Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Yes I agree, but also to No. !0 and possibly even MEP's....they get paid a lot for very little give them some work to do!!!! Sally xx Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? Perhaps Sheila could update her letter re current numbers etc. (Sorry Sheila to want to add to your work load).If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 I agree, and I will update my letter re current numbers of members and current number of counterexamples to T4-only therapy. I will try to do this tomorrow and post to all members asking them to forward it to their MP as a matter of some urgency, which will be absolutely invaluable should the Mail on Sunday publish our article. Marrying the two together would have a tremendous impact on them. Jacquie/JOT, please do not post this on our Face Book until I have updated the letter to the MP and then you can upload the link. I will ask to update this on the web site too. It is up to each and every individual to do their bit, and we must not leave this to others to do. We are first and foremost a forum to campaign for a better diagnosis and treatment protocol (together with a choice of treatment) for those suffering symptoms of hypothyroidism - and this is what we will do. Luv - Sheila Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? Perhaps Sheila could update her letter re current numbers etc. (Sorry Sheila to want to add to your work load). If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Hi Sheila I do all the entries and don't put anything on FB until it is has been put on the forum first. I usually copy and paste what you have written (perhaps editing slightly if necessary). I would like to put a 'FIGHTING FUND' entry for our Demonstration, with TPA bank details, paypal, Amazon links but am not finding the words right now but will have this up soon. Love Jacquie > > Jacquie/JOT, please do not post this on our Face Book until I have updated > the letter to the MP and then you can upload the link. I will ask to > update this on the web site too. > > It is up to each and every individual to do their bit, and we must not leave > this to others to do. We are first and foremost a forum to campaign for a > better diagnosis and treatment protocol (together with a choice of > treatment) for those suffering symptoms of hypothyroidism - and this is what > we will do. > > Luv - Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 No, unfortunately what happens is the MP MEP or other refers to the BTA for advice - result is wasted effort. > Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? > > If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Hopefully, this will end shortly - the MP's will learn that it is certain thyroid associations that are driving thousands of people to Internet and Local Thyroid Support groups like ours, because they continue to remain ill within the NHS. If they were getting the diagnosis and treatment they needed, there would be no need for groups such as TPA. Never say " die " Glynis. If I felt like that and considered everything was a wasted effort, I would give up tonight and never bother again. We have to stay positive. When it comes to the diagnosing and management of hypothyroidism, the thyroid associations have got it wrong, wrong, and wrong again. They give out misleading (and sometimes incorrect information) , they make statements that are never backed up with references to the scientific evidence, and they are causing real harm to over a quarter of a million sufferers of symptoms of hypothyroidism who need the active Thyroid hormone T3, they insist they should stay on the inactive thyroid hormone T4 - as everybody does well on it. They have got away with bad behaviour (some might say criminal) to date, because nobody has dared to challenge them, but the time has come for this to stop - and they now need to answer some very serious questions. As I said before, never say " Die " . luv - Sheila No, unfortunately what happens is the MP MEP or other refers to the BTA for advice - result is wasted effort. > Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? > > If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2011 Report Share Posted June 27, 2011 Quite right. If we give up who is going to take up the challenge....Sheila has started something for us and we must support her and help her get the job finished...somehow....we must keep on trying whatever it takes....dont give up.xx Hopefully, this will end shortly - the MP's will learn that it is certain thyroid associations that are driving thousands of people to Internet and Local Thyroid Support groups like ours, because they continue to remain ill within the NHS. If they were getting the diagnosis and treatment they needed, there would be no need for groups such as TPA. Never say "die" Glynis. If I felt like that and considered everything was a wasted effort, I would give up tonight and never bother again. We have to stay positive. When it comes to the diagnosing and management of hypothyroidism, the thyroid associations have got it wrong, wrong, and wrong again. They give out misleading (and sometimes incorrect information) , they make statements that are never backed up with references to the scientific evidence, and they are causing real harm to over a quarter of a million sufferers of symptoms of hypothyroidism who need the active Thyroid hormone T3, they insist they should stay on the inactive thyroid hormone T4 - as everybody does well on it. They have got away with bad behaviour (some might say criminal) to date, because nobody has dared to challenge them, but the time has come for this to stop - and they now need to answer some very serious questions. As I said before, never say "Die". No, unfortunately what happens is the MP MEP or other refers to the BTA for advice - result is wasted effort.> Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? > > If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 I didn't mean that we should give up - but find a better way. There has got to be some way we can make ourselves heard without the people we are writing to going to the BTA and RCP for their point of view. Wasted effort is just as demoralising as inertia. Glynis > Hopefully, this will end shortly - the MP's will learn that it is certain > thyroid associations that are driving thousands of people to Internet and > Local Thyroid Support groups like ours, because they continue to remain ill > within the NHS. If they were getting the diagnosis and treatment they > needed, there would be no need for groups such as TPA. > > Never say " die " Glynis. If I felt like that and considered everything was a > wasted effort, I would give up tonight and never bother again. We have to > stay positive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 I would NEVER do that (with all the respect for who suggested this). I have seen about 10 different GPs, all very stupid and arrogant people. Why should I waste my time with them anymore? Vivien > > Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? Perhaps Sheila could update her letter re current numbers etc. (Sorry Sheila to want to add to your work load). > > If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 If there are other ways we can make ourselves heard Glynis, then please suggest these - this affects each and every member. I think over the years we have just about gone down every road available, but we have to go on, and on and on until we DO make ourselves heard. NEVER say NEVER. " If at first you don't succeed, TRY, TRY and TRY AGAIN! " Luv - Sheila I didn't mean that we should give up - but find a better way. There has got to be some way we can make ourselves heard without the people we are writing to going to the BTA and RCP for their point of view. Wasted effort is just as demoralising as inertia. Glynis _,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 ….and that is exactly why we are still struggling to get ourselves heard. Sorry Vivien, but when you joined this group, you joined a campaigning group to try to get a better diagnosis and treatment (plus choice of treatment) for all those left suffering the symptoms of hypothyroidism. There are plenty of other thyroid support groups out there who are not involved in campaigning to help their fellow sufferers. The Home Page message on this forum support group clearly states: " Our aims are: to persuade the endocrinology specialty to rethink their diagnostic and treatment protocols, raise awareness of treatment options, and provide educational and emotional support to sufferers. Patients are desperately seeking ways to work with their doctors to obtain the best treatment possible, so we are also a support group aiming to increase awareness of the prevalence of all thyroid related problems and of the difficulties which face patients in obtaining a correct diagnosis and treatment. Patients have the right to optimal treatment, using either synthetic or natural hormone replacement " . On our web site Home Page www.tpa-uk.org.uk - we state: " ……. TPA is an independent user-led organisation established to ensure that all thyroid disease sufferers are given a correct diagnosis and receive effective treatment. TPA believes all patients should have access to all relevant tests and treatment, including synthetic or natural T3. As a result, TPA campaigns for better education in diagnostics and treatment and provides extensive support and guidance for all sufferers. TPA is managed by a group of dedicated thyroid patients who volunteer their services freely…. " Our Registered Charity's Aims are : http://www.charity-commission.gov.uk/Showcharity/RegisterOfCharities/CharityFramework.aspx?RegisteredCharityNumber=1138608 & SubsidiaryNumber=0 Area of benefit - THE UK AND WORLDWIDE Charitable objects THE RELIEF OF SICKNESS AND PRESERVATION OF HEALTH OF PERSONS SUFFERING FROM THYROID-RELATED DISEASE AND RELATED CONDITIONS IN THE UK AND WORLDWIDE, PARTICULARLY BUT NOT EXCLUSIVELY BY A) EDUCATING AND PROMOTING GOOD PRACTICE IN THE TREATMENT OF THYROID-RELATED DISEASE AND RELATED CONDITIONS AMONGST HEALTH PROFESSIONALS, SERVICE PROVIDERS AND THE PUBLIC PROMOTING HIGH STANDARDS AND PROFESSIONAL COMPETENCE IN THE PROVISION OF PATIENT CARE ENGLAND AND WALES AS THE DIRECTORS SHALL DETERMINE FROM TIME TO TIME Classification What • EDUCATION / TRAINING • THE ADVANCEMENT OF HEALTH OR SAVING OF LIVES Who • THE GENERAL PUBLIC / MANKIND How • PROVIDES ADVOCACY / ADVICE / INFORMATION • SPONSORS OR UNDERTAKES RESEARCH • ACTS AS AN UMBRELLA OR RESOURCE BODY " What more can I say - if we are to achieve our aims and objectives, we need as much help and support from all our members -otherwise, we might as well not be here. We work hard to give all our members the help and support they might need. We are not even asking anybody to sit down and compose a letter to their MP (which I appreciate can be difficult) - all we are asking is that members do whatever they can to help their fellow sufferers, by copying the 'amended' letter and sending it online (with just one click) to their MP. If we don't try to make a difference, who, out there, will? Sheila I would NEVER do that (with all the respect for who suggested this). I have seen about 10 different GPs, all very stupid and arrogant people. Why should I waste my time with them anymore? Vivien > > Could it be helpful if ALL members of TPA made a concerted effort by sending Sheila's great letter to