In brief due to low energy and tasks ahead - I am noticing more and more frustration on this site re poor diagnosis and poor treatment with GMC replies being less than helpful.
Thought you'd be interested to know I have today received a five page letter from Jeremy Hunt, following 'Humphrey's' call to write to Jane Ellison through our MP. Unfortunately, I do not have a scanner, but to give you a gist of the letter, here is his answer to point 8 of Humphrey's template letter :
8. Lastly, and perhaps more importantly, we need an acknowledgement that current diagnosis and care is inadequate:
" While I note your constituent's concerns, it is for NHS organisations to follow clinical guidance on the diagnosis and management of conditions. People who are unhappy with the standard of care they receive can raise their concerns with the provider or commissioner of care through the NHS complaints procedure. "
His answers to the rest of our questions are in the same vein - all talk and no action ! We are sent in ever increasing circles and no one is listening or prepared to change anything.
"His answers to the rest of our questions are in the same vein - all talk and no action ! We are sent in ever increasing circles and no one is listening or prepared to change anything."
My experience is the same. I contacted the hospital chief executive. I haven't received any reply so far.
Thanks Sarah for the info above. I will write to Jim Shannon. Good idea about the book. I was much affected by Marram's story here on HU, "My journey from misery to hope".
It it helps anyone to write, here is my version of a letter based on Humphrey's original template:
In December 2013 Mrs Caroline Spelman, Conservative MP for Meriden, raised the subject of hypothyroidism in Parliament. Here is a link to the Hansard debate, for your convenience: publications.parliament...
A large number of people in this country with thyroid disease find that the limited treatment options available to them do not help them. Many have difficulty getting diagnosed at all. I belong to an online community where such people share their problems : Health Unlocked - Thyroid UK.
Mrs Spelman raised the subject as a result of one of HU-Thyroid's Trustees contacting her. The Parliamentary Under-Secretary of State for Health (Jane Ellison) was present. Her response to Mrs Spelman is at 11.13 on the Hansard report linked above. This was knowledgeable, as far as it went. However, the fact that there are so many people still so unwell with thyroid problems points to some kind of failure in the current diagnosis and treatment of thyroid malfunctions (there are a number of different - sometimes very subtle - ways in which thyroids can malfunction).
Mrs Spelman recommended setting out some of the more important changes the HU-Thyroid website members would like to see in the way the NHS treats thyroid patients. She advised that we write to Jane Ellison, via our MP, with our concerns. Below is the list of things we would very much like to see improved:
1. More research into what is causing the epidemic of thyroid disease across the world.
2. Better training for Endocrinologists and GPs.
3. Investigation into a broader panel of treatments for thyroid malfunction. Many hypothyroid patients do well on Levothyroxine alone, the only drug offered by the NHS. However, a significant number do not and become desperately unwell and unable to function (my sister is one of them).
4. A regular, broad, panel of blood tests to be carried out on thyroid patients who still exhibit symptoms, to assist in diagnosis and treatment. At present, most GPs rely on the TSH blood test alone (which varies throughout the world) and mainly disregard symptoms. A malfunctioning thyroid affects every cell and organ in the body. (In my own case, once I was on the right thyroid treatment, my heart, blood pressure and cholesterol problems were resolved and I was able to discontinue expensive drugs). This has huge implications for savings in the NHS.
5. Investigation into why the NHS is paying exorbitant prices for T3 when the rest of Europe is not!
6. A ban on the practice of drug companies paying commission etc to surgeries and GPs to use their more expensive drugs.
7. Thyroid issues to be acknowledged under occupational health legislation to help safeguard individual employees, and potential employees, ensuring that the symptoms and impairments experienced are considered by NHS and employers; the current failure to do this is ethically wrong and discriminatory .
8. Lastly, and perhaps most importantly, we need an acknowledgement that current diagnosis and care is inadequate.
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YAY
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Looks like I'm on my own again :-(
What does endocrinologist mean please?
APATHY ... APATHY ...WHY SO MUCH APATHY ......
