The intransigence of the NHS: On a note parallel... - Thyroid UK

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The intransigence of the NHS

diogenes profile image
diogenesRemembering
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On a note parallel to the NHS attitude to thyroid disease and treatment, we now find that the advice of not weaning babies until 6 months of age has caused an outbreak of allergies. This has been recognised elsewhere in the world, but the dear old NHS simply doesn't change its fatal directions. It's the same I fear with changes to thyroid treatment practice. The sheer arrogance, mediocrity and intransigence of the NHS and its advisors really is an indictment of their attitudes of "knowing best in spite of any evidence to the contrary from elsewhere, however well devised". One has to wonder why new thinking and action so often has to come from elsewhere before it is slowly accepted in the UK.

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diogenes profile image
diogenes
Remembering
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DellFinium profile image
DellFinium

Institutional change is like putting the brakes on the QEII and doing a U turn. What on earth do the Endos from the rest of the world working in the NHS think? Are they just towing the line???

in reply to DellFinium

They are frankly over paid, all doctors in this country, they work inhumanly long hours to qualify, then get paid mega bucks and treated like Gods.Thye dont want to give it up for anything and will not even risk rocking the boat.Theyre jobs are over valued and they do as they are told including keeping thier mouths shut about problems to keep them.

If I was to give any advice to a new mother it would be to ignore any advice from the NHSand listen to the baby. Mine wanted tostart solid food at about 3or 4 months crying when they smelt food. It was hell at meals times trying to eat in peace. My poor first child I made him wait untill 6 months, so keen to do the right thing my second thankfully I gave him soft food from about 4 months. thishas gone on for generatons though, health visiters giving mothers bad advice. My friend was left screaming all night as a tiny baby as the mum was told she should only be fed at 8pm and then left untill at least 6am by the NHS advice then.

'Health workers, leave us mums alone !'

greygoose profile image
greygoose in reply to

My mum gave me the best possible advice: go to the clinic because you have to, smile and nod at everything they say, then come home and do as you think best - follow your instincts and your gut feelings, and what the baby is telling you. I really hated those wretched clinics! They made mothers feel like criminals.

jgelliss profile image
jgelliss in reply to greygoose

GREAT ADVICE FROM YOUR VERY SMART MOM . THAT ADVICE STILL HOLDS TODAY .

greygoose profile image
greygoose in reply to jgelliss

Certainly does! :)

in reply to greygoose

I was lucky in that I decided to feed both my children myself and every time they got weighed it was (Fine) My cousin who had a baby the same month as me bottle fed hers and every time Joe was weighed she was put down and told off for overfeeding He is now 40 plus 6 ft 4 inches and not fat

greygoose profile image
greygoose in reply to

I breast fed all three of mine, too - well, for the first couple of months, but I never had much milk. And, yet, with the first one - didn't go to the clinic with the other two! - they were always telling me he was over-weight, yet he was always crying because he was starving hungry. That's why I started weaning him at three months. He's been stick thin all his life, although tall and quite muscular. Oh, I hated that clinic!

teacherspet profile image
teacherspet in reply to

Clinics are a joke...…… I was concerned about my son not growing and they just looked at me, smiled and said in a condescending tone " You're a first-time mum aren't you". Well I went to the GP for something else and mentioned the same thing to him, he checked the chart and said if he hasn't grown any taller in the next 6 tot 8 weeks I will need to refer him. So I do know that I was right to be concerned and the clinic didn't know what they were doing. I never went back and had my son's remaining vaccinations done at the surgery. Mum's know best.

shaws profile image
shawsAdministrator

Thanks for posting and the families of these children must be weighed down by the non-advice they received.

Also to think that it was the Endocrinologists who (I believe) had the knives out for anyone who prescribed levothyroxine according to clinical symptoms (as used to be the only way we were diagnosed).

Dr Skinner and Dr Peatfield were pursued and Dr P resigned his licence due to the pressure. Dr Skinner - being a virologist - also came up against this kind of treatment because he treated patients who was referred to him as they had 'mysterious diseases' and were told by doctors they had no problems as their TSH didn't reach the appropriate number. Dr Skinner diagnosed most as being hypothyroid.

As Dr S was a virologist I assume they thought they knew more than he did - Dr S's patients knew otherwise.

Do we know of any other doctor who had 10,000 testimonials sent by his referral patients to the GMC when he had to appear before them, yet again.

Other doctors I think were also reprimanded if they dare prescribe NDT (withdrawn through False Statements) and also recently T3.

