‘Don’t bite the hand that, TREATS you’!

17 May 2022 at 56 Dean Street

56 Dean Street (56DS) was amazing when I was diagnosed HIV positive and then throughout the covid-19 pandemic/lockdowns. I continued to receive face-to-face treatment during the covid-19 restrictions. And I heard firsthand speaking with other PLWHIV [People Living With HIV] that many were not being offered face-to-face appointments with their clinics respectively. Some shared they found this beneficial, and others would have preferred a face-to-face appointment.

As life got back to normal post-pandemic, I started to see more service users in 56DS. At times, when I’d arrive the receptionist would be curt when I’d merely give my name and appointment time. I learned quickly that even ‘basic’ service delivery by way of a smile, a hello, or a goodbye were not to be expected nor reciprocated here. As I’d sit waiting for anything up to 30 minutes past my appointment time, excluding the customary 10 minutes before the ‘actual’ appointment time. I’d witness a varying mix of the acronym community (LGBT) be absolutely vile to receptionists and 56DS staff.

It seemed a mix of deluded self-entitlement which I can only assume falls within the mental health bracket. And the side effects of substance abuse of one type or another. They’d stand with a handbag hanging off their arm snapping their fingers before swishing their hand around like they had an invisible lasoo. Giving it “huh! Honey, I don’t care if I am late, check me in and I’ll be sitting over there”. And it wasn’t even ‘sassy’, shade nor funny and if that’s how it was intended then I guess it would be a case of ‘wrong place, wrong time’.

Others were clearly ‘high’ given their unkempt appearance, a state of half-dress and bizarre behaviour followed by verbal abuse that was often aggressive if not incoherent. The receptionist merely pleads for them to take a seat, clearly leaving them for the doctor/nurse to deal with. I would sit and think ‘why is there no security’? Of course, you sit there trying not to catch their eye in case they either start talking to you or kick-off. I’d sit there thinking ‘please call me next, get me outta here’. And these are only single visits made by me, twice a year for a period of 30 minutes each time. Imagine having to deal with this the remainder of the day and the remaining days of operation across 365 days of the year. That’s a lot of arse holes to deal with!

Of course, the reception staff shouldn’t treat everybody with the same level of disdain because of a few that behave in this appalling manner. They should remain professional and not allow others to influence the quality of service they aim to deliver. But I can’t help but sympathise and chose to overlook the shortfall in service they deliver given I feel somewhat of a ‘HIV hostage’. That, if I was to raise this directly, I’d be marked down as a ‘troublemaker’ or bizarrely have my treatment compromised and/or withheld. So, it is probably best not to ‘bit the hand that ‘treats’ you’!

I know I am a ‘low-maintenance’ patient in that my aim is to be in and out as quickly as possible, ‘hello, thank you’ and ‘goodbye’. As I shared in my book, you can say anything to me, and I couldn’t give ‘a flying fuck’. In this instance, constantly being met with shitty attitudes from staff/receptionists at 56DS makes me feel my HIV is the cause of this treatment. And for the first time, I start to self-stigmatise that I and others are being treated this way because they think our HIV makes us inferior for a basic level of customer service.

PRICK: 2 Arms, 5 needle holes day after 56DS review

And on many of my visits, the attitude is also experienced in consultation/treatment rooms. My mother always complained doctors found it difficult to get a vein for blood from her and it turns out I am somewhat the same. On one review I entered the room for blood’s and was met by three individuals, two of whom were training. I was asked if one of the trainees could draw the blood. I wanted to say ‘no’ as I knew it was difficult, but I did that typical British thing and said “sure”. Well, twice she tried and failed as I sat in absolute agony as she tried sticking the needle into a vein, a vein she didn’t have. Then the second trainee attempted despite making reassurances she would be successful, which I foolishly believed. Well, she tried twice to the point I screamed in pain and politely asked them to stop.

I again reminded them I have difficult veins and was abruptly told by the main nurse “no it’s because you haven’t had enough water”. I couldn’t believe my ears, like I don’t know my own body, please! I knew to remain silent and say absolutely nothing for the remainder of the visit. Again, I didn’t want to be labeled ‘troublemaker’ on my record. I did a few times get a nurse who was fab at getting a vein, the strap nearly severed my arm like a cheese wire, but she got a vein straight away so no complaints from me.

On 17 May 2022 I went for my review and on every previous visit to 56DS the receptionist would hand me the sample pots for the routine STI screening. I had, until this point always politely declined the tests and when asked why I was refusing them I’d state, “I haven’t had sex”. I used to be so embarrassed, declaring to all those waiting behind me to check in that I’d not had any action, looser! I didn’t see the point in wasting money doing a test that I knew would be negative and after testing negative on HIV diagnosis.

