Many people living with pituitary conditions depend on daily medications to manage their health. These medications may be necessary to prevent life-threatening situations, such as adrenal crisis or hyponatraemia. Other medications may be essential to maintain general wellbeing and prevent ill-health.
These essential medications include
- Hydrocortisone
- Prednisolone
- Desmopressin
- Oestrogen
- Testosterone
- Levothyroxine
We believe it is important that those who take essential hormone replacements have prescriptions that issue at least a three-month supply of medication. This is to prevent you from running out and to avoid inconvenience with the regularity of prescription requests. For some medications, like glucocorticoids, it is necessary to have extra supplies to allow you to increase your dosing when following the Steroid Sick Day Rules. Having a longer prescription helps with this.
Earlier this year, we became aware that many people are having trouble getting longer prescriptions for their hormone replacement medication. In response, we launched the 'prescription of essential meds' project, to find out more about this issue and provide support for those affected.
What this project involved
- Surveying our community about their prescription lengths
- Creating template letters that you can use to ask your GP for longer prescriptions
- Creating an 'Adrenal Insufficiency Action Plan' to support those with adrenal insufficiency
- Submitting our survey research to the Society for Endocrinology BES conference, to raise awareness of this issue with clinicians
Why are longer prescriptions needed?
Having a prescription that only gives you one or two months' supply can make it harder to manage your health and medication dosing. Shorter prescriptions mean more frequent requests to your GP, more trips to the pharmacy and less medication security if you lose some, are travelling or if there are supply issues. Having to manage all of this can be stressful and cause anxiety for people who may already be dealing with the stress of a long-term health condition.
Why is this important?
Having longer prescriptions is especially important if you take life-sustaining medication, such as desmopressin or steroids. For those who take steroids, having longer prescriptions is also important to ensure you have enough extra medication to increase your dosing when following the Steroid Sick Day Rules, to prevent an adrenal crisis.
The National Institute for Health and Care Excellence (NICE) recommends that patients with adrenal insufficiency "maintain a good supply of oral medicines at all times, including when travelling or moving between places of residence and [know] how to obtain additional supplies if needed for sick day dosing." Therefore, it is very important that people with adrenal insufficiency can get longer prescriptions and have extra supplies of steroid medication.
Our prescription length survey
We wanted to find out how many people are not receiving longer prescriptions, so we turned to our community for help. We surveyed over 1,300 people with diagnosed pituitary conditions, who had been prescribed at least one of the essential hormone replacement medications listed above.
From the 1,399 people surveyed, 97% had prescriptions that were for less than three months. 60% of people surveyed only had prescriptions for a one-month (or 28-day) supply. You can see the summarised results below.
This work was carried out in collaboration with Addison's Disease Self-Help Group, who also shared a similar survey focusing on prescription lengths for steroid medication. Between our two organisations, we received over 1,700 responses.
We want to thank everyone who took part in these surveys. The data has provided valuable insights into an issue affecting many in our community, and has enabled us to come up with recommendations and materials that patients and clinicians can use to address this.
Materials to support you
Steroid prescription letter
Use this letter to ask your GP for a 3-month prescription of your steroid medication, for your adrenal insufficiency.
Download for free or order
Hormone replacement prescription letter
Use this letter to ask your GP for a 3-month prescription of your hormone replacement medication. This includes:
- desmopressin
- oestrogen
- levothyroxine
- testosterone
Adrenal Insufficiency Action Plan
This action plan is a useful resource for anyone with adrenal insufficiency or Addison’s disease, to record essential medical info and share with others to make them aware of your condition.i
Download for free or orderOur recommendations for patients
As a patient, there are some things you can do to raise awareness of your condition and why you need longer prescriptions.
Share our template letters with your GP
Fill out and share these letters with your GP to request longer prescriptions of essential hormone medications. If you have take steroid replacements and other hormone replacements, use both letters.
Fill out and share the Adrenal Insufficiency Action Plan
If you have adrenal insufficiency, use our Action Plan to tell others about your condition and medication needs. This Action Plan also has helpful reminders of the Sick Day Rules and signs of adrenal crisis.