Arrogance can equal suffering with regard to the thyroid gland and doctors and endocrinologists seemingly unaware of the purpose of the thyroid gland.

I wonder why 'trained' doctors are so ignorant of what the purpose is of a thyroid gland. Only if theirs started to malfunction would they sit up and take notice and may even ask their patients or join HU :)

Kitten44 profile image
Kitten44 in reply to shaws

I do wonder, seeing how widespread is thyroid disorder, and how varied and far reaching its implications, I bet there are plenty of GPs (and their relatives) out there who struggle with thyroid conditions - yet I wonder how many can actually recognise this?

Maybe the better clued up ones do, and it is perhaps those who are willing and better prepared to treat their patients with sympathy and recognise the signs.

But maybe there are plenty of others who are themselves suffering ailments and haven't got a clue that it is down to the thyroid and that Levo is hardly ever sufficient to alleviate symptoms...

shaws profile image
shawsAdministrator in reply to Kitten44

I think many of us on the forum can now judge if we're on public transport how many people are hypothyroid. We know signs even if we don't know the person's symptoms.

Kitten44 profile image
Kitten44 in reply to shaws

I know! I've become a bore talking about it... But that's even more frustrating when talking with family, friends, colleagues, hearing about their ailments and you just want to shout, "it is your thyroid!", yet they blindly believe the medical profession "oh, GP has checked that, it's all normal"....

We as patients are half as guilty for not challenging health professionals. It really makes my blood boil when I see petitions asking for "more funding for 'our' NHS"....

That sentimentally-driven ideological language only builds on the myth that doctors are martyrs badly treated by all and who deserve loads and loads more money thrown at them... Some even call for more taxes... if anything, I want less of my tax contributions to go to the NHS so that I can spend them paying for the private testing/supplements/medication/specialists that I have to fork out from my own money as the NHS is not willing to do it!

in reply to Kitten44

I couldnt agree more.the NHS has done me far more harm than good over the years.I would like an emergency only service and my money back+ compensation for the the harm so I can afford to fix the problems it has caused. I cant imagin e this ever happening but there is loads that can be done to improve the care but all people are asking for is more of the same, more doctors to say our bloood tests are normal or to traumatise my children with all the repeated blood tests and unnessasary exams.To make people ill with flu jabs and give mothers badadvice.I think the worst of it all is not the treatment so much but the lies , the misinformation. 'There is nothing wrong with your thyroid' 'Dont let your children get sun on thier skin' 'Join weight watchers' I could go on and on about the lies I have been told over the years. If the NHS just cut down on all the posters and advertising we would all be so much healthyier.

Kitten44 profile image
Kitten44 in reply to

And never mind the money they have to pay to keep their malpractice hidden. Not much is said about it as there are vast confidentiality agreements signed to keep it all quiet...

Trixie64 profile image
Trixie64 in reply to

I agree with everything you've said mandyjane. I've been thoroughly messed up by any NHS treatment I've had. When I broke my right wrist they couldn't even set that properly and I'm left without full range of motion. I was told I could have an op. to correct it - he wanted to re- break my wrist, take a piece of bone from my pelvis and graft that in, then re-set my wrist. No thanks!! I would like to have been given the money I saved them instead. As for thyroid illness ...........!!!!

FancyPants54 profile image
FancyPants54 in reply to Trixie64

Snap! I broke my right wrist. They set it in a weirdly shaped cast with the hand on an angle and now I can't turn it over properly. I also broke that wrist when I was 5 and it was set in plaster of Paris in a straight position and I had no problems with it.

At almost the same time as I broke my wrist about 6-7 years ago now, a German woman I know broke hers in the same place, pretty much doing the same thing. She is a circus performer. She said to the hospital in Germany, I must be able to stand on my hands when it is healed and I must have full movement. She was never in a full cast. She wore a half cast for 4 weeks, with some physio included and then was allowed to remove the cast for so many hours a day and do more intensive physio for a couple of weeks. Then the cast was gone and she had more physio. She can of course, stand on her hands, juggle, and do all the other things she needs to do. The physio I received after the cast came off was hopeless. My arm was weak and my hand pretty immobile and made me feel sick to look at it. No one cared.

in reply to shaws

I have written my GP an exam to obtain 'Patient Endorsed Competancy Certificate (Thyroid).' I am not sure if he will do it but at least he is not nasty. He is normally a very competant doctor, the best in the surgery by far but I had to explain to him the need to test for the proper vits and minerals with thyroid hormone levels.

StillEverHopeful profile image
StillEverHopeful in reply to

Perhaps we all should present our gp with your exam ...

