Thyroid UK is trying to get funding to run a telephone helpline for people with thyroid disease.
Thank you for participating in the first poll - tinyurl.com/TUKPoll1
In answer to some of your comments, the helpline would be run by an outside organisation but the people on the telephones would be trained by Thyroid UK in various aspects of thyroid diagnosis and treatment including the treatment of liothyronine and NDT.
The people on the telephones are already well trained in support work and are very understanding.
We will still continue to run the HealthUnlocked community but we know that some people really need to speak to someone rather than joining a community. Thyroid UK receives a lot of calls and I often speak to people because they really need this kind of support although due to a heavy workload, it can take a long time for me to return the calls.
This is why we want to run a helpline.
If there are questions that can't be answered, they will be referred back to us and we can then speak to the person concerned or we can contact our advisers.
I hope that this has answered some of your concerns.
I know advertising was chock full of younger women but even they have started to use a huge range of people - spectacle-wearers, old, disabled, every ethnicity, tall, short, both genders and gender-challenged, ...
Lyn it would be helpful to put the info on the 2nd poll about who will be on the other end of the phone as many responders are asking if or assuming they would be medically trained.
Hi Lynn , having read this post about this 2nd poll . i now understand more about what you're proposing , and why there is a need for it ..I think perhaps a lot of people answering the polls haven't yet read this post .. and therefore are still not clear who they would be talking to , or how they would be trained, or why you need a help line to help manage TUK's workload of phonecalls.
Perhaps it would help to add/link this information to that post, so people see it before they answer this poll ... i voted 'no' to the 1st one .. but had i known more about what was proposed and why, i wouldn't have voted No .. i only saw your other post about it after i'd voted.
I personally wouldn't use a help line nowadays , but i may have done so earlier in my journey when i was recently diagnosed , and even now i found the internet/forum was a very daunting thing for me to join up to /write public questions on.
So i can see the need for a help line, and can see why using an established outside organisation and giving their call handlers additional thyroid training might be the most pragmatic way to do it .
Perhaps the rules of running a poll mean you can't add additional info to 'the question',, but as it is, i'm not sure you're getting as many yes's as you would if people knew more information before voting.
Thanks tattybogle. I realise now I perhaps should have put more info in the first poll but it was just supposed to be a spot poll and I didn't want to cause any bias. It hasn't turned out well, has it?
I can't actually put anything more in the poll itself as it only allows a certain number of characters .
I wouldn't say its 'not turned out well ' exactly .. but its made it clear no one fancies a helpline that might offer the current NHS /Levo only / that's not a thyroid symptom' attitude.If you need the polls to have more yes's for evidence . I'd just accidentally hit 'delete' on the first one and write it again saying " When looking for help and information , would you have found it helpful if ThyroidUK had trained some people to answer Questions using an established telephone Helpline service ?"
but then i don't have to follow any rules to apply for funding . so that's easy for me to say
Don't you think people answering the phones need to actually have walked in our shoes to know what it's like and to give advice ?
I'm not convinced any amount of "training" can give someone unaffected by thyroid issues the knowledge and empathy to give useful help. Just my thoughts.
It rather depends on the question they want help with .. and if TUK staff are overrun with phone calls anyway and need help to deal with them, perhaps it's better to try this idea out rather than saying it wouldn't help anyone.. Lynn has said if they were complicated the would still be passed on to TUK to deal with directly. So i take your point , but i think it could have some uses.
Totally agree with you. I don't think anyone, no matter how well trained, could really get a grip on this disease and it's complexities if they don't have it themselves.
To experience it is quite extraordinary that’s for sure! Although it was hellish it was also very fascinating to see what happened mentally and physically when ones world completely falls apart. I hope it has made me a better more compassionate person with better insight into the condition. I know of others who go into a denial mode, belittle their suffering and claim they are a hoax - no doubt it is a way to cope with an awful situation and try and survive it but I can’t imagine how it would engender insight into or empathy with people in the same boat.
I am not sure about this one. Even if a person has not experienced it themselves, we all have an imagination and one hopes some grasp of what it is like to suffer as a human being and to wish to help alleviate that suffering if at all possible. Conversely one of the worst, if not the worst, doctors I ever saw told me she had hypothyroidism yet was hell bent on reducing my medication by a whopping 75mcg in one go back to a useless starter dose with no functioning thyroid! I put my foot down and called my endocrinologist’s secretary who told me to ask for a referral back to them, which was my right, so they could put a stop to her meddling. I didn’t spend 9 months of hell getting optimised to have that lunatic to undo it all in a matter of minutes. Once I confronted her and said I wanted to be referred back to them she backed down. I swapped GP’s fast and had a much better experience.
Just because someone shares an illness does not automatically translate to them being competent at understanding or managing yours and vice versa. Just give me someone knowledgable, caring and competent who actually listens.
It’s poked under some interesting stones that’s for sure. It’s has been a bit of a shock to me. People have had such awful experiences that it’s made them highly suspicious of any form of “help” being proposed assuming they will get the same poor quality service they have suffered already. It’s very telling how deep this cynicism and distrust runs.
I wish I’d seen this before I answered the poll. If I’d known that the phone line would be staffed by people trained by Thyroid UK I would have answered yes. The admin on this forum are an absolute wealth of knowledge, which is why I’m a regular visitor. Having access to a helpline staffed by people trained to a similar standard would be great.
Some people experiencing the mental problems and desperation that can come with thyroid conditions might prefer to speak to someone. I’m very pleased to see Thyroid UK growing and evolving.
I’m not sure if I agree that the person on the help line needs to have a thyroid issue or not. Some thyroid sufferers seem to have no issues and do well on Levothyroxine treatment. My sister who had thyroid cancer is one of these people. I also know two friends who have Hashimotos and the other graves. They’ve both had very different experiences to myself if any issues at all once treated on Levothyroxine alone. They don’t understand what I’ve been through. So it doesn’t always stack up that the person helping needs to have had the same disease I feel. I think those that do well on Levothyroxine only think I’m overreacting or something when that’s far from the real truth of it. As I’m a poor converter and positive DIO2 this may have a bearing on it I’m not sure. A help line would be good for some people but not all. It definitely would be good for those feeling left out on their own by feeling abandoned by the NHS. I do like to read the forum daily to get a wider understanding of people’s issues. If it wasn’t for this forum I don’t know what would have happened to me.
I like to think I have helped a number of people also by pointing them in the direction of my private only Endocrinologist who have since got back to me by PM saying their lives have changed for the better with being properly diagnosed now. This is how I too was diagnosed finally after being abandoned by the NHS through help from a lovely administrator.
I would be hesitant of relying on the advice of one advisor. The beauty of this format on the website is that several sources can give advice and different options depending on their unique knowledge and experience. My thyroid health has been restored through this forum by several fantastic contributors however would one person on an official helpline be comfortable/ or insured?? to recommend an unlicensed treatment such as NDT? I feel this is quite a different responsibility and caution may prevent the best option in the circumstances.
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