Our recommendations for clinicians
If you are a clinician, please follow these recommendations to support your patients living with pituitary conditions.
Support your patients with their requests for longer prescriptions
Ensure your patients have access to a three-month prescription for their essential hormone medications and prompt this on clinic letter outcomes. For patients with adrenal insufficiency, this is particularly important to allow them to follow Sick Day Rules and prevent an adrenal crisis.
Provide a separate supply of steroids to patients whose medications are dispensed in a dossette box
For patients with adrenal insufficiency whose steroids are dispensed in a dosette box, it is essential to provide a separate supply of steroids, to allow patients to increase their dose when following the Sick Day Rules.
Share our template letters with your patients
Share our template letters with your patients and support them in asking their GPs for longer prescriptions.
Share the Adrenal Insufficiency Action Plan with your patients
Share this action plan with your patients who have adrenal insufficiency or Addison's disease, to support them in managing their condition.
Getting the word out to clinicians
In March, The Pituitary Foundation and Addison's Disease Self-Help Group took our survey findings to the British Endocrine Society conference!
We spoke with many endocrinologists, nurses and other healthcare staff about this research and what they can do to support their patients. Our research poster was also awarded a 'highly commended poster' award.
Tell us what you think
We want to know what you think of our template letters and action plan. We also want to know how GPs respond to the template letters, and if they help you to get longer prescriptions. We are also interested in hearing from clinicians, to know if these materials are useful to your practice and patients.
If you have feedback on these items that you would like to share, please let us know by emailing [email protected]
Frequently asked questions
The template letters have all the information your GP needs to know, to increase your prescription lengths. All you need to do is fill in your personal details (such as your name, NHS number, endocrinologist details and what prescriptions you take) and give this to your GP.
You can download the letters for free from our website, and either send them digitally or print them out yourself. You can also order paper versions from us. These will be sent to you in the post. We charge a small fee for this, to cover printing and postage costs.
Yes. We think it would be a good idea to also send these letters to your endocrinologist, to let them know that you have made this request of your GP.
If you have adrenal insufficiency and another pituitary condition that needs treatment with one of the other hormone replacements listed, you should use both letters. Fill out both letters and share them with your GP. You may also want to let them know that you are sharing two similar letters about this, to make sure they are both responded to and not assumed to be the same.
- NICE guidelines for managing adrenal insufficiency: These government guidelines outline how adrenal insufficiency should be diagnosed and treated in the UK. They provide information on Sick Day Rules, clinical management and advice for prescriptions and medications. They are made for clinicians to follow but they can also be helpful for patients who want to know more about their treatment.
- Society for Endocrinology guidance on Sick Day Rules: Information for patients and clinicians on how to follow the Sick Day Rules
- BMJ e-learning module on adrenal crisis: An online learning course for medical professionals to help you spot the signs of adrenal crisis and know what to do
Move Your Way: The Pituitary Challenge
When is this happening?
The challenge runs from April 1st to April 30th 2026.
Location
Anywhere! Get moving in your living room, local swimming pool or park, or somewhere else.
How much does it cost?
Nothing! This challenge is free to sign up for, and there is no minimum sponsorship needed. We just ask that you raise what you can to support our work.
Movement target
Choose whatever feels like a challenge for you - this could be walking 5000 steps a day, or swimming every day throughout the month.
Move Your Way: The Pituitary Challenge
Get moving this April with our community movement challenge! You can choose whatever type of movement works for you and set your own movement goal. It's a great way to get active and fundraise to support our work.
Pituitary conditions can affect energy, mobility, mental health and everyday life. That’s why this challenge is about moving in a way that works for you. Whether you walk, cycle, row, stretch, or swim, you can help fund trusted information, specialist help, psychological support and vital services for people affected by pituitary conditions across the UK.
By getting involved, you can:
- Get more active and improve your fitness
- Try out a new activity, like running, swimming or dancing
- Set a movement goal that feels achievable for you
- Raise money to help support everyone affected by pituitary conditions
- Claim your FREE Pituitary Foundation t-shirt to wear for the challenge
Your movement, your pace, your way.
How to get involved...
