Thyroid UK
87,682 members102,366 posts

The British Thyroid Foundation's Response to the Scottish Parliament in November 2013

scottish.parliament.uk/S4_P...

24 Replies
oldestnewest

*spits in coarse & unladylike manner*

That letter could have been dictated by the RCP and Society of endocrinologists. Bloody Uncle Toms!

Reply

After a cursory scan this appears to be a load of dismissive condescending (choose your own expletive).

Reply

I wonder if it would be worth infiltrating this organisation on a local level i.e.. going to group meetings and speaking up. The problem with hypothyroid patients is that they are fatigued and often not able to go anywhere or even speak up, that is the nature of hypothyroidism and that is why we are so easy to manage for drs. The comment that the majority of patients are well on thyroxine is crap, most of us have been told that any symptoms we have are unrelated to thyroid or that they are our own fault and when we are sick we believe them. There are thousands that are kept sick and don't know about it. maybe we need guerilla warfare. I think I will try to infiltrate (I often have ideas but rarely act on them though), anybody with me?

Roslin

3 likes
Reply

Excellent idea! Question is do you innocuously question attendees to see how they're feeling then go for the kill? I did check and there is no group anywhere near me otherwise I would pop along. Do keep us posted!

Reply

Next meeting in Edinburgh is not until end of jan, will go and have a look, talk to people and see if thy look hypo

R

Reply

Roslin, I agree with you - ie the response to the Scottish Parliament - how many of us are so hypo, even emptying the dishwasher is a dilema! I'll go with you to the meeting, balaclavas and pigs thyroid butties in our bags!

Reply

Takes my breath away. 1) my grandmother DIED from Addison's disease. 2) experimentation is the way science moves forward, what is going on here is disseminating admittedly, non scientific, trial results for further investigation. 3) there is a hint in the letter that they plan to set up this type on on-line forum. 4) when I was first diagnosed I looked at their site, but it was so short on real information and so long on bland hyperbole that I came here. Patronising and condescending as a previous correspondent has said.

Reply

To me, the BTF's membership is around 4,500 whereas this site has over 20,000 - that, in itself, should be a RED FLAG that something is out of kilter.

Thyroiduk.org would not exist if we had adequate diagnosis - the best available medication which suits us and enough of it - not be diagnosed due to the TSH level alone - clinical symptoms be foremost in diagnosis. Insufficient medication leads to other more serious medical conditions and many of us have to take other than thyroid gland medication for new complaints most probably brought on by this insufficiency. Also what about people who remain undiagnosed because they are never given a thyroid gland blood test at all even though they go to the doctors with their list of complaints (clinical symptoms).

We are told, more or less, that's it is all in the mind. Some told they have mental health problems (due to the brain/body being undermedicated).

The Powers that Be are very dismissive of thyroid gland disorders and their training appears abysmal, as well as having little knowledge of the devastation to sufferers lives/families/work with their never-ending ill-health.

Dr John Lowe sent to the BTA a Rebuttal which they have completely ignored and did not have the courtesy to reply or discuss (closed minds?) despite Dr Lowe twice following up asking for comments on it.

thyroidscience.com/letters/...

How many, mainly women, have been mortified to be told they 'eat too much' - if they lost weight their problems would be solved - 'why am I gaining weight?' when it has been scientifically proven that, for many, levothyroxine is the culprit especially when TSH is kept within range (never mind the fact that some still feel terribly unwell even with a low TSH)

Why are we not listened to? Why be forced to go private which is unaffordable for many? Why were sufficient answers not forthcoming when Talkhealh was inundated by questions when they put Thyroid as a subject online?

There are still the sufferers who do not have access to the internet and have a life of misery due to their ill-health and are unaware that it may be mainly due to their thyroid gland medication.

1 like
Reply

Hi shaws, it costs (money) to become a member of the BTF whereas TUK membership free, not that means it is any less caring or knowledgeable - but maybe something to do with the membership numbers?

Reply

Membership to Thyroiduk.org is £20 per year which is good value as it includes:-

thyroiduk.org.uk/tuk/member...

They also have an office to run with the usual expenses.

1 like
Reply

Pathetic and quite frightening. They have ignored everything that has been asked of them . Their minds are closed completely. What on earth happens next?

Reply

I wonder what decision the Scottish Parliament will make.

Reply

They are an un-elected body and as such they cannot be touched, I wonder if their financial records are in order.....

Reply

What a load of tosh - that was surely written by a doctor and not from a patients group with their finger on the pulse. They are totally out of tune with what is happening (reminds me of our politicians) in the thyroid world and should be brought to book publishing rubbish like this.

Will this load of drivel have a bearing on the outcome of the case does anyone know?

Moggie x

Reply

It may well have a bearing as they are the 'educated, qualified, professionals'. Let us hope the Scottish Parliament (should we write individual letters to them?) .can see through this charade. Fortunately (or unfortunately) one of the Members is hypothyroid herself.

Reply

Yes, it may have a bearing, but Lynn Mynott representing ThyroidUk, has also made submissions and was, I think, at the 1st October round table meeting of the Petitioners and the Scottish Parliament.

The petitioners responded to the conveners and panel on 12/12/13 expressing shock at some of the 'professionals' discussion. It's eloquent and to my mind, extremely representative of what many here have experienced and think.

m.facebook.com/scottishthyr...

The Petitioners invited thyroid patients to email andrew.howlett@scottish.parliament.uk rebutting BTF's assertion that they represent thyroid patients and their views. Emails referencing the 1st October Round Table are welcomed from non-Scottish thyroid sufferers in addition to Scottish sufferers.

The email link is from one of Scottish Thyroid Petition's FB pages dated 25/11/13 in the FB link above.

Some of the comments are very anti BTF and Lorraine (not Cleaver) put up a spirited defence of BTF but cant be said to have taken the sting out of the tail.

Apologies for not providing individual links. I've bookmarked STP but this tablet and I struggle with c&p individual stories from my newsfeed.

Reply

That the author did not make their name public is itself interesting. Fair enough putting forward a document that is the collective view of the BTF, but most such papers do identify their authors.

Reply

Can we not ask, using the freedom of information act, for the authors identitiy? I would love to know who was responsible for denying the lack, and the need, of alternative thyroid treatment other than T4 in the UK.

Moggie x

Reply

It is certainly something that could be asked! Whether we'd get a reply which identified the author is another matter... :-)

Reply

The big questions that spring to my mind are:

* Who funds the BTF?

* Why do they prefer literature reviews as a method of research over patient experience?

* Why do they (and most doctors) prefer to ignore patient experience and concerns?

For me, that last question is the biggest of all. Why are patients' own experiences ignored. What is the point of going to see a doctor (for any condition) if your symptoms and treatment experience are not listened to? What do doctors ACTUALLY believe their job involves?

1 like
Reply

Agreed. Doctors are becoming the medical equivalent of working in a call centre where you have a pre-written script that has to be recited. Initiative, intelligence and common sense are not prerequisites.

Reply

Go to the Charity Commission website and look at their accounts.

Reply

omg - I've got as far as their association with "sense about science". An organisation to whom I submitted a written complaint last year for being a member of an awarding body that gave an award to a member of their own "Advisory Body". Dare I read the rest?

Reply

Is it an association of the 'Old Boys' Network'?

Reply