Don't Take My T3 Away Video Diary
My name is Paul Robinson. I am the author of three books on the treatment of hypothyroidism: The Thyroid Patient's Manual, Recovering with T3 and The CT3M Handbook. Together, the books now form the Recovering from Hypothyroidism series.
However, I am also just one patient within our UK National Health Service (NHS). Like many others the T3 (Liothyronine) that I need to keep me well is now under threat of being stopped. I would be offered T4 (Levothyroxine or Synthroid) but I would be a virtual invalid on this and all my work with thyroid patients would have to stop.
I have decided to do a series of YouTube video diary entries detailing my struggle to retain my T3 prescription on the NHS (which I have had for about twenty years). We are all in this mess together and I am hoping the video diary and the information here will help thyroid patients and raise awareness. I apologise to readers from other countries as some of this is specific to the UK health system, but I hope that you can still appreciate it.
Every time I add one more entry in the 'video diary', I will add another YouTube link to it here. I will also add extra supporting information that might be helpful to other patients. I believe that the combination of the text here (with supporting anonymised letters) and the bite-sized videos will make it easier to follow for any thyroid patient who is put in a similar position. Just text to describe this process would work for some thyroid patient's but others would find it too overwhelming or just dry and boring. I'm doing the combination as I think it works well.
This entire situation has been largely brought on by NHS mismanagement of the suppliers of Liothyronine. This has resulted in the NHS paying more for Liothyronine than any other country in the world! We are approximately paying 40 times more here than in other countries! That is bad management! Nothing else to be said about it - apart from, "Fix it NHS!".
The view of many endocrinologists that T4 monotherapy always works is also a massive problem. This view has been proved to be incorrect by a lot of new research and through the experience of vast numbers of thyroid patients from all parts of the globe.
Here is the Video Diary
Part 1 - Don't Take My T3 Away Video Diary
This is all about the first letter that arrived in the mail. Here is the link to the video: https://youtu.be/rCg-VUohBAw
I am obviously not going to name names or put revealing text in this document about the location of my doctor's surgery or endocrinologists I might see. But here is a paraphrase of the first letter I received out of the blue:
"I would appreciate it if you would fill in the Thyroid Symptoms Score enclosed and the GP questionnaire as we have been asked by the Clinical Commissioning Group to review our prescriptions of Liothyronine. If you can return these we can complete our audit. The CCG have requested this audit as Liothyronine is a very expensive medication and there is insufficient population based evidence to show that combination therapy is superior to Levothyroxine monotherapy. Once we have the data it will then be reviewed by the Consultant Endocrinologist"
I had some questions about this and I asked them of my GP - in essence:
"In it, you state that you need to have the data so you can 'complete your audit of Liothyronine prescriptions'. You also state that once you have the data, the Consultant Endocrinologist will review it. I am working on the information requested but I have some concerns that need addressing prior to my returning all the information. Please explain what the nature of the audit is? Are you simply reviewing the patients involved or are you returning information to the CCG? Can you confirm that only you, your office staff and the Consultant Endocrinologist, selected by you will see the personal data that I will return? I would not be happy for anyone in the CCG to see my response or to have a endocrinologist selected by the CCG to look at my data and assess whether I ought to be on Liothyronine or not. Their cost- motivated bias against Liothyronine is well documented. I will wait to hear back from you."
Important Note: When I received this letter I immediately check with my GP's office that I had the Full Opt Out of Data Sharing in place I had done it about 18 months ago. But I had seen a nurse at another clinic during the treatment of a chest infection and someone in the paperwork I had signed, the Opt Out had been Revoked. So, I put it in place once again! This is very important to the approach I was considering taking.
After this point I had to wait for a reply... and I don't know if my approach will be successful.
Part 2 - Don't Take My T3 Away Video Diary
Here is the video diary entry: https://youtu.be/u0V5rL66Elo
Here is the explanation in text:
This is what I received next from my GP - the situation becomes more clear and more worrying. Paraphrased but pretty much what was in the letter:
"The audit has been asked for by the CCG. We have to comply. The information will go back to the CCG medication team, who may, depending on the data returned, arrange for the consultant endocrinologist to review the data to see if the prescription of Liothyronine is appropriate, The audit has been brought about by the CCG to reduce cost and improve prescribing. We have no option but to comply and if you do not complete the audit information we may still be requested to fill in the information on your behalf"
After taking some advice I might have a plan to stop the audit of patients on Liothyronine by the CCG (Clinical Commission Group).
