gov.uk/government/consultat...
Please take 15-20 mins to let them know your experiences and most especially the issues you have encountered with health and social care. From forums and my own experience we have a lot to say. I only have appointments now that my husband attends and he ends up speaking for me when no one appears to be listening. In 2021!
Sorry if this is a duplicate but searching didn’t bring up a post.
They will also accept submissions from organisations.
Thanks cwill. You beat me to it this morning!
Hopefully the thyroid charities and advocacy groups will submit? Despite our large numbers we are still experiencing considerable difficulties at all stages of the diagnostic and treatment processes. And don’t get me started on shared care agreements, patient centred care and quality of life issues.
I have written them some answers...... they are probably a bit repetitive.. but they did say they were having trouble hearing us 
Have there been any instances where you felt you were not listened to in relation to specific health issues or conditions? Enter up to 2 examples
50 words "Autoimmune Hypothyroidism. During / after pregnancy i reported Exhaustion,( but NOT depression) that affected day to day functioning. GP did not check bloods for hypothyroidism, despite it being commonly triggered by pregnancy. I was referred for counselling. Consequently my hypothyroidism remained undiagnosed and untreated for 4 years ."
Another 50 words.
"Autoimmune Hypothyroidism. When treated for Hypothyroidism with Levothyroxine, it did not fully relieve symptoms of hypothyroidism. When i reported this to GP, i was not told of the alternative available (addition of Liothyronnine if symptoms persist). I was told that my symptoms could not be thyroid related, which was incorrect."
Is there anything else you would like to share regarding how the health and care system listens to women’s voices?
350 more words.
"In my experience (of Autoimmune Hypothyroidism) There is a difference between what i report to the GP and what i find written on my medical record.
For example I go to GP and report : - physical inability to sustain activity that i want to do , and am eager to get on with, but have to moderate what i do, or else i am left feeling so bad for the next few day's i can't function at all.
I report being so 'brain fogged' after a day of 'normal' work that i am unable to drive safely in the evening.
These symptoms affect my work life, cause me to change job roles, and limit my earning capacity. They also affect my personal relationships , and my ability to care for my children and give them the attention they need.
However ... from my medical records , what is recorded from that appointment is :-
"C/o feeling depressed, feeling low, feels there is distinct pattern of SAD in winter, struggling to motivate self , panicky , irritable, can't get out of bed.. Not tearful , good circle of friends, reduced appetite, helps at ******* school.... look for light-box ....if can't improve then will return to consider AD's "
AD =Anti Depressant's.
Instead of thinking about checking Thyroid Function blood Tests , i was offered Antidepressants.
This was the second time i was assumed to be needing treatment for depression when the real problem was Autoimmune Hypothyroidism.
The first time it should have been even more obvious to check for hypothyroidism since it was shortly after giving birth.
As a result of these assumptions about depression , and failure to properly hear or record my PHYSICAL symptoms, i went untreated for Autoimmune Hypothyroidism for 4 years, which resulted in being unable to work effectively and thus loosing my home which went with my job..
I also had to mentally deal with incorrectly believing that 'there was nothing wrong with me' when in fact what was wrong with me is easily diagnosed if only a GP considerers Hypothyroidism (a predominantly female disease), and runs a blood test for it rather than reaching for a prescription of Antidepressants.
Do you have any suggestions for things that would help you better access information and education on women’s health?
Would you like to share examples or provide suggestions as to how services can be improved for a specific condition or disability?
Autoimmune Thyroid Disease.
NHS should have information on Symptoms of Thyroid Disease available for patients to see in the waiting room .
GP's should receive better education about physical symptoms of hypothyroidism.
GP's should routinely test for Hypothyroidism or Post Partum Thyroiditis in any pregnant or recently delivered woman who they consider to be 'Depressed'
GP's should seriously consider testing for Autoimmune Hypothyroidism in any woman to whom they are considering prescribing Antidepressants.
GP's should be reminded (as mentioned in NICE thyroid guidelines) that 15% of patients taking Levothyroxine do not do well on it, and should inform patients of the alternatives currently available from Endocrinologists (Liothyronnine and Levothyroxine combination therapy, or Natural Desiccated Thyroid) ...rather than 'gaslighting' them, since being led to believe 'it's all in your head' for years is extremely damaging to mental health when you have a real physical condition that affects virtually every cell in your body.
NHS should give information on Thyroid Patient Charities to patients at diagnosis of Hypothyroidism.
NHS should improve thyroid testing to include fT4 and fT3 as well as just TSH in patients who do not do well on Levothyroxine.
GP's should acknowledge the life changing effects of hypothyroidism in some people, rather than telling them "it's just a little white pill every day and then you'll be fine".. It is acknowledged in the latest thyroid research literature and NICE guidelines that approximately 15% of patient's do not do well on Levothyroxine... yet current NICE guidelines on treating Thyroid Disease make absolutely no suggestion as to what to do with these patients .
I wrote some thing else on the question about research ...but i've lost it.
Questions for anyone who has answered this survey...
1) Is there any way of seeing the whole survey before I start answering? I hate surveys where I can have surprises sprung on me, and I want to know what I'm answering before I start.
2) Is it anonymous or am I expected to identify myself.
3) Can answers be left blank if I don't want to answer a particular question?
1.don't know if you can see the whole thing . I did it in order, but you can go back a page, and it looks like you can change the previous answers but not 100% sure how that works as at the end of each page it says 'responses recorded'
2, 'first' name and email address only , no Surname, but don't think it would know if the first name you put is correct, i nearly spelt it wrong on purpose , but then decided i didn't mind them having it.
3 . Yes. can leave blanks AND and you can also pick at the beginning which out of 6 areas to answer questions on.
There are places at the end of each 'area' for writing your own opinions with 350 words, and a few places for writing 50 word answers.
Quite a lot of the tick box answers were a pain to fill in 'cos when i clicked , it wouldn't stay clicked and had to keep repeating it till it stayed ticked,
But other than that it was a good experience with much more opportunity that normal to say what you actually wanted, rather than just tick boxes. There were no nasty surprises.
p.s at the end it said something like "would you like to do this survey again" but don't know what would have happened it i did..
I also don't know if you can continue if you dont put email /name in or what happens if you put them in incorrectly.
p.p.s
it took me a damn sight longer than 20 minutes to do it , once i realised you were allowed to write points in your own words
Thanks, tattybogle.
Thanks cwill for posting. Very grateful for chance to complete this.
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