Medicines 'red list'

[BazzaS]

You rang, HB?

 

"Red lists" are an attempt to control costs.

It doesn't mean the medicine can't be prescribed, but that the CCG (Clinical Commisioning Group) (if in England) has to approve it.

 

So, your approach should be:

1) get your GP "on board" ; let them know you are happy with the current medicine and ask them if they can suggest a better alternative.

If not : can you help with the CCG process? Did they want you to contact / see your hospital consultant??

2) if you haven't been seen by your hospital consultant (or their team) within the last year they MIGHT insist on you being referred by your GP again for the consultant to become involved.

However, there is no harm in "testing the water" & seeking advice from the Consultant's secretary. If the Consultant is looking to avoid repeat referrals they might be willing to help straight off, and either way you'll be able to say to the GP "I sought informal advice & this is what they said" (be that "they are willing to write a letter of support" or "they say I'd need to be referred again".

It won't harm your position to mention to the Consultant's secretary that one way of proceeding your GP might consider would be to refer you to the hospital to get them to prescribe it ...... that might increase the chance they'd help find a different solution like the CCG agreeing the GP could prescribe it.

 

One of the key people will be the pharmacy lead at the CCG, who will want to avoid "Community" pharmacy expenditure : you want to balance this with "but the CCG and Commisioning Trusts will also want to avoid "Hospital" expenditure ......"

 

I'm aware of a situation where a great deal of time / planning went into keeping a patient out of hospital with an antibiotic that then got put onto a PCT (as was, then!) 'red list'. The GP was all for prescribing it but their hands were "tied" by the PCT.

The PCT wouldn't budge.

 

In the end the antibiotic was prescribed from the hospital pharmacy, by one of the hospital doctors (the microbiology Consultant), but it took some arranging (who was responsible for the monitoring for side effects and so on), as usually this is the responsibility of the prescriber, but the GP (who had been responsible!) was still the best placed to do so. Fortunately they agreed to continue to do so.

 

The bizarre twist? This antibiotic was only available from hospital pharmacies anyway, so all that changed was it used to be dispensed from there on a prescription from the GP, but ended up being prescribed from the hospital.

Your situation is somewhat different in that your need would be ongoing, while the example I am aware of the details for was for an antibiotic needed only for a defined period.

[BazzaS]

By "GP surgery have been less than useless" ;

Have you:

A) Seen a GP (rather than the practice staff), and

B) asked them "what are you prescribing instead then?" ?

 

Is there a support group for the condition where the experiences of others might add useful info?

[BazzaS]

22 week waiting list?

In an ironic way that is useful!

 

Inform the CCG that if your GP can't prescribe it or an alternative, you need a referral.

If the GP doesn't refer you urgently, as the local referral wait exceeds 18 weeks, you want a referral elsewhere, and the CCG will have to pay for it (and your travel costs / arrange travel)

https://www.england.nhs.uk/resources/rtt/

 

Then see if they prefer to pay for a referral or agree the red listed drug.

You'll have to see if the GP proposes an alternative, or refers you urgently, first, though.

[BazzaS]

If you are away from home see if the local CCG also has that drug on a 'red list'. If not see if a local practice will see you as a "temporary resident" : you may be able to get a short supply that buys you some more time for a definitive solution.

[BazzaS]

FOI (freedom of information) request to the CCG for all meeting notes regarding that drug, the decision to red list it, and consequent instructions to surgeries.

 

If there are other suppliers who provide it cheaper : could you agree importing it with the GP +/- CCG ? (If there are others the British Thyroid Assiciation are aware of : could a group effort be made?).

Could the GP write a private script that you could then legally use to import the medicine for your personal use.

 

If all else fails : can you buy the drug from a foreign website (currently this remains legal, providing it is for personal use if the foreign site states a doctor reviews the sale, but it is a grey are!

1) the law (or its interpretation!) may change

2) if legal, it is only for personal use : don't try and use this yourself to help anyone else in the same boat (though you can tell them about it, just not arrange it for someone else)

3) being a 'grey area' there are few guarantees of the quality / provenance of the medicines!

 

Ultimately, if no solution is being provided and your health will be harmed : write to both Consultant and GP asking if meeting with them both would help as "you value everything they have both done for you, and appreciate that they are in a difficult situation not of their making, but are worried that your health will suffer as a result of these events, and need them to clarify a solution or who is responsible ..... so that if a solution isn't found you don't refer the wrong person to the GMC for allowing your health to be threatened."

 

It it a pretty end-stage / 'nuclear' option though! I've tried to phrase it as "I'm trying not to refer to the GMC", but it is still pretty clear that "someone is going to be referred"!

[BazzaS]

Write to your CCG asking under FOIA for their BRAG list and the minutes of the drugs and therapeutics group meetings.

 

I agree ; think about it posted this while I was composing my (slightly longer!) reply that included this approach.

[BazzaS]

At present : there are no restrictions on where you can import from, (only for your personal use) if bought on the web, if signed off by a doctor on that website.

It remains a 'grey area' though, as previously mentioned.

 

Additionally (just to clarify!): whilst this applies to prescription only medicines, controlled drugs aren't legally importable by this method.