Meeting of the Parliament 04 December 2018
I have made many speeches in this chamber over 20 years but this is one of the most important. It is quite literally a matter of life and death, including my own.
I am not sure how I can address six years of evidence in around six minutes, but I must start by thanking the lead petitioner, Lorraine Cleaver, who resolutely stuck with the process during that time and who is in the public gallery, along with other thyroid sufferers.
I would also like to thank the convener of the committee, the committee members, the clerks, the Government and the many witnesses who gave evidence, including 50 who gave personal stories.
One of those stories is my own. I have Hashimoto’s thyroiditis, which is an underactive thyroid. I started on T4 in my twenties, but I became very ill 10 years ago. I would have told my whole story today, but we are short of time, so I will just say that after I was wrongly diagnosed with ME, I managed to persuade my GP to refer me to Dr Anthony Toft, who put me on T3 and I came back from the dead. Many thyroid sufferers have similar stories—in fact, the story that Brian Whittle told is similar to my own—but many more sufferers are not here to tell their stories because, sadly, some have committed suicide and others have died of associated medical complications.
The diagnosis and treatment of what is primarily a women’s health issue is, quite frankly, a scandal, and many are disbelieved by the medical profession. It is accepted that 5 to 10 per cent of patients do not do well on T4, although the real figure is thought to be much higher. Those people must be helped. As the convener pointed out, the Public Petitions Committee report concludes:
“It is important that these patients are believed when they report ongoing symptoms to clinicians.”
It is also important that they get the right treatment. The Government’s response to the committee’s report recognises
“that stronger links of communication and consistency of approach between GPs, in both the diagnosis and ... referral ... could be developed.”
The minister referred to that in his opening speech and also acknowledged
“that an endocrine learning module has ... been produced”.
I think that Dr Gregor Smith is arranging for that to be reviewed and I am pleased that that is happening. The Government’s response also says that it
“expects all clinicians to demonstrate a person centred approach”.
That would certainly help because, again, as the Government response acknowledges, symptoms must be taken into account and not just test results. That is hugely important.
In The Scotsman recently, Dr Catherine Calderwood, the chief medical officer, said:
“I want us to move away from the ‘doctor knows best’ culture to ensure a more equal partnership with people.”
However, shared decision making does not seem to apply at the moment to endocrine patients, because they are not told of all the available treatments and GPs are not working with them to reach the best treatment decisions. That is the reality.
Unfortunately, six years after the petition was lodged, the situation got worse, when T3 was withdrawn. When I first started to help with the petition, I thought that I was doing it for others and not myself, because I thought that my situation was sorted. However, due to the withdrawal of T3, and to the Scottish Government having admitted that the previous listening exercise did not meet its objectives, I wonder whether the Government would now consider undertaking a proper listening exercise to hear directly from thyroid sufferers here in Scotland. I put that to the minister.
It is appalling that thyroid patients have to buy natural desiccated thyroid hormone, or T3, from abroad, rather than just lie down and die, but many of the them do that because there is no other choice. The medical establishment is not listening to them. If I had had time, I would have addressed the issue of desiccated thyroid, which was a perfectly good treatment before synthetic thyroid was invented. People started using it around the 1980s and it is still widely used abroad, but I really have to limit my remarks to T3.
The Scottish Government’s response on T3 is the most important aspect for those needing it to survive:
“The Scottish Government’s position is that treatment for Hypothyroidism in Scotland should be consistent with the BTA guidance in relation to Liothyronine (T3) and clinicians in Scotland can prescribe T3 where it is safe and clinically appropriate, on the advice of a consultant in endocrinology.”
The minister backed that up in his speech.
The most pressing, life-saving and immediate task for the Scottish Government is to instruct health boards that they cannot stop prescribing T3 to existing patients or stop new patients from accessing it. It is neither safe nor clinically appropriate for health boards to take patients who are functioning well on T3 off it and put them on T4. That is a death sentence. They are completely different medicines. The Medicines and Healthcare products Regulatory Agency says that the products are not considered interchangeable and states:
“Levothyroxine and Liothyronine are not substitutes for each other.”
In a letter dated 31 July to my colleague Lewis Macdonald MSP, who has given me permission to quote it, NHS Grampian says:
“No new patients should be prescribed ... T3 or Armour thyroid products regardless of the source of the recommendation.”
That means regardless of the clinician. It goes on to say that
“patients currently prescribed ... T3 or Armour Thyroid should be reviewed by their GP and where possible switched to Levothyroxine therapy (T4).”
It claims that
“this advice is evidence based”
and
“reflects the view of the British Thyroid Association.”
No, it is not, and no, it does not. There are peer-reviewed studies showing that T3 works and there are many patients like me who can bear witness to that. The BTA says:
“The BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or as an endorsement for its discontinuation.”
Of course, when T3 cost very little, no NHS boards were stopping it.
What is the cost to human life, not to mention our economy, of taking women off their life-saving treatment? To put it in context, it is like taking insulin away from diabetics and no one would dream of doing that. It would be helpful if the Health and Sport Committee would consider undertaking a short inquiry into the issue, with direct evidence from the women who are taking T3 and the endocrinologists who are prescribing it. That would add to the work that the Public Petitions Committee has done.
The Parliamentary Under Secretary of State for Health, Lord O’Shaughnessy, recently commissioned evidence from thyroid organisations, including the British Thyroid Foundation and Thyroid UK. In that report, Professor Chatterjee, the BTA president, says:
“The current uncertainty, with liothyronine-treated individuals either being denied ongoing prescriptions or needing to source the treatment themselves at their own cost, seems very much against patients’ interests.”
The report also shows that prescriptions for T3 have fallen most dramatically in areas where the levels of deprivation are greatest, therefore the poorest patients are being hit the hardest.
Every MSP in the chamber will have constituents or relatives who have a thyroid disorder and who are being badly let down by our health service. I hope that the Government can stop the harm that is being done to those people.
In conclusion, I remind those in the chamber that hypothyroidism affects 2 per cent of the population and that 95 per cent of sufferers are women. Therefore, it is a huge issue of gender discrimination. Most clinicians are men, which led thyroid patient, Clare Pullar, to say that it is
“a male-dominated profession actively silencing a female-dominated patient group.”
That group of women will no longer be silenced and, as their representatives, we must listen and act on their behalf. On behalf of Scottish Labour, I say that we are on the side of patients—mainly women—who are suffering and dying due to the scandal of thyroid diagnosis and treatment in this country. This debate, the Public Petitions Committee’s report and the Government’s response to that report should be a start in getting thyroid justice for them.