As you may know, Lord Hunt of Kings Heath led a regret debate in the House of Lords on Wednesday 20th June, which went really well - hansard.parliament.uk/lords...
What you may not know is that the person who actually first brought the whole problem to the attention of Lord Hunt was a lady called Kath Bell who was a colleague of Lord Hunt and who had been in touch with me for a little while. Kath has hypothyroidism and has had problems with treatment, like so many of us.
Lord Hunt was very interested in the plight of thyroid patients and contacted Lyn about having a meeting and the rest, as they say, is history.
I travelled to London on 20th June and met up with Kath and we travelled together to meet with Lord Hunt prior to the debate.
We were taken into the House of Lords dining room where we had tea and went through the final draft of Lord Hunt’s speech. One of the things that he was shocked about was the fact that the Brighton and Hove Hospital NHS Trust were telling patients in an information document that the only way they could access T3 was via a private endocrinologist which goes completely against the ethos if the NHS and I’m so glad that he used this in his speech.
We discussed a few more things and then he gave us a tour of the House of Commons, which was very interesting and very good of him to do. He then took us to the debating chamber and went off to write the final document.
As we listened to the debate we were so pleased to see the number of other members joining the debate, two of whom had thyroid disease and could really relate to our plight.
After members had spoken, the Lord O’Shaughnessy then stood up and started to speak. I was very pleased to hear him say, “I want to touch on one other area that my noble friend Lord Borwick described, and that is the poor understanding of that group of the population who are not able to turn T4 into T3. He mentioned that there might be a genetic factor and I would be interested in pursuing that further. Clearly, some very interesting work on rare diseases is going on in the NHS at the moment through the 100,000 Genomes Project. This might be a qualifying illness where the conversion does not take place naturally, and that might be something that we can pursue. I will take that up with him separately.”
At the moment the DIO2 genetic test is not done on the NHS and this may now mean that more research will take place into one of the reasons patients cannot convert very well as well as other reasons for non-conversion.
After the debate was over, he said a quick goodbye with promises for meeting up again once he had mulled over what the next step could be. I am pleased to say that he contacted me the very next day informing me of his next steps and as soon as I know this has been confirmed, I will let you know.
After the debate we met up with Lorraine Williams from The Thyroid Trust and a patient called Patsy, both of whom I’d had contact with previously.
Photos were taken outside the House of Lords and we then went out for a meal to discuss everything. We were so excited because the debate brought out all of our concerns and it seems that the Lord O’Shaugnessy took them very seriously.
Thyroid UK and ITT held a meeting with NHS England to discuss the ambiguity of their decision and it was agreed that Thyroid UK and ITT would send them a report of the problems thyroid patients are facing along with some recommendations. they were going to discuss this with their clinical working group. We are still awaiting a response but I will be sending the Hansard of the debate and mentioning something else the Lord O’Shaughnessy said, “Tonight, I will commit to pursuing further with NHS England ways in which they can clarify to CCGs the guidelines setting out the circumstances under which liothyronine should be prescribed, including looking at whether greater clarity on the criteria for appropriate patient usage is merited. I will also inform the House—through a letter to the noble Lord, Lord Hunt, a copy of which I will place in the Library—about the progress that we are making on the regional medicines optimisation committee.”
I actually feel more optimistic today than I have for a couple of years and I’ll keep you informed of progress.
Lyn Mynott, CEO, Thyroid UK
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This is excellent news. And even better because the buck is not going to stop here. I'm encouraged to remark on this among other things to Leeds CCG when we meet on Wednesday.
A brief extract of what we would like on the agenda:
1. The effective and speedy diagnosis, and the treatment pathway for sub clinical hypothyroid patients . See the background information below on the length of time it takes to diagnose thyroid patients (Diagnosis is a theme running through all of these issues).
2. The effective treatment for a cohort of diagnosed hypothyroid patients. Some thyroid patients cannot convert T4 – T3, and therefore solo T4 treatment isn’t effective for this cohort. (Please see the article attached). Thyroid patients with conversion issues experience continuing thyroid symptoms and are not identified through conventional diagnosis (e.g. TSH). Indeed, many thyroid patients experience ineffective treatment, because clinicians use a purely biological (blood test) diagnosis as a “successful” marker of satisfactory treatment with T4. The total reliance on blood tests, to the exclusion of other forms of diagnosis, have taken discretion and diagnostic power from clinicians, where decisions about a patient are made principally from a biochemistry/path lab that has no contact personally with the patient. This means the abrogation of patient presentation as a prime measure of diagnosis.
3. The length of time it takes to diagnose patients, and the failure to identify patients that cannot convert T4 – T3, means that patients continue to present with thyroid symptoms which takes up clinicians time and must be expensive for the CCG. - Please see the background information below on the Frequency of Visits to GPs (Without a Diagnosis of Hypothyroidism). I (Mr Leahy) myself have spent 3 and half years visiting my GP on a regular basis and have also been to see 2 rheumatology consultants, specialist vascular professionals, a vascular consultant, and an endocrinologist without any thyroid diagnosis whatsoever.
