Joint thyroid charities/groups Thyroid UK, The Thyroid Trust, ITT Improve Thyroid Treatment, and Thyroid Support Group Norfolk recently wrote again to the NHSE about the August 2023 guidance to ICBs (England only). We are waiting on a response which we will share when it is received. Our letter to NHSE is below (Lyn Mynott at TUK has given permission to share it on HU)
Joint response by the named UK thyroid organisations
NHSE: Liothyronine for hypothyroidism
“Items which should not routinely be prescribed in primary care: policy guidance” –
Official Publication reference: B1174 August 2023
We are very concerned that we are still being contacted by patients about the above guidance. As you will recall we wrote to you in August 2023 about this guidance. We expressed concern about the contradiction in the 2 documents issued by NHSE.
The August 2023 liothyronine guidance was meant to remove confusion on prescribing. However, as a result of these contradictory pieces of guidance, patients are still being deprescribed or refused liothyronine.
Document 1 is “Items which should not routinely be prescribed in primary care policy guidance”:
england.nhs.uk/long-read/it...
This is guidance for Integrated Care Boards (ICBs), organisations commissioning services, and prescribing healthcare professionals. It contains the following guidance:
Do not initiate.
Deprescribe in patients currently prescribed this medicine.
Prescribe only if no other item or intervention is clinically appropriate.
Prescribe only if no other item or intervention is available.
Prescribe only if for a named indication in this guidance.
Document 2 is “Liothyronine advice for prescribers”:
england.nhs.uk/long-read/li...
This document is intended for prescribers and includes the guidance:
Liothyronine should only be initiated by an NHS consultant endocrinologist when being prescribed for the treatment of hypothyroidism.
Liothyronine should be prescribed only if no alternative intervention or medicine is clinically appropriate or available for the patient.
Patients taking liothyronine for the treatment of hypothyroidism who have not already been reviewed, should be reviewed by an NHS consultant endocrinologist.
The above policy guidance in Document 1 recommends that liothyronine should not be initiated and all patients should be deprescribed. This guidance does not make it clear that patients already reviewed within the NHSE by a consultant endocrinologist should not be reviewed, or sufficiently clear that a small number of patients may require liothyronine. It is inconsistent with Document 2.
In August 2023, the response from yourselves to the thyroid patient charities and groups when we raised the issue of the inclusion in Document 1 of “Do not initiate” and “Deprescribe in patients currently prescribed this medicine”, was that it is based on feedback from stakeholders.
We therefore obtained the stakeholder feedback considered by the Priority Prescribing Clinical Working Group (PPCWG) via a Freedom of Information request (FOI-2309-2022860). This is set out below and the complete PPCWG meeting minutes are attached.
From the information provided on the FOI relating to the governance of the August 2023 documents we cannot see any mention of deprescribing patients and do not initiate. The stakeholder feedback considered at the PPCWG meetings was very clear that there was a postcode lottery and that confusion needed to be addressed. The stakeholder feedback received and considered in the PPCWG does not support the policy wording issued in Document 1.
The NHSE website Open Prescribing used by prescribers, along with many ICBs, now references Document 1 not Document 2. Busy clinicians are likely to search only for the recommendations within Document 1, see the first two statements and use these for guidance, rather than look further at the specific advice for prescribers linked in this document. Indeed, the prescribers have 2 sets of guidance that are contradictory and may be confusing for some prescribers.
While these two lead recommendations remain in Document 1, patients will continue to have their liothyronine withdrawn, whether they have had a review with an endocrinologist or not. This is not what the guidance is intended to achieve. This is placing increased demands on clinicians, causing harm to patients and resulting in unnecessary costs for the NHS.
As patient groups, we have previously and consistently demonstrated in discussions with the NHS Medicines Policy and Analysis Unit that unnecessary cost was being incurred in the NHSE by policy confusion. We also expect that a great deal of money and resource was spent updating the August 2023 guidance, yet it seems not to have delivered on its aim of clarity. It has ignored stakeholder input and remains contradictory.
The inconsistency, confusion and failure to recognise stakeholder input in the two documents may well be an oversight by NHSE. We request that Document 1 is brought into alignment with the stakeholder feedback received and that the guidance is aligned to Document 2 as follows:
1. The first recommendation is changed to “Do not initiate in primary care.”
2. The second recommendation, “Deprescribe in patients currently prescribed this medication” is removed.
3. The NHS Medicines Policy and Analysis Unit also provided a commitment on 6 December 2022 that it would change the recommendation to: ‘The policy guidance recognises that a small number of patients may require liothyronine. The guidance also recommends that all patients taking liothyronine should be reviewed by an NHS Consultant Endocrinologist (if they have not already been reviewed) to determine future treatment plans and that liothyronine should not be initiated in primary care.’ We ask you to uphold this commitment and add this recommendation into Document 1.
We look forward to hearing from you at your earliest convenience.
Signed on behalf of
Thyroid UK, The Thyroid Trust ITT, Improve Thyroid Treatment Thyroid, Support Group Norfolk
BTA FINALLY PROVIDED A FORMAL RESPONSE TO NHS ENGLAND CONSULATION
Levothyroxine is the treatment of choice for hypothyroidism
Response from my MP regarding prescribing of Liothyronine.
