Does anyone have a problem with their Primary Care Trust refusing to prescribe medication ordered by the consultant? What is the solution?

[Paul_Howard Partner LUPUS UK]

Hi Bitternwatcher,

What treatment is it that they are refusing to prescribe? If you let me know then I can make some more enquiries about what you should do.

[Hidden in reply to Paul_Howard]

Thanks Paul. Azathioprine was suppressing my bone marrow so I was transferred to 6-mercaptopurine, which is working well. My GP refuses to prescribe this as it is on his list of banned medications (I presume the list comes from the PCT). The pharmacist says this is to do with cost. The consultant says this is ridiculous, and doesn't understand it. So I have to keep going to the clinic for repeat prescriptions, wasting clinic time and mine as I have to take time off work every time I go there. I pay for my prescriptions, and anyway the cost comes out of the NHS whoever prescribes it. The GP's surgery monitor the drug through regular blood tests and the consultant has left it up to me to adjust or stop the medication depending on results, so it is nothing to do with the GP not being able to monitor it. Any suggestions on how to cut through this red tape and save us all annoyance would be most welcome!

[Paul_Howard Partner LUPUS UK in reply to Hidden]

I'm going to make some enquiries for you and I'll get back to you.

[Purpletop]

yes, this is not an unusual situation. I have the same issue with mycophenolate. This is because the GPs have a specific contract with the NHS in respect of the medication that can be prescribed by them. Anything outside of that list of medication will mean you'll have to get it privately or go under an NHS hospital consultant who is happy to prescribe it, as hospitals have larger budgets for medications in relation to illnesses those hospitals treat (but they are unlikely to have budgets for illnesses they don't treat, if you see what I mean(.

Each GP contracted this way has an advisor for his/her medication list. If the medication is outside the approved list, there may be derogations to the rule if the cost is acceptable but if the cost is too high, they are unlikely to approve.

There is no obligation on GP to prescribe medication - this may be new to you but I've had it confirmed several times by different consultants and by different GPs. So we don't have an automatic right to prescription from the GP, apparently.

[Hidden in reply to Purpletop]

Thank you very much for this P. I realise I won't get anywhere, but it's always worth publicizing the fact that red tape in the NHS is not only inconvenient for patients but also financially counterproductive for the NHS itself. If at least the GPs were sympathetic and would admit it's all about budgets it would help, rather than spinning tales about not being able to monitor the drug when no-one is asking them to!

[Paul_Howard Partner LUPUS UK]

Hi Bitternwatcher,

I've received some information about your situation;

There is a system of what is called "shared care prescribing and monitoring" that exists between hospitals and GPs. For GPs to prescribe a drug like this there would need to be a local "shared care" arrangement which is a formal structure for each individual drug. Most hospitals have these in place for commonly prescribed drugs (e,g, Azathioprine) but often not for rarely prescribed drugs (like this). This means that locally the drug will have been designated by the local health care system as a "hospital prescription only" drug - and hence your GP is right that he should not prescribe this if there is no such agreement - and this is as much about safety and governance rather than cost.

A possible solution is to see if the hospital can do a longer script (it depends on local arrangement, but some areas can do up to 3 months, with monitoring done in the community, coordinated by a lupus specialist nurse if needed). It is something that you'll need to discuss with your nurse specialist and/or consultant.

[Hidden in reply to Paul_Howard]

Thanks very much Paul, that's really useful. As I monitor the drug myself, following the consultant's instructions, and the blood tests are done at my GPs surgery, it isn't actually anything to do with monitoring but about cost, as my pharmacist told me. As my consultant said, this is ridiculous as it's all one budget after all, ie that of the NHS. It's bad enough having a chronic condition without having to jump through extra hoops, but it seems there is no way round it. Many thanks for looking into it.

[baba in reply to Hidden]

Hi! Have you contacted the primary care trust and explained your problem? Don't know if it will help. Wish you well.

[Hidden in reply to baba]

Yes, perhaps I should do that just so I can report back to my consultant, who is incredulous, although I know I shall get nowhere. Causing patients extra stress doesn't seem to be something NHS budget people factor in as having long term negative cost implications, unfortunately.