TakeCareOfYourself profile image
TakeCareOfYourself in reply to

Seriously? You wrote a test and gave it to him to complete? Wow. Kudos.

another problem is that there is no organic change in policys as there used to be.Everything is decided by government commities and when the NICE guidlines do come out doctors stick to them robotically.Achange might not go throug the commitie again for a few years. When I first started nursing 30years ago doctors had some freedom to make clincal judgements and often drugs or current practice that was unhelpful would just not be prescribed. Now a bad drug like the flu vaccine has to begiven or doctors worry theywill lose thier jobs, they cannot or dont feel they can say to a patient 'You had a chest infection last year after the jab, perhaps you had better not have it again'.They are not advocates for their patients anymore. There used to be diversity as well.I cringe when I hear about petitions about post code lotterys and the NHS not being fair.People are frankly asking for everyone to be treated badly, thesamebog standard tick box designed to benefit drug companys more than patients.I wish I couldrun the world sometimes. Nev er mind my book is nearly finished.

shaws profile image
shawsAdministrator in reply to

Let us know the name of your book :)

in reply to shaws

The book is called 'memiors of an inappropraite psychiatric nurse'. I almost have the first draft finished and am working on the second at the same time. I plan to give TUK a decent percentage of any sales if it ever gets published as I would never have written it without TUK.It aims to be comical but is a tad dark as well.

shaws profile image
shawsAdministrator in reply to

Out of dark days comes the sun to lighten and brighten the earth and with it our hopes rise - especially when we realise there is a way to get well - IF ONLY........

UrsaP profile image
UrsaP

I'm glad I followed my mothers advice, not that I recall the NHS advise at the time. But both mine were looking for more than milk from about 3 months, if not earlier. There is such a lot of rot talked about it. Parents have to be instinctive. Trust in their own judgements and not be made to feel guilty by not toeing the party line.

From about 4 -6 weeks my younger child was unsettled at night. My mother suggested making up a bottle, for the last feed at night, that he may not be getting enough from me. So I did. Sure enough from the first bottle he was sleeping through! Sometimes, us mothers have limitations. Probably because diagnosed Hypo at that point, I don't recall any allowances, or specific checks being made for that during the pregnancy? Maybe were just never mentioned. I do know that with my first I lost weight carrying him, with the second I piled weight on and still carrying it 24 years on!! Suspect T4 has a lot to answer for there! TG for T3!

Cooper27 profile image
Cooper27

Do you have a link on the story showing breast feeding is linked to allergies? I'm curious to have a read.

diogenes profile image
diogenesRemembering in reply to Cooper27

Its an article in The Times

Angel_of_the_North profile image
Angel_of_the_North in reply to diogenes

I suspect it is big pharma rubbish designed to sell more baby foods.

Fruitandnutcase profile image
Fruitandnutcase

Well, look at T2 diabetes and the diabetes establishment’s ‘carbs with every meal ‘ dogma. On the other hand when I think about it diabetes comes under the endocrinology banner so that’s not surprising.

My two were both breast fed but were eating ‘proper’ food long before six months, probably after three months, both healthy specimens now in spite of eating food that fell on the ground outside and sneaking the cat into bed with them on a regular basis. I imagine (and hope ) that their hygienic but not over houseproud upbringing helped develop a healthy immune system.

Daffers123 profile image
Daffers123 in reply to Fruitandnutcase

You did make me laugh about the cat!!!

Lovecake profile image
Lovecake in reply to Fruitandnutcase

Sounds like my house. (Including the cat). I took advice from my dad (wonderful man). He brought up his youngest brother as his mum was so ill. (Asthma and thyroid!) My children were fed when they were hungry. My eldest slept through from 4 weeks (on breast milk only then).

My sister’s eldest was not breast fed for long, had trouble with baby milk, put on soy by the GP! She had and still has nut allergies, especially peanuts. She was definitely on solids before 6 months. (She’s 25 now).

Gcart profile image
Gcart

My Mum suggested food , veg etc , added to milk regime long before 6months , more like 6 weeks . Cant remember disturbed nights . Both grown healthy man now.

My grandsons were very fractious for months on breast milk alone.

I soooo wanted to offer advice , but one doesnt to daughters in laws 🙃😇

My youngest gson is still so fussy with his food at 5 yrs . Will only eat about 4 types of food . I am sure the reason lies with just milk for all those months !

Lovecake profile image
Lovecake in reply to Gcart

My son was fussy, he now eats more foods than most of us. It just crept in as he did more with friends, but uni was the best help.

