Celebrating 20 years of AMEND (2003-2023)


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 20th 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.

Meet Claire Stirling, endocrine nurse specialist and poster-award winner at SfE BES 2022

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’.

Learn about the Masters-Level Module in Endocrine Nursing from course graduate August Palma

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.