Category: Uncategorized

Jo Grey (AMEND CEO)

When I was (eventually) diagnosed with MEN2A in 2000, there was absolutely nothing out there for patients except the isolation of being diagnosed with a rare genetic condition.  “It’s likely you’ll never meet another family like yours”, we were told.

How some things have changed!  Now, through AMEND, which is 20 years old this year, newly diagnosed patients and families can meet others via Zoom, or at in-person Peer Support Meetings facilitated by trained patient volunteers.  They can join in with our popular Annual Patient Information Day, or they can simply chat via one of our private social media groups.

Back in 2000, there were no patient information resources about MEN syndromes.  All I had was a photocopy of a medical textbook article to help my husband and I decide when my son should have his prophylactic thyroidectomy.  Now, not only can parents easily speak to other families who have made this decision, but our disease information resources include information on genetic testing in children, and appropriate preventative surgery.  There are even resources for the children themselves, including our popular Marvel-style comic books and beautiful cartoons.  As they grow older, our adolescents and young adults have access to their own resource section on our website that also includes films about living life with an MEN syndrome, and most recently, can join one of two age-appropriate WhatsApp chat groups, moderated by our trained Youth Volunteer, Sarah.

AMEND’s disease-scope has also expanded over the years and now includes familial paraganglioma syndromes, medullary thyroid cancer and adrenocortical cancer.  Both PGL syndrome and ACC Groups now have their own identities (Phaeo Para Support UK and ACC Support UK respectively), along with dedicated websites and social medial channels and group.  Specific information resources about the diseases and support services, including our Counselling Service are all available in the usual way for these patient communities too.

AMEND is also always happy to help our health professional colleagues, from participating in medical student training, lectures on patient perspectives to trainees or at conferences, or simply by being there in clinic to talk with patients.  We took on the Phaeo Para Crisis Card resource developed by St Bart’s and made it available to order for all clinics with phaeochromocytoma patients.  As many of you will know, if there’s a conference, we’re usually there!  These are great ways of getting to meet health professional colleagues in person to discuss upcoming projects, as well as to spread the word about our resources and services for patients.

The Society for Endocrinology (SfE) has been a great source of help over the years, offering free exhibition space at British Endocrine Society (BES) and ENU conferences, patient group travel grants to help us get there, and most recently, patient group grants to help fund projects related to the provision of information resources to patients. Currently, we are part of a SfE patient committee looking at ways to raise the profile of endocrine conditions with primary care physicians.  Affiliation with the SfE and medical advisors drawn from the SfE membership helps cement AMEND’s standing as a patient group of excellence for those with rare endocrine syndromes.

It’s safe to say that, in this, our 20^th anniversary of registration as a charity in England and Wales, we can look back with huge pride at all we have achieved.  And yet there is still so much more to do!

There are still delays in diagnosis that need to be addressed and so AMEND is working with the International Neuroendocrine Cancer Alliance (INCA), and medical societies including the Society for Endocrinology to address this over the coming years.

Behind the scenes are teams of volunteers, including our Trustee Board, who are currently setting AMEND’s strategy up to 2026. Our new Strategic Plan will highlight two themes for attention over the next few years: Sustainability and Awareness.  AMEND will be looking at sustainability of both income and personnel. Awareness covers the need to raise awareness of AMEND and the diseases we cover to help aid earlier diagnosis.  We are particularly keen to involve more Endocrine Nurses in helping us spread the word and are always happy to hear your thoughts and suggestions, as well as to have you involved in any of our projects.

This year, we are starting work on two new projects; our Rare Endocrine Tumours & Syndromes smartphone App (RETS App) which will replace our MEN Passports as a repository for patients’ personal information regarding their disease and its management, and the development of a resource for GPs about each of the diseases we cover (MEN and PGL syndromes, ACC and MTC).  We hope that this resource, that will be distributed by existing patients to their GPs, will highlight what areas of management can be achieved locally, as well as raise awareness of signs and symptoms of recurrence, or of the disease in general.  Taken together with other projects with the SfE and by organisations bigger than ours, we hope that the average time to diagnosis of patients with rare endocrine tumours and syndromes will improve.

While we celebrate our successes of the past 20 years throughout 2023, we look to the next 20 years with both positivity and realism.  A new CEO will be needed from 2026 to bring the skills and energy necessary to take AMEND into the future.  Perhaps my successor will come from the Endocrine Nursing field!  Whoever it may be, they will love working for this small but big-hearted charity.

Visit AMEND’s website to learn more about the incredible support work the charity has managed over the past two decades.

Claire Stirling is an endocrine nurse specialist, who helped to found the Gender Identity Nurse Led Clinic in Grampian Aberdeen. In November 2022 Claire attended SfE BES in Harrogate and presented her poster alongside her colleagues, and was recognised with an award. Find out about her endocrine nurse specialist journey, her new-found passion for presenting research and her joy at the endocrine nurse community.

My career in nursing began with a solid training program in all areas of nursing at Robert Gordons University Aberdeen. I reflect fondly on my nursing training. I was chosen to represent Aberdeen with a fellow nursing student to visit our sister city of Houston as part of the Houston Texas Exchange Program and visit their many wonderful medical and surgical facilities. It showed me in the early stages of my career the wider world of nursing and medicine as a whole and how fruitful the exchange of knowledge between fellow nursing colleagues within our working daily lives and across the world can be. In present day I gain so much from attending endocrine conference meetings, sharing in the exchange of knowledge as I did in my early nursing training

When I graduated from nursing I began my career path in cardio thoracic, moving to the specialty of general medicine and then diabetes and endocrinology, working for many years building solid foundations in my nursing practice. I continue to preserve my overall ward nursing skills working as a general bank nurse, as well as being an endocrine specialist nurse permanently, which I became seven years ago. I feel my experience from general medical wards compliments my daily work with my patients within the endocrinology nurse speciality.

Patients I meet from the various clinics we run as endocrine specialist nurses can be complex and have other medical issues alongside an endocrine diagnosis. I am passionate about nursing as a whole and put my patients at the very centre of my daily professional nursing role as an endocrine specialist nurse.

