Report of Scottish Parliament Committee on Thyroid and Adrenal Testing PE1463

[diogenes]

This 50 page document has just been issued in draft form, but will not be available for general accessibility until tomorrow. It summarises the findings of the various contributors and includes offering from Dr A Toft and myself as well as the usual suspects. There of course is still some trotting out of the old misunderstanding by the "experts" but I think they have been answered fairly in most cases.

[humanbean]

Who wrote the document?

Do you think the document will do Scottish thyroid sufferers any good?

[diogenes Remembering in reply to humanbean]

This is what they said:

TREAT THE PATIENT NOT JUST THE SYMPTOMS SAYS COMMITTEE

A five year battle for recognition and improved diagnosis of patients with thyroid conditions has today led to a call for a clear, single protocol for testing to be applied for the whole of Scotland.

First raised in a petition in 2013, petition PE1463, today’s report by the Scottish Parliament’s Public Petitions Committee also calls on the Scottish Government to do more to capture the experience of patients to ensure that the most appropriate treatment can be given to patients.

During the Committee’s consideration, the Committee heard moving testimony about the impact that the search for treatment had on some people’s lives, including the petitioner, Lorraine Cleaver.

Committee Convener, Johann Lamont MSP said:

“The experiences brought to light by this petition are simply unimaginable. The daily struggle against constant pain, depression and uncertainty is difficult enough, but for this to be compounded by not being believed by those in a position of trust is unacceptable.

“The majority of those affected by this illness are women. And it is sadly unsurprising to hear that the complaints and pleas of so many women have gone unheard. It is part of a wider issue of health problems affecting women not having been taken seriously.

“This has to stop. We have to listen to patients and patients must have confidence that they will be believed. That is why we have called for a national testing protocol as well as more research to ensure that patients are treated as individuals and not just symptoms on a page”

As well as the clear guidance, the Committee also called for professional bodies to work closely with patient support groups and individuals to promote greater awareness of the issue. Deputy Convener Angus MacDonald MSP said:

“Today’s report marks an important milestone after 5 years of consideration and we want to put on record our thanks to the petitioners raising such an important issue.

“This is clearly a complex issue and one which the Committee has rightly taken its time to explore and examine all sides and arguments put before us. What is clear is that whilst there is no on size fits all solution, there is the chance to listen to patient experience as well as introducing a clear, single protocol for the whole of Scotland.”

Background

Introduced in 2013, petition PE1463 called for action to ensure that GPs and endocrinologists were able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment.

Although drafted in broad terms, the petition focussed particularly on hypothyroidism and those patients in particular who continue to experience symptoms while undergoing the recommended standard treatment.

[nightingale-56]

Thanks for telling us about this Report. I shall keep a look out for it.

[Katepots]

Thank you, look forward to reading the report in its entirety.

[SilverAvocado]

Wow, very exciting that its looking good

[linda96]

Definitely going to read all 50 pages, this looks good and possibly something that can be quoted in dealings with MP's and public bodies in the rest of the UK. You and Lorraine Cleaver are to be applauded for the tenacity and patience you have shown over the last 5 years.

The tide has got to turn soon in favour of listening to patients - in my own case despite me being a regular visitor to surgeries and hospitals I was not listened to for over 50 years. I am still waiting for proper consideration of all my medical issues.

[Hidden]

My only concern if that instead of saying that there is a need to treat people rather than blood tests they have used the word symptoms which may lead some endos to interpret it being Ok to ignore symptoms which is a ongoing major issue.

If this is a draft I presume there is some room to change wording. Otherwise looks positive. I dont like Dr Toft due to ridgid attitudes to TSH tesing and his inconsistancys. I suppose we ought to make the best of his turncoating however long it lasts.

I will read tommorow and it has a positive tone. Thanks for your work on this Dioganes.

[cwill]

Where do we find the report? I can’t find it.

[cwill in reply to cwill]

Found it: Lorraine Cleaver on twitter.

[DippyDame]

Four important words, "This has to stop".

Just quickly skimmed through the draft....so many people deserving of so much gratitude. Thank you for your valuable input diogenes

The wind of change is now blowing - let's hope it blows up a storm!

[PR4NOW]

For those that wish a copy. PR

digitalpublications.parliam...

[Aurealis]

Thank you for posting this, and thank you also to you and others who so strongly presented to the committee the challenges I’ve faced through the last 25 years. I thought I would feel like cheering (and I did) but reading it all together made me also feel as if I was about to cry.

It reminded me of years of frustration, years of feeling vulnerable and years of feeling ‘abnormal’. That is abnormal test results, abnormal reaction to treatment and abnormally (apparently) challenging doctors at repeated appointments, not to mention the years of ill health

From the worry of having to insist that blood tests are done (again!) /dose should be raised, and then that I shouldn’t be treated according to the test results, to the constant challenge of avoiding GPs who seemed determined to make me feel as ill as possible, to dodging the constant offer of antidepressants, antihypertensives, anxiolytics, suggestions that I was menopausal, working too many hours, that I expected too much (as I became older), anything except proper thyroid treatment. An endocrinologist’s attempt to stimulate TSH with a low dose for several months was also an appalling experience

After 25 years I have made progress of sorts. Most importantly, I’m well. But I face the constant worry of withdrawal of my T3, have the ongoing costs of providing myself with NDT and paying for private endo appointments, and the challenge of managing the thyroid condition into the future through my older years where I’m likely to develop other conditions and thyroid management may become more difficult still in the context of other drug treatments. For instance, should I end up in hospital for any reason, what will they make of my unconventional test results and combination T3/NDT regime.

I’m so glad that the issue of thyroid mismanagement mainly affecting women was raised too. Hopefully the world may be a safer place for my daughter (should she develop a thyroid condition, as so many do inherit a tendency to this condition) in the future.

At last there’s real hope.

[diogenes Remembering]

I wish I could say "at one bound jack is free" but it won't be like that. There are a whole panoply of "experts" who somehow have to put their hands up eventually and admit 35 years of error. Somehow I think that is a large item for them to swallow. There will be a lot of backpedalling whilst trying it on that" we weren't against this all along". Medicine in history has proceeded by, all of a sudden, what was true no longer becomes so, and we never thought it.

[lady_eve]

In case anyone's having trouble tracking this down, here' the link to the final report (ie not the draft): sp-bpr-en-prod-cdnep.azuree....