By Jane Shepherd
At the end of my road, I usually turn right towards the beach. I naturally gravitate towards the sea and away from the city. But before lockdown and the government sanctioned daily exercise, I rarely walked to the sea (I rarely did a daily walk to be honest). Instead, I used to turn left to the shops, the post office, the hospital, the faintly beating heart of our neighbourhood.
It’s only a 13 minute walk to the hospital – eight minutes by bike. I know because every four months I visit the HIV clinic for routine bloods and a check-up. And since January, I have been going to the same clinic every week as a volunteer peer mentor. It’s a familiar place, home from home. A place I feel welcome and safe. I would be devastated if this was to ever change. Hang on a minute … as I write this, I realise it has. Hospital departments have had to reconfigure to accommodate COVID-19 care, both to increase capacity and avoid contagion. In my clinic, the sexual health drop-in has closed, face-to-face HIV appointments moved to phone calls and peer support ceased – I was sent home 10 weeks ago, a big question mark hanging over the clinic.
The rest of my life has remained much the same. My front room has the same furniture, the TV runs the same programmes (just about), I eat the same foods every night. It makes it hard to compute that the world outside is neither the same nor frozen in time. Forewarnings that the new normal may be a cycle of lockdowns, testing, tracing and isolation leaves me rotating between denial, grief and acceptance. I had got used to telling myself, just take it one week at a time. Like learning to float – once you relax you can stare into the blue sky and empty your mind. But the moment you realise there is nothing but water holding you up, you start scrabbling about to feel the ground beneath your feet.
For the first time in ten weeks, I walk the other way. Through dog shit park, now reclaimed by families having little pandemic picnics. People are out, waiting for buses, queuing outside the Co-op in a sloppy no-idea-how-far-2-meters-is line. But the hospital is still a place to avoid – a petri dish, as journalists like to headline. If it could, it would glow red to warn us. The hospital spills out on the street, tangled up with the bus stop and a car park. It’s very quiet, eerily so. I find it hard to believe I can’t actually go in there without a prior appointment.
For weeks we have only seen images of an intensely de-personalised and medicalised world where patients are hooked up to oxygen, monitors, tubes; staff only recognisable by names scrawled on plastic aprons. No-one wants to visit a hospital anymore, sick or well. The staff in our HIV clinic were re-deployed to the main hospital. The last time I spoke to my clinician was a routine appointment by phone. She said they were waiting for the peak, expecting to be sent to COVID-19 wards. I worry about her. She is a champion of peer support in the clinic, she’s been my clinician for 15 years, she’s my friend. A few weeks back, I emailed my supervisor a list of support organisations and resources that might be useful for clinicians and patients. I heard nothing. It was a silence that meant business is not as usual. I worry about her too.
But what really makes my heart sink is the thought of all the women who had come to me for peer support. It was a new service and patients and staff were really enthusiastic. Just before the clinic closed, a woman had popped in to see me, her eyes shining, her voice full of joy and relief. “I can’t stop today, but will be back in a few months as I am off to South Africa to visit my family. I can’t tell you how happy I am to know that there’s someone I can talk to. I have waited so long for this. It is unbelievable,” she said. Where is she now? Did she have enough meds with her? Will we ever get to meet each other? And the young woman who studies overseas and is so scared of telling anyone she has HIV that she flies back every six months for her appointment. Will she get back for her prescription? If not, who will she turn to for support? The woman newly diagnosed and worried about starting treatment, her ex-partner threatening her – I had reassured her that I was there every Monday if she needed support. Up and down the country every peer mentor must be worrying about the people they can no longer support.
The service had only been running for six months but in that short space of time, it had proved there was a real need. Every Monday morning I saw three or four patients, no appointment needed, they could just pop in after seeing their clinician. The clinicians had agreed to offer peer support to every patient, rather than self-selecting the ones that they thought might need it. This had been the previous model and for months not a single person had taken up the offer. I had sat at home waiting for a call, wondering why no-one wanted to see me – it went against the national data on unmet need. A clinician’s assessment of who needs support tends to focus on clinical outcomes and treatment adherence, overlooking stable patients. But taking your meds does not necessarily mean good mental health or quality of life. Once all patients were given access to support, the hidden level of need among people living with HIV in our clinic was writ large.
Every week, I felt hugely privileged to listen to people’s stories – because that is what most patients did, they sat down and with hardly any prompting told me their ‘HIV story’. It just flowed out. For most, this was the first time they had told another person they had HIV, other than a partner or their doctor. In some cases that had meant being silent for over 10 years. They wanted, first and foremost, for someone to bear witness to their pain, struggle and achievements. Most people still had huge issues around telling another person – HIV-related stigma felt like an insurmountable barrier preventing women from starting relationships, having sex and having close friendships. It bound them to relationships that were toxic, it fed into harmful behaviour. Collectively, it feels as if the community of women living with HIV harbours a well of trauma that has yet to be acknowledged and brought into the light. Even when HIV-related stigma falls away (it will, it has to) we will still need to heal from the past injustice of society’s stigmatising attitudes – an injustice that for many women intersects with multiple oppressions like racism, ablesim, classism.
Down here on the South coast, there has only ever been a county-wide HIV support service. They never offer peer-based support and they folded in 2017. I consider myself lucky that on my diagnosis in 1990, I was offered peer support at Positively Women in London. Just meeting another woman who was living with HIV and getting on with her life was so powerful. It gave me a glimpse of possibility, a sense of normality and a place within myself that I could always return to. I was lucky, because peer support has never been a given. Although there has been a paradigm shift on counselling in relation to HIV testing, peer support services have always been poorly funded and rarely provided. We have not been trusted with the funds to mutually support each other. It’s only by professionalising peer support has it been mainstreamed into clinical services. And this in itself has taken decades of mobilizing and campaigning often led by women living with HIV.
I have no idea when peer support will resume and how it will look. I’m filling the void with day-dreaming and walking. In this period of stasis, there is a call for new ways of doing things post-pandemic to tackle the big structural and social determinants of health. I don’t really know how to get to where we want to be but at least I can imagine it into existence.
I turn back towards the park and the shops and fantasise about my ideal clinic in my ideal community hospital – a safe space that is co-created with communities and draws on innovations in human-centered design and technology. A waiting room with sofas (upholstered with self-cleaning fibres), a children’s space and a hospital creche downstairs. A quality of life space (Quality Street), where you can read, learn, relax, input data into a PROM (patient-related outcome measure). A one-stop shop where women can access a comprehensive package of sexual and reproductive health services from STI and HIV testing and treatment to abortion and family planning – free from discrimination and judgement. Downstairs would be cookery classes and a gentle keep-fit hall where you could just drop-in and join any class. Outside a community garden growing food for the hospital café. We’d have a dedicated wing for peer support with rooms for counselling, group meet-ups and an empowerment academy. In the virtual reality suite we can join real-time health conferences, Council and Trust meetings and get our ideas and experiences heard. If you were having a really bad day you could ask to stroke the therapy cat (a robotic cat that purrs and responds to your touch). The (imagined) woman’s group would be training to be peer mentors, mentor mothers, holding anti-stigma trainings and learning new skills. We would be sitting on council task forces, health boards to ensure we remain protected from stigma and discrimination and going out in the community to educate. We wouldn’t need benefits advice because there would be universal basic income, and one that is extended to migrants and asylum seekers. There would be a three-day working week so we would have time to commit to these community health projects …
With the current government making decisions about the NHS (our ownership, our data, our healthcare) without scrutiny or taxpayers’ participation, is it just an indulgence to have a vision when in fact we need to be fighting to even have a national health service? After a decade of Tory austerity measures, is it far-fetched to imagine anything that might cost money, that might be done ourselves, that is joined up in a holistic way? Definitely not. It is in no way outrageous to imagine a world where money is put back into the heart of communities so that we can all live healthy and fulfilling lives. It is not a dream, you bastards, I mutter between gritted teeth as I turn the key to my front door, slip my shoes off and stomp through the house to wash my hands.