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Your name and address
Date
Dear (name of your MP)
NHS England Policy on Liothyronine and Clinical Commissioning Groups
I am writing to raise my concerns that many local CCGs are not following NHS England policy or updated clinical guidance from the British Thyroid Association (BTA) when prescribing liothyronine (T3) – a vital thyroid medication.
Many patients are having this vital medicine withdrawn, there are variations in patient treatment in local areas (postcode lottery), and the extra costs caused by ineffective healthcare are significant for both patients and the NHS. I am one of those patients.
NHS England recently held a consultation – “Items which should not routinely be prescribed in primary care: a consultation on guidance for CCGs” which included liothyronine, a medication that 10-15% of patients with hypothyroidism need. I am one of those patients.
[INSERT A BRIEF NOTE OF CIRCUMSTANCES IF YOU WOULD LIKE TO]
Please see below a short briefing note from Thyroid UK, a patient support charity, in respect of the decision by NHS England.
A joint report by Thyroid UK, Improve Thyroid Treatment (ITT), Midlands Thyroid support group and Thyroid Patient Advocacy entitled, “Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid Patients” which provides more detailed information is attached/enclosed.
I understand that there will be a members’ debate on the cost and policy concerns, outlined in the report, and I ask that you offer your support.
I look forward to hearing from you.
Kind regards,
Briefing Notes from Thyroid UK on NHS England Decision
“Items which should not routinely be prescribed in primary care: a consultation on guidance for CCGs”
NHS England published their decision in respect of the consultation, “Items which should not routinely be prescribed in primary care: a consultation on guidance for CCGs”. In respect of liothyronine, they stated, “The joint clinical working group therefore recommended the prescribing of liothyronine for any new patient should be initiated by a consultant endocrinologist in the NHS, and that de-prescribing in ‘all’ patients is not appropriate, as there are recognised exceptions. The recommendation would therefore be changed to advise prescribers to de-prescribe in all appropriate patients.”
The NHS England board recommended that, “…prescribers in primary care should not initiate liothyronine for any new patient and ….that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.”
NHS England stated that the background and rational for placing liothyronine on the list initially was: “Due to the significant costs associated with liothyronine and the limited evidence to support its routine prescribing in preference to levothyroxine, the joint clinical working group considered liothyronine suitable for inclusion in this guidance. However during the consultation we heard and received evidence about a cohort of patients who require liothyronine and the clinical working group felt it necessary to include some exceptions based on guidance from the British Thyroid Association.”
In their response to the NHS England consultation, the BTA recommends, “Patients already established on Liothyronine and experiencing symptomatic benefit should be allowed to continue with Liothyronine treatment prescribed in primary care. Abrupt change in treatment may impact negatively on well-being. Changing to Levothyroxine therapy should only be considered if the patient is not experiencing benefit from Liothyronine and any change should only be made following informed discussion with the patient and, if necessary, advice from an endocrinologist.”
They also recommend, “For patients with hypothyroidism who are not on Liothyronine but wish to be treated with Liothyronine, the principles guiding decision-making should follow those outlined in the BTA statement [1]. Combination treatment with Levothyroxine and Liothyronine should only be initiated and supervised by accredited endocrinologists [1]. Patients experiencing symptomatic benefit on a combination Levothyroxine and Liothyronine regimen should be able to continue such therapy prescribed from primary care.”
Thyroid UK agrees with the BTA. Sending all patients currently on liothyronine to endocrinologists is unnecessary. GPs have been perfectly capable of monitoring these patients on liothyronine until now. Patients currently on liothyronine and doing well do not have a need for a referral to an endocrinologist wasting precious NHS time and NHS funds.
The latest versions of guidance from the BTA can be found here:
The BTA response to the consultation can be found here:
The guidance used by many CCGs is the incorrect 2015 guidance which is for primary hypothyroidism. Patients who need T3 have secondary hypothyroidism – problems not stemming from the thyroid gland itself but from other areas of the body. The BTA have produced guidance for patients, GPs and endocrinologists, which CCGs seem to be ignoring.
It is not ethical to make decisions on irrelevant and out of date guidance and completely ignore more current, relevant guidance.
Thyroid UK, ITT (Improve Thyroid Treatment Campaign Group), Midlands Thyroid Support Group and Thyroid Patient Advocacy have made some recommendations that would not only help patients who have had their liothyronine withdrawn or who have been refused liothyronine outright but would also save NHS funds:
Recommendations
- The cost of liothyronine is reduced by proper management of procurement. Either, it is sourced from existing EU sources at reasonable competitive prices or lower pricing is negotiated using The Health Service Medical Supplies (Costs) Act.
There should be comparable costs of liothyronine tablets in the UK to that of EU prices. Poor budgetary management should not be an excuse for a forced change in clinical decision-making.
- CCGs are given clearer guidelines by NHS England that are unambiguous and that takes into account the position statement of the BTA which includes the statement, “The BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or as an endorsement for its discontinuation.”
- CCGs are asked to comply with NHS England guidance to prevent the risk of postcode lottery:
- Liothyronine prescribing, once instigated in secondary care, is then passed back to primary care thus sharing the costs across both sectors.
- Patients who are clinically well on liothyronine continue to benefit from it without threat of removal; these patients will have already tried levothyroxine without successful resolution of their symptoms.
- New patients, where there is clear indication that levothyroxine is not restoring them to a euthyroid state, are referred to an endocrinologist as soon as possible so that a trial of liothyronine can be started.
- Patients who have been well for many years on liothyronine and previously unwell on levothyroxine should be allowed to continue without referral as this is putting undue pressure on secondary care.
- CCGs, Hospital Trusts and Health Boards should comply with NHS decisions and restore the prescribing of liothyronine to ensure good health for thyroid patients. Cost should not be put before patient health and good health should not depend on where a patient lives.
- CCGs, Hospital Trusts and Health Boards should, in the meantime, authorise clinicians to prescribe licenced liothyronine products from Europe on a named-patient basis, as has happened in the past due to supply issues, until the cost of UK liothyronine products are reduced to a level that is comparable with the EU market place as would be expected for a country (currently) within the EU.
Thyroid UK
12th April 2018
Thyroid UK
32 Darcy Road, St Osyth, Clacton-on-Sea, Essex, CO16 8QF
Tel: 01255 820407 E-mail: Website: