An Interview with Linda Pepper

Linda Pepper is the new patient editor at BMJ SRH.

She has been a lay member of RCOG Women’s Network (WN) for 6 years, represented the WN on the Faculty of Sexual and Reproductive Health council and is a lay examiner and assessor for RCOG membership exams. She has dedicated her career to NHS patient and public involvement working groups and furthering the cause of reproductive rights.

Our social media editor, Kate Womersley, caught up with Linda to hear about her career and her new role at the journal.

 

Kate Womersley – How did you start working in sexual and reproductive health?

Linda Pepper – My mother raised me to please men. I felt that there was more to life than that. I had to be in control of my fertility, starting as a teenager. It was really important to me that if I were ever to have kids, it would be because I wanted them, not because I got unintentionally pregnant. I opened a bank account that had exactly the right amount of money in it to have a termination with BPAS. I always had that get-out. Whenever the price for a termination increased, I increased the money in that account. I obviously felt very strongly from a young age!

I didn’t start my career until I was 25 (having lived and worked in New York, Norway and Israel), first in psychiatric nursing, and then child and adolescent psychiatry. A lot of the issues I was seeing with adults seemed to have roots in childhood.

KW – You were clearly drawn to working with women and furthering their reproductive rights.

LP – Definitely, that’s a thread running through. I’m 70 now.

I qualified as a psychiatric nurse in Bristol. There was a female diagnosis at the time called ‘NHS’, which meant ‘neurotic housewife syndrome’: middle-aged women who had given up their own careers to look after husbands and children, and then their husbands were unfaithful. They were thinking ‘what’s my life about’? Doctors gave them antidepressants and sent them home.

I also worked with women who came into hospital with anorexia. My job was to perform internal examinations to get stones out of their vaginas that they had hidden there, because as soon as they hit a certain weight they were allowed out. There was no therapy or understanding at the time.

I decided to do a sociology degree in Liverpool because I wanted to consolidate all of this experience. I have an unfinished PhD on women’s work between the wars. It’s unfinished because I thought I could have two kids and commute to Bradford every day!

Then I helped set up a women’s health forum to campaign for better women’s health services in Liverpool. The 1980s was a time of gross anti-abortion sentiment in the city because it was a very Catholic community and they had an anti-abortion MP. There were hospital consultants saying that women wanting terminations should have their vaginas filled with cement. It was a very, very difficult time for women’s health.

There was no social media then, of course, but we did have really good demos. 400 women were waiting for gynae referrals, and I thought, ‘What’s 400 women?’ In a matter of days, I got 4 lines of 100 women dressed in white to take over the city centre, with me and a megaphone at the front. We had many strategies like that for getting press attention.

I then moved away from activism, put down my megaphone and worked within formal channels in the NHS. I was chair of a community health council in Liverpool, then much later I ended up in Manchester as Chief Executive of a community health council. In between I coordinated a national project with the Workers Educational Association (WEA) and published training handbooks around women’s health issues.

Somebody said to me, “You’ve had a really weird career.”
It makes perfect sense to me.

KW – What was your campaign in Liverpool hoping to offer women?

LP – To give them a voice. The Health Authority at the time was happy to shut wards and have long waiting lists. Getting an abortion was hard work. We also supported women from Northern Ireland to access terminations. They would come over on the ferry, check into a grotty B & B overnight and often feel really scared about what was about to happen. Their families at home tended not to know where they were going. Instead, we used to collect them from the ferry, invite them to stay in our homes, feed them, and take them to the clinic the next day. We tried to make it a more positive experience.

KW – You and I are speaking the day after the Irish abortion referendum. What’s been your response to the result?

LP – It’s about time! Both my daughters texted me: “Mum, this is the best news!” We were all on tenterhooks because we didn’t think it would get through, due to the heavy campaigning for ‘No’, and the lack of involvement from the Church after its sex scandals. Now the hassle we’ve got is to get the ’67 Act in Northern Ireland. It’s ridiculous that they are part of the UK yet the Act doesn’t apply. We Liverpool campaigners from the 80s despair that you have to work so hard now to stand still and not go backwards. But this referendum was exciting to watch on social media. To see passionate young women out there fighting for their rights.

KW – I agree. I was very moved by the #hometovote photographs and stories.

LP – People stopped. People moved their weddings from that day. People changed their plans so they could fly back from wherever they were in the world to vote. It was heartening.

KW – When was the last time you remember that level of engagement about social and reproductive health?

LP – For me personally, it was the national abortion campaign in which I was heavily involved. We received a lot of criticism from black women at first. They saw it as a white women’s struggle. They said black women didn’t have trouble getting terminations; in fact, they were often encouraged to have terminations. It was the medical establishment that decided who was ‘fit’ and ‘not fit’ to have children, with all the underlying prejudice.

We listened to black women’s criticisms and became The Women’s Reproductive Rights campaign rather than a national abortion campaign. But it’s a lot easier to campaign on a single issue – like right to abortion access – than something wide like reproductive rights. But we did broaden our scope to include access to fertility treatment and self-insemination as well as terminations. I gave my abortion money in that bank account I’d set up all those years ago to start the National Women’s Reproductive Rights campaign. I didn’t dare to have sexual intercourse for about a year, in case that money didn’t get back to me!

I don’t think there is a national reproductive rights campaign now. It fizzled out a bit and I haven’t seen that passion again for a couple of decades.

KW – People wouldn’t necessarily know what you mean by ‘reproductive rights’ today.

LP – It’s quite simple. For me, it’s the right to decide if, when and how to have children. But it’s a much harder thing to rally support for that than for ‘abortion’. I invited the head of a group called Catholic for Women’s Choice from the USA to debate in Liverpool with a representative from SPUC (The Society for the Protection of the Unborn Child). I chaired these debates and had to try and look neutral. But I knew I didn’t look neutral at all!