Sign up using the links on this page and choose what kind of movement you want to do and what your movement goal will be. You can sign up on your own or take part with friends, family or even colleagues!
This event is completely free to sign up for!
Set up a fundraising page on Just Giving and choose your fundraising target (take a look below for how to do this).
There is no minimum sponsorship amount for this challenge – just raise what you can. You don’t need to wait till April to start fundraising. In fact, we suggest you start as soon as you sign up – the more time you have, the more you can raise!
Join our Move Your Way WhatsApp group to see what other fundraisers are doing and to feel inspired to reach your goal. You can share your own photos, tips and progress. You will receive a link to join this group after signing up.
Get moving! As soon as April starts, it’s time to get out there and get going. From April 1st to April 31st, focus on getting active and hitting your movement goal.
You can use your Just Giving page to track your movement and share your progress.
Looking for inspiration?
Meet the fundraisers who have already signed up for the Move Your Way Pituitary Challenge. If you would like to be featured on our fundraising wall, please email [email protected]
As a team, we will be walking 1 million steps throughout April to get moving and raise money!
I am walking 30-minute's every day in April! This is such an achievement for the girl who was left wheel-chair bound 1 year ago, due to Cushing's
Me, my husband Matt and our daughter Grace are walking 500km together, due to our son Freddie being diagnosed with several pituitary conditions.
My mum and i will be walking 100K steps in march and raising money to help fund the Pituitary Foundation!
We’re planning to walk the Exe Estuary from Dawlish to Exmouth, roughly 18 miles!
I will be swimming a half marathon in April!
I will be completing a 30-minute walk every day throughout April. I am raising money for The Pituitary Foundation as they have been a big help to me.
As part of the Move Your Way challenge I will be running the London Landmarks Half Marathon and taking part in our team challenge of 1M steps!
My goal is start and keep up a regular pilates practice - at least 15 minutes a day for all of April! I will also be joining our team step challenge.
I will be taking on the world's fastest seated zip line as part of the Move Your Way challenge!
Throughout April, I will be walking 10,000 steps a day, or cycling 10 km!
Not used Just Giving before?
Read our intro guide to find out how to set up a Just Giving fundraising page
Find out more
Join our Just Giving team page!
Once you have set up your Just Giving page, you can connect your individual page to our #TeamPituitary team page.
Join nowFrequently asked questions
The Move Your Way Challenge is a month-long movement and fundraising challenge taking place throughout April 2026. The idea is that people get involved by choosing a type of movement they want to do, setting a goal for that movement and then working towards that goal throughout the month.
A lot of fundraising challenges are designed around a set type of movement (like running), which may not work for everyone. We wanted to create a challenge that everyone can take part in, so that whatever way you want to move, you can do it!i
This is also a fundraising challenge, as friends, family, colleagues and others will donate to your fundraising page to support your efforts. There is no minimum sponsorship amount that you need to reach to take part. However much you raise will make a huge difference to people affected by pituitary conditions.
Yes! What’s so great about this challenge is that it can be whatever you want it to be. If the goal you set at the start feels too much or too little, you can change it if you wish. The whole idea is to get active, how you choose to do this is up to you.
Your movement, your pace, your way!
- Go to www.justgiving.com and set up a fundraising account and fundraising page
- Choose ‘The Pituitary Foundation’ as the cause you would like to support
- Fill in the details of your fundraising event and set a target fundraising amount
- Personalise your page – here you can add details of what your movement goals are, add photos and track your progress
- Connect your individual fundraising page to our Team Pituitary Move Your Way page, by following this link.
We are happy to help sign people up or help with setting up fundraising pages. Give our office a call on 0117 370 1333 if you have any questions, and we can give you a hand.
After last year's success, we are bringing back the Big Give! This is a way to make your generous donations have an even bigger impact.
We were blown away by your incredible support of last year's Christmas campaign, so we have brought it back for a second year. We sincerely thank everyone who took part last year, for their generous support of our work. After last year's success, we wanted to ask if you would kindly consider supporting our Christmas Challenge 2025.
What is the Big Give?