Issues & questions we would like to ask.
· What the general policy approach to diagnosis is- blood tests e.g. TSH only as a rule and FT4 sometimes (and when and why) and when FT3 is used? (And why FT3 tests are not undertaken, when the cost of the test is no more than FT4 (which FT3 could supplant).
· What the policy approach to the control of Thyroid therapy is? (Prevention, Patient Experience, and Patient Participation).
· We would also like to know if the CCG will prescribe T3 and if not why not: is this a cost issue or are you following guidelines?
· The number of patients on T4 in your jurisdiction? We understand that 10% of the patients within this total have a plausible need for T3 treatment. We think it is possible to use these numbers to compare the actual number of thyroid patients on T4, and those on combination or T3, and then to estimate the number of patients that will need some form of combination or T3 treatment.
We await the CCG response to our suggested agenda.
Absolutely, do remark on it. Send them the whole Hansard so that they have time to digest it before the meeting. Highlight certain areas of it! We are going to collate some case studies of people who have had their T3 taken away from them without a referral to an endo and some case studies of patients who can show they have low T3 or the DIO2 gene who have been refused a referral as Lord Hunt has asked for this.
Lyn, thank you so so much for all your hard work and getting these Lords involved. May I please add :-
diogenes has stated above : 3. The length of time it takes to diagnose patients, and the failure to identify patients that cannot convert T4 – T3, means that patients continue to present with thyroid symptoms which takes up clinicians time and must be expensive for the CCG.
Not only is it expensive for the CCG but it is also extremely expensive to the government in other ways. ie having to give Benefits to those who are 'left to rot'. Please see my post of a few months ago stating this exact point and the number of terrible stories in reply.
Excellent diogenes thank you! Yes there are problems across the UK with poor thyroid training, diagnosis and treatment, penalising guidelines, alongside awful NHS procurement, and horrendous price-hikes from big Pharma. What a cocktail that has led to.
Many doctors know that we are having to pay for private prescriptions, or worse still buy online from abroad - potentially 'dirty' drugs. Yet these doctors do not fight the perceived system. CCGs have no statutory powers to tell doctors they cannot prescribe; they seem to rule by a climate of fear.
Diogenes, I suspect that there could also be a scandalous under identification of babies with hypothyroidism due to misplaced reliance on the TSH test.
There are in some instances complete families of children with learning difficulties, for instance, sometimes large families who are all in care and because test results are fine and social workers have no reason to question medics the learning difficulty is assumed to be genetic.
Apart from the tragedy for the children concerned, the cost to society of providing special educational provision for these children is enormous. I wonder if this can be factored in somewhere.
Lyn, Amazing work by all of you who are involved, many thanks again.
I just wanted to draw your attention to those of us who have ended up so incredibly ill having been misdiagnosed, incorrectly medicated or not medicated at all. We were ignored for so long that we spiraled down into Myxodema Madness. In my own case I now believe I suffered from varying degrees of it over a few decades. This was despite my desperation to recover my health, knew I had a thyroid disorder, but was ignored
In my own case, even a variety of Psychiatrists were not recognising it despite me telling them all that I was diagnosed with myxodema (in1981) with a TSH of 77.
There are so many different aspects of ignorance, negligence - or whatever - involved with thyroid disease. I lost my son's childhood due to consultants being unable to correctly diagnose and medicate.
Lynn, Diogenes and all who have worked so hard on getting us this far, many, many thanks. I watched the house of Lords debate it was amazing, because everyone spoke with a clear understanding of the issues affecting us. There was far more understanding and intelligent conversation from the Lords than anything I have ever seen in the Commons!!!
I shall be sending a copy of the letter sent to me from Harrogate hospital endo dept which says even if they decide at my appointment that I need T3 they will not prescribe it!!!!!!!!!!!
crimple I watched it too and it was amazing how eloquent and succinct those Lords (and Ladies) were. They are certainly far more understanding and intelligent than MPs in the Commons, and most certainly more so than any doctor (or consultant) I have ever seen.
For the first time in years it looks as if there is someone listening. Thank you to all who have been instrumental in getting this issue heard and noticed.
I have struggled so much, so long, and I was very sad to read members tell of their loss concerning their children's childhoods.
I believe many of us could agree, we had many times we were under par, due to poor thyroid health and treatment, whilst bringing up children.
I sincerely believe I lost a huge part of my own childhood due to thyroid issues not treated, and probably not tested for.
My own grandmother died during an operation concerning her thyroid.
Getting thyroid health concerns, to matter in the house of lords, I believe, has given us hope, (that we have not dared have, each and every time we are turned away, or deemed depressed, or mad, by medics).
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Colin Dayan & Tony Weetman - Debate: This house believes that patients with hypothyroidism...
Hypothyroidism debate in Westminster Hall today