My entry to endocrine nursing was a natural progression in my career. Over a year ago I was given the opportunity to start a Gender Identity Nurse Led Clinic with my two consultant mentors, Dr Dymott and Dr McGeoch who have been exceptionally supportive. These consultants devised the nursing role I have, having established the GIC within Aberdeen Grampian initially themselves a few years ago.

I was motivated to showcase the nurse-led GIC at SfE BES 2022 to inspire other specialist nurses to establish and develop  such a role within their own areas of endocrinology, and was overwhelmed how well received my poster presentation was at the conference and was exceptionally honoured to receive an award. I was delighted to share my experience of my nurse-led gender identity clinic and hope it inspires other nurses to do such a poster to showcase their own hard work and share a nursing clinical framework such as I did, in order for other nurses to potentially be encouraged and inspired to mirror and utilise within their own areas.

The success of my poster presentation has certainly aided my confidence and belief in myself as a practioner, my advice to other specialist nurses is don’t be scared to shine your bright light of knowledge with others. I have received nothing but positive feedback on my work from fellow nurses.

I have found the experience truly warming. The endocrine specialist nursing community is a wonderful community of professionals who support one another. I feel so inspired to present again, I encourage other endocrine specialist nurses to share their current work, research and knowledge and shine bright at the next SfE BES!

I thank my mentors Dr Dymott and Dr McGeoch within GIC, who support me in my GIC specialist role, who encouraged me to present a poster. I must also thank Dr Abraham and Dr Graveling who have given unwavering support, encouragement and inspiration in my endocrine specialty journey for these past years alongside my wonderful fellow specialist nursing team, led by lead endocrine specialist nurse Morag Middleton who I thank for their ongoing support and encouragement also.

Here is to the next endocrine conference meeting, look forward to seeing other fellow specialist nurses sharing their knowledge there. I am delighted to say I have been kindly invited to speak at the next nurse led conference in Birmingham this April, again another opportunity to shine a light of the GIC work we are doing in Aberdeen Grampian.

Claire Stirling and her colleagues, Jane Dymott and Susan McGeoch presented their award-winning poster ‘Our Grampian experience of establishing an endocrine nurse specialist service within the Gender identity clinic’.

August Palma is the first endocrine specialist nurse from Cambridge to complete the Masters-level Module in Endocrine Nursing at Oxford Brooke’s University. He is an endocrine research/specialist nurse under the Endocrine Molecular Imaging Group of Professor Mark Gurnell at the Wolfson Diabetes & Endocrine (WDEC) Clinic at Addenbrooke’s Hospital in Cambridge, UK. His area of interests include endocrine conditions of the pituitary and adrenal glands. Read on to learn about his career journey, his experience of endocrine nurse studies and his wise words for aspiring endocrine nurse specialists.

Could you tell us about your career journey?

Before coming to the UK in 2015, I was an emergency staff nurse at a local hospital in my hometown in the Philippines. I was never particularly drawn to endocrinology back then, nor had I considered specialising in endocrine nursing. The only connection I had with endocrinology was diabetes (both parents of mine have Type 2 diabetes). Nurse specialisation in the Philippines is also very limited to certain areas only such as critical care, surgical, obstetrics and dialysis to name a few. Endocrine specialist nursing in the Philippines is unheard of even up to this day.

Fast forward to when I was searching for opportunities to apply to as a nurse abroad, I attended a national conference about endocrinology in order to comply with my annual Continuing Professional Education (CPE) credits as a requirement to renew my professional license. Representatives from Cambridge University Hospitals NHS Trust had come to the Philippines to recruit nurses – the “endocrine connection” as I call it, which started in that conference I attended a few months back, seemed to have stuck with me – as fate would have it, the interviewer told me I got the job: “Well, since we don’t have any vacancies in A&E at the moment, we would like to offer you a post in the diabetes and endocrinology ward.” Of course, I didn’t say no and the rest was history.

What inspired you to choose endocrinology?

Within two years working as a staff nurse in the diabetes and endocrinology ward, I felt like I needed to do something more and progress professionally. During my very first appraisal, I mentioned to my mentor and supervisor that I wanted to pursue research. I started looking for research posts within the Trust and an opportunity to apply as an endocrine research and specialist support nurse within the same division presented itself. I have greatly enjoyed doing research for as long as I can remember and to combine it with the complexity of the endocrine system made it even more interesting! When I trained as a nurse, endocrinology wasn’t my first love because I found it really complex to understand. However, that all changed when I became an endocrine nurse because I learnt so much about treating complicated endocrine disorders, and I feel like I make a huge difference in the lives of endocrine patients. This, and the fact that I actively participate in research to improve diagnostic and treatment modalities of various endocrine conditions, inspires me to continue my journey as an endocrine research and specialist nurse.

What motivated you to apply for the SfE Masters-level Module scholarship?

Pursuing higher education was always part of my plan after finishing university.  I never got the chance to do this because my career path involved a few twists and turns before I became a nurse. Then came the time when I had to start working to earn money, so pursuing post-graduate studies was considered a luxury rather than a priority at that time. I am grateful to the Society for Endocrinology for granting me a scholarship to do the Masters-level Module in Endocrine Nursing. At first, I was a bit hesitant to apply knowing the time and effort involved (especially for someone who works full time). I thought doing this double module with a busy four-day work week would be a difficult and challenging task. After much consideration and, with the encouragement of some of my colleagues and mentors, I took up the challenge. Another motivating factor was the endocrine project expected as part of the requirements in order to complete the module. This is a chance for endocrine nurses like me to create something that would benefit endocrine patients and improve the endocrine service, in general.

“Being part of the patients’ journey from diagnosis to treatment and somehow making a difference in their lives is something I consider a proud moment for me”

What was the journey through the module and how has this influenced your career?

