Thank you very much, convener.
The petition was lodged a long time ago, and there has been no real resolution in respect of effective diagnosis and treatment of thyroid sufferers, despite the best efforts of the committee over the years. The sufferers under the legislation are mainly women and disabled people, which has not come out enough. We are talking about a lifelong incurable and debilitating chronic condition, and it comes under the Disability Discrimination Act 1995. In some ways, the situation is worse now because, previously, prescribing T3 under the care of an endocrinologist was not a problem, and now it is. As we know, cost is the cause of the problem.
One of the petitioners, Lorraine Cleaver, and hundreds of other women still have to buy desiccated thyroid hormone privately from abroad. Their choice is to pay for their life-saving medicine or, basically, to suffer and possibly die. Women who are living in poverty, for example, do not have the choice to buy from abroad, such as those women have.
We should remind ourselves that desiccated thyroid hormone is a medicine that was used here as the standard, and that it was, in fact, the only treatment until synthetic thyroxine was invented and made a big profit for drug companies. There are still women around who remember how well they were on DTH that had been prescribed by the national health service, compared with how unwell they have been since they were put on to synthetic T4. I have spoken to such women.
We might recall that it is officially admitted that 10 per cent of patients on T4 do not do well and that many are unable to convert it. In America, the figure is 15 per cent. We all think that the figure is higher than 10 per cent, and no one is telling us or the committee what is happening to that 10 per cent. There has been no answer to that question.
NHS Lanarkshire, for example, has recently assured members of the Scottish Parliament that unlicensed drugs are used frequently and that it is using one now for eye conditions because it is cost effective. However, DTH is not used because it is unlicensed. There are such questions around. Why not DTH? We have had no real answer to that question.
I have received several letters recently on the matter—as I am sure the committee has. Obviously, I have no time to read them out, but the thrust of them is that people are still unable to get T3. NHS Tayside is seemingly the worst offender, and NHS Grampian is a close second.
The minister’s letter seems to commend the guidelines that were published in March, but they are not new—the committee has Lorraine Cleaver’s comments on them and Dr Midgley’s response. Two of the references are 28 years old, and the archived 2006 guidelines are also referenced. Therefore, we are no further forward. Dr Midgley has questioned Dr Colquhoun’s reasoning on the guidelines and has said that the reasoning is basically erroneous and that the statement is provably incorrect. He has sent Dr Colquhoun two recent papers by eminent thyroid experts. That needs further consideration.
The draft guidelines from the National Institute for Health and Care Excellence are out, and they have no clinical evidence base. That is also an issue.
Thyroid issues were looked at during the Scottish Women’s Convention’s health presentation. I am not sure whether the committee has had any feedback on that—the committee considered that it could get that. In discussing the petition and whether to close it, it is fair to quote what Lorraine Cleaver said of her experience and the process. She said:
“Whilst we have made progress, within these five and a half years, people are still paying for private blood tests, consultations and thyroid medication online. We are basically paying a fortune for what we should be rightly provided on the NHS. It is still a battle. Often, it feels when we hold roundtables with surgeons and consultants that it is a bunch of professional men telling a bunch of women who are actually living this that they are wrong. So, the fight still goes on.”
A proper exercise needs to be carried out by one of our committees to listen to the voices of the women sufferers. Their voices need to be heard.
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When the committee heard directly from mesh survivors, it made a huge difference to their cause for justice. Of course, they have not yet achieved that justice, but it made a huge difference. Women patients’ voices need to be put on the record in Parliament, so it is unfortunate that the Health and Sport Committee seems to be moving back from that. I hope, therefore, that the Public Petitions Committee might consider having a round-table evidence session to hear women’s voices, and to hear directly from the sufferers.
The minister’s letter refers to the questionable guidance, but he also says that he is “currently working with ... boards”. I think that the committee needs an update from him on how he is working with boards and what they are saying, given that, as we know, NHS Tayside and NHS Grampian are still not supplying T3 to people who need it.
The minister mentions the Scottish endocrine interest group, but nobody seems to know who they are or what they do—perhaps the committee knows—and we also do not know whether general practitioners are in the loop. Have they been advised to refer to endocrinologists the 10 per cent of sufferers who are not doing well? Have they been advised that they need to keep prescribing T3, if necessary?
We should also remember that the Scottish Women’s Convention is calling for specialist thyroid nurses. We need more women endocrinologists and we need the same funding and level of concern that diabetes receives. Finally, surely Lorraine Cleaver needs to be heard before the petition is closed.
I ask the committee not to let down the sufferers, who are hoping for a better outcome, and to take some evidence and hear their voices before you conclude your consideration, just to find out whether the petition’s aims have been achieved. I am sad to say that it does not look as though they have, at the moment. The minister has made a lot of suggestions about what might be, but there are no concrete answers.