I wrote to my GP:
"I understand that you feel compelled to complete the audit for contractual purposes. However, there are some things that I would like to make you aware of. Let me just restate that from what you have told me my data will be taken without my consent and I won't be told exactly how it will be used. I have not been told timescales, how it will be measured, or who will see it. I have also not been told that it will be anonymous. I have spoken with someone who is knowledgeable in data protection issues in the medical area. I have now got clarity that this audit and the way it is being handled, including your last letter appears to be breaching GDPR on many levels and may be breaching common law Health and Social Care Act (s251). I have written to the DPO at the CCG to get clarity. When I have this I will get back to you. This is sensitive medical data and needs to be properly safeguarded. If you are notified by the CCG that they have accessed my data without my consent (and against the opt out on shared data), please notify me immediately as required by GDPR. I would appreciate it very much if you hold fire on giving any information to the CCG until I have received clarification from the DPO (or the CCG has dropped this audit). This whole situation is causing intense stress and lack of sleep. It is not a healthy situation at all and it appears other CCGs are trying this type of strong-arm tactic with their GPs and patients. I am sorry to have to take it in this direction but it still is sensitive medical data and needs to be properly safeguarded."
GDPR is our data protection regulations. If someone has a Full Opt Out of data sharing only your primary care physicians should be viewing your medical records and data. If anyone else requests it, the data is supposed to be made completely anonymous and the process of its use is supposed to be totally transparent and traceable and any audit process should be published and available (amongst other things).
I also wrote an email to the Data Protection Officer in the CCG itself, attaching all the letters so far and the audit forms, and the Liothyronine Pathway document that the CCG is supposed to use:
"I recently received the attached letter from my GP. I have opted out of my data being shared other than with my direct care providers. Please can you confirm the legal basis of the request contained within the letter. It is unclear from your privacy notice how my identifiable sensitive personal data can be used in a local audit. I have effectively been told in the letter that my data will be taken without my consent and I won't be told exactly how it will be used. I have not been told timescales, how it will be measured, or who will see it. I have also not been told that it will be anonymous.
I would be grateful if you would:
1. Provide the GDPR risk assessment for this process.
2. Set out the process for anonymising my data.
3. Provide a detailed description of the data processing that will be undertaken.
4. Explain how the outcome of the processing of my data will be made transparent to me.
5. If my data is to remain individual and therefore recognisable confirm the s251 process that has been undertaken.
6. Provide all legal or legislative basis by reference to specific act and section of the act.
7. Provide the scope document of the local audit mentioned in the letter. If my data is being audited there must be a stated outcome by which the results of the audit will be measured.
8. Explain to me how my data can be taken and processed without my consent.
9. Explain how the data requested is proportionate and limited by reference to the objectives of the local audit.
My GP appears to feel compelled by contract to follow the CCGs directive. However, I have already had legal input that this process appears to breach GDPR on many levels and possibly may be breaching common law Health"
I have added in an email to the DPO:
"Just to emphasise what I have said:
1) If an 'audit' is required why not do this as a proper audit with safeguards and anonymity?
2) If the CCG require a re-check of patients on Liothyronine, why not use the existing Pathway - it exists already and ensures a GP works with an endocrinologist. Why not just ask the GPs to assess where the patient is re: the established Pathway and refer if needed or yearly if needed?
It makes no sense to me, other than a guise to cut costs and in the process breach or push the boundaries utterly of GDPR.
I am still incredibly disturbed by this approach. I have lost 7 pounds of weight in two weeks and not slept well. It looks very wrong!"
I have no idea at this stage if this has a chance of working! I feel what the CCG is doing is heavy handed, liable to provide a cost biased assessment of my need and plain wrong. They have a Liothyronine Pathway for assessing thyroid patients - why not use that. Note the Liothyronine Pathway may be unique for each CCG so you'd need to find your's for your area.
Part 3 - Don't Take My T3 Away Video Diary
This is just me getting very cross about the whole price mess the NHS has allowed to happen with Liothyronine prici in the UK. I apologise for some of the language as I was fuming with it all at the time. There is a bit of table banging also - apologies. Here is the link to the video: https://youtu.be/ILzm2_sYuNA
If I had been running the NHS I would have picked a good executive who knew about medicine licensing and business and told him that he had six months to source two new suppliers of Liothyronine at competitive prices. I would have given him that one task and told him his performance evaluation and any pay rise depended on it. End of. If he got that done well in a reasonable time I'd have let him do the same with any other medications we are paying too much for.If I had been running the NHS I would have picked a good executive who knew about medicine licensing and business and told him that he had six months to source two new suppliers of Liothyronine at competitive prices. I would have given him that one task and told him his performance evaluation and any pay rise depended on it. End of. If he got that done well in a reasonable time I'd have let him do the same with any other medications we are paying too much for. It isn't hard to fix.
