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.
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
Hansard (Hansard is a substantially verbatim report of what is said in Parliament) for this debate can be found here:
hansard.parliament.uk/lords/2018-06-20/debates/5A689F14-D2F8-4796-8732-CBD0E3B3E508/BrandedHealthServiceMedicines(Costs)Regulations2018