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Thyroid UK
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Consultant "We are not allowed to provide long term care to patients"

About a year ago, I reported here that my endo said they were "not allowed" to keep people on their books anymore. He said managers pressured them to take people off the books and refer back to gp. In my case, the irony is that my gp is uselss, clueless and a bully. They wont give me ndt, have NO expertise in Hashi, so why should they be involved?

Yesterday, my gastro said almost exactly the same thing as he tried to get me off his books. As it is i only see him once a year for coeliac, down from twice.

He literally said "We are NOT ALLOWED to give patients long term care". He said managers bully and pressure them into taking people off the books.

He said all they are now allowed to do is suggest a plan and GPs can follow it as "they have the money".

In my case, GP refuses to do what both these specialists say:

Endo says i need ndt - they refused.

Gastro says i need a g free diet and creon for life. GP repeatedly tries to bully me out of creon.

This is what happens when you give too much power to GPs. There really is no hope.

It is negligent to take power away from specialists and give it to greedy gps who are only interested on revenue streams

12 Replies

how bloody disgusting, it is death by clandestine refusal.


Blue daff, my searches in SHS - Scottish Health Service - eventually revealed that the GP's there do NOT keep records 4 yrs after a death, or if moved away from specific GP!

It's a possiblity the NHS does the same. I found it such an exhausting and traumatising (effect of my BI) Couple of days of being transferred to/from one extension number to another, or having to phone other numbers myself that I haven't even started on my own NHS health records yetI think this is why the NHS IS urging people to register and start keeping OUR OWN RECORDS Via the NHS online website! It was for the 'security of info and my benefit) that I had to jump through so many hoops to try and get the info I wanted - my deceased father's and my own health history - and given both of us have lived in and been registered with Scottish and English GP's, I'm sure all will understand the difficulties, not impossibilities, of talking to the people I needed to - only to be told by them all about length of time records were kept or not in Scotland.

I'm not even in NHS now because of living in France, AND if, after the referendum in the UK, the vote is to come OUT of Europe, (BREXIT) - once that happens, if ALL expats living anywhere in Europe Return to UK for a holiday, our only access to any health provider, will have to be as a completely private patient. The same will apply for any UK resident coming to Europe! The RECIPROCAL ARRANGEMENTS that currently exist between UK and France/?Spain, will no longer apply!

Now (this is my guess!) I suspect it's why your (UK) local Chemists want to start their own databases for all your prescribed meds they supply you with! There are usually good reasons why people want to keep records, and I already trust my local pharmacy here, because if I forget to take my renewal prescription with me for my Thyroxin, which I have done twice this year, they will let me have the next months supply!

I'm not saying that UK chemists will do the same in the future, but it's a possibility. We can already do it for ourselves if we use the drugs.com website, Another American website and good idea I think!

I'm sorry but I can't agree with your arguments and reasoning! GPs everywhere are getting busier and busier, they are apparently amongst some of the highest classification statistics for suicide rates in the UK.

Have you asked yourself WHY you have Hashi's? Not everyone with Hypothyroidism develops it - thTs why I've done so much research into my own health history this year, it's been the best brain exercise I could have done given my BI - It's been like sitting on loo when you are constipated - forcing myself to remember where I was in my childhood, what illness or infections I had, 3 ops on same foot for changing bone deformities. plus knowing more recently what my father had! It's down to, not only my health, but also family connections. And not applicable to my family or health, Why do so many women in generations of a same family develop breast or other cancers?

So I do urge all people not to always blame their GP's or Specialists now, because no longer term records have been kept. I've only been here 8 years and I'm still struggling to get my GP, who I'm seeing this afternoon, to do more than want to just issue yet another med, I now have a urine infection, not cystitis.

The Regional Health Doctor I saw this week, has TOLD ME I have Thrombocytopenia, something I discovered for myself a couple of months ago and was also recent,y suggested by another member on here, because of all my different conditions and past health info.