I think I’ll be offering, as subtly as possible, advice to my daughter-in-law if I think I can help. But then, she’s not expecting yet, so I might end up taping my mouth. 🤐🤭😂

Maggie0652 profile image
Maggie0652

Where was this reported please?

humanbean profile image
humanbean in reply to Maggie0652

Article in The Times according to the reply further up.

Maggie0652 profile image
Maggie0652 in reply to humanbean

I’ve searched the Times and can’t find it. Is there a link to it?

humanbean profile image
humanbean in reply to Maggie0652

I don't know what date it was published. I have no access to either the paper Times or the online Times, sorry.

diogenes What is the date on the article this thread is about?

diogenes profile image
diogenesRemembering in reply to humanbean

You can put in "Times article on allergy" and this will lead you to the site, but you have to pay to get the whole of it.

diogenes profile image
diogenesRemembering in reply to Maggie0652

It was Mondays edition. There is also a similar article in New Scientist.

humanbean profile image
humanbean in reply to diogenes

Thank you. The New Scientist article is here :

newscientist.com/article/dn...

Maggie0652 profile image
Maggie0652 in reply to humanbean

Thank you

They are also selling silica drops for babies to help colic.That has got to be really dodgy for little tummys and digestion.I have used similar stuff on my hair and it is very hard to remove, not very soluble at all. Mums would never catch sight of a babie again if they gave a teaspoon of brandy but giving a baby a polimer is acceptable.

linda96 profile image
linda96

The problem is that once a dogma has been adopted by the NHS, there's no 'end' date. No specific date that all will be reexamined in light of new information to see if the dogma still holds true. Major companies regularly buy in services of other companies to see if products or services are still competitive, cost effective etc. Why doesn't the NHS do this?

If the current NICE hypothyroid guideline compilation was only instigated because so many replied to the NHSE Consultation document, this is very poor management of a well loved but anarchic establishment.

helvella profile image
helvellaAdministratorThyroid UK

Can't help but be reminded of this old quote:

Orthodoxy ... is my doxy - heterodoxy is another man's doxy,

... quipped 18th-century bishop William Warburton. He was only punning, but it is true that individuals often see other people's ideas as unconventional while regarding their own as beyond reproach. The antonyms "orthodox" and "heterodox" developed from the same root, the Greek doxa, which means "opinion." Heterodox derives from "doxa" plus "heter-," a combining form meaning "other" or "different"; "orthodoxy" pairs "doxa" with orth-, meaning "correct" or "straight."

I though the longer you keep on breast feeding the better. The healthiest kids I know are those of weirdo friends who continued breast feeding until their kids were about 2 years old. Are you sure it's the not weaning rather than the using nasty "milk" formulas?

humanbean profile image
humanbean in reply to Angel_of_the_North

I would have thought the health of the mother would have a huge effect on the health of the children, and whether or not they can produce adequate milk would determine whether or not the child had to be weaned earlier or later.

I read an article quite recently about a baby that died aged about 10 - 14 days because the mother produced no milk or almost no milk, and nobody realised. So the baby starved to death while the mother was being bullied into feeding the baby herself.

Angel_of_the_North profile image
Angel_of_the_North in reply to humanbean

Those kids I mentioned weren't actually weaned that late, they just continued to have breast milk for a long time in addition to the rest of the diet. Agreed about mother's health.

in reply to Angel_of_the_North

I now wish I had added some bottled milk although even better would to have beenon this forum a couple of years before having my babes. I was low on iron, B12 and vitamin D as well as having produced two babies without enough thyroid hormones.I breast fed and yet could not possibly have provided everything they needed. Thye are not the healthiest children inthe world by any means.

Mine went straight from the bottle to food it was easy when I brought home my first child I hadn't a clue what to do lucky I was married to the eldest of five who told me quite simply to feed one end and changed the other, simple

serenfach profile image
serenfach

My mother was a trained nurse, a midwife and then a health visitor. I asked her advice about food to wean my first daughter. Her reply "well, you had zebra...". OK, we were in Africa at the time, but still! Her best advice to all mothers was "feed them until their eyes pop".

Daughter looked like Winston Churchill - a fat blob - at a year oId, but is now tall, slim and leggy, with tall slim leggy children of her own. I had a "scrungler" - like a mouli, and whatever we were eating went through that - meat and three veg, lasagna, spag bol, the lot. None of them have any food allergies.

I had the exact opposite to you. My daughter was putting on so much weight but the clinic never said a word about it, even though I asked she is now 5ft 10 inches tall and slim

Once I had gotten the hang of it I never went back either

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