Research and Innovation Charlene’s Research Story – Diabetes Type 1 Charlene Absi, 33, is testing new insulin, monitoring her blood pressure and will have her baby screened for type 1 diabetes risk at Wycombe Hospital, High Wycombe. She was diagnosed aged 20 with type 1 diabetes, where the body loses the ability to produce insulin, which controls the amount of glucose in the blood and causes their levels to become too high. This can cause serious long-term health problems such as stroke. Mrs Absi said: “It is my biggest fear that I will pass this disease on to my child and I will give anything for them not to have it and for them to just live a normal life. Having diabetes just means constant monitoring. You don’t get a day off, you can’t just do anything on a whim, everything you do has consequences with diabetes. It was difficult when I was first diagnosed because I didn’t realise how sugary a lot of drinks were and I had to constantly check what I had. I also have to think about which fruits I will eat, as some will have a massive impact on my sugars whereas others won’t.” Mrs Absi, who injects insulin four to eight times a day, said: “When I was diagnosed I had a phobia of needles, so that was
pretty horrifying. It took me a very long time to come to terms with that. When I first found out I was pregnant, I visited the diabetes clinic at my hospital, where my doctor asked if I wanted to take part in a trial and I said ‘yes’ because the type of insulin they were studying could have better results than the type I was already on.” Mrs Absi volunteered for the EXPECT study, which is looking at which insulin is most effective at controlling blood sugar levels in pregnant women with type 1 diabetes. Women on the study are given either insulin Degludec or insulin Detemir, to compare the two. Neither participants nor researchers are told which they will receive, to avoid bias. The BUMP study is looking at whether giving women a blood pressure monitor to use at home can help early detection of pre-eclampsia, which causes high blood pressure and protein in the urine and can be life threatening for the woman and baby if left untreated. Mrs Absi had her blood pressure taken in hospital so she could be compared to those who did it at home. The INGR1D study will involve a sample of her baby’s blood - already collected from newborns for screening - being
Autumn 2019
tested for genetic risk of type 1 diabetes, with the mother’s consent. About 1% of children will have genes which put them at a high risk of type 1 diabetes. Those who have the genes are offered another trial, to see if giving infants daily doses of insulin powder can prevent them from developing the condition. Mrs Absi said, “I’d 100% recommend taking part in research to anyone. To have someone just checking in on you on top of your normal care is amazing. I’ve never been so well looked after and I’d love to stay in research for the rest of my life. I think the more people who get involved in research the better because we’re helping future generations tackle big health issues.”
What is Consent 4 Contact? It’s a registry of Bucks Healthcare NHS Trust patients who are interested in clinical research and want to hear about potential studies, receive this newsletter or support clinical research in some way. The information is held confidentially at the Research & Innovation office & is only used in relation to research at the Trust. Everyone who attends Buckinghamshire Healthcare NHS Trust should have the opportunity to take part in research, helping to improve care and treatments for all, and over 6,000 patients did just that last year.
Pick up a C4C leaflet in any patient waiting area & return it to the Research & Innovation Department at Stoke Mandeville Hospital alternatively, you can complete the online form by following this link: https://www.bhtresearchandinnovation.org/consent-4-contact For further information about research opportunities at Bucks Healthcare NHS Trust call the Research &Innovation Dept on 01296 316065 or see the website www.bhtresearchandinnovation.org You can also follow us on Facebook or Twitter @BHTResearch
Mr Jeremy Rodrigues, Consultant Hand & Plastic Surgeon
Meet Lisa Jones, our Diabetes Research nurse based at High Wycombe Hospital I started nurse training at Hillingdon Hospital when I was 18 and have been working as a qualified nurse in the NHS ever since, apart from one year spent working in Australia. I’ve been working as a research nurse for just over a year, but most of my career was spent as a cardiology nurse at Harefield Hospital. I have also worked in the Cardiac Cath Lab at Wycombe Hospital, at a GP surgery, and as a diabetes nurse. I am currently working on a diabetes study called EXPECT, which is comparing two different long acting insulins used in type one diabetes in pregnancy, and TRIMASTER, a study aiming to identify which groups of patients respond best to three different tablets used to treat type 2 diabetes. I am also starting two questionnaire studies, one looking at how patients feel that their diabetes was managed whilst they were a patient admitted to hospital, and the other study investigating how long term conditions such as diabetes and heart disease affect sleep, anxiety and fatigue. Research is essential in improving healthcare and treatment, without it, how do we know that we are doing is best for our patients and giving them the most up to date and effective care and treatment. One of my ladies in a diabetes study calls me her own personal nurse, she is used to me being there for her at her appointments, and even the doctors expect to see me when this lady is seen at the hospital. It means that you have someone you can call on for advice and support, even if your issue in not directly related to the research study. We will always try to help you, and really appreciate the time that people give up to help us with research, and in return I hope that being a research participant is a good experience.
