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.

How did you first hear about Patient Research Ambassadors?

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

What made you decide to become a Patient Research Ambassador?

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.

Why do you think NHS research is important?

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

What activities have you been involved with?

In the short time that I have been a PRA  I have :-

• Participated in a debrief of patients taking part in a surgical trial on Atrial Fibrillation.
• Reviewed a research project proposal from a patient perspective
• Given a presentation to members of the public in Cambridge on the PRA role and the importance of research.
• Participated in a regional meeting of PRAs
• Sat on the Trial Steering Committee (TSC) for a cardiac surgery study, attended meetings and reviewed documents

What would you say to others who are considering getting involved in research?

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.

How did you first hear about Patient Research Ambassadors?

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.

What made you decide to become a Patient Research Ambassador?

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.

Why do you think NHS research is important?

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.

What activities have you been involved with?

• I am the chair of Papworth IPF support group, and members talk to me about clinical trials and research I am aware of
• I am on the Patient advisory board for Boehringer Ingelheim, for all ILD conditions, this gives me the opportunity to not only hear about research that is going on, but also gives me the opportunity raising awareness of IPF and other ILD diseases
• I am a member of the EU-IPFF which allows me to find out what is happening in other countries, regarding standard of care and research
• I am a trustee of the Pulmonary Fibrosis Trust where we promote research, and we help patients with mobility issues

What would you say to others who are considering getting involved in research?

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.

How did you first hear about Patient Research Ambassadors?

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.

Why do you think NHS research is important?

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.

What activities have you been involved with?

As part of my role at Papworth I have been involved with :

• Reviewing multiple study proposals including work on discovering whether treating patients newly diagnosed with sleep apnoea reduces the complications of surgery and decreases their length of stay in hospital and a patient Information sheet for a drug used to prevent single and double lung transplantation being rejected.
• Reviewing the results of the Clinical Research Network Patient Experience survey, and been involved in discussion on how to improve the patient experience.
• Attended the Papworth Research Symposium where many research projects from across the campus were presented.
• Performed a review of PPI websites and fed back to the team to help develop the Papworth webpages.
• Attend quarterly meetings to discuss the focus of PPI at Papworth and upcoming patient events.
• Most recently I have been involved in a focus group to discuss the logistics of implementing a Papworth sponsored study and have subsequently agree to be a lay member of their steering group.

What would you say to others who are considering getting involved in research?

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 a LLM (Edinburgh) in Medical Law & Ethics and a PhD (Birmingham) in Psychology. I started my career as a Psychology lecturer and subsequently became a post doctoral researcher in the Department of Psychiatry at the University of Cambridge.  I ended up primarily as a research manager and operational director, managing support teams to assist clinicians in delivering their mental health, clinical medicine and 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. 

After a stint at the University of Cambridge’s Development and Alumni Relations team, working on policies and governance, I stepped back from paid work and now spend my time working as a volunteer.  I sit on one of the NHS Health Research Authority’s Research Ethics Committees, am part of the CUH Patient & Public Involvement Panel, the Patient Advisory Group of the planned Cambridge Cancer Research Hospital, and sit on the Executive Committee of the CRUK Cambridge Centre. 

How did you first hear about Patient Research Ambassadors?

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.

Why do you think NHS research is important?

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.

What activities have you been involved with?

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. 

What would you say to others who are considering getting involved in research?

If asked, try to take part if you feel able.  It is so important to all.

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.

How did you first hear about Patient Research Ambassadors?

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.

Why do you think NHS research is important?

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.

What activities have you been involved with?

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.

What would you say to others who are considering getting involved in research?

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.

My name is Robert Ellis. I am married and live in Stapleford, a few miles south of the Cambridge Biomedical Campus. In 2019 I retired, having spent the majority of my working life inside the NHS. I worked as a psychiatric nurse in an acute assessment unit for four years before training as a general nurse at the Bristol Royal Infirmary. After qualifying I gained experience in a number of London Hospitals, including Atkinson Morley hospital, a centre for specialist neurosciences. This experience led me to Addenbrookes hospital to undertake specialist neuro-nursing training. Gaining further experience at staff and charge-nurse level over a four-year period, I was asked to project manage a number of trust-wide initiatives, including computerised information systems. The Trust supported me to undertake a Masters degree in Health Care and, after gaining formal qualifications in project management, I joined the Trust Improvement team. For the final five years of my time at CUH I supported clinical, and non-clinical, services, in their efforts to improve their productivity. This included working with local GPs in the local community.