The journey through the module involved long hours of reading and researching be it in the clinical library at Addenbrooke’s Hospital, or virtual trips to the e-library of Oxford Brookes University. I also had to miss out on a few weekend invitations from friends or give up personal time on my days off for a few months to focus on writing my paper. In honesty, it wasn’t a walk in the park, but in the end it was all worth it. I mainly look after a specific group of patients with primary aldosteronism (PA or Conn’s syndrome) and my endocrine project was to design a standard operating procedure (SOP) to support the running of a virtual nurse-led clinic for patients with PA. This SOP will hopefully provide a systematic approach or pathway from case detection, screening, diagnosis, management and follow-up or surveillance. There are not that many centres in the world that are considered centres of excellence in dealing with PA and this is why only less than one percent are diagnosed with this condition globally when, in fact, previous studies show that among those who have hypertension, approximately five to 15 percent of them may have PA. On a global scale, this would translate to millions of undiagnosed patients with PA. PA is a surgically curable form of endocrine hypertension if it is caused by an excessive production of aldosterone from a unilateral adrenal adenoma. Bilateral PA is managed medically.

The SOP has greatly influenced the way how I follow up patients on a regular basis from starting the initial investigations, booking dynamic and confirmatory testing, keeping track of their blood pressure readings and monitoring their response to medications, and acting as liaison between them and the endocrine doctors for any specialist concerns.

What are you most proud of in your career so far?

Apart from being the first and only nurse in our Trust to complete the module so far, I am most proud of being able to help patients with PA. I feel very happy and proud when patients tell me that their lives have changed dramatically after surgery, or that they feel so much better when a diagnosis is finally made and that the appropriate medication helps provide better BP control. Unfortunately, PA is not widely known to clinicians, especially at the primary care level, and this contributes to the low diagnostic rate. Some people with PA have severe phenotypes that are characterised by resistant, refractory or uncontrolled hypertension involving multiple antihypertensive agents and they may also experience mild to severe hypokalaemia. These patients are also at a much higher risk of cardiovascular morbidity and mortality than age-and-gender matched patients with essential hypertension. Thus, it is quite important that investigations to detect and diagnose PA are not delayed and are done in a relatively timely manner. All these issues can be worsened by the patients’ poor general quality of life with fatigue being one of the most common symptoms they report. Being part of the patients’ journey from diagnosis to treatment and somehow making a difference in their lives is something I consider a proud moment for me.

Would you recommend the module to your colleagues?

Absolutely! In fact, one of my colleagues has been accepted and is due to commence soon. I am also encouraging other members of our team to do the same.

“It wasn’t a walk in the park, but in the end it was all worth it”

Do you have any advice for aspiring endocrine nurses interested in career development but don’t know where to start?

Endocrine nursing, as a whole, is a broad field with so many opportunities to specialise in for further career development, so it’s really important for an endocrine nurse to think about which area of expertise to focus on under the guidance of the Society for Endocrinology’s Competency Framework for Adult Endocrine Nursing. I believe this is the first step that each endocrine nurse should contemplate and work on. The framework is quite useful in assessing one’s progress in their career journey and level of expertise, which will guide each endocrine nurse every step of the way.

Discussing professional development goals and objectives with your line manager during annual appraisals is another way of planning ahead and looking into progressing one’s career. This is a great chance to find out if funding and resources are available within the Trust or elsewhere, i.e. NIHR, society grants or scholarships and other external sources of funding, and if full support to undertake a course can be expected from the management.

It is also important to network with other endocrine specialist nurses, engage or participate in relevant professional meetings and events to keep up-to-date with opportunities available outside the work environment.

Have you had mentors and how has this helped you so far?

I had the opportunity to be mentored by Louise Breen, the Nurse Committee chair of the Society for Endocrinology, when I did the module. As my work-based facilitator, she provided me expert insights and ideas especially during the drafting of my learning contract for the module.

I am quite lucky to work with colleagues who are very supportive and ready to lend a hand or simply share ideas with. During my appraisals, I was never turned down nor rejected when I proposed to pursue something that will help me in my career progression. My managers – Katy Davenport and Andrea Lake – encouraged me to apply for study grants, consider starting a specialist nurse-led clinic for PA, and get more involved in the set-up phase of a new clinical trial, among other things. I am grateful to all my colleagues in the Endocrine Investigation Unit at the Wolfson Diabetes and Endocrine Clinic (WDEC) for their continued support and encouragement, and also to Dr. Russell Senanayake, Dr. Waiel Bashari, Dr. James MacFarlane and Professor Mark Gurnell for always sharing their valuable time and expertise in the field. I wouldn’t be where I am today, nor would I know anything about endocrinology and research if not for the support and guidance from all of them.

“One of my colleagues has been accepted and is due to commence soon. I am also encouraging other members of our team to do the same.”

You can find out more about the Masters-level module in Endocrine Nursing, and find out how to apply on our website.

A Society Meeting Support Grant was used to fund a focused scientific meeting on physical activity and the endocrine system at Nottingham Trent University in July 2022. John Hough and Jessica Piasecki, Senior Lecturers in Exercise Physiology, Sport, Health and Performance Enhancement (SHAPE) Research Group at Nottingham Trent University organised the one-day meeting and three oral presentations were selected to win prizes at the event. Read on to learn about the prize winners and their research.

A protocol for time restricted eating in adults with pre-diabetes: the OFFSET study

Clair Prior¹*, Christopher I Morse¹, William Ollier², Adrian H Heald³, Kelly A Bowden Davies^1
1 Department of Sport and Exercise Sciences, Musculoskeletal Science and Sports Medicine Research Centre, Institute of Sport, Manchester Metropolitan University, Manchester, UK.
² School of Health Sciences, Faculty of Science and Engineering, Manchester Metropolitan University, Manchester, UK.
³ Department of Diabetes and Endocrinology, Salford Royal NHS Foundation Trust, Salford, UK.
*Presenting Author

Introduction: Nutritional interventions play a key therapeutic role in preventing, managing, and more recently reversing Type 2 diabetes (T2D). However, over half of the people referred to the NHS Diabetes Prevention Programme do not engage. Additionally, demographics such as age, sex, ethnicity, and socio-economic status are associated with a differential response and success (Valabhji et al., 2020). More acceptable and inclusive interventions need to be developed.

