What’s your role at the Eve Appeal and what made you decide to work there?
I run Ask Eve – a free, confidential service where women can call or email in with any question they have on gynaecology. It’s a completely taboo- and embarrassment-free zone. The whole mantra of the Eve Appeal is to raise awareness of #knowyournormal; if you have an abnormal and you’re worried what it means, 99 out of 100 it’s not going to be a cancer symptom but if you’re not sure, you’re too embarrassed, your knowledge is lacking, you don’t know what the name of the lips are…that’s what we’re here for.
You also work for the NHS – what do you do there?
I’ve got an amazing job in the NHS – I’m a cancer nurse specialist for gynaecology. I look after women who are on the journey they don’t want to be on; they come in with symptoms and I support them through the various tests, scans and biopsies to determine if they have gynaecological cancer. I’m there to support them and their families and to provide information. I also make sure that they’re signposted to other healthcare workers who can look after them – whether that’s doctors, nurses or other HCPs.
I’ve been doing that for about 25 years and I did my PhD in cervix and womb cancer and the side effects of radiotherapy. I also sit on the British Gynaecological Cancer Society council…so I’ve become a bit of a gynae cancer nerd and the genetics of cancer.
My jobs are the perfect mix: what the charity can give to the NHS, the NHS gives back in training and knowledge. I’m very lucky!
How did you get into gynaecology?
The Eve Appeal is an amazing charity and they did a scoping exercise about five years ago where they went out to men and women around the country to asked what was missing from gynaecological services. What could they do with in terms of knowledge and information that they weren’t getting anywhere else? People responded by asking for a support line – somebody who could signpost them to the various services. I then helped scope the job description for the job that I’m doing. At the time, I didn’t know that that was going to be the case. The charity then got the money together and advertised for this role…and I said I could do it!
What’s the most common question you receive on the information line?
It goes in fits and starts but our busiest times tend to be when something’s been in the news. When Angelina Jolie told the world very bravely that she’d had risk-reducing surgery to remove her ovaries because she knew she carried the BRCA mutation, there was a huge influx of people phoning up asking things like: ‘Could I have the genetic mutation?’, ‘Could I have the ovary cancer gene’, ‘Could I have the breast cancer gene? Could you tell me more about that?’. And before that, there was the Jade Goody effect.
Recently, questions have been on HPV and the new way that we do cervical screening (smear tests). We now focus on HPV triage and we’re looking at HPV when we’re doing screenings, so there are a lot of questions like: ‘I’m getting a letter back saying that I have HPV. Is HPV HIV?’, ‘What is HPV?’, ‘Does that mean that my boyfriend’s slept around?’
What kinds of other things do people ring you about at the Eve Appeal?
The helpline’s job is often interpreting medical jargon; it doesn’t matter how good we think we are within the medical fraternity when it comes to writing information for booklets (which is all checked by umpteen different sources), we still get it wrong because we get patients phoning in asking: ‘What does that mean?’.
In the NHS, there are cancer nurse specialists for each tumour site so Lorna (my colleague) and I know everything about gynae but for anything else, we know where to signpost patients. If someone came in with symptoms and it turned out that they were actually suffering from colorectal cancer, we would then make sure that the colorectal cancer nurse picked her up because she’d know the minutiae of that cancer journey. We never GP-bash, we never say your nurse is no good. You’re only ever getting a frightened person on the phone so what you hear is out of context.
It’s a lot about signposting people if they’re already on treatment. If they’re having symptoms, it could be like: ‘Oh, I’m having a bit of bleeding, it’s a bit embarrassing saying that so I’m not going to go to the doctor – what do you think?’ Go to the doctor. Or: ‘I’ve got my smear coming up but I’m on my period so I won’t go’. No, go. ‘I’ve got an itchy vulva…it’s probably thrush.’ Well, no it might not be – it’s worth having it checked out.
Sometimes it’s just about giving people permission to not feel like they’re bothering the doctor. With bleeding issues, a lot of us women bleed for much of our lives and we normalise changes in our bleeding and don’t report it.
You must have to deal with very distressed callers from time-to-time – how do you deal with that emotional pressure and how do you reassure them?
As a nurse specialist of some 25 years and intensive care sister for 13 years, I’ve got that experience in managing communications. As cancer nurse specialists, we also do an advanced communications course which gives us the support and skills in listening and coping – I’m lucky to have the benefit of that. Then of course, there’s the anonymous debriefing with colleagues and then we have clinical supervision – which is better than a gin and tonic because I don’t wake up with a headache after I’ve offloaded to my supervisor!
When it comes to patients, knowledge is power. Especially when someone is first diagnosed, they hear the word ‘cancer’ and that’s about it. The clinician and other HCPs will have given them lots of information but it goes straight in and out – all they hear is white noise. It’s about empowering people to go over that information and reassure them that they can contact their care team.
We also work with charities. I don’t ever gate-keep – if I think that the support other charities can provide is better than what we can provide, I signpost them on. Macmillian are amazing. They do a lot of really good information. There’s written information, podcasts, videos…there’s a lot of information out there which means that people don’t have to feel alone.
What would your top 4 pieces of advice be for women who have been newly diagnosed?
- You’re not alone. You’re not alone when you’re looking for information or someone to support you.
- Always take a plus one. That could be a friend, your lover, the person who wants to come with you. Never go to consultations alone.
- Always write down questions and always feel that you can ask the same question again and again and again. We never mind that in consultations and no question is too embarrassing or too difficult to ask.
- Never leave without knowing the ‘what next’. If you know that, it just gives you more control. Always when you leave a consult, get your plus one or yourself to find out when is your next appointment, what is the next step, when are you going to receive those results?
What would your main piece of advice be in general for keeping on top of gynae health?
Know your normal. Know your normal bowel habits. Know your menstrual cycle. Know what your vulva looks like. How many of us are familiar with the shape of our own vulvas? Our vulva is as unique as your nose.
If you only look when you think something’s wrong, how can you know what you’re looking for? I’m not saying have a look with a mirror every day but once every few months would be ideal.
If you have a gynae question or need support with a recent diagnosis, call the Ask Eve Information Service on 0808 802 0019 or email email@example.com