Transcript of VPS Podcast 6 - Vulval conditions and the new NHS: a presentation given by David Nunns

The VPS have got a questionnaire that you can download from the internet. You can print it off, and you can hand that to your doctor. It’s fine. It’s a bit long - some doctors might be put off by it - it’s comprehensive, but you might just want to put at least one side of paper together with the drugs you’ve taken. Make notes – I’ve had relatives of patients record me in the consultation because they’ve wanted to pick up every word I’ve said and make notes afterwards, which is fine by me, but some health professionals would find that difficult. But just scribbling notes down is absolutely fine, I think – make your notes as you need to. And then, obviously, ask about things you don’t understand. I think the biggest failing that we have is to talk about pain modifying drugs without clear explanation. I think I’ve said at previous talks about the central nervous system, the role of the pain centre in the brain being overly sensitised in chronic pain, and how these drugs, the nortriptyline, the gabapentin reduce that sensitivity in the pain centre. Very often we just hand the drug out without giving an explanation. So, if you don’t understand it, ask. Side-effects – yes. Are there any alternatives to the drug you’ve been offered? That’s a valid question. I do mainly oncology in Nottingham, and when we’ve got somebody with cancer, we spend an incredible amount of time talking about the alternatives. Your options are surgery, radiotherapy, chemotherapy, we talk about the pros and cons of each. We can do all that within half an hour for a new patient. Why should vulval problems be any different? We should be talking about the alternatives, we should talk about the options. Amitriptyline is the classical drug, where a lot of women won’t take it because the side-effects outweigh potential benefits. The tiredness, the drowsiness, the initial feeling of feeling a bit hung over, outweigh the benefit of pain relief. That’s for many women. The reality is many women on amitriptyline function quite well and actually side-effects usually subside after a few weeks. So, there’s that encouragement that we need to give patients. If you’re just given a script, you’ve got an information gap on whether it’s going to work or not. You have to say to yourself: what do I want from this consultation? I’ll come on to that in a sec. You can be very specific about what you want from your doctor, which will help, particularly in general practice, where the slots are very tight.

If you turn up to your GP in the surgery, you’re more likely to be seen than if you ‘phone, because when you ring a GP surgery you get those automatic answer machines, call queuing, and you eventually get through. It’s generally better if you turn up at the surgery – you’re more likely to be seen. I gather from those automatic, what do you call them, when you ring up and you’re put in a call queue - that they can only take so many calls, and obviously, people do ring up for appointments, and it’s sometimes difficult to get through. Turning up is better. Mondays are always busy for GPs. They’re days to avoid.

When you’re working with your GP, I think it’s not unreasonable to take some research. So many women have said to me: ‘I had to suggest vulvodynia to my doctor’. I think it’s not unreasonable if you’ve got a short printout from the VPS website or if it’s lichen sclerosus, something you’ve read about, to take that to the GP. Not a whole thesis, but just a front sheet of paper. GPs are busy people – seven minutes per patient. I’ve got friends who are GPs. They are incredibly stretched and I think that they work very much to pathways and guidelines, and they really want to provide equitable care. Some GPs are going to know a lot about vulval disease because that’s their area of interest, but many GPs are going to have a very minimal understanding, and I think if you suspect you have a problem - it may be lichen sclerosus, it may be pain syndrome - it’s not unreasonable to suggest that to the doctor. Easier said than done!

If you’ve got lots of problems to raise, then that generally is a problem. Generally, if there are a few things you want to discuss, in an ideal world, you’d make a double appointment. I’m not exactly sure how easy it is with GPs in general practice, but a double appointment might be better than a single. Another thing is if there’s going to be a major change in your treatment plan, a GP might be reluctant to instigate that, because he or she might say: ‘Well, you’re under the hospital care, and I can’t change what Mr Nunns has said because this is a big shift from what he’s just said. But I can do the minor things. I can adjust a drug dosage, for example, or I can switch from one drug to another, because it’s a similar drug, it’s got fewer side-effects.’ You might find that the major changes in your management plan are something you have to take up with the hospital rather than with your GP. Generally the GPs will work with you if it’s in a letter. If it’s in a letter from the hospital that says: ‘If drug X doesn’t work, try drug Y or drug Z’, you have that green light for the GP to change things, and that’s very important.