On this visit, an ‘annual review’, the receptionist said “take a seat” after check-in. I asked for the sexual health sample pots as I’d had a bit of action about 2 weeks prior to this review. “It’s not mandatory,” he said. I replied, “Yeah but I’d like to test please”. I could see the pots sitting on the top of his desk in their usual place, so it seemed they were still giving them out. He said again “ testing, it’s not mandatory”. I paused as I thought ‘that’s not what I am asking dick head’ but I smiled and said “that’s fine, but I’d like to test. It’s my annual review” to which he repeated, “it’s not mandatory”. I conceded by saying “ok” and took a seat in the waiting area. Again a 30-minute wait to be seen, a time usually utilised for taking the samples and leaving them in the hatch by the toilet before your appointment.

The nurse drew my blood, noted my weight, and asked if I had taken my samples and placed them in the “hatch”. I said, “the guy on the desk wouldn’t give me them, I asked three times”. The nurse replied “it’s your annual review, you need….” I interrupted, “…it’s not just that. I was sexually active 2 weeks ago so wished to be tested”. The nurse to his credit was outraged and got up to either go speak to the guy or fetch some sample pots saying “let’s get them done now” to which I thanked him and said I genuinely didn’t have time as I had to dash to work as I was already late given the long waiting time.

My next review was 21 October 2022 and again I arrived 10 minutes before my appointment time and took a seat. Two trans women followed shortly and one argued with the receptionist given she was late. Well, when I say "‘argue’ that’s a bit of an exaggeration. As the receptionist highlighted, she was late and may not be seen as they have other appointments to honour. She acted as though she was Miranda Priestly from ‘The Devil Wears Prada’ with a “bore someone else with your incompetence” kind of attitude. As she stood at the desk delivering her sassy exchanges her friend sat next to me.

The other saying to the receptionist “just call who you need to call sweetheart” before she (patient) came and sat next to her friend. I was blown away again, that someone would behave in this way when accessing such a service. If you are late and you know others are accessing the same service at specified times, have a bit of humility about you. At least apologise for being late and perhaps ask if they could pull out all the stops to squeeze you in. Don’t act like a complete prick!

The friend started to watch videos on her mobile and as she did the volume was so loud that the speaker on her phone was crackling. The patient, in Portuguese, told her to turn it down. I lived for two years in Portugal and my ex, mentioned in my book is Portuguese, so I know more than just a little of the lingo albeit a little rusty. Then the friend took a video call and again the volume of both the phone and her was exceptionally loud. The waiting room for HIV in 56DS is usually very quiet, so much so that you could hear a mouse fart. Although you get to hear some funny stories by staff sitting behind the reception desk, usually centered around what or who they find in the toilets. A few minutes later the bell of St Anne’s church tolled 10am, the time of my appointment.

10:26am I looked at my phone and note the time, I am still in the waiting room waiting and she was still on the phone/video call talking loudly in Brazillian Portuguese. I am only able to decipher bits here and there given she often talks too fast for me to translate in my head. Although what I did manage to gauge was, she landed yesterday from Brazil and is staying with her friend (patient). She doesn’t intend to return to Brazil and intends to outstay her visa. She won’t have surgeries in the UK instead, she has a doctor lined up in the EU and will travel on with a claim of Italian heritage. And before I tuned out, she bought an expensive mascara on their way to the clinic. I don’t know the Portuguese word for mascara, but she said it was expensive and proceeded to get out said mascara to show the caller on the video. I assume he made a comment about it looking like a dildo as she filmed herself acting by pointing the camera between her legs and gesturing an ‘insertion’ motion.

By this time, I genuinely have a headache given her voice is booming yet high-pitched and screechy. And her friend has been in with the doctor for a while. Several other patients waiting well before I arrived look over now and again in that disapproving manner, some shaking their heads at her loud behavior before looking back at their phones. The guy sitting on the other side of me is tutting and exhaling but I can’t tell if it’s because of her on her video call or because he’s been waiting for so long, or maybe both. I am looking in his direction to look out of the window but avoiding eye contact to avoid him possibly sharing his thoughts and me being dragged into a confrontation.

I couldn’t stand it any longer without wanting to say something, and I know through observations over recent years that to say anything would result in me being screamed at and no doubt as my peer’s share, I’d be randomly accused of being ‘transphobic’. So, I decided it was best to remove myself and say nothing. I went and stood by the reception desk which was the only available space to stand. The receptionist asked, “are you ok there William”? I thought ‘for fucks sake’ and caught on the hop I asked, “do you know if I will have to wait much longer”? I felt a tit because I didn’t want to appear demanding or impatient. He said I should be the next in and with that reassurance, I went to sit back in the chair as to stand in the open space would make me look ‘lost’. As I walked back to the seat a nurse appeared and called someone else who’d been waiting well before I was, so I wasn’t next as I had just been reassured. That didn’t bother me, but this ‘noise’ clearly was.

As