Aim: To investigate the effect of a dietary intervention that restricts time of eating (time restricted eating; TRE) and drinking in people at risk of T2D.

Methods: Recruitment is inclusive based on the NIHR INCLUDE ethnicity framework (2022) and will target 34 participants, aged 18-65 years, male or female, classed as pre-diabetic (HbA1c 42-47 mmol/mol). A randomised control trial design will be used to study the effects of 12 weeks TRE (limited to a maximum 10 hrs per day; n=17) versus control (usual eating/drinking; n=17). Participants will be required to record their dietary intake as baseline, week 1, 6 and 12. Two weeks of continuous glucose monitoring (CGM) and physical activity (GENEActiv) will be obtained pre and post (i.e., study weeks -2 to 0 and 10-12). Pre and post laboratory assessments include: anthropometrics, body composition, blood pressure, fasting blood biochemistry (e,g, HbA1c, HOMA-IR) and a 2-hr oral glucose tolerance test. The primary outcome is change in mean post-prandial glycaemia (AUC) from CGM. Analysis will meet the requirements set out by international consensus (Danne et al., 2017) for 70-80% of possible CGM readings over a 2-week period.

Results: The study has been funded by Abbott Laboratories (medical device company) who supply the CGMs FreeStyle Libre 2™. Currently under ethical review. The conference provides the invaluable opportunity for peer-review comment prior to full registration of the trial and submission of the protocol manuscript.

Conclusion: A dietary intervention that specifically targets people with pre-diabetes in diverse communities is warranted. The findings may assist the development of future larger scale interventions that adopt an inclusive approach.

Intermittent loading induces an increased bone formation marker response in mice compared to continuous loading in vitro

Reece Scott¹* , Cleveland Barnett¹, Ruth James¹, Craig Sale², Livia Do Santos¹, Ian Varley^1
1 Department of Sport Science, Nottingham Trent University, Nottingham UK
² Institute of Sport Science, Manchester Metropolitan University, Manchester, UK
*Presenting Author

Weight-bearing exercise has proven effective at inducing bone formation. Rest periods between exercise bouts may have a role in optimising bone mechanosensitivity and could be an important consideration when designing exercise regimes for osteogenic effects. It is not clear how pre-osteoblast/osteoblast activity reacts when loading intensity and duration are matched, but the mode of load application is altered.

The aim of this study was to assess the pre-osteoblast response to a loading regime with and without periods of unloading.
Mouse pre-osteoblasts were cultured under cyclic loading conditions (non-loaded, continuous, intermittent) using a Flexcell bioreactor for tension (n=3). Loading conditions were matched for duration under strain (5 hrs) and intensity of strain (5000 μS at 1 Hz). The mode of applying continuous load was 5 hrs of strain followed by 19 hrs of rest whereas intermittent loading was 1 hr of strain followed by 3 hrs 48 mins of rest every 24 hrs for 1, 3 and 12 days. ARS, ALP and P1NP analyses were performed. A one-way repeated measures ANOVA compared differences between loading conditions for ARS, ALP and P1NP for each timepoint.

There were no differences between loading conditions in ARS (p>0.235). ALP activity was greater following intermittent loading on days 1, 3 and 12 (non-loaded 0.258 ± 0.028; continuous 0.313 ± 0.031; intermittent 0.440 ± 0.054 umol/min/mL; p<0.05). P1NP was greater in the intermittent condition at day 12 (ctrl 151 ± 39; conex 121 ± 61; intex 279 ± 116 ng/ml; p<0.05) but lower at 3 day (ctrl 46 ± 12; conex 66 ± 9; intex 32 ± 9 ng/ml; p<0.05) than in the non-loaded and continuous conditions.

Intermittent loading resulted in higher ALP and P1NP activity on days 1, 3 and 12. This may be due to rest periods between the bouts of loading restoring the mechanosensitivity of the pre-osteoblasts, and thus speculatively enhancing the activation of bone formation. Our findings suggest that intermittent loading is important for re-sensitising pre-osteoblast cells and should be considered when attempting to maximise the osteogenic effects from loading.

Ameliorating menstrual cycles symptoms – an education intervention in elite volleyball players

Esther Goldsmith¹* and Georgie Bruinvels¹,^2
1Orreco Ltd
²University College London, London, UK
*Presenting Author

Physiological and psychological symptoms that occur as a result of hormonal changes in the menstrual cycle may negatively affect the performance of elite female athletes. The extent to which this occurs is highly variable, and may be influenced by genetics, nutrition, sleep, travel, psychological stress, and exercise training modality and load. Furthermore, dietary and lifestyle interventions have been found to be effective in reducing symptoms of premenstrual syndrome (PMS). However, athletes are rarely educated on changes that can occur during the cycle or how they can implement changes to their diet and lifestyle to mitigate against any potentially associated negative symptoms.

Aim: To evaluate the effect that menstrual-cycle specific education and minor dietary interventions can have on elite female athletes over four months of intense competition.

Twenty elite volleyball athletes, all representing the United States internationally, were given a 60 minute education presentation regarding the menstrual cycle and sports performance. Athletes were also provided with fish oil supplements and optional dietary support. Prior to the education, all athletes completed a bespoke online questionnaire to evaluate menstrual cycle history and characteristics, experience of menstrual cycle symptoms, and key aspects of their diet and lifestyle including perceived psychological stress and sleep quality, average daily fruit and vegetable intake, average weekly fish consumption and fish oil supplementation. Menstrual symptom index (MSi) was calculated in the menstrual, late follicular (mid cycle) and premenstrual phases. After 4 months, athletes repeated the questionnaire and MSi was re-calculated.

There was a significant reduction in MSi in the menstrual phase pre- and post-between time points (p <0.05); average MSi decreased by 7.1 ± 11.5. However, there was no significant change in MSi in the mid-cycle or premenstrual phases (p=0.4041 and p=0.1827 respectively). The most frequently cited symptoms pre-education were changes in mood, cravings/increased appetite, stomach cramps, and bloating; post-education the most common symptoms were changes in mood, stomach cramps, lower back pain and breast pain/tenderness.