Following retirement, I have taken on a number of volunteer roles, including visiting local primary schools to assist in the development of children’s reading skills.

How did you first hear about Patient Research Ambassadors?

The Royal Papworth hospital moved to the Cambridge campus during the final years that I worked at CUH, and this, allied to the fact that I received treatment for chronic AF from one of Papworth’s consultants, led to my reading a lot of Papworth-related material. It was this that eventually highlighted the PRA role for me and, following retirement, I decided to pursue the possibility of becoming involved.

What made you decide to become a Patient Research Ambassador?

Following retirement, like many others, I found it difficult to “switch off” my interest in health-care related issues. The PRA role appeared to offer the chance to put the knowledge and skills acquired during my working life to good use. The thought that I might continue to ‘make a difference’ was certainly attractive. (At a more basic level, living close to the campus facilitated attendance at meetings and presentations)!

Why do you think NHS research is important?

Throughout my clinical career I was constantly challenged to ensure that my practice was research based. Could I justify what I was doing? That ‘mantra’ followed me all through my service improvement days. What was the ‘best practice’ in this scenario? The importance of sound, valid research underpinning clinical practice, ensuring best possible patient outcomes, cannot be over emphasised. It should be obvious that such research is useless if it is not readily available and, if necessary, highlighted to relevant clinicians.

What activities have you been involved with?

It is early days for me in this role. However, some examples of what I have been involved in so far include:

·        Reviewing the documentation of a proposal to radically change the medication given to patients following open-heart surgery

·        Reviewing the patient information given to patients involved in a study of treatment of Obstructive Sleep Apnoea

·        Supporting events & presentations designed to highlight the importance of research utilisation.

What would you say to others who are considering getting involved in research?

I would definitely encourage them to do so. However, I would strongly suggest that before committing themselves, they try to understand exactly what the research was trying to achieve and why. Be prepared to ask questions, and, if they do become involved, at whatever level, do ensure they get feedback as to the success or otherwise of the research.

My name is Ruth Katz.  I have a PhD in Organic Chemistry, and spent my working life in the pharmaceutical industry.  I initially worked developing methodology for manufacture of new drug candidates.  Later I moved into Regulatory, managing a team preparing documents for submission to worldwide regulatory agencies to support clinical trial and marketing applications for new drugs.  My focuse was the aspects relating to manufacture and quality control.  I have participated in clinical trials. 

I retired at the end of 2019 and was looking for ways to continue to use my skills.  I have been a member of the public participation and involvement (PPI) team at Addenbrookes since mid 2020, and have now also become a Papworth Patient Research Ambassador (PRA).

How did you first hear about Patient Research Ambassadors?

I was looking to expand on the work I was doing at Addenbrookes.  My husband Peter had a triple bypass operation at Papworth.  I therefore had a natural interest and looked on the website to find ways of becoming involved.

Why do you think NHS research is important?

Research is the lifeblood of modern medicine.  Without medical research we would have no new drugs, treatment protocols, or surgical advancement.  NHS research is key to maintaining the engagement of staff.  Most people joined the medical profession to help patients, but also out of curiosity and a desire to learn.  Involvement in research stimulates their interest and ensures they are up to date with current knowledge and practice.  It is also well established that patients that are involved in research, or treated in an environment where research is a priority, have better outcomes.

What activities have you been involved with?

I have only just joined the PRA team, but as a PPI member at Addenbrookes I have been involved in projects, including patient input into use of AI to assist breast cancer screening, investigation of the impact of doing research on GP practice quality etc.  I have also reviewed many documents to support research applications, and patient information sheets for clinical trials.

What would you say to others who are considering getting involved in research?

Being a patient ambassador is very rewarding and in a small way is supporting the NHS, and future medical advances.