Vick Smith FRSA

Executive Director for a small but mighty UK charity. All views = own. 29th May = #AddisonsDiseaseDay

[Vick Smith FRSA @commvicked]

@GiuliaBould #AddisonsQA oh crikey! What a way to make you feel small and scared for speaking up. Glad you feel empowered now to work to improve this!

[Vick Smith FRSA @commvicked]

Q7. An app on my mobile phone telling me all my Addison's Disease reksted hormone levels - and a forecast advising me to put my feet up, take more meds, go for it and do the park run, or hop it to hospital :-) #AddisonsQA #AddisonsDiseaseDay

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

Q7. If you could wave a magic wand, what would be your wish be for those living with Addison’s disease & adrenal insufficiency? 🪄

#AddisonsQA #AddisonsDiseaseDay #RareReality

[Vick Smith FRSA @commvicked]

#AddisonsQA @JamesPagetNHS Have been very proactive in inviting patients like me with Addison's to speak to their medical students while their studying #Endocrinology. They meet an expert patient, learn how to spot early signs of Addison’s and care for crisis #AddisonsDiseaseDay

[Vick Smith FRSA @commvicked]

@Anna_L_Mitchell @AddisonsUK A5. Interim contact is essential. Many people with Addison's don't realise they can contact their consultants secretary between appointments and tend to ask their GP instead, or google it! #AddisonsQA#AddisonsDiseaseDay

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

A5:
✅Engage
✅Educate (sick day rules)
✅Equip (sufficient glucocorticoid supplies, steroid emergency self-injection kit)
✅Empowerment (steroid emergency card, COVID guidelines) to prevent adrenal crises

https://t.co/yhruspqzlt

#AddisonsQA #AddisonsDiseaseDay @CrisenoSherwin

[Vick Smith FRSA @commvicked]

A4. Sorry to hear this Giulia,I experienced the same and struggled also to be clear with my employees about the symptoms they couldn't see and struggled to believe. It's tough while you're seeking a diagnosis. #AddisonsQA #AddisonsDiseaseDay

[Giulia Bould @GiuliaBould]

A4.After not being believed I was ill for so long, told "it's in your head" I suffered with anxiety after diagnosis; terrified of appointments,what if they miss something else? Sadly some medics were far from reassuring. One said "you get a bit woooo" at appointments☹️#AddisonsQA

[Vick Smith FRSA @commvicked]

A4. Often overlooked at hospital appointments and by patients themselves is the potential for sadness, grief, frustration, loneliness that can accompany both diagnoses and ongoing management of a rare condition like Addison’s. #AddisonsQA #AddisonsDiseaseDay

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

A4. Addison’s can affect you emotionally as well as physically. Our resources are here to support you & those close to you. https://t.co/4Y8Jpl5OiF

💬You can access further support from: @scope @Rethink_ @MindCharity @mentalhealth @wren_project

#AddisonsQA #AddisonsDiseaseDay

[Vick Smith FRSA @commvicked]

A2: Well said Aldons. When we hear the NHS is under pressure it's totally understandable to feel that we don't want to add to it. But early signs of adrenal crisis deserve urgent care and you won't be wasting anyones time! #AddisonQA #AddisonsDiseaseDay

[Aldons @AldonsChua]

@AddisonsUK A2. Don’t be afraid to seek for help. Most patients feel they’re wasting HCP’s time especially when it’s the early warning signs of adrenal crisis. #AddisonsQA

[Daniel Stewart @dnstewart67]

@AddisonsUK ....You will have to discover how you respond to things. And my rule of thumb: if in doubt double it. A stress dose once in a blue moon won't kill. A crisis can. #AddisonsQA

[Vick Smith FRSA @commvicked]

Here's to great Endocrinologists! I'm fortunate to have a number of them and know how lucky I am. Here's hoping a we can encourage more of them to find out more about Addison's today :-) #AddisonsQA #AddisonsDiseaseDay

[Giulia Bould @GiuliaBould]

A3. I was fortunate to get a great endocrinologist who took his time to explain Sick Day Rules. Also great resources on @AddisonsUK. On that note the first endo I got on diagnosis was rude & vague, I demanded someone else. You should too, it's your life in their hands #AddisonsQA

[Vick Smith FRSA @commvicked]

A1 @Anna_L_Mitchell @lisashepherdcl1 do you think things are improving in endocrine medic training to change the culture around expert patients? #AddisonQA #AddisonsDiseaseDay

[Lisa shepherd 💙 @lisashepherdcl1]

@Anna_L_Mitchell #A1 You are so right! Everyday is a school day 😊No one can teach us more than the individuals who have the condition. Only the person experiencing can understand it #AddisonsDiseaseDay #AddisonsQA

[Vick Smith FRSA @commvicked]

How interesting :-). I wonder if there are ways we as expert patients can approach the medics that would help them feel more comfortable and less threatened.

[Vick Smith FRSA @commvicked]

@esc4p33 @AddisonsUK A2. Peer support groups are very important. Although it can seem scary going into a room / chat with people you've never met, but in this case you'll have a health condition in common and so much to gain :-) #AddisonQA

[Vick Smith FRSA @commvicked]

@dnstewart67 @AddisonsUK A1. Building confidence is such an important part of creating an effective relationship with your healthcare professionals isn't it - it can be daunting to challenge their assumptions. #AddisonsQA

[Vick Smith FRSA @commvicked]

@jtonline Oooh biscuits aswell 😋 cool!

[Vick Smith FRSA @commvicked]

How well do you prepare for appointments with your hospital consultant?

Making a list can make all the difference.

Having Addison’s Disease, its great to know there's now a new ready-made list for endocrinologists to use for consultations.

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

Preparing for appointments helps get the most out of those vital minutes. A Consultation Reference Guide (@Soc_Endo) is now available to support you as an expert patient & prompt your endocrinologist on important issues.

#AddisonsDiseaseDay (5/12)
https://t.co/xb3FHmmutu

[Jennifer Hemingway🌹🐝🫱🏿‍🫲🏼🐢🙋‍♀👩‍👧🏳️‍🌈🌻 @Jen_Hemingway]

Have you ever heard of Addison's Disease? Until I was diagnosed in 2008, I had no idea what it is. Today is #AddisonsDiseaseDay. It's a good day to learn something new, especially for medical professionals. It might save someone's life. ❤️‍🩹

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

Thank you to our amazing community, fundraisers & all who support our charity. We hope you have a great #AddisonsDiseaseDay 🎉

To stay connected & make our voice stronger, become an ADSHG member today & join #TeamAddisons!

Find out more ➡️ https://t.co/XPVeLDHCpD (12/12)

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

To mark #AddisonsDiseaseDay, we spoke to @NVTweeting about the role of the expert patient & how we support those with adrenal insufficiency whilst also tackling the lack of education for healthcare professionals.

Read more 👇 #AddisonsDiseaseDay (11/12)
https://t.co/iG33ZMCBeN

[Addison's Disease Self-Help Group (ADSHG) @AddisonsUK]

Did you hear @GiuliaBould's #AddisonsDiseaseDay chat with @chamiltonbbc on @bbcmerseyside? Giulia who has Addison's, gives a brilliant insight into life with Addison's, speaking about her diagnosis & more.

🎙️Listen from 1:30: https://t.co/UfPWDGqB2x

Thank you Giulia! (10/12)