Thank you, convener, for allowing me to come along to the committee. I thank the committee for its work and for the debate in the chamber. The issues can be difficult to get to grips with, but I think that committee members have done that and know what the issues are.
I thank Dr Toft—I have just heard that he is retiring—who has been on a thyroid journey over the past decade, often against intransigent establishment views. He saved my life and the lives of others.
I also thank Lorraine Cleaver, who had hoped to be here today but unfortunately could not be. T3 was not really her issue, but it took over the debate to an extent because of the massive price hike, which meant that boards refused to prescribe it. When Lorraine started the petition, she wanted to help other people to avoid the horrors that she had been through, and she was hopeful that one of the outcomes might be that she could get desiccated thyroid hormone on prescription rather than having to buy it on the internet. We have not reached that stage, despite it being the only treatment to be extremely effective until thyroxine—T4—was invented and made money for the pharma industry. Desiccated thyroid hormone remains unavailable in this country, and the industry cannot make money out of it, which is unfortunate.
The committee paper is very informative, as was the way in which the convener outlined the issue. The paper highlights some of the remaining outstanding issues, one of which is the possibility of a Health and Sport Committee inquiry, which has been supported by some members of that committee. The main reason to have an inquiry is that the issue is an on-going one that directly affects the health and wellbeing of patients, who are mainly women. Although the petition has helped to raise the profile of the matter, there has not been a resolution to all the issues. We need more clarity on the guidance from Government and health organisations, as there are inconsistencies.
A Health and Sport Committee inquiry might do something like what was done with the mesh inquiry. Hearing about the issues directly from women who are suffering is really powerful, and perhaps that committee could also hear from endocrinologists who are prescribing T3 and have seen the difference that it makes. It is important to support them, because in some ways they are up against the establishment, too. However, obviously, that is up to the Health and Sport Committee. I have written to that committee and sent you all a copy of that letter.
10:45
As the convener pointed out, the minister said that he would write to health boards, which he may have done, but unfortunately nothing has changed. I sent some examples to Joe FitzPatrick and the reply that I received was rather worrying. He said:
“it is important to emphasise that clinicians can prescribe T3, or recommend prescribing T3 for an individual patient if their symptoms are not adequately controlled with ...(T4). That decision is ultimately for the clinicians involved in the case”.
However, he went on to say that the decision is also for
“the relevant NHS Board ... to take.”
Unfortunately, the three boards that I have been dealing with—NHS Tayside, NHS Grampian and NHS Ayrshire and Arran—are still refusing to prescribe T3 to patients.
I will not take much longer, as I imagine that members will want to come in, but I want to share some of the words of patients. One wrote to the convener and said:
“The words spoken by Mr FitzPatrick gave me real hope that my fight for T3 was finally over.”
However, she went on:
“NHS Tayside have removed T3 from their formulary that is their procedure on prescribing T3. I cannot put into words how angry, disgusted, frustrated and upset I am”.
She said that it was “a cruel blow” and “hard to bear”. That letter was sent at the end of January, so it is recent and she is not getting her T3.
Another patient said that she has
“been on a combination of T4/T3 for ... 10 years.”
She goes on to say:
“Without T3 I am unable to function properly. I’m struggling with my mental health at the moment as it is”
and
“I am only just starting to plan for my future”.
She says:
“Basically if my T3 is stopped they may as well just give me a loaded gun.”
That was dated late last year, after the debate, so it is another live case.
I have another letter here from a woman who could not get T3 from the NHS but who is buying it privately. She says
“I doubled my kidney function on my own and I can breathe without inhalers and steroids”.
She is having to do that on her own because she is not getting the T3.
Therefore, although the committee’s work has been excellent, the debate was good and I was heartened by what the minister said, unfortunately, health boards are taking that clause in his letter saying that it is up to them to mean that they do not have to prescribe it, even when clinicians have done so.
It is essential that the Government addresses the genuine experiences and concerns of patients and sufferers. I suggest that the committee keeps the petition open for now, because there are so many outstanding factors, not least that health boards are still not prescribing T3.
There is a lot of follow-up to be done from the debate. I am going through it at the moment to pick up things of interest that I want to write about, and the committee might want to do that as well. For instance, I want to get some feedback on what has happened in relation to Dr Smith’s comments. However, the most worrying thing is that health boards are basically ignoring what the minister said, they are ignoring clinicians and they are certainly ignoring women whose lives depend on the treatment.