The Big Give is a charity partner who run matched fundraising campaigns, to help charities maximise their donations. They are running the Christmas Challenge that we are taking part in.
Double your donation for no extra cost!
Our Christmas Challenge Big Give campaign will run from 12pm (midday) on Tuesday 2 December to 12pm (midday) 9th December. During this time, all donations made via the Big Give website will be matched (up to £5,000)!
What does matched fundraising mean?
Our Christmas Challenge is supported by a few generous pledgers, who have pledged to match any donations we receive. If you donate to our Christmas Challenge, your donation will be matched by our pledgers. This means that your donation is effectively DOUBLED, without you needing to spend any more money!
If you are a UK tax-payer and eligible for Gift Aid, this also increases your donation even further! (You don't need to do anything to pay this - the government pays it on your behalf.)
For example...
How do I donate?
It's easy! Simply follow the steps below to get involved.
From 12pm Tuesday 2 December:
- Go to our page on the Big Give website
- Donate through the page
- See your donation matched by our pledgers!
On behalf of everyone affected by pituitary conditions in the UK, thank you for your support this Christmas.
How your support helps us
Thanks to your support, we were able to make some great changes! We have brought on a new staff member who is managing our health information booklets. This helps to give you better, more updated health information that can support you though your pituitary journey. Feedback from you, our community, has highlighted how crucial these resources are through every step of diagnosis, treatment and life after.
Over the past year we have also introduced a brand new counselling service to our portfolio, which has been invaluable to many. We’ve hosted three ‘Get-Togethers’ across the UK which have been very well attended, hosted a dedicated Acromegaly Day in London and we have continued to make great strides in ensuring that we are there for everyone in the pituitary community.
We want 2026 to be even better, and with your support we can do this!
This year, Trustees’ Week is taking place from the 3rd to 7th November 2025. This is a national celebration which aims to recognise and celebrate the vital work of trustees.
The Pituitary Foundation is lucky to be led by an excellent team of eight trustees and is in the process of welcoming three additional new members.
Our trustees play a vital governance role, ensuring The Foundation operates effectively and in line with our mission and objectives. Our trustees help set strategic direction, oversee financial management, ensure compliance with legal and regulatory requirements, and support our CEO and staff.
I wanted to contribute to the work The Foundation does to support those affected by pituitary conditions. - Jenny Phillips, trustee
Trustees also act as ambassadors for The Foundation, using their skills and experience to guide decision-making and promote the charity’s work. This can be anything from presenting at external events on our behalf to even attending our regional conferences.
Our trustees, like our members and volunteers, are spread across the UK, with the furthest distance between two trustees being Exeter to Edinburgh! Our trustees mainly stay in touch virtually, but they come together in-person at least once a year in Bristol.
Working with a team that is genuinely dedicated to improving awareness and providing resources brings a deep sense of fulfilment - Debbie Cooper, trustee
Our trustees each bring a vast range of experience to the Board, including financial, legal, policy, advocacy, clinical, lived experience of pituitary conditions, and more.
The Pituitary Foundation undoubtedly couldn’t do the work it does without the guidance and support of our wonderful trustees! So, we want to say a huge thank you to them, for their continuous contributions to our community.
Find out more about our trustees below.
The Foundation’s mission resonated with me and I was eager to support its initiatives - Debbie Cooper, trustee
Welcoming New Trustees
This year, a number of our existing trustees reached the end of their term and retired. This came after many years of dedicated support to our work, which we are incredibly grateful for. As a result, we have now recruited 3 new trustees to join our Board. This includes...
Nazifa Chowdhury
Nazifa is a barrister and former solicitor who is keen to bring her experience in the legal field to support The Foundation to achieve its vision, mission and 2023-2027 strategy. She joins our Board as a legal expert, to support the running of The Foundation and our wider work.
Dr Niki Karavitaki
Niki has been a member of our Medical Committee for many years and recently joined our Board of Trustees, as a medical trustee.
Niki is a professor of endocrinology at the University of Birmingham and an honorary consultant endocrinologist at the University Hospitals Birmingham NHS Foundation Trust. Her clinical and research work mainly focuses on hypothalamo-pituitary conditions, and she has published extensively on the field. She is a co-lead of the Pituitary Service and leads the academic clinical training in Endocrinology and Diabetes at the University of Birmingham.
