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Hyperparathyroid UK Action4Change

Primary Hyperparathyroidism can be a lonely, frustrating, depressing and debilitating disease, especially when friends, family and doctors don't understand how much we are suffering, or how worried we become when we find  we have done much more research than the doctors in charge of our health.  Reaching out to others who do understand, who found themselves on the same path, or have recovered after surgery, can help you throughout your journey to surgery and beyond. Please consider joining our online support group. We likely have people in your area of the UK who can offer you local support and advice.  To join our private Facebook support group, please submit a request using the  following link or scan the code. For the security of our members, and to assist our busy moderators, you will be asked to respond to three automated questions and agree to our T&Cs to be approved.  https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
Surgeons/clinicians can request to join our sister group HPT UK Medical.

Alternatively, contact Sallie Powell by completing the form below, or email me directly at hyperparathyroiduk@yahoo.com 
Please note this site is not manned every day.  I will respond as soon as I can. You can follow me on Twitter ; @SpSallie
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If you would like to contribute towards the upkeep of this website, and/or educate your clinicians,  we published leaflets in June 2023 which are available to order in packs of  twelve leaflets for £3.00, which includes UK second class postage.

 

We also sell silicone wristbands in white or purple for £1.00 plus second class postage. The wristbands have our website address on one side, and 'Check your Calcium' on the other.  

Our PayPal address is below. Please state how many leaflets or wristbands you require and supply an address to post them to. Thank you.   

 

paypal.me/Wristbands05 

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Books published by Sallie Powell
A Normal Christmas - Lighthearted HyperPARAthyroid adaptation of 'A Christmas Carol'

Written in 2020 after seeing many operations cancelled due to the pandemic. The aim was to try to get across a very serious message to clinicians, using a well known Christmas story with an important lesson to learn, to try to improve awareness of surgery benefits for patients with normocalcemic primary hyperparathyroidism, a very common endocrine disease which is sadly still under recognised and under treated in the UK. The main character in A Normal Christmas, is a very kind parathyroid surgeon about to experience a very different Christmas Eve after a very different 2020.


There are of course, three Ghosts of Christmas Past, Present and Future, very unlike those in other adaptations of A Christmas Carol, as well as a lovely dog named Bella (RIP my darling girl). A fictional story based very loosely on true stories. I've included medical studies in Chapter Six to show how normocalcemic PHPT isn't fictional at all, but has been written about since 1969. If your clinician doesn't believe in Normocalcemic Primary Hyperparathyroidism, maybe buy them a copy of this book for Christmas.

 

'A Normal Christmas' has a happy ending. That's all hyperparathyroid patients are looking for; our happy ending. 
 

True case stories are included at the end of the book. Available from Amazon on paperback or Kindle (£5.99/£3.99) 
 

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https://www.amazon.co.uk/Normal-Christmas-hyperPARAthyroid-adaptation-Carol/dp/B0CNLRGXQZ?fbclid=IwY2xjawIBBANleHRuA2FlbQIxMQABHQ8UY1BNuHG28nPasS09NRkgX82s9UkZObaBS2bTV3OlRPQ_JkoQbBjN8g_aem_4qgEWPc0QZanLjTLsl2Cxg

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It's Not All About the Levels - Normocalcaemic Primary HyperPARAthyroidism

The astonishing medical mystery surrounding Normocalcaemic Primary Hyperparathyroidism (NCPHPT) is that many clinicians claim it is controversial, or it doesn’t exist and/or doesn’t need surgery (parathyroidectomy -the only cure) which is offered to hypercalcaemic PHPT patients. The reason they cite is 'Normocalcaemic PHPT can’t cause symptoms.’ which is nonsense (known as Medical Gaslighting).  NCPHPT patients are often refused PTH blood tests, scans and referrals to surgeons, by doctors, based on calcium levels alone. Those doctors are mistaken. Whether basing their beliefs on NICE guidelines (NG132) published 23 May 2019, or their own personal misguided understanding of NCPHPT, most doctors are relaying misinformation to patients, putting them at risk of serious harm, including cardiac events including sudden cardiac death, (linked to elevated PTH). If patients can learn about Primary Hyperparathyroidism, why can’t clinicians? I've included 60 case stories including my own and many reasons for serum calcium levels being reduced, which does not exclude Primary Hyperparathyroidism. Reasons which have escaped clinicians until now. I hope if they read this book, they will say to themselves, oh crikey, how did we not know that?...The time to change is NOW.

 

It's Not All About the Levels: Normocalcaemic Primary HyperPARAthyroidism (NCPHPT): Amazon.co.uk: Powell, Sallie: 9798357345424: Books

Available only in paperback at Amazon. I hope to make it available on Kindle in 2026. (delayed by a diagnosis of BC - SJP)

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One Hundred Letters

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Over one hundred letters were sent by our group members on 15th March 2021, to Sir Simon Stevens, CEO of NHS England. The heartfelt letters described years of misdiagnosis, the pointless and cruel 'Watch and Wait' regime upheld by many endocrinologists, and the battle many of us face to be heard by doctors who seem determined to find any other reason for our symptoms, rather than primary hyperparathyroidism. The only reason we can see for this barbaric practice, is ignorance, but how can so many clinicians still be completely ignorant about this disease, when patients can learn the complexities of PHPT (because they are left with no choice, in order to educate their doctors). 

 

We wrote asking them to take our health seriously and to help us to get a timely diagnosis of hyperparathyroidism and surgery.  We asked them to instigate a review of the disappointing NICE guidelines NG132. We also sent letters to Professor Amanda Howe, at RCGP, and I sent copies to the CEO s of Wales and Scotland, and the Minsters for Health in Ireland and Northern Ireland.  Robin Swann sent a very gracious response. Wales sent a very quick response saying there isn't a problem with diagnosis and how easy it is... Which is the opposite of feedback from members in Wales.

NHS England and RCGP responses, one from a representative at RCGP, and two from Jan, a case officer for NHS England (one to London and one to Australia) were dismissive, disinterested and frankly an insult, considering the nature of the letters, and the effort put into writing them (in vain) hoping someone at the top of the NHS might give a damn about the poor treatment and neglect of patients.  I felt the letters deserved to be read, so I published them. One Hundred Letters is available on kindle or paperback at Amazon: 

One Hundred Letters by Sallie Powell and members of Hyperparathyroid UK Action4Change, is available on kindle or paperback from Amazon. Follow the link below or scan the code. https://www.amazon.co.uk/One-Hundred-Letters-Hyperparathyroidism-professionals/dp/B094T5SJ6S/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

 

If you read these letters, a review would be very much appreciated.  Thank you.

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