Targeted menstrual cycle education may be beneficial in reducing female athletes’ experience of menstrual cycle symptoms during menstruation. However, symptoms are multifactorial in nature and a more longitudinal, multi-disciplinary education approach, with targeted intervention may be necessary to create behaviour change and subsequently significantly ameliorate menstrual cycle symptoms.

Organisers, John Hough and Jessica Piasecki, have written an article reflecting on its success of the Physical activity and the endocrine system 2022 meeting and the value of the Society Meeting Support Grant. Read it in the winter 2022 issue of The Endocrinologist.

Professor Peter Croucher is the interim Executive Director of the Garvan Institute in Sydney. His main research focus is tumours that grow in the bone, such as multiple myeloma, or those that metastasise to bone, including breast and prostate cancer. In this interview he discusses his career path which led him to bone biology, the exciting developments happening in his field and gives top tips for aspiring endocrinologists.

Tell us about your career so far

I did my initial training in zoology at Cardiff University, followed by a PhD in cell biology at the medical school in Cardiff. I then spent time in Cambridge before moving to the University of Sheffield to specialise in skeletal disease. After a stint at the University of Oxford I returned to Sheffield as a Professor of bone biology and ran the department of human metabolism. Here we set up an institute called the Mellanby Centre for Bone Research. Then 10 years ago, I was approached by the Garvan Institute of Medical Research in Sydney to lead their bone programme and I’ve been there since. Over the last few years, I’ve been head of various parts of the Garvan Institute, most recently the deputy director and then in the last three months, the Interim Executive Director. It’s pretty varied and has been an adventure, which has been fun.

What drew you to specialise in bone biology?


After doing zoology, I was offered the opportunity of doing a PhD in the medical school, and I worked with Juliet Compston, who is an expert on osteoporosis.. Since then I’ve always worked in skeletal biology, or cancer of the growing bone.

. “Probably my biggest highlight has been the ability to work with some wonderful colleagues”

Tell us about your current research

One of the major projects I’m working on is trying to understand why cancers grow in the skeleton. There are a number of cancers that grow in the skeleton with –  multiple myeloma is one example, and breast and prostate cancers can also spread from primary tumours to the skeleton. We do know that once they’ve spread to the skeleton, they’re difficult to treat and often regarded as incurable, causing devastating effects to the skeleton and bone disease. We are trying to understand why tumours grow in the in the skeleton, what controls an individual tumour cell when it first arrives in the skeleton and why these cells can live in a long-term, dormant state before they get woken up to form active disease. If we can understand what holds them in a dormant state and then what causes them to wake up this will help us identify new therapeutic targets in order to eradicate these cells and stop the cancers growing in the skeleton.

What are your career highlights so far?

My highlights are typically associated with the people I have had the pleasure of working with or with scientific discoveries associated with these collaborations. A good example was the first time we saw a dormant cancer cell in a living animal, and then being able to isolate those cells to work out all the genes that control the behaviour of those cells. This was a important as it opened up the prospect of being able to tackle an important clinical challenge for the first time. However, probably my biggest highlight has been the ability to work with some wonderful colleagues; both withi the Garvan Institute but also in laboratories across the globe. It is enormously satisfying to be able to work with great colleagues to be able to tackle important scientific and clinical questions.

What are the biggest challenges your field faces?

Some of the most exciting area are new imaging approaches, for example intravital imaging, which in our case is allowing us to find very rare cancer cells and study them for the very first time in living organisms. The advent of approaches to sequence an individual’s genome, or to work out all the genes that are switched on in a particular cell are exciting new developments. Being able to analyse this data at a scale that was not previously possible is truly exciting .

“Do things that are difficult and are going to have impact”

What are the most exciting developments happening in your field?

Some of the most exciting things are imaging approaches, which allow us to find very rare cancer cells and study them for the very first time. Also data science and the advent of approaches to sequence an individual’s genome, or to work out all the genes that are switched on in a particular cell and be able to analyse that at scale that we’ve never really had until the last couple of years. I think the developments and opportunities that come with these discoveries are really important.

What’s coming up at your SfE BES lecture?

I’ll be talking about how we’ve been successful in finding very rare, dormant cancer cells in the skeleton. We’ve been using single-cell sequencing approaches to identify the genes that control dormant cancer cells and the various specialised environments where they live. I’ll also explain how this provides important insights into what controls dormancy and how we might be able to use this information to target and eradicate these cells in the future.

What advice would you give someone starting out in the field?

I would say to identify an area that you feel passionate about, then to try and address an important question that’s going to have a big impact in that area. Do things that are difficult and are going to have impact.

You can attend Professor Peter Croucher’s 2022 International Medal Lecture “Insights into the Cell and Molecular Control Pathways that Regulate Cancers in the Skeleton“ on Tuesday 15 November from 9:00 – 9:30am.

Take a look at the full scientific programme for SfE BES 2022.

---

Professor Mark McCarthy is Executive Director of Human Genetics, and a Principal Fellow at Genentech, where he leads research in human genetics to advance molecular understanding of health and disease. In this interview he tells us about his career, the people who have shaped his experience in endocrinology and what we can expect from his SfE BES lecture.
 
Tell us a little about your career so far

I trained in medicine at the University of Cambridge, then St Thomas’, working through medical SHO and Registrar rotations at Barts and the London School of Medicine and Dentistry (the London). One of which was endocrinology, and that became my chosen specialty. I fell into the research program that Graham Hitman was leading at the London on the genetics of type 2 diabetes. The first couple of years of research were difficult, but by the third year, I felt I was making progress. To test my research confidence a bit further, I secured an MRC Fellowship in Boston with Eric Lander, which was pivotal. I came back to a position in the UK after that which was half clinical and half research, but as the years went by, I found myself doing more research and less clinical work. I moved to Oxford in 2002 as the Robert Turner Professor of Diabetic Medicine, where I led a global research group that focused on the genetics of type 2 diabetes, obesity and related conditions. In 2019, I moved to Genentech, to lead up their efforts in human genetics (across multiple disease areas), putting what I had learned in Oxford to support target and biomarker discovery.