She is actively involved with national and international endocrinology bodies and societies (including the Society for Endocrinology UK, European Society of Endocrinology, European Neuroendocrine Association and Endocrine Society USA). She has contributed to the development of various international consensus and guidelines on pituitary disease and she is deputy editor of the European Journal of Endocrinology.
Sherwin Criseno
Sherwin is a long-standing member of our Medical Committee and recently also joined our Board of Trustees as a medical trustee.
Sherwin is a consultant nurse in endocrinology at University Hospitals Birmingham NHS Foundation Trust, where he leads the largest team of specialist nurses in endocrinology in Europe. With a clinical focus on pituitary tumours, adrenal insufficiency, andrology, metabolic bone and calcium disorders, adult growth hormone deficiency, and the late effects of cancer treatment, Sherwin brings extensive expertise to some of the most complex areas in endocrine care.
A passionate advocate for patient empowerment, he champions education, collaboration, and meaningful engagement as essential components of high quality care. Sherwin holds several national leadership roles. He is a trustee of the UK
Society for Endocrinology, a member of both the NICE Osteoporosis Clinical Guideline Committee and the NICE Osteoporosis Quality Standards Committee. He also serves as an honorary associate clinical professor of nursing at the University of Birmingham.
In parallel with his clinical and academic roles, Sherwin is undertaking doctoral research as an NIHR clinical doctoral research fellow, with a focus on growth hormone deficiency in adults.
Being diagnosed with a rare, long-term health condition in your early years can be challenging for young people and their families. A lot of young people with pituitary conditions feel different from their friends and worry about missing out on normal childhood experiences, such as school, holidays and further education.
Whilst there will be additional things to consider to manage a child's condition and help them stay healthy, it's very possible for them to have the same experiences as friends and other young people. Below are a few inspiring stories from young members of our community, who haven't let their pituitary conditions hold them back.
Young people's stories
Defying expectations and shaping your own experience
Since being diagnosed with panhypopituitarism in childhood, Aleha struggled with the limitations placed on her by others. Instead of being defined by her condition, she chose to push past others’ expectations and decide for herself what her future would look like.
Longer reads and videos
Jess' tips for school and studying
Jess shares her top tips for making school easier if you have a pituitary condition.
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Learn more
In this talk, Indi and Helen discuss the signs to look out for that could indicate a pituitary condition in childhood, such as delayed or excellerated growth and puberty. They also explore the treatments available for pituitary conditions in childhood and how to be prepared for adrenal crises situations in children.
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Learn more
Further information
Child Growth Foundation
The CGF provide expert information and support for children with growth conditions, including those caused by pituitary conditions. They have a great selection of videos and infographics for parents and children
See more
Young Minds Trust
The Young Minds Trust provide mental health support for young people and their parents.
View their website
Our Young People’s Support Group regularly meets online and provides community and support for young adults (18-30) with pituitary conditions. You can sign up to their next meeting or follow them on Instagram, @young.people.support.group
Find out more
For many people, a diagnosis of a pituitary condition is life-long. This can impact different aspects of your life, from school and education, to work, relationships, family life and more. At The Pituitary Foundation, our role isn't just to inform you about pituitary conditions and their management. We are also here to help you live well with a pituitary condition, whatever stage of life you are in.
This is why, for Pituitary Awareness Month 2025, we've created our 'A Lifetime of Hormone Health' campaign; to share stories, resources and information to support you and your hormone health, throughout your life.
Take a look at our Lifetime Content below, to find resources to help you. We hope you will find comfort and support in the content shared, and will feel empowered to manage your pituitary condition across your life.
Explore our Lifetime Content
How you can get involved
Join our online events
Share your own pituitary pathway
This month, we're asking our community to get involved with 'A lifetime of hormone health' through sharing your own lifetime journey with a pituitary condition.
