Had a very positive discussion with a Senior Government Minister last Friday. I took him through my story of diagnosis, career destruction and having to cling onto a job rather than having a career.
He was genuinely interested and we agreed to speak again.
Do the members here think a survey would be worthwhile? How many of us have experienced work problems?
Has anyone actually managed to benefit from Reasonable Adjustmemts?
If there is interest, I will design the survey.
PaulB
Yes, but I think as well as a survey some qualitative information would be helpful. People's stories tell so much more than a survey and they will lend additional support to the findings. If you could include a space for people to write a couple of paragraphs of their experience and make sure if they wish to be contacted in future they also have a choice to give an email address it could be useful for following up.
From my point of view, one of the problems with thyroid conditions is that when newly diagnosed it's very difficult to tell if work problems are down to the illness or down to the job. When overwhelmed with endocrine imbalance, it changes your perception of what is happening around you so that things that would be tricky but not overwhelming before, are experienced as much more traumatic. This might be becauses cortisol or andrenaline levels are out of balance due to the impact of changed thyroid status.
Thyroid imbalance can affect emotional responses so while things are out of balance it's difficult to objectively analyze a situation and gain your employer's support. It's hard to explain what's happening too as there is so little information given to patients about how it affects you and what you can do about it. Doctors seem to assume that once your TSH level is right, you will be back to normal but judging by this site, it's just not as simple as that. Also, there is very little GP support to sort out the impact of imbalance that thyroid surgery and conditions cause so it's impossible to tell your employer when you will get back on track. It doesn't give you much to go on when negotiating with employers.
I'm not sure what a person would ask for in terms of reasonable adjustment if you can't afford to go part-time. Maybe a nap at lunchtime every day and time to attend doctor's appointments in work hours and some days when you can't function to just go home and rest?
Having to cling onto a job rather than developing a career sounds familiar.
I presume you bring a male perspective which I think is really important as thyroid care has been badly funded, partly I think (only my opinion) it afflicts a higher proportion of mid aged women who used to be practically written off career wise but it's not the case these days and many of us need to work until nearly 70 due to the changes in pensions so we can't afford to put our careers on hold and we need better endocrine care and more healthcare support. 10 min GP apts are not enough to sort out the complexity of endocrine imbalance and the blood tests for diagnosis are inadequate.
Just a suggestion but you could get Healthwatch England to roll it out to local Healthwatches too. If there is a cost saving element it could roll. For example, proper support such as diabetics get to manage their condition, ie specialist diabetic nurses and clinics which thyroid patients do not get, could reduce the strain on GP services and cut costs of multiple return visits to GP's. Cutting the cost of health complications such as high cholesterol brought on by improper management of thyroid conditions due to lack of continuity and knowledge at local GPs. Cost saving on loss of time at work and state benefits when unable to work any longer. Cost saving on keeping families together.
Let's see if I get a good response, and what the moderators think.
The savings and economics argument is strong, I believe. Many of the issues are due to untrained and untalented managers who have been identified as costing the country £bns in lost productivity.
Regards
Paul
Nanaedake you've described exactly how difficult it is when untreated or for many when still under or incorrectly treated. Around the time I was diagnosed I remember thinking I had no references to judge whether what I was feeling was thyroid, just me or everyone else! It's a scary time and so difficult to articulate because aside from actually forming coherent sentences, you're not really quite sure of what you need.
Good work we need to bend some ears in influential places! I certainly had the experience you are highlighting with a concerted effort to swizz me out of my redundancy to boot when I got laid off.
I'm self-employed and came close to early retirement due to the poor management and understanding of thyroid problems by the GP. Thanks to this forum and all the kind and wise people on here I've been able to treat myself and am gradually getting better. Even though I could give myself some Reasonable Adjustment, this was very difficult for my particular working pattern, and, being self-employed, there was no sick or holiday pay. It seems to me that lots of us struggle to keep going and have no spare energy, and individual protests are so easily dismissed and ignored, that any way of representing our combined voices (via a survey, for example) would be great.
Important I think to emphasise the potential cost savings.
I have had MRI, multiple bloods and other investigations for many different problems that were caused by my hypothyroidism, none would have been needed if my treatment had been timely.
What a waste of precious NHS resources
Mark
Certainly let’s talk. What part of UK are you in? Happy to exchange phone numbers.
Sir Patrick McLoughlin asked me to review and comment on the recent Green Paper for him.
I am also pushing with Prof bodies like IMechE
Paul
Hi Pàul, Just a quick message to say that I'm planning to send you a direct reply. Kind regards, Mark
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