Part 4 - Don't Take My T3 Away Video Diary
Here is the video diary entry: https://youtu.be/HDUgqxzLUaI
I received a letter today, 7th October 2019 from my doctor. It was a nice letter and he apologises for getting me stressed out with this audit.
However, the important thing is that I got, "Thank you for clarifying the matter with the DPO of the .... CCG. The introduction of GDPR has raised many challenging issues and it is certainly very complex for practices to deal with. However, I can assure you that we totally respect your confidentiality and as I have said before no data has currently been sent regarding yourself and this audit. Again please accept my apologies for any distress that this has caused. I look forward to hearing from you regarding your inquiries".
So, basically, my doctor is not going further with returning any audit data for me (and hopefully any other patient with a full opt out unless they have inadvertently implied they are giving consent to it). He is now waiting for me to hear back from the Data Protection Officer in the CCG. I am still waiting to hear. So, this is a positive result but I need to know the legal position that the DPO thinks we have and then decide where to go from there.
Part 5 - Don't Take My T3 Away Video Diary
Here is the video diary entry: https://youtu.be/MFQifV0ek0I
Note: I have spoken at the end of the video about what happened to me during the very last full Levothyroxine trial that I went through. I hope this does not distress any of you. At the very end of Chapter 28 in Recovering with T3 I talk very briefly about what happened to me. I had forgotten that I had shared that until I looked again.
Anyway, here is the update:
There have been more communications. Here are the essence of them:
From the Data Protection Department at the CCG on 22nd November:
"I can confirm that your answers to the questionnaire will not be shared with the CCG at any point. Once the questionnaire has been completed by you, it will be sent to the specialist to receive a clinical review.
Please be aware that this is not an audit, but a clinical review.
It would seem that there has been a misunderstanding on the part of your surgery (family doctor)"
They went on to say that the justification for doing this was based on Article 6(1)(e) Public Task - which is a 'wide powers' piece of health leglislation usually used for more serious issues. They seem to be justifying flaunting my rights to data protection and my opt out by using this. Is it legal? It is definitely not ethical.
So, I thought this at least sounds better than an audit, so I asked a couple more questions, including:
1. Why they aren't just using the Liothyronine Pathway - the normal process where my GP would refer me to an endocrinologist if he thought there was a problem.
2. Will my GP be able to choose the endocrinologist to review this. It still feels like a breach of normal process, and a bit of a 'set up'.
On 27th November I got this back:
"As part of the clinical review the endocrinologists have requested that GPs fill out the GP questionnaire for all patients who were started on Liothyronine before the current guidance was published.
The information will be shared with the endocrine team. The GP will not be able to choose a specific consultant to do this. It will be up to the endocrine team to decide who will review the cases as and when they receive the information"
The last answer is very different from the response I got on 22nd November.
There are two issues here:
A. All endocrinologists are not equal - some are more biased against T3 than others, and more influenced by political/CCG pressure than others.
B. My medical records look like they will be in a committee and this does not feel like data protection is being followed. A group of endocrinologists who have not been treating me are NOT my primary care team.
I have written back saying that sharing my health data with a team does not feel like the limited sharing with a primary care provider that I would expect to occur given I have done the full opt out of data sharing.
I didn't say this but I also haven't been told exactly who will see my data by name. So, this appears to infringe data protection transparency guidelines.
I actually feel that they are twisting their previous words and it still is some form of audit by committee. A audit disguised as a clinical review. They are definitely avoiding complying with the data protection law under the guise of needing to use article 6(1)(e).
It is unethical, and the legal position is unclear.
I am seeing my family doctor tomorrow, and will be giving him the audit/clinical review data.
Part 6 - Don't Take My T3 Away Video Diary
Here is the video diary entry: https://youtu.be/uHymYbGg0Jo
This 5 minute update is about the conversation I have just had with my own doctor.
I felt good about my conversation with my family doctor. It seemed very clear from the conversation that the way I have approached this has helped:
1) A full opt out of data sharing.
2) Pushing the Data Protection Offer (DPO) at the CCG hard with many important questions.
3) Insisting that my family doctor sends nothing back to the CCG until I had answers from the DPO .
He believes that they now know that I will take this very seriously should they wish to consider a clinical review with me in person. That effect alone has been worthwhile.
*** I will add more as the story unfolds ***
Here is my YouTube channel where you can see all of my videos: https://www.youtube.com/user/RecoveringwithT3/
and my book Facebook page: https://www.facebook.com/recoveringwitht3