You can contact Lisa for more information on current research studies that might be looking for new recruits at BHT via her email address: l.jones22@nhs.net
Where and when did you do your medical training? I read medicine at Edinburgh, qualifying in 2006. I trained in the UK: in Edinburgh, Nottingham, Bradford, Sheffield, Stoke Mandeville, Oxford and Chelsea & Westminster. I also undertook a Visiting Residency at The Mayo Clinic in Minnesota USA, and was The Bruce Bailey Fellow in hand, trauma and microsurgery at Ganga Hospital in India. Have you taken part in any research yourself? Yes! Right from my time as medical student, when I took part in a cohort study that followed students arriving at university who hadn’t already had glandular fever. How has research in your field changed? Research in hand and arm surgery is growing right now. Already a trial comparing treating wrist fractures with plates and screws compared to simpler wires has been completed. This led to fewer people being treated with the relatively expensive plates and screws. As these injuries are common, this has resulted in an estimated saving for the NHS of £2 million each year since. Why do you think research is important to the NHS? I’d start by flipping this around. I think the NHS is really important to research. Very few other countries have such a large and standardised health system. This means that we are almost unique in being able to run the kinds of large studies that really make a difference, like the one I mentioned above.
We do also know that research benefits the NHS. Hospitals that take part on research generally get better results than ones that don’t, even outside the research studies. What are the benefits to patients of taking part? I think it can be empowering and satisfying to know that you have chosen to contribute to research that is aiming to improve care for people just like you. It’s also a great way to learn more about your condition and care. Are there any negatives patients should consider? I think the positives massively outweigh negatives. However, just like so many things in life, people sometimes feel that they “ought” to take part in things, when in reality, it is not for them. It’s actually better and easier if you do say “no thanks” if a research project is not for you. This might be the case for longer studies where you think it will not suit you to continue to take part in the future, for example. What research are you involved in BHT? I have a split contract. For part of the week, I am employed to do research, through the University of Oxford. As my surgical work is at Bucks, I work with patients and staff here for this. My personal job is funded to study how we measure the outcome of hand surgery. This is to see if we can use this information to predict whether somebody is likely to benefit from surgery. We can do this by comparing the person to others like them who have already had surgery. Then we can effectively say “people like you find that surgery is helpful/not helpful”. I am also involved in studies comparing treatments for people with skin conditions (including something called “hidradenitis suppurativa” which is similar to severe acne), hand injuries, pressure sores, and cleft lip and palate surgery.
Nicky Cronbach, Eye Doctor & Researcher What were you doing before you started working in research? Ophthalmology specialist training – I now do research alongside my clinical work. What type of research projects have you worked on? I’m currently involved in a study looking at the best way to detect new wet macular degeneration (AMD), and I am also working with four other doctors across the country to look at a new type of imaging called OCTA and whether we can use this to diagnose wet macular degeneration. I am running an epidemiological study of sight threatening chemical injuries (which includes acid attacks) and how we currently manage them. We are investigating the pattern of these injuries including the frequency, geographical distribution and resulting levels of visual impairment, along with the current
management trends. What do you enjoy about research? There is so much variety! I am currently working on both epidemiological and clinical imaging studies. What are the benefits to patients? Some studies provide obvious immediate clinical benefits. Of the studies I am currently involved in, one is determining the best test for early diagnosis of wet AMD, which in future should help to save sight by enabling earlier detection and treatment of this condition. The other, looking at the demographics and current management of sight threatening chemical injuries, hopes to both direct better public health approaches to preventing their occurrence and provide clinicians with more information on the most effective strategies for minimising visual damage. Why is research important to the NHS? It directly & indirectly benefits patients but it also helps clinicians understand what treatments are most effective and helps
BHT Success at the Thames Valley & South Midlands Research Awards 2019 Bucks Healthcare NHS Trust staff, volunteers and research teams were recognised at the Thames Valley and South Midlands Clinical Research Network Awards for their hard work and contribution to NHS, public health and social care research. Congratulations goes out to all the welldeserved award winners who bring research opportunities to patients every day.
Dr Piers Clifford, Outstanding Research Impact
Award winners, Geraldine Hambrook, Danielle Thornton, Bethan Peach, Lisa Frankland and Dr Raha West supported by Neil McDonald, CEO at Bucks Healthcare NHS Trust
public health teams target their initiatives. Have you been a research participant? No, but my daughter is! She has so far had a nasal swab in a study looking at pneumococcal carriage, and we are going every few months to the BabyLab at Oxford University to be part of a study of brain development in babies.
