Posted , 3 users are following.
Sallie Powell suffered for years from the debilitating symptoms of primary hyperparathyroid disease. Subsequently, in order to save others from having a similar experience to hers, she has been tirelessly lobbying for change in the UK and leading efforts to raise awareness and get guidelines established for primary hyperparathyroid disease. Sallie, with the help of fellow advocates, has succeeded!
Hyperparathyroid UK Action4 Change is please to announce confirmation from Professor Mark Baker, Director for Centre of Clinical Practice for The National Institute of Clinical Excellence, that he has been in discussion with colleagues in NHS England about the need for guidelines and Quality Standard for Primary Hyperparathyroidism and he states that they have now initiated the process to achieve this outcome.
Moving forward their group has been invited to participate in the process as stakeholders. Sallie informed us that she is writing to NICE today. She states, "we will endeavor to ensure the guidelines will enable doctors and endocrinologists to recognize and diagnose pHPT like never before. We have not come this far to accept flimsy guidelines."
While the group's primary focus is to advocate for guidelines the group serves several other purposes and brings together people who suffer from pHPT from all around the world. Here is the group's mission as stated on their Facebook site Hyperparathyroidsm UK Action4Change:
Primary Hyperparathyroidism is the 3rd most common endocrine disease yet there are no regulated guidelines for diagnosis and treatment in UK for people suffering symptoms and presenting with blood calcium less than 3.
GP's are generally unaware of the condition and believe it to be very rare. They are not aware of Normocalcemic Primary Hyperparathyroidism and the chances of diagnosis based on symptoms is even more rare leading to years of misery and very poor health in UK. This group intends to change recognition by GP's and hospitals and make everyone aware of Hyperparathyroidism.
Members worldwide are welcome. We all need a place to come and talk and share our experiences and advice. The outside world can be very lonely when nobody has even heard of hyperparathyroidism. We intend to change that by raising awareness.
Thank you for your letter of 12th June regarding Primary Hyperparathyroidism.
I, on behalf of NICE, have been in discussion with colleagues in NHS England for the need for a guideline and Quality standard for Primary Hyperparathyroidism and we have initiated the process to achieve this outcome.
When the topic is referred to us, we will try to find a slot for it in our Guidelines programme and the Quality Standard will be based on the completed guideline. I assume your association will want to register as a stakeholder for this guideline and you will then be kept informed of progress.
Professor Mark R Baker
Centre for Clinical Practice
The National Institute for Health and Care Excellence
London SW1A 2BU"
1 like, 5 replies