You can download and print out your own pituitary pathway, to share your journey and your own pituitary milestones. If you would like to have your pituitary pathway featured on our wall below, email it to us at [email protected]
You can also share your pathways on social media! Be sure to tag us in your photos and use the hashtag #ALifetimeOfHormoneHealth
It’s #VolunteersWeek! This is celebrated every year during the first week of June, and is a great opportunity for us to say an extra special thank you to our own volunteers and to let our members know more about our brilliant team.
As a charity, we simply would not be able to provide the services that we do without our volunteers! The support they provide to patients, the awareness they raise and the contribution they make to our charity and the pituitary community is invaluable.
Meet some of our volunteers!
Click on the profiles below to learn more about each volunteer and their role.
Want to get involved?
If you would be interested in becoming a volunteer, please email Nesta at [email protected] . We would be thrilled to welcome you to our amazing team! You can also keep an eye on our vacancies page, to see what volunteering opportunities we have available.
You can also get involved by joining in with our campaign on social media! Throughout the week we will be sharing our volunteer's stories and saying thank you for all the amazing work they do. You can like, comment, save and share our posts to show our volunteers your support.
How long have you been a volunteer at The Pituitary Foundation, and why did you start volunteering?
I officially became an ambassador for The Pituitary Foundation in October 2023, but my connection with The Foundation goes back nearly two decades. I was diagnosed with acromegaly in 2004 and from that moment, The PF became a real source of support - its resources, and the wider community, have helped me navigate the complexities of living with a pituitary condition.
Over the years, I found myself naturally stepping into a support role - signposting others to PF resources, sharing my experiences, and offering encouragement.
Becoming an ambassador, a volunteer role, felt like the natural next step - a way to combine my personal journey and professional background to give back and help amplify The Foundation’s incredible work.
What have you enjoyed most about being a volunteer?
What I’ve loved most is being able to bring the real, lived experience of a pituitary condition into the conversation - everything from the shock and complexity of reaching a diagnosis, to the ups and downs of treatment, and ultimately, learning how to live well with it.
I’m a passionate advocate for empowering patients to speak up for better care and treatment, and being an ambassador has given me a platform to do just that. I also enjoy using my professional experience in the NHS and life sciences to support The Foundation in practical ways—whether it’s helping to find venues, reviewing documents, or contributing to strategic discussions. It’s a great blend of heart and head.
Do you have a story of your favourite moment as a volunteer?
Well, I did recently abseil off Anfield Stadium to raise funds—which was memorable, if not exactly my favourite moment!
But the real highlights for me have been speaking at two major events—WAPO and BES - where I shared my story as a patient with audiences of clinicians, researchers, and fellow advocates. I love public speaking, and these opportunities allowed me to bring a patient’s voice into spaces where it’s often missing. I truly felt like I was helping to shift perspectives.
Why would you recommend volunteering?
The Pituitary Foundation is a powerhouse of support - offering everything from information about the many pituitary conditions and nurse helplines, to mental health services and peer connections. Volunteering is a meaningful way to give back to a community that gives so much.
Whether you’ve been directly affected by a pituitary condition or simply want to make a difference, your time and energy can have a real impact.
What would you say to anyone who’s considering becoming a volunteer?
Volunteering isn’t one-size-fits-all. You don’t have to climb mountains (or abseil off stadiums!) to make a difference. There are so many ways to get involved—joining the Lived Experience Committee, supporting local meetups, writing for the magazine, or helping with fundraising. Think about what you enjoy and what you can offer, then reach out to the PF team. They’re incredibly supportive and will help you find the right fit. Just take that first step—you won’t regret it.
Meet Debbie, a member of our Board of Trustees who has supporting The Foundation since 2021.
My Story
I have been serving as a non-executive director (NED) at The Pituitary Foundation since 2021. In my role, I focus on safeguarding, information security, enhancing our approach for interacting with medical professionals and the pharmaceutical industry, including projects and supporting strategic planning, governance and outreach programs.
