Hyperparathyroid UK Action4Change
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One Hundred Letters
Over one hundred letters were sent by group members on 15th March 2021, to Sir Simon Stevens, the CEO of NHS England. The heartfelt letters described years of misdiagnosis, the pointless and cruel 'Watch and Wait' (for end-organ damage before surgical referral) 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, than primary hyperparathyroidism. The only reason we can see for this barbaric practice, is ignorance. Yet how can so many clinicians still be so ignorant of this disease, when patients can learn the complexities of PHPT (because they are left with no choice but to do so, in order to educate their doctors, in order to get the help they need).
We also sent letters to Professor Amanda Howe, at RCGP, and I sent copies to the CEO of Wales and Scotland, as well as the Minsters for Health in Ireland and Northern Ireland. Robin Swann sent a very gracious response. Wales sent a very quick response saying there isnt a problem with diagnosis and how easy it is...
As expected, 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 a vain hope that 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:
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