What attracted you to endocrinology?

It was pretty clear from my time as a student that I was going to be a physician, not a surgeon. So I rotated through a series of medical SHO positions before ending up in endocrinology. Two things about that rotation convinced me that this was the direction I wanted to go in. First, I was fortunate enough to work for John Monson, the endocrinologist at the London, who was just the most fantastic mentor and paragon of medical excellence – I owe him a huge debt of gratitude. Second was the practice of endocrinology itself – endlessly fascinating, (mostly) logical, and, for many patients, transformative.

“The practice of endocrinology itself [is] endlessly fascinating, (mostly) logical, and, for many patients, transformative.”

What is your career highlight so far?

I had the opportunity to be part of the team leading the Wellcome Trust Case Control Consortium, which in the mid-2000s performed the first large-scale, genome-wide association studies. It was thrilling to be part of such a seminal study. We didn’t know if it was going to work out, and there were huge technical and computational hurdles that the team had to overcome, but the study really transformed the field of common disease genetics and set in motion the explosion in our understanding of these conditions over the past 15 years. During the project I was particularly involved in type 2 diabetes, which revealed the first common variant influencing the risk of obesity.

Who have been your mentors?

There were three people who had a significant impact on my career. John Monson, who instilled in me a passion for endocrinology and a commitment to the ethical aspects to practising medicine and science. Graham Hitman, who guided me through my first few traumatic years in the lab, and pushed me towards more computational and analytical research (which was a good thing since I was much safer with a keyboard than a pipette). And Eric Lander who welcomed me into his lab in Boston, and gave me the belief that I could thrive in research.

What do you think are the most exciting breakthroughs in your field?

We are going through a revolution in research that brings together three complementary advances. Increasingly we are able to gather genetic and genomic data with both massive scale and high resolution. This started with human genetics and the ability to do genome wide association scans (rather than having to look one gene at a time), but we see the same now in genomics, for example through the power of single-cell and spatial genomics. We are also now able to gather data in humans, rather than animal models, which to state the obvious is the species we are most interested in. That’s in part down to genetics, but also through developments in the research of cellular and organoid models from human sources. Finally, we have these awesome advances in computational methods (most obviously in machine learning and AI) which allows us to make sense of vast, complex and diverse data sets.

“We have these awesome advances in computational methods (most obviously in machine learning and AI) which allows us to make sense of vast, complex and diverse data sets.”

What are the biggest challenges your field faces?

Too much of the data we have comes from European populations, so there’s much more that needs to be done to ensure that we embrace diversity in research and translation. Also we still have some way to go to ensure that we make use of these rich and diverse data sets to guide us to safe and effective ways of improving patient care.

Tell us what’s coming up in your SfE BES 2022 Medal Lecture

One of the most exciting developments in human genetic research relates to the use of polygenic risk scores. These aggregate data across multiple small genetic effects, and are becoming increasingly powerful at identifying those at extreme (whether high or low) risk of disease; and in some cases, in dissecting some of the clinical heterogeneity that we see in many of these conditions (with regard to progression, complications, and therapeutic response). I am going to describe three examples from my own research that I hope will give some sense of the translational potential of these approaches.

Do you have any advice for aspiring endocrinologists?

Follow your passion.

---

You can attend Professor Mark McCarthy’s Dale Medal Lecture “Mining the genome for gold“ on Monday 14 November at 5:45 – 6:15pm.

Take a look at the full scientific programme for SfE BES 2022.

---

Professor Anja Eckstein is an ophthalmologist specialising in orbital inflammatory disease. She is the head of the orbital centre of oculoplastics and orthoptic at University of Duisburg, Essen. In this interview she tells us about her academic inspirations, challenges in her field and what we can expect from her SfE BES lecture.

Tell us about your career so far?

I trained as an ophthalmologist at Moorfields Eye Hospital, University Eye Hospital in Tübingen and at the University of Duisburg-Essen. Currently, I’m head of the department for oculoplastic and reconstructive surgery, the orbital centre, and the orthoptic department at the University of Duisburg-Essen.  While in medical school I started research with a project on isolated retina and measured light potentials in different cell types with microelectrodes. So I started off my career in the field of medical retina but switched later to the ocular adnex disease, and the main clinical and research focus in Essen are orbital inflammatory diseases.

“The opportunity to exchange knowledge with the members of this research association has always inspired me, I especially enjoy the sense of humour of my British colleagues”

Who is your academic inspiration?

 I would like to give special thanks to my British colleagues. Participating in the EU INDIGO (Investigation of Novel biomarkers and Definition of the role of the microbiome In Graves’ Orbitopathy) project under the lead of Professor Marion Ludgate from the University of Cardiff was a particular academic inspiration. It was great to work with colleagues from many EU countries. I have been a member of EUGOGO since 2006 and the opportunity to exchange knowledge with the members of this research association has always inspired me, I especially enjoy the sense of humour of my British colleagues. A special mention goes to my excellent colleague Petros Perros from Newcastle. And, my colleague Simon Pearce whose work I admire in bringing new therapies to patients with autoimmune thyroid disease. I would also like to mention the always fruitful exchange with my colleagues in EUGOGO and ITEDS.

What do you enjoy most about your work? 

In our orbital centre we have many translational research topics that have a direct impact on patient care. We conduct molecular research on both in vivo and in vitro models of Graves’ orbitopathy. Here we look for new targets for therapeutic intervention and new possibilities for prevention. We also participate in phase 2-4 clinical trials testing new targeted therapies for patients with Graves’ orbitopathy. As a member of EUGOGO, I have also been able to take part in other clinical studies. The great thing about translational and clinical research is that the results go directly to the patient and improve patient care.

What are the biggest challenges your field faces?

We do research on rare, autoimmune diseases. Most research funding goes to oncology and cardiology, so it can be difficult to get funding for our research. Furthermore, a lot of the large companies who perform approval studies for drugs are mainly interested in common diseases, which can make it difficult for our field to secure support. For this reason, though, it is all the more gratifying that targeted blockade of the thyroid stimulating hormones (TSH) receptor by autoantibodies and small molecules is being researched through several therapy options.