our individual MPs? Perhaps Sheila could update her letter re current numbers etc. (Sorry Sheila to want to add to your work load). > > If we ALL undertake to bombard MPs with thousands of letters over the next few weeks/months it might make some impression. > _ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Sheila I think Vivien may have misread MPs as GPs? chris > > ..and that is exactly why we are still struggling to get ourselves heard. > Sorry Vivien, but when you joined this group, you joined a campaigning group > to try to get a better diagnosis and treatment (plus choice of treatment) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Hi Jacquie, putting something on the forum doesn't mean it should automatically be put into our Face Book. There are some things we need to keep private and not send out to the rest of the world, but this is a case of looking to the future to see what consequences might arise after setting out 'plans' so openly. Now that we are a registered charity, we really need to play this extremely carefully. I know for a fact that a certain thyroid association not far from my front door is doing what it can to denigrate the name of TPA as it is, and will not stop. Luv - Sheila Hi Sheila I do all the entries and don't put anything on FB until it is has been put on the forum first. I usually copy and paste what you have written (perhaps editing slightly if necessary). I would like to put a 'FIGHTING FUND' entry for our Demonstration, with TPA bank details, paypal, Amazon links but am not finding the words right now but will have this up soon. Love Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 I use my discretion, Sheila. I wouldn't want to compromise your hard work and all you have achieved for us all. I am letting people know that we campaign as well as support because that is what sufferers are looking for. Our members on Facebook are aware of this... Love Jacquie > > Hi Jacquie, putting something on the forum doesn't mean it should > automatically be put into our Face Book. There are some things we need to > keep private and not send out to the rest of the world, but this is a case > of looking to the future to see what consequences might arise after setting > out 'plans' so openly. Now that we are a registered charity, we really > need to play this extremely carefully. I know for a fact that a certain > thyroid association not far from my front door is doing what it can to > denigrate the name of TPA as it is, and will not stop. > > Luv - Sheila > > > > > > > > Hi Sheila > > I do all the entries and don't put anything on FB until it is has been put > on the forum first. I usually copy and paste what you have written (perhaps > editing slightly if necessary). > > I would like to put a 'FIGHTING FUND' entry for our Demonstration, with TPA > bank details, paypal, Amazon links but am not finding the words right now > but will have this up soon. > > Love > Jacquie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 I use my discretion, Sheila. I wouldn't want to compromise your hard work and all you have achieved for us all. I am letting people know that we campaign as well as support because that is what sufferers are looking for. Our members on Facebook are aware of this... Love Jacquie > > Hi Jacquie, putting something on the forum doesn't mean it should > automatically be put into our Face Book. There are some things we need to > keep private and not send out to the rest of the world, but this is a case > of looking to the future to see what consequences might arise after setting > out 'plans' so openly. Now that we are a registered charity, we really > need to play this extremely carefully. I know for a fact that a certain > thyroid association not far from my front door is doing what it can to > denigrate the name of TPA as it is, and will not stop. > > Luv - Sheila > > > > > > > > Hi Sheila > > I do all the entries and don't put anything on FB until it is has been put > on the forum first. I usually copy and paste what you have written (perhaps > editing slightly if necessary). > > I would like to put a 'FIGHTING FUND' entry for our Demonstration, with TPA > bank details, paypal, Amazon links but am not finding the words right now > but will have this up soon. > > Love > Jacquie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Whether it's MP's or GP's my sentiments still apply for both. Luv - Sheila Sheila I think Vivien may have misread MPs as GPs? chris > > ..and that is exactly why we are still struggling to get ourselves heard. > Sorry Vivien, but when you joined this group, you joined a campaigning group > to try to get a better diagnosis and treatment (plus choice of treatment) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 ok fair point... i for one get wrapped up in my own problems and forget about wider issues....but do let me know when there are things i can do to help chris > > Whether it's MP's or GP's my sentiments still apply for both. > > Luv - Sheila > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Hi Sheila I have copied your letter to my MP Andy Burnham who used to be secretary of State for health under the Labour government. If I do get any response I will of course come straight back to you. Love Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2011 Report Share Posted June 28, 2011 Mine has just gone off to my MP too !!! Strength in Unity !!! Jackie x Hi Sheila I have copied your letter to my MP Andy Burnham who used to be secretary of State for health under the Labour government. If I do get any response I will of course come straight back to you. Love Debbie Quote Link to comment Share on other sites More sharing options...
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