This My CUH Story is from Anne Elmer, a matron in research.
What’s your role in our hospitals?
I’m a matron in research, however before I begin, just a bit of background how I came to the role, as it wasn’t planned but it has been a great ride so far!
My background is as a dual-trained nurse, adult and paediatric. In 2009 I was working on a paediatric ward when I was asked to help with a children’s research trial at the National Institute for Health and Care Research (NIHR) Cambridge Clinical Research Facility (NIHR Cambridge CRF), by a colleague who had recently started a new job as a paediatric research nurse.
My initial response was ‘Where is the CRF? What do they do there? I can’t do research, I’m not clever enough,’ but that all changed when I came for a visit. My colleague Janet talked me through the research visit (it was a diabetes trial), I met the young patient and so enjoyed the atmosphere of discovery that I was immediately hooked. As soon as a job became available there, I jumped at the chance to try a new field and I’ve loved it ever since!
I’m now matron of the NIHR Cambridge CRF, which is located in the Addenbrooke’s Centre for Clinical Investigation (ACCI) here at Cambridge University Hospitals. It provides a facility for research involving children and young people, an adult outpatient area with investigation and audiology rooms, and a bespoke metabolic research area with body composition measurement facilities. It’s also one of two linked buildings, the other being the Cambridge Clinical Research Centre (CCRC), which comprises the Interventional Procedures Unit, Early Phase Unit, Wellcome-MRC Metabolic Translational Research Facility and an adult Clinical Research Facility. All are dedicated to delivering and supporting early translational experimental medicine.
As you can see, we’re now a large department and are getting busier each year! This year has been particularly busy for the NIHR Cambridge CRF. Normally we see around 6,500 people taking part in research, but this year we have had more than 35,500 patient visits, which is great that so many people want to take part in research.
Fundamentally, my role is to ensure patients and participants are safe when they are taking part in research and that the data/results that are obtained from the study are robust and accurate.
I have oversight of all studies within the NIHR Cambridge CRF and work closely with CCRC Matrons and team leaders to ensure we continue to provide a world class service to the patients, participants, academic and industry partners. I work with the senior team of the CCRC, including two matrons, as we’re essentially one team with one management and governance structure.
I love the daily collaboration with nurses, medics, academics, Trust departments and University of Cambridge, to offer amazing opportunities for patients and healthy volunteers to be involved in research and make a difference in their own and others’ lives.
What does a usual day look like?
My day begins the same way as on most wards, with a ‘handover’, but it involves all the staff, such as the team leader, nurses, ward clerk and ward assistant. We discuss the research studies running that day, what activities are involved (taking blood, giving an experimental drug, and any patient issues – if someone needs to be collected from the main entrance etc.
As nurses, we also work in the sample handling rooms based on the ward to centrifuge blood samples, so staff are allocated to those areas too.
The most common misconception of research nurses is that we are entering data into a computer, but you couldn’t be further from the truth. While there’s a very tiny amount of that, the nurses in the NIHR Cambridge CRF and CCRC also complete all the regular nursing tasks; nursing care, taking vital signs, cannulation, ECGs, venepuncture etc. as you would on a ward.
We have added skills though, including in-depth knowledge of Good Clinical Practice, and practical skills of sample processing, lumber punctures, skin biopsies, muscle biopsies, vaccinations and endoscopy, to name a few.
But getting back to my average day, I could be looking after an elderly patient or a young child, as each day is different. Yesterday for example, I looked after a delightful nine year old girl who came in for a research visit – she had agreed to take part in a trial called Innodia (opens in a new tab), as she was a newly diagnosed diabetic.
After checking with her and mum that she was still happy to consent to carry on with the visit (this was her second time at the NIHR Cambridge CRF), I removed the Emla numbing cream that mum had applied at home and cannulated her, ready to take repeat blood samples over the next two hours. She drank her milkshake – for the study, not from McDonald’s – and I took blood samples from her cannula and processed them ready to be shipped off by courier later in the day.
We talked about the study, played hangman and chatted. When the blood taking had finished, she had breakfast with mum as they were both hungry, and then off they went home to enjoy the rest of their day.
My philosophy is to ensure that every patient and health volunteer that attends our facility has an attentive, personal, professional and friendly service. Research is not about a one-off visit, it’s about retention of those volunteers who give up their time to help, as research is for all.
Tell us about a case that really stands out to you
We have been running a Covid follow-up clinic on behalf of CUH and have had the pleasure of meeting many patients who have suffered from the virus.