What are the most exciting developments happening in your field?

Definitely the studies currently exploring the targeted blockade of the autoantibody-stimulated TSH receptor. If successful drugs can be approved here, it will prevent a series of painful and major surgeries in patients with Graves’ orbitopathy.

“The great thing about translational and clinical research is that the results go directly to the patient and improve patient care”

What are you presenting at your SfE BES lecture?

I will be giving a historical overview of milestones in Graves’ disease research, and illustrating the impact that these discoveries had on the care of patients with Graves’ orbitopathy. I will also be highlighting both the importance of both in vivo and in vitro models, since this is a focus of our molecular laboratory. Furthermore, I will address the new EUGOGO guideline for the treatment of patients with Graves’ orbitopathy, and the challenges of some new drugs being available in the USA but not yet in Europe.

Do you have any advice for aspiring endocrinologists?

As an ophthalmologist, this is a bit difficult for me. But in general I would recommend attending many international and national scientific meetings and cultivating exchanges with colleagues. You always get new ideas for work.

You can attend Professor Anja Eckstein, the 2022 British Thyroid Association Pitt-Rivers Lecture “TED/GO from bench to bedside“ on Wednesday 16 November from 8:30 – 9am.

Take a look at the full scientific programme for SfE BES 2022.

---

Dr Maria Fleseriu is a neuroendocrinologist, she is Director of the Pituitary Centre and Professor of Medicine and Neurological Surgery at the Oregon Health and Science University in Portland, USA. Her work focuses on developing novel treatments for Cushing’s syndrome and acromegaly. Read our interview to learn more about her career path, what she loves most about her field, and a taster of her SfE BES 2022 lecture.

Tell us a little about your career path, so far?

I’ve always been fascinated with medicine. After learning how the heart’s mechanical valves and electrical system intertwined in the 6th grade, I became hooked. I would outline them on the foggy windows of my childhood home and my mum remembers how much work it was to clean the window smudges… After medical school, I trained in endocrinology in Romania, and subsequently completed another residency and then a fellowship at the Cleveland Clinic in the USA. I specialise in neuroendocrinology and currently hold two positions at the Oregon Health and Science University in Portland, USA.

Why did you choose to specialise in endocrinology?

During the first year of medical school, I became fascinated with the negative feedback system that regulates the hypothalamic-pituitary-axis. The fact that a pea-sized organ is the ultimate “master” gland intrigued me, so for my first research project I focused on improving imaging of the pituitary. This was the moment where neuroendocrinology became my passion.

Can you tell us about your current project?

My research focuses primarily on novel treatments for acromegaly and Cushing’s syndrome. I am also working to elucidate the extent and the recovery rate of pituitary dysfunction after surgical and/or other adjuvant therapies for pituitary adenomas. I have served as principal investigator or global principal investigator in multiple clinical trials studying novel chimeric molecules, new somatostatin multi-receptor ligands, adrenal steroidogenesis inhibitors, antisense oligonucleotide therapy and glucocorticoid receptor blocker use for the treatment of acromegaly or Cushing’s.

“I have great appreciation to the thousands of patients who have contributed time and energy for research studies, allowing us to better understand, and to discover new treatments for, this complex disease”

What do you love most about your work?

Although I’m no longer drawing on windows, I still get very excited about hormonal feedback! As the science and understanding of the pituitary gland improves, hopefully we will be able to diagnose pituitary conditions sooner. Early treatment could reduce complications and improve patients’ outcomes and I love to share the knowledge we’ve accumulated. When I saw my first patient with a pituitary tumour, almost 3 decades ago, all we had in terms of treatment was bromocriptine. We now have several classes of medications that we can use based on a “trial and error” approach, but personalised treatment regimens are increasing. I hope we will move closer to an individualised model, similar to that used in oncology.

What are the biggest changes in managing Cushing’s syndrome?

We face challenges at all stages, diagnosis can be difficult, especially in earlier, less ‘full-blown’ cases. The phenotype that we see is shared with several other conditions, which are much more common and necessitates physicians to be more aware of this syndrome, ‘to think about it’ and screen when needed.

Localisation can sometimes be challenging and the management itself can also be complicated, although we have better treatments, they don’t always work and recurrence rate in Cushing’s disease is quite high.

“Our mission is to educate our patients and medical community about hormones and promote innovative science – both of which will lead to better patient care. It is not easy, but it is fulfilling and rewarding”

Where do you see the next breakthrough happening in your field?

These are exciting times for specialists like me who have dedicated their career to the pituitary gland. Several histological and molecular markers have been developed that allow us to move translational research closer to the ‘clinic’. Physicians will soon have the right tools to predict the clinical course of pituitary adenomas more precisely and to develop individualised plans for management, also including patients’ preferences.

Could you tell us about your SfE BES 2022 lecture?

My lecture will highlight recent advances in management of Cushing’s disease, which should also consider comorbidities and complications associated that might compromise patient health and quality of life. I will discuss how treatments that specifically target certain pathways will create a paradigm shift in how we treat pituitary disorders, but WE ARE NOT THERE yet. I have great appreciation to the thousands of patients who have contributed time and energy for research studies, allowing us to better understand the aetiology and complications, and to discover new treatments for this complex disease.

Do you have any words of wisdom for future endocrinologists?

Pituitary disorders are complex and usually require a multidisciplinary approach. Every day, I communicate with a range of specialists, from neurosurgeons to gynaecologists, psychologists, and primary care physicians. While the hormones abnormalities are at the centre, they cause diverse health problems that warrant specific evaluation and management. Our mission is to educate our patients and medical community about hormones and promote innovative science – both of which will lead to better patient care. It is not easy, but it is fulfilling and rewarding.

You can attend Dr Maria Fleseriu’s Clinical Endocrinology Trust Visiting Lecture “Novel Approaches for Cushing’s Medical Management: Guidelines to Clinical Practice“ on Monday 14 November from 2 – 2:30pm.

Take a look at the full scientific programme for SfE BES 2022.