A Study Looking at Early Discharge after Ruling Out a Heart Attack A heart attack is diagnosed if certain symptoms develop, eg chest pain, tightness in the chest, shortness of breath, sweating & a racing pulse, combined with Electrocardiogram (ECG) changes and/or changes in certain blood proteins (biomarkers). All of the combined observations and data allow your treating doctor to make a reliable assessment of your state of health and initiate the required treatment, quickly and efficiently. Reliable diagnosis of a heart attack is vital. Patients with similar symptoms but who have not had a heart attack need to be treated differently to heart attack patients. Reliable rule-out of acute heart attack at an early stage is therefore very important. Testing blood protein levels (biomarkers) is an important part of this first assessment. Normally the biomarkers are measured on arrival at hospital and again after a few hours, to detect changes over time. Dr Piers Clifford was one of the publishing authors in the Pro-Core Registry which was done in Wycombe and Stoke Mandeville hospitals. The Copeptin study was about comparing the safety of a
strategy using two biomarkers (copeptin and high sensitivity troponin) versus standard care using high sensitivity troponin only for the early rule-out of acute myocardial infarction (AMI) in patients with suspected acute coronary syndrome (ACS). Patients admitted to the hospital's A&E Dept with chest pain and a possible heart attack were approached. Nicola Bowers, senior research nurse, lead the cardiac research team and they recruited 900 patients in total 450 from each site/cohort in a year. This was a NIHR adopted commercial study. The study is now closed but you can read more information about the results in http://bmjopen.bmj.com or contact the Cardiac Research Team on 01494 425901.
Christa Dyson - Patient Research Ambassador Google the role of a Patient Research Ambassador (PRA) and you will learn that it is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and is willing to communicate that to other patients, the public, as well as other healthcare professionals. The description is as broad as it is long. Invariably those that undertake these roles do so offering their support to a particular field of research. I am no exception. Since a child I had a fascination for
Biology at school. I went on to read Biological Science at Nottingham University for my degree. I have worked in both research and product development for Unilever until, once married and with two children, life threw me a curved ball. A spinal stroke left me partially paralysed from the mid chest down. Living in The Netherlands at the time, in support of my husband’s career, I undertook all my primary rehabilitation there. I emerged from a year of rehabilitation as a very wobbly walker but with impaired arm function and no hand function at all. Medically I was described as a C4/5 incomplete tetraplegic. To my family I remained a wife and mother to two young children. The rehabilitation I received, especially once admitted to a specialist spinal unit, was outstanding with a real focus on living
as well and as independently was safely possible. Indeed, we went on to spend two years living in Muscat, Oman, after which we returned to live in The Netherlands again. Our last overseas posting was to Houston in the United States before in 2010 we returned to live in England. Of a total of 21 years living around the world overseas I lived 17 as a spinal cord injured individual. Returning home led me to come under the care of the National Spinal Injures Centre at Stoke Mandeville Hospital and was where I was introduced to the national charity, the Spinal Injuries Association (SIA). In 2012 I was elected to become a Trustee for SIA and I think, reader, you can already guess where my primary area of focus lies as a PRA … more of which I will share in a coming edition of this newsletter.
Best Evidence for Scar Treatment (BEST) study The study is looking into whether or not silicone gel dressings make a difference in people with scars. What is BEST? BEST participants are healthy volunteers who will receive very small controlled scars on either hip. They will then be advised to wear a silicone dressing daily on only one of the scars for 12 months. Follow up appointments will be in a dedicated clinic at 3 months, 6 months and 12 months with questionnaires and non-invasive scans of the scars. Why BEST? Scarring is very difficult to treat and a lot of the current treatments out there have very weak evidence behind them. Silicone gel sheet dressings are used regularly for the treatment of scars but there is very little good quality evidence that they help. Some doctors think silicone gel sheet dressings can be difficult to wear and offer no benefit. Other doctors think it helps a lot and we should use it more often to reduce scarring.
We hope to demonstrate with good evidence whether or not silicone gel sheet dressings make a difference in treating scars. We hope to use this information to help treat patients with scarring in this world first study. Please contact the team for more information via judith.abrams@nhs.net or riyammistry@nhs.net
Please help us with Crohn’s and Colitis research! We aim to turn recent scientific and genetic advances into improved understanding and better treatment for IBD. It’s simple and quick. To find out more please contact: Ruth Penn on 01494 426588 www: ibd@bioresource.nihr.ac.uk