Initially, I was involved in looking at Covid admissions and offering patients research trials to understand the nature of the virus. Once the patients were discharged, I rang them to complete a questionnaire of how they were feeling and what symptoms they were still experiencing.
The case that stands out for me is a male patient who was usually fit and well, but now he was unable to walk without significant assistance and it had devastated his life. He talked about his experience of being in hospital, his fear of dying and fear of never regaining his former self.
The patient attended the follow-up clinic with his wife soon after our phone call and struggled with his walking. He was seen by various members of the medical team, including physiotherapy, and was given a plan to aid his recovery. As he was so keen to find answers, the patient also agreed to take part in the Post-hospitalisation Covid-19 study (PHOSP-COVID) (opens in a new tab), a further research study looking at the long-term effects of Covid, and over the next few months he attended the NIHR Cambridge CRF on a regular basis.
We have seen him grow stronger and stronger, and last week he told us that he had returned to playing golf. I know this isn’t the case for all Covid patients, but his regular attendance at the unit has allowed us to see his steady progression first-hand. He said he had loved attending and wanted to take part in any other research projects we had going, as he had really enjoyed the time he spent with us.
What do you enjoy most about your role?
I love working in the innovative, fast-paced, supportive, inclusive, world-class research environment that is the NIHR Cambridge CRF and CCRC.
The variety of patients and healthy volunteers that we see on a daily basis, from babies to adults, is incredible.
I also like reading complex research protocols and simplifying their language, and working with our industry partners, but most of all I enjoy finding answers to questions and making research happen!
From the patient’s perspective
With the help of research, we now have insights on how to treat Covid-19, but still very little information with the long-term effects of Covid-19, particularly what the ongoing medical, psychological and rehabilitation needs are for this group of patients, and how we can enable them to make as full a recovery as possible.
To address this, PHOSP-COVID (opens in a new tab) is a long-term research study recruiting 10,000 patients who have been hospitalised with Covid-19. Over the course of 12 months, they’ll carry out clinical assessments to gain a comprehensive picture of the long term impact Covid-19 has had on our health outcomes across the UK.
Mr. Colin Whittaker is a research participant taking part in in the study at NIHR Cambridge CRF and he has kindly shared his experience, explaining why he is taking part in research.
Hello, I am 54 years old and have had asthma my whole life. It was well managed with zero hospital visits for the last 30 years. I’m also a non-smoker.
I was diagnosed with Covid in March 2020. Covid-19 attacked my lungs, nervous system, bones and kidneys. I was ventilated and incubated while in an induced coma for 25 days. I was resuscitated twice and on dialysis for 13 days. I had a tracheotomy to help me breathe and a tube down my nose for food. I spent eight weeks in hospital.
I have permanent neurological damage, which resulted in semi-paralysis in my left hand and right foot. I have abrasions on my brain that are synonymous with a collision and my speech has slowed. I have holes in my lungs and the blisters come and go. I have permanent emphysema. I am now officially diagnosed with Long Covid.
Fatigue is big, but the neurological pain is extreme. I take regular pain relief to manage my pain, but these only put a dent in it. Homeopathy and science must combine to manage these crippling effects. Breathlessness, brain fog and lethargy are all daily challenges, and depression is the nuclear war I battle every day, but it’s a battle that Addenbrooke’s efficiently armed me for.
Because I got Covid-19 in the early stages and before anyone knew anything about it, I have become a national case study. My blood and plasma and vein structure went to Oxford. My neurological and respiratory system were predominantly researched and treated by Addenbrooke’s. This includes cognitive studies.
Why did I take part in Covid-19 research? The fact is, you can either be a part of the problem or part of the solution. The battle those nurses went through for me, for all these poor souls, I owe it to them to be the best patient one can treat. Because of their sacrifices, I am duty-bound to live strong, get better, and campaign for their wellbeing. The more research, the easier the prognosis and treatment. Everybody wins. There is no better way I can thank all of those who brought me back to life.
More information about CRFs
NIHR’s 22 Clinical Research Facilities (CRFs) are purpose built facilities in NHS hospitals where researchers can deliver early-phase and complex studies.
The facilities have cutting-edge clinical facilities, technologies and expertise and are designed to support high intensity studies and overnight stays.
Researchers funded by the NIHR, the life sciences industry, universities, or other organisations can access an NIHR CRF to support their study, from study design to data collection and study management.
NIHR - Cambridge Clinical Research Facility (opens in a new tab)