Joanne Brown is the first Endocrine Clinical Nurse Specialist at Stockport NHS Foundation Trust. She tells us about her nursing career path, experience at our Endocrine Nurse Update meeting and her role in the Society.

What inspired you to choose endocrinology?

My career started in theatres, recovery and then critical care. I completed an MSc in advanced practice whilst working within a busy regional neurosurgical centre. I then returned as an advanced critical care practitioner and independent prescriber for a couple of years. It was during my time working as an advanced nurse practitioner in neurosurgery that my interest in endocrinology was sparked. I then started to look for a job in endocrinology that would give me a better work life balance, but that I still found interesting and challenging.

What do you enjoy most about your work?

One of the best things about my role is how varied it is; I have my own nurse-led clinics for thyroid and I’m developing my knowledge for hyperparathyroid nurse-led clinics too. I also manage a weekly endocrine investigation unit, develop clinical protocols and standard operating procedures and produce patient information leaflets. I have led on a service evaluation and organised a way to receive patient feedback for the endocrine investigation unit. I teach and support patients and staff throughout the Trust about how to manage adrenal insufficiency safely. I am also a member of the Society’s Early Career and Nurse Committees. My role has also opened opportunities for me to be involved with writing for peer-reviewed publication and to participate in a podcast about my career. It is truly very varied.

“Being involved with the Society can enhance patient care or your services and will expand your knowledge, whilst building on your CV”

There is something special about supporting patients, for example, those who are newly diagnosed with adrenal insufficiency, teaching them and their family members; being there for them when they have concerns or questions. It’s rewarding to have a long relationship with patients and understand how their disease impacts on them personally.

What you are most proud of in your career so far?

I am really proud to be the first endocrine clinical nurse specialist at Stockport NHS Foundation Trust and I believe my role is now making a difference to patient care. Setting up an endocrine investigation unit was challenging but a huge achievement and is benefitting patient care and management. I’m also proud that I successfully managed to contact all our patients with primary or secondary adrenal insufficiency during the start of the COVID-19 pandemic to provide them with support regarding sick day rules. I haven’t yet completed any research, though I have an interest in patient experience and would welcome research opportunities in this area.

How has the COVID-19 pandemic affected your research work?

I started my role just before lockdown, so I can’t really compare it to before COVID-19. However, during the pandemic whilst face-to-face clinics were cancelled, we set up a telephone clinic. I could run the clinic from home, contacting our patients with primary or secondary adrenal insufficiency and provide education about sick day rules and COVID-19. I also ensured that each patient had an emergency injection kit prescribed and were provided with a new steroid emergency card. This clinic proved that some elements of our jobs can be completed over the telephone, it also highlighted that many patients prefer face-to-face contact. I think it’s important and beneficial to be able to offer a range of appointment styles to patients, to support their preferences and clinical need.

How did you enjoy your first Endocrine Nurse Update meeting?

It was so nice to meet other endocrine specialist nurses from around the country and swap contact details, to support each other. It was fantastic to meet members of the Nurse Committee too and to be involved as a speaker. It was all such a great experience.

The lectures were all interesting and relevant, I particularly enjoyed the clinical case presentations and steroid management group session, which gave me a lot to think about how I could improve my practice. The exhibition stands enabled me to speak to various support groups and that has proven very beneficial.

Since attending the meeting I have placed thyroid information leaflet QR codes in our out-patient area to make the information more readily accessible for patients.

I have also been supported by the Addison’s Disease Self-Help Group and carried out a successful Addison’s Disease Awareness Day event at Stockport NHS Trust for staff.

What have you gained from joining the Early Career Committee?

“I would recommend getting involved in events and any activities that are advertised through the Society, it’s an excellent way to meet other endocrine specialist nurses”

The Society website had lots of supportive information that benefitted me as a new endocrine specialist nurse, so I joined to gain full access to the nursing resources. The Society helped me to contact an experienced nurse who listened to my plans and ideas for my role and offered me support, guidance and encouragement. I then presented an Endocrine Nurse Skills webinar on nurse-led clinics, and hosted another.

These were both great experiences and something I hadn’t done before, so I found it all really interesting. I then applied to be part of the Early Career Committee, as I had ideas about how early career nurses could be better supported by the Society. It has also enabled me to be a voice regarding what other early career nurses feel would benefit them. I then applied for a position on the Nurse Committee, which is useful for linking early career ideas into the Nurse Committee and fantastic for supporting the wider nursing community.

What do you think are the biggest challenges in your field?

The biggest challenge I find is managing patient expectations with limited resources, when we all want the patient experience to be good. There is a lot of pressure on the service for appointments with the consultant team. There is much more that could be done by a clinical nurse specialist and I would hope in the future to expand the service. Patients are however very grateful for my support and the part I play in their care.

Would you advise others to apply for roles within the Society?

I would recommend getting involved in events and activities advertised through the Society, it’s an excellent way to meet other endocrine specialist nurses. I received peer support from Emily Falconer, who was also relatively new to her role at the time when I first started my job.

Being involved with the Society can enhance patient care or your services and will expand your knowledge, whilst building on your CV. Check the Society’s website for details of the committee roles available and I’m always happy to talk to you about the role and the areas I am involved in, so feel free to contact me too.

How have mentors helped your career so far?

My clinical mentor is Dr E.D Aflorei, who has been incredible at supporting me to build my knowledge, experience and confidence with patients. Dr Aflorei also encouraged me to join the Society. I will remain grateful for this advice as it enabled me to contact Sherwin Criseno, who then supported and guided me. Sherwin helped me to focus on the Society for Endocrinology Competency Framework for Adult Endocrine Nursing a bit at a time, rather than feeling overwhelmed with it all and guided me with regards developing clinical guidelines and patient information leaflets.

Support from a nurse mentor and clinical mentor is essential when you are developing your role, it gave me confidence to get involved in Society activities too and reach out to other nurses across the country. Working as the only endocrine specialist nurse in a district general hospital could feel lonely, but knowing I can contact many nurses, very easily, really does support me in my practice.

Visit our dedicated endocrine nurse careers webpages for more advice and opportunities.

• Twitter
• Facebook
• LinkedIn