KW – How do you understand your new role as patient editor for BMJ SRH, and what do you hope to achieve?

LP – It feels like an organic, evolving role. RCOG has a very vibrant women’s network that I was on for 8 years, and I was also the network representative for FSRH. Journals can be very academic, and often the patient gets lost. I want to ask readers, ‘What would you like from a patient editor?’ In my forthcoming editorial on this issue, I want to get a dialogue going in the journal about what patients can contribute.

KW – It’s a challenge to engage patients in medical discourses anyway, but particularly in sexual and reproductive health.

LP – It’s secret, shameful and a very private matter. For example, it’s hard to get women who are going through that dreadful tense time of IVF treatment to talk. We need a focus group for patients with STIs, but it just doesn’t happen. There was the Margaret Pike Centre in London which managed it, but they were abolished.

I had breast cancer 5 years ago. There is so much openness around cancer now in a way that there didn’t used to be. It’s important to talk about sexual health in the same way. For example, I carry genital herpes virus. When I had my first child, I was put in a side-room and had to use plastic cutlery that was left outside my door along with my food. One of the sisters came in and sat on the side of the bed, and said: ‘Do you feel dirty?’ I replied, ‘I had a shower before I came in.’ ‘No,’ she said. ‘About the herpes.’ This is ridiculous, I thought. I asked for all the nurses to come to my bed and I did a teaching session.

I’ve always been very open about my sexual health, but a lot of people aren’t. There was a Channel 4 programme that my partner, my baby and I did, in which we said, ‘Look, you can have genital herpes and have babies. Wow!’ There was so much stigma at the time. It was pre-HIV. My own mother used to cut out jokes from newspapers about herpes and sellotape them to the back of envelopes when she sent me letters. The postman must have been really intrigued!

When HIV did come along, I got involved in teaching women about HIV and safer sex. There was nothing for them at the time; it was all for gay men.

KW – If BMJ SRH is going to succeed in harnessing patients’ expertise and experience, what should be our next steps?

LP – Women want to know, ‘Why should I do this, and what’s in it for me?’ The NHS is generally very bad at asking people for their views, and then using them. A patient who contributes never hears again what happened to their contribution.

When I was asked to do a trial for my breast cancer, I said ‘Who’s this for? What will happen to the results, and what will I know about it?’ The researchers were very short with me and said I didn’t need to know that. But I did. A lot of people feel used in research. Women have expressed their skepticism to me that as patients their views are there to further medical researchers’ careers.

One thing we could do is send a copy of the journal to involved patients, but that feels superficial, because there might be subsequent debates, and individual patients should know how their contribution made a difference in the long-term.

We’re now asking all contributors to BMJ SRH to state whether patients were consulted in their paper. Our patient and public involvement (PPI) statement asks whether patients were involved, and how they will be told about the results. Change is not going to happen overnight, and I don’t think that articles should be rejected if researchers can’t fulfill that. But it’s a start.

KW – Social media certainly plays a role. Patients can see their impact more easily and be sent relevant conversations about their contribution.

LP – This needs to be thought about, because generally it doesn’t happen. The Women’s Network for the RCOG – a group of 20 women including me – has said that we can’t represent all women, but we can give our perspectives as individuals. A closed Facebook page was then set up called Women’s Voices Involvement Panel, and through it lay people can contribute to the College. It’s not for medics, and women feel able to share because it’s a closed community. They comment, suggest research questions and have debates. Admins can ask questions, which get large responses. The panel now has 500 women from all four countries in the UK. 25% of those women indicate that they are interested in sexual and reproductive health. It’s an exciting time in terms of potential, but it needs resourcing.

KW – What are the particular areas where patients can best contribute to medical journals and College activities?

LP – That’s an editorial in its own right! I can see all kinds of challenges. PPI statements are very important. If you listen to people who use services, you make services better. It’s as simple as that. If you listen to what’s important to patients – not what you as doctors think is important to patients – and work backwards from that, services improve. Sometimes it’s very small things. That has been my whole remit for working in patient and public involvement in the NHS over the last 40 years.

I’m now involved in the Part 3 MRCOG exams. We fought for years to have lay people examining, as well as clinicians. It doesn’t matter how much clinical knowledge you have, if you don’t have good communication skills, you don’t have happy patients. I score the candidates differently to how the clinicians score them, because I am there as a lay person and potential patient who is particularly looking at how these doctors are communicating.

KW – Are there specific issues that you feel passionate about and would like to see represented in the journal?

LP – One thing that bothers me at the moment is how funding works, or doesn’t work. Carving up services is awful. The women who are most vulnerable are going to slip through the net. Abortion and contraception are now funded differently. There is a postcode lottery for IVF. Integrated services that were painstakingly built up over decades by people who care about them, have disintegrated.

This part of your body is funded by here, and this bit funded by somewhere else. Where’s the whole body? Where’s holistic medicine? Women don’t care about who is funding what, they just want a decent service that works.

KW – It’s clearly worse for the user, but for a clinician who believes in holistic ways of working, it’s also dispiriting. What are your thoughts about the future of SRH in the NHS?

LP – A big issue is medical terminations. You still need two doctors to agree, and then women must go to the clinic in person. Ireland now has – in some ways – a more liberal abortion law than we do, because women don’t need to state a medical or psychological a reason for wanting an abortion up to 12 weeks. That’s how it should be. ‘I don’t want to be pregnant’, is enough of a reason!

The whole future of the NHS is scary. Let’s abolish CCGs and go back to Primary Care Trusts. I haven’t met anyone who thinks CCGs are working. We need to resituate the patient voice at the heart of how we work. The narrative goes that the patient is at the center of the NHS, but that’s just not true anymore.

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