When fear becomes the barrier to care

A pilot clinic run by Barts Health NHS Trust in London offers cervical screening and psychological support to women who have experienced rape or sexual assault but are reluctant to go to a doctor. Its founder Pavan Amara, herself a rape survivor, is about to start nurse training this autumn.

When Pavan Amara was raped as a teenager, the effect was potentially life-threatening.

Not only was she physically and emotionally traumatised, but the simple act of going to the doctor became an impossibility for her, especially if it was for something as intimate as a cervical smear.

‘I had tried to get back to normal, and I had a lot of good counselling,’ she says. ‘But there were lasting consequences and one of them was that I felt like I could no longer go to the doctor. Not only did it remind me of forensic testing [conducted after the attack], but there was a difficult power dynamic. You don’t know what they’re going to ask you or what they’re going to do.’

This fear – and it’s not uncommon among women who have been sexually assaulted – has significant consequences. Around 3,000 women are diagnosed with cervical cancer each year, and almost 1,000 die of it. Regular screening via the NHS cervical screening programme can save lives by detecting treatable early changes, but one in five women do not take up the invitation to attend.

Among the non-attenders are women who have experienced sexual violence.

Now aged 27, and embarking on nurse training this autumn, Ms Amara has been instrumental in setting up what is believed to be the UK’s first dedicated cervical screening clinic for women who have been raped or sexually assaulted. Barts Health NHS Trust in London, in partnership with the My Body Back Project (MBBP), is operating the clinic as a pilot that is expected to run until November.

One consequence was that i felt i could no longer go to the doctor

The fortnightly clinic, held at St Bartholomew’s Hospital in London, offers a combination of an experienced female smear taker, a consultant clinical psychologist, and an advocate from My Body Back. The project was set up by Ms Amara last year to help women who had been victims of sexual violence.

She came up with the initiative after realising that if she did not know where to find help, it was likely other survivors of rape and sexual violence were facing similar problems. So she carried out her own research, asking 30 survivors about their experiences and feelings.

‘Out of the 30, around half weren’t going for cervical screening,’ she explains. ‘More than half said they hadn’t been for sexually transmitted infections (STIs) testing after the attack because they felt it would be too invasive. Four said they wouldn’t go to a GP, yet three of these had chronic conditions, such as asthma. And these women wanted to go for cervical screening. One had a family history of ovarian cancer and wanted to go, but couldn’t face gynaecological testing.’

Women gave similar reasons for wishing to avoid healthcare appointments. ‘One said it felt like being raped again in a medical context,’ she says. ‘Others said they felt forced to have a smear because they got repeated letters, and every time they went to the doctor they were asked why they hadn’t had one; another said she had tried but had flashbacks of the assault. One said she had gone for a smear but the nurse had echoed the words of the rapist, telling her to “relax and it would be over quicker”. The nurse didn’t know; it wasn’t her fault, but it was terrible for that woman.’

Patients make appointments at the screening clinic by contacting MBBP, and are given the opportunity to explain their needs via email. When they attend the clinic, they see Ms Amara for a 30- to 45-minute consultation, when they can talk about triggers to avoid, and preferences for how the smear is taken. ‘For example, one woman finds footsteps very difficult, so she says that if someone is walking behind her, they should tell her,’ she says. ‘Another couldn’t bear to have someone touch the inside of her knee, because that was where she had been held in the attack.’

Pavan Amara set up the clinic after researching the experience of other survivors of sexual violence

The smears are taken by Louise Cadman, research nurse consultant from the Wolfson Institute of Preventive Medicine Centre for Cancer Prevention, which is based at Queen Mary University of London, or Jill Zelin, a consultant genitourinary physician with Barts Health. Amanda O’Donovan, consultant clinical psychologist, is the other member of the team, helping women use techniques such as mindfulness to support them through the process (see panel).

Performing the examination Picture credit: Science Photo Library

Advice for conducting intimate examinations or cervical smear clinics when working with women who have experienced sexual violence includes:

Take time. Book a double or triple appointment if required.

Ask patients if they are aware of any ‘triggers’, phrases or postures that are uncomfortable or may cause them distress.

Make it clear that patients can say ‘stop’ at any point, and keep checking how they are feeling throughout the visit.

Use a graded approach to having the complete cervical smear done; it might take a couple of appointments to work towards having the cervical swab. The goal of the appointment might be, rather than completing the cytology, to have a visit where the patient feels in control and listened to – and will come back.

Frame the appointment in a way that makes patients feel as though you are working with them, rather than doing something ‘to’ them.

Use techniques such as mindfulness to encourage patients to focus on sensations in the present moment. Ask the woman to describe what is happening as the examination proceeds. This active involvement of the patient helps minimise distress and encourages a sense of engagement and control.

Ask patients to rate their anxiety and discomfort – do not proceed if they rate it above seven or eight out of ten. Use this approach as a way of checking on the patient.

Encourage patients to keep their eyes open and engage with you as best they can. When keeping their eyes closed, patients can dissociate or have flashbacks if triggers are present.

Be aware of your own feelings and responses. If you are frustrated or pressured for time to complete the examination, then pause and take time to stand alongside the patient.

Patients with a history of no penetrative sex or no tampon use due to moderate to severe vaginismus might need additional support and guidance or psychosocial intervention, or a review of the need for cervical cytology.

Bring a sense of warmth, support and engagement to the appointment. It can be a great opportunity to provide women with education about their genital anatomy and function.

Spectrum of responses

An expert in sexual wellbeing, Ms O’Donovan says women who have been sexually abused respond in different ways. Some will avoid having a smear altogether, while others will have a smear but find it distressing, perhaps experiencing flashbacks of the attack. Some women are so tense that the smear is too painful and they do not return for another.

Ms O’Donovan says it is important for nurse and patient to reframe the consultation so that the ‘goal’ is not getting a completed smear at the first appointment. ‘It’s important not to see an incomplete smear as a failure,’ she says.

Partly it is about helping women to regain confidence in their bodies. She points to various tools employed, including a ‘vulva puppet’, which is used to explain what is going on anatomically.

The environment is important too. Women can specify whether they want background music or aromatherapy, and tea and cake will also be available.

Ms Cadman, who is also a nurse colposcopist, and who has conducted research on the sexual health needs of people who have experienced sexual abuse as children, says the new clinic is much needed. ‘It is set out in the way that the women wanted,’ she explains. ‘Women wanted to go to a clinic where people knew who they were and what their experience had been. And because people knew about it, they didn’t have to discuss it.’

Also, nurses would welcome such a clinic, she adds, because the women who are coming to be seen have deliberately made an appointment at a place where their needs and experiences are known. ‘We have all treated women where we’ve had high suspicion [that the woman has been subjected to sexual abuse], for example, because of their response, or because of physical things like scarring,’ she says. ‘But at this clinic we have the luxury of knowing what’s going on, which means the woman doesn’t have to disclose over and over again.’

Dr Zelin agrees, explaining that it is important for all smear-takers to be mindful that some people have quite specific needs. ‘Some women think no one else feels the same way they do; they feel isolated. But it’s incredibly important for all women to feel they can attend for cervical screening. For some, it’s a life-saver’.

Find out more about the project at www.mybodybackproject.com

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