CCG refusing to allow continued T3 'scripts from GP or endo but states "No guidance was given to cease treatment."WTF!!

[juliat]

somersetccg.nhs.uk/contact-...  26.04.16

Case Summary No: 1451

Trust / Providers concerned: Somerset Clinical Commissioning Group

Date Closed: 27 July 2015

Outcome: Not Upheld

 

What happened?

A patient complained as they were advised by their secondary care specialist that they could no longer receive prescriptions of liothyronine (T3) as a result of changes to the Somerset Clinical Commissioning Group’ s (CCG) prescribing formulary guidance for Somerset.

What we found

The prescribing formulary is developed based on National Institute for Health and Care Excellence (NICE) guidance and best practice, with the engagement of Somerset GPs.  The CCG has historically commissioned the use of liothyronine in acute trusts as a short term rescue therapy for patients with severe hypothyroid episodes, due to its the rapid response. However, the CCG has never approved the use of liothyronine as a long term maintenance therapy, a position which was agreed with local specialists.

This position was recently reviewed and reiterated that the CCG did not commission long term maintenance therapy with liothyronine, as it was not deemed to be a safe and a cost effective use of NHS resources.  GP practices and secondary care colleagues were reminded of this, with the expectation that specialist doctors working in secondary care would review patients and convert their treatment over to levothyroxine and also not initiate any new patients on liothyronine.  No guidance was given to cease treatment.

Putting it right

The complainant was given assurance that as with any drug, doctors in Somerset retain their clinical freedom.   Where the CCG does not consider the specialist recommendation to be a cost effective use of NHS resources then the CCG would not normally support the commissioning of the drug and doctors would be supported in making a different prescribing choice to the specialist recommendation.  Somerset CCG is fully supportive of doctors addressing clinical need and specialist clinicians working in acute trusts may make applications for individual funding in exceptional circumstances for drugs not formally commissioned.  

[jimh111]

How brave of the patient to make this complaint.  It's now a question of shaming Somerset CCG and holding them to account.  The CCG is not in a postition to decide that liothyronine is not suitable to long term use, especially when the PIL (product information leaflet) specifically states that it is for treatment of chronic (i.e. long term) severe hypothyroidism.

[juliat]

Just received email from our specialist which says 'it sounds if an individual funding application will be required'  see last paragraph of initial post. (CCG determination of complaint re. T3)

sending all of this to GP.

will push for this to be done.

thyroid readings just done all 'normal range' on 150 t4 and 10mcg t3 a day

[shaws Administrator]

The very thought of not being able to take a thyroid hormone that gives me good health and only prescribing one that made me very ill, wouldn't make any sense at all. (They would probably say it is psychosomatic).

The BTA are determined that levo is best and reluctant to allow people at least a trial of the addition of T3, or T3 only when levo doesn't do one any favours.

The phrase used above:-

('as it was not deemed to be a safe' and a cost effective use of NHS resources')- what has the patient to do - like some on this forum buy there own which isn't right. Besides the statement 'not deemed to be safe' is only a rumour for patients to toe the line.