Dr Ivan Benett describes what it is like to sit on a guideline development group at NICE.
‘Can I have an appointment with Doc Holiday?’ I overheard Mrs Clarke’s heavy Jamaican accent trying to make an appointment to see me. ‘Ha ha’ I shouted down the stairs, acknowledging one of my favourite patients. ‘Oh you’re here this week’ she joked sarcastically, ‘makes a change’.
I’ve grown up with Mrs Clarke who has diabetes and hypertension. We see each other from time to time in the hope of stopping her having a stroke, supporting each other through life events, and complaining about ungrateful children. We have a laugh.
‘Yes, but I‘m away next Thursday’ I replied. I had been to a kidney conference and next week I’m going to the Manchester offices of NICE for a Topic Expert Group (TEG) meeting for the NICE Quality Standard for chronic kidney disease.
This group will meet for three days in total spread out over a few months. The nice people at NICE had asked me if I would join this group as I’d been part of the guideline development group for the NICE clinical guideline on CKD, which was published over a year ago. The TEG’s job is to set standards for the care of CKD in the NHS. NICE pay for locum and travel expenses which means I can attend.
I need to see Mrs Clarke, as it happens, since her blood pressure remains stubbornly high and her kidneys are leaking protein. I am now much more confident about managing this problem since sitting on the NICE guideline group. Being on that group is why I’ve ended up on the TEG.
To join the guideline group I had responded to an invitation by one of the Royal Colleges. They were looking for someone ‘without an interest in kidney disease’. I had said that indeed I had NO interest in kidney disease. Apparently that made me perfect for the job. The Guideline group met for about a year or so, each month. Again, travel to London and locum expenses was paid.
At first it was all a bit intimidating. The guideline group was chaired by David, a chest physician with expert chairing skills. There were half a dozen experts. The rest of us, half a dozen or so, are other clinicians (doctors and nurses) and patient representatives. Backing us up are the diligent and bright young things of NICE who respond patiently to our questions, collect data and collate the research.
Each meeting is focused on answering one to three questions, for example ‘do ACE inhibitors prevent the decline in renal function and improve mortality?’ The answer, after much sifting of the evidence and debate about the validity and reliability of it, is probably yes, a bit, but only if you have ‘significant’ proteinuria. You then need to decide ‘what is significant proteinuria?’ and so on.
I did the reading on the train down. Spending a whole day talking about one such small point quickly makes you an expert.. So much so that afterwards you get acknowledged at conferences as such, and asked to speak and write serious and academic papers on related issues. You are, if briefly, one of the few most knowledgeable people on the subject in the world. You change from having ‘no interest’ to being very interested.
Mrs Clarke, of course, wasn’t the slightest bit interested in my academic pursuit. She was more interested in how my family is and where I went on holiday, (it wasn’t a holiday!) and relaying news about a lady we both know from church. That is until I had to bring her round to the issue of her blood pressure and kidneys. She really doesn’t like taking tablets, and probably misses quite a lot of them despite her assurances to the contrary. She would, still less, like to be sent to the hospital to see a specialist. So I will hold her hand through this new development, and we will muddle on together with more confidence than I might have had if I hadn’t been on the NICE group.
I think this alone has made the time out of the practice worthwhile. Sure I can help others in the practice and our primary care trust more aware of CKD, develop hypertension and CKD pathways (the same I believe), and develop audits of CKD management, but Mrs Clarke isn’t bothered about that. She has no interest in kidney disease, but I do now. So, with any luck, we’ll have more laughs together and we’ll grow old together.
Dr Ivan Benett is a GP in Manchester
If you are interested in working with NICE on developing a quality standard, please email firstname.lastname@example.org.