed. Working together with my husband, our London store became a popular destination for celebrities and stylists and many of our designs have been seen in magazines, on stage, screen and film and sold in up-market stores across the globe. However I have a particular interest in my dogs and began showing them as a hobby, which eventually led to creating accessories for them and for other people’s dogs. This in turn progressed to starting my own business in 2003, concentrating on high end pet accessories. My company now sells around the world and still attracts a celebrity clientele. My business still gives me a lot of pleasure and although I am past retirement age I have no intention of giving up just yet!
For many years I travelled extensively to the U.S.A. and to various European destinations on business. I had always been a healthy person but on many occasions I would come home from a foreign destination with a chest infection, which I could always shake off until I was hit by a very bad virus. I was bed ridden for nearly 4 weeks and when I could eventually get out of bed I felt absolutely exhausted and lifeless. I just couldn’t seem to recover and was eventually diagnosed with Sarcoidosis, an auto-immune condition and granulatomous disease which can spread to any organ or prove fatal. I was told that there is no cure, yet about 75% of patients go into spontaneous remission. Of course, I have always hoped to be in that percentile but more than 10 years later, clearly, I am not and have had to learn to live with my disease and adapt to very high levels of persistent chronic fatigue which is just one of the symptoms of this disease. Every single day, my life is regulated by my disease – I can’t manage to participate in normal activities and despite conventional medicine and trying some alternative therapies, my condition has not improved, although it is now stable. I am reliant on steroids that suppress the body’s immune responses and keep the disease in check. It is now more than 10 years since my initial diagnosis yet so little is known about this disease, how to recognise it, what causes it or how to treat it, other than with steroids, leaving patients vulnerable to other germs or viruses that abound. Research is vital to answer all these questions and improve the lives of patients.
However, I am an eternal optimist and not only want to be free of my disease but to be able to enjoy the rest of my life, no matter how long or how short that may be. I have lost family and friends to incurable diseases, and have always had an interest in research and new medical developments because they are the key to solving all those unanswered medical questions.
I decided that I would like to make a contribution to the scant knowledge that exists about Sarcoidosis so that maybe it will help me and others. I made my Papworth consultant aware of my eagerness to be a participant rather than a bystander. I fully anticipate that, one day, my disease and many others, will have adequate treatment and maybe even a cure however, without patients stepping forward to participate in studies or drug trials there can be little knowledge gleaned into this or other diseases.
In 2018 my Papworth consultant advised me that there was to be a double blind drug trial undertaken into Chronic Fatigue in Sarcoidosis. I was keen to be involved, whether I was given the real medication or the placebo, and was taken very good care of by the clinician and the staff, who couldn’t have been any kinder or more understanding of my condition. There were just 22 patients involved in this trial and I realized almost immediately that I was lucky enough to have been given
the actual medication as it made me feel quite a lot better. Subsequent to the drug trial I have been able to obtain the medication on prescription, which has given me a new lease of life.
I was subsequently contacted by the National Institute of Health Research to enquire if I would be willing to provide an interview for International Clinical Trials Day based on my experience with the drug trial. I was happy to provide an interview and this was conducted at my home, so there was no inconvenience for me having to travel. The interview was later picked up by the regional press, for whom I provided another interview over the phone. Little did I realize that these interviews were to be my initiation into eventually becoming a Patient Health Ambassador for Papworth.
Last year, my consultant advised that he was involved in setting up a heart study in Sarcoid patients and I asked if I was eligible and, if so, if I could participate. The study involved just one day at Papworth where I underwent several diagnostic tests. They revealed that I also have / or have had this disease in my heart, which was previously undiagnosed despite having had all the usual tests provided to Sarcoid patients. Were it not for this study, the level of heart involvement in Sarcoid patients would have remained unknown, however, the study found that more than 40% of patients have the disease in their heart and although it is usually remains asymptomatic patients may die a sudden death if left undiagnosed and untreated. Without the results of this study it is likely that other patients wouldn’t be routinely checked for heart involvement or be treated appropriately, which they now are thanks to this study.
Knowledge makes all kinds of miracles possibly in the lives of people who previously would have been left untreated or had no chance of improvement or survival. Research is the key to knowledge and by making a contribution in any way possible many patients’ lives will benefit.
I don’t usually volunteer for anything, so in some respects I stepped out of my comfort zone to become a participant. My story is the reason why I chose to become involved as a Patient Health Ambassador for the Royal Papworth Hospital. It has been an enriching experience and I hope I can help to contribute to the work at Papworth for a long time to come and that my story might encourage many others people to get involved in research in whatever way they can.
My name is Graham Hill and I am now retired. I spent most of my working life in the Civil Service, including more than 25 years in Export Credits Guarantee Department, a small Department which provided insurance cover and guaranteed finance for UK exports, from consumer goods to major projects like power stations and steel works, including the UK share of export sales of international collaborative aircraft projects such as Airbus. I held various posts in ECGD, including financial management, as an underwriter, and representing ECGD at twice-yearly international conferences of other credit insurance agencies. I was also responsible for assessing economic and political risks in sub-Saharan African countries and recommending appropriate levels of ECGD risk exposure, which involved overseas visits for discussions with local Ministers and Central Bank officials, business leaders and our own Ambassadors/High Commissioners and their staff.
I subsequently transferred to the Tariff & Trade Statistics division of HM Customs & Excise, where I spent 10 years managing the compilation of monthly UK trade statistics, and Tariff classification of goods, and therefore the amount of excise and VAT due. This included regular attendance at EU committee meetings in Brussels for tariff classification policy matters, and in Luxembourg and elsewhere on trade statistics issues.
I was diagnosed with Sleep Apnoea over 20 years ago and have been on CPAP treatment ever since. I am quite certain that in view of the level of daytime sleepiness I was experiencing at the time I was diagnosed, coupled with a family history of heart disease, I may well not have been still around without my CPAP treatment.
I was recruited as a PPI patient representative to the technical steering committee of a clinical trial started by Papworth in 2017. I have been involved with other potential trials over the past year or so, including as co-applicant on a request for funding, recently approved, for a trial which will be starting once Covid subsides.
I think that question can best be demonstrated by the rapid development of the Oxford/AstroZeneca vaccine, based on vital research into how viruses develop and spread. But progress across the whole spectrum of healthcare is driven by research, so it is vital for all of us.
Since I retired at the end of 1999 I have been at various times Chairman of Governors at two local schools, and was appointed by my local authority for a few months to assist the governing body of another school in special measures. I spent some time as a Trustee and Branch Secretary of a local branch of the RSPCA. Following my diagnosis with sleep apnoea, I joined the Sleep Apnoea Trust Association (SATA), a charity which supports sleep apnoea patients and their families, and have been a member of the SATA Committee since 2011. With another SATA committee member I now participate in an embryonic group of European sleep apnoea patient organisations.
I would say that it offers an interesting and rewarding opportunity to represent the patient perspective in clinical research, and to participate in vital work which will lead to improvements in how patients are treated.