Why I Volunteer
My motivation for volunteering stemmed from a personal connection to the cause. I wanted to contribute my skills to an organisation that is making a significant impact in the lives of those affected by pituitary disorders. The Foundation’s mission resonated with me and I was eager to support its initiatives. When I was first diagnosed with arginine vasopressin deficiency (AVP-D, previously known as DI) in 2010 and then latterly when I became gravely ill with complications in 2019, The Pituitary Foundation offered a rare light of hope. The combination of patient-specific information and compassion helped me to feel understood, but more importantly provided practical avenues for support and expeditious treatment.
What I have enjoyed most about being a volunteer is the sense of community and the opportunity to connect with individuals who share a passion for supporting others. Working with a team that is genuinely dedicated to improving awareness and providing resources brings a deep sense of fulfilment.
Moreover, I appreciate the learning opportunities; each experience I’ve had has contributed to my personal and professional growth. In recent years, I have been fortuitous to be invited to contribute as a patient expert to a number of initiatives including; development of NHS protocols for the treatment of patients with AVP-D and COVID, information videos to educate patients and healthcare providers about pituitary conditions and available treatments and clinical guidelines for AVP deficiency involving members from both the American and European Endocrine Societies. I have also been involved in talks for patients and contributions to other groups, like the Pituitary Society and the Endocrine Society.
I am in a serendipitous position as both a research scientist and patient. This was particularly helpful in ensuring the standardisation of medical terminology to improve data interoperability and that it is correctly included in Medical Dictionary (SNOMED) for scientific and medical use. I have also been involved in liaising directly with the health agencies and drug marketing authorisation holders in response to drug shortages caused by manufacturing and supply chain challenges.
One of my favourite moments was as a contributor to the Global DI Renaming Group, as the patient representative. This resulted in the name change from diabetes insipidus to arginine vasopressin deficiency globally and publication in a number of medical journals worldwide. It was recognised that the term "diabetes" was resulting in was poor patient care due to the confusion with diabetes mellitus. I have heard inspiring testimonials from patients and physicians, where our efforts may have resulted in a patient having much better outcomes.
To anyone thinking of volunteering...
I would highly recommend volunteering because it offers a unique opportunity to make a tangible difference in people's lives. The experience not only allows you to give back but also helps you develop new skills and build relationships with like-minded individuals. I believe that being part of a cause that you care about can be incredibly rewarding and enriching.
To anyone considering becoming a volunteer, I would encourage you to take the leap! Volunteering is a wonderful way to engage with a cause that matters to you and to learn from others along the way. Whether you have a specific skill set or simply a desire to help, your contribution can be valuable. Don’t hesitate to reach out—I would be happy to share more about my experiences or answer any questions you may have.
My Story
Hi, I’m Phil, happily married and happily retired! I have two children and four grandchildren.
I suppose my pituitary journey began well over 20 years ago when the first symptoms of my prolactinoma became apparent. Several years later, after going down several blind alleys, the diagnosis was finally made, treatment began, and the tumour was removed. I’ve happily taken the tablets, creams and injections ever since. After all, they keep me well and alive!
I was living abroad at the time, and was seen by specialists in Luxembourg, France, Belgium and Germany! Truly an international tumour. I now live in the UK. After diagnosis I felt quite lost, worried and alone. I took great comfort from finding The Pituitary foundation online, and after making contact I was contacted by a telephone buddy. I found this human contact very reassuring and helped me a lot on my pituitary journey. The information available on the foundation website l also found invaluable.
Why I chose to volunteer with The Pituitary Foundation
This contact with The Foundation and a visit or two to conferences made me want to help others in similar positions as well. After some training, I became a telephone buddy. I have been a buddy for over 15 years I believe, and also had several years volunteering on the telephone help desk.
What do you enjoy most about your role?
I doubt if I have a favourite story of my contacts as a buddy, as each contact has been worthwhile and interesting. I hope I have been able to offer some useful advice through my own experiences and training, and of course a listening ear. At the very least we are able to signpost others towards useful information they may not be aware is available out there. I have also learnt much from the people I have interacted with.
I would encourage those who are able to volunteer, as it is rewarding and can be of great comfort to fellow travellers who are just starting out on their own journey. You feel a useful small part of The Pituitary Foundation team, who do so much to bring this illness out of the shadows. Contact Nesta today and see how you could help out!