Thank you, convener, and thanks to the committee for letting me speak today.
As you will know, it has been almost three years since I lodged the petition with two co-petitioners, who have now left the project. I am a bit concerned that the petition has come to a kind of impasse, because at the last meeting at which it was discussed it was agreed that the Scottish intercollegiate guidelines network would look into doing a piece of work on guidelines for the illness.
As I noted in my submission to the committee last week, I had a meeting with SIGN because I have concerns about guidelines. For many illnesses, guidelines are fraught with problems, because they are not about personalised medicine but about putting people in a box. I think that I was right to have those concerns, because it was in the press a few months back that some of the people working on the guidelines committee have financial conflicts of interest—or, certainly, financial interests.
Anyway, we had quite an intensive meeting, the upshot of which was, I think, that SIGN will do a sweep of all the current evidence. Although there is really good evidence backing my petition, the volume of it would be drowned out by the current older evidence, so we could end up with the same old same old at the end of a five-year project.
It was agreed that we would try to work with the Royal College of General Practitioners in Scotland and produce a kind of best practice document. Essentially, though, that would do what should already have been done. It would not actually achieve anything new, which was what I asked for in the petition; it would simply flag up to GPs that if a patient comes to them with continued problems on thyroxine, they should do this, this, this and this. Those guidelines already exist, but they have never been adhered to or noticed.
Although that piece of work would be really useful for 80 per cent of the population with thyroid problems—after all, they go back to their doctors with odd symptoms, and doctors are not aware of the things that they should be doing next, such as checking their B12 levels, iron, cortisol et cetera—it will do absolutely nothing to address the people who have no ability to use levothyroxine, which is the one and only national health service-prescribed medication for the illness and who, according to the Royal College of Physicians, make up 5 to 10 per cent of the population with thyroid problems. I have to say that we think that that figure is a lot higher; in my experience, it is vastly higher than that.
The piece of work that SIGN will conduct will never touch those people, and they were the entire reason why I came to the Public Petitions Committee. Quite apart from that, the work will not address the fact that the medication that I need to stay alive is not available on the NHS and is not licensed in this country. That is a job for the Medicines and Healthcare Products Regulatory Agency.
I do not know whether the committee will recall this, but Alex Neil came to the committee a year and a half or two years ago to give evidence on the situation. Although he acknowledged that it was the MHRA’s job to look into licensing, he said that maybe that situation would change if we got independence—so, of course, it has not changed. I am concerned that, although we have a Scottish NHS, we have no method for looking into the licensing of new drugs for Scottish patients, and I urge the committee to have one more round-table meeting to look again at the fresh evidence that is coming through and which I have discussed on the 10 to 20 per cent of people who do not recover.
The committee could also look at the licensing situation. The European Parliament has closed down my petition there and says that the issue is up to the Medicines and Healthcare products Regulatory Agency. We are just not moving forward in any way. I know why the issue is not being looked at; it is because I am looking for a natural product, and a product from nature cannot be patented, so there is no great will to put a lot of money into research.
However, as the late Dr Skinner said, there is something rather disingenuous in a situation where we have to prove the effectiveness of something that was used for 80 years and was then cast aside and removed from the British national formulary in favour of a new synthetic that did not have to prove its mettle. We are having to prove a negative, which is a ridiculous position to be in. The issue is costing the NHS billions, and the drugs that we are looking for are cheap. There is no reason why Scotland cannot conduct a trial to compare the old natural thyroid with the relatively new levothyroxine, which is giving all the problems.
To sum up, I urge the committee not to close the petition because, in three years, all that we have ultimately achieved is a piece of work by SIGN that has not begun, that might take two years and which will address only patients whom I was never campaigning on behalf of.
Thank you.