There's also a distinct possibility my autoimmunity is not down just to being Hypo, it is possible to have several causes of autoimmunity. I have known since I was 14 that I was immune to the TB inoculation after testing at school, so didnt need the vaccine. I had TB as a baby and it can lie latent in the body. My dad had TB again for 2nd time, in his 70's and it was listed on his death certificate a few years later! My cause was a gland, possibly I'm now thinking it was a parathyroid thT was removed - but yes we do need to take care of our endocrine systems, and the pituatory, thyroid hypothalamus AXIS!

I'm sorry I know I keep repeating myself on these discussions, but there is always a good reason why these things happen to us - we need to look ourselves at our own whole health history.

We are the ones with the knowledge and the Power - It's just a shame the Specialists don't wake up to it and listen. It's out there on the Internet for anyone to find!


SAMBS, this link states how long patient records should be retained in England nhs.uk/chq/Pages/1889.aspx?...

This states retention periods in Scotland gov.scot/Publications/2012/...


sambs, what the government says and what it actually does are 3 different things, you cannot trust them whether we are in the eu or out of it, I personally think we shoul d come out as we spend fortunes on Brussels stupid laws, when it could all go to better use. I trust no one, they say one

thing and do what ever they want anyway- which ever way you look at it or what ever you look up, those rules can change in a day to suit themselves every which way, I was reading something about people opting out of having their data shared but it is STILL being shared regardless. just recently, a young

kiddie died in hospital but it has been found that the records were changed to cover up a multitude an d things not logged, the parents were on the news yesterday, there is an investigation going on but it is difficult now to get the evidence, so it makes no odds whether we are in or out of eu we will still have medical problems with the mainstream.


Bluedaffodil, I think specialists generally discharge patients to GP care when a condition is stable. Not sure what can be done about GPs who will not follow a specialist's treatment plan, other than formal complaints and changing GP.


This behaviour is a result of the changes to the health service that were made by the Health and Social Care Act 2012.


The Secretary of State for Health is no longer responsible for the health of the population. Instead the people in charge are the Clinical Commissioning Groups who are largely made up of GPs. This is why GPs are now often referred to as "gatekeepers", because they hold the purse strings. If a specialist or consultant did any treatment or consultation without a GP's permission then they are at risk of getting into lots of trouble and the hospital or organisation they work in might not get paid.

There is no longer such an organisation as "the NHS". It was legally abolished by the above Act of Parliament. Instead we have all these CCGs who are only legally obliged to provide ambulance services and emergency health care. Whatever else they provide is entirely up to them.

These policies have been put in place to carve up the old NHS for privatisation. Giving GPs the purse strings to hold, then starving them of funding, is the way to persuade people that the only way forward is for healthcare to become patient-funded. And once that happens, the private insurance companies move in, and we have a "health service" just like the US system - one in which poor people can't get health care at all, and slightly richer people go bankrupt to pay for their healthcare.


What rot!


Why do you say ' what rot'Glynisrose?


I will be having what is almost certainly my last appointment with an endocrinologist in a couple of months. She wanted to discharge me on my last appointment, despite the fact that I was so unwell (but it was “really nothing to do with Hashimoto’s”, according to her). My treatment can, apparently, be monitored by my GP – I pointed out that my GP had said that my increasing TSH was fine because it was “in range”, other blood tests get refused, and that symptoms were being ignored, and that I had no confidence in my GP’s ability to manage anything.

It seems that it is not common to be referred to an endo in the first place “just” for Hashimoto’s, and that is was only because I had so many symptoms, so I guess I was “lucky” to get the referral in the first place. I pointed out that I still had lots of symptoms, most of them the same ones, so couldn’t understand the logic of being discharged, but hey ho.

However, my time is obviously up, and that’s that. I see a different GP in my practice, who is far better, but there is still a general lack of knowledge in all-things-thyroid. My endo has got a certain understanding of my illness (acknowledges that being gluten-free is a good idea, and that the dreaded TSH should ideally be close to 1.0 or below), but I will be banging my head against a brick wall with the GP.


Perhaps you can persuade your Endo to write that to your GP beansmummy, do you think he'd listen though?


I can but ask but, of course, it doesn't mean my GP will take notice. My endo had already written that it was OK to have my TSH at 1.0 or below, but my GP panics about stuff like that.

I am more confident about arguing my corner now though, so won't be standing for any nonsense :)

1 like

.....Well done And good luck :-)


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