2012 BSR and BHPR guidline for the treatment of psoriatic arthritis with biologics
Thanks, as all you other gals have your pics up I thought I should join in, although I hate seeing photos of myself this is one of the better ones of recent years .... and having met me you can vouch that it is me!!!!!!!
Ok, to answer your question. My understanding (based on conversations with PAPAA and my own consultant) is that guidelines like this, produced by the country's leading experts in a particular disease or field of medicine, form a good part of the process that NICE go through in order to issue their treatment guidelines.
The main obstacle we face accessing biologics for PsA at the moment is that NICE TA199/220 discontinue treatment after 12 weeks if the patient doesn't respond to their first (and only) anti-TNF. Whilst you can argue the semantics of the NICE guidance wording (and I have tried) the rheumys fall back on the commissioning algorithm (which I attach) telling them how to apply the NICE guidance.
Currently NICE TA199/220 guidance that rules our treatment is out of date. TA199, for example, was due for review by NICE twelve months ago. Again, I understand, the delay might be because they were waiting for the BSR and BHPR to publish their guidelines. The main change is that the BSR and BHPR do provide for a patient to try an alternative anti-TNF if there is failure of a treatment and this is very much what needs to be included in the next NICE guidelines.
My own experience was to fail to respond to my first anti-TNF (Humira/adalimumab) and be denied an alternative. In this situation the BSR and BHPR guidelines were worth their weight in gold as their recommendations formed a significant part of the application my consultant made to the local Care Commissiong Group (CCG) for special funding for me to have a trial on a second anti-TNF (Simponi/golimumab). It was successful, I've been on it 15 weeks this week and I've had some positive results.
So I have to say yes, I do think they have influence. They are the PsA experts that NICE listen to and also at a local level they carry weight with the CCG's.
265-NICEPsA.pdf (487 KB)Yes, I absolutely agree, some of the information available on the internet has to be looked at very closely and validated through other sources before it can be relied upon. In the case of these guidelines it was PAPAA who sent them to me after I contacted them for help and advice when access to a second biologic was denied.
I recently heard an old track on the radio from the late 1990's by Baz Lurhmann called Sunscreen. It was from an article written in 1997 by Mary Schmich for the Chicago Tribune titled Advice, like youth, probably just wasted on the young it says:
"Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than its worth."
Always worth remembering that alot of the stuff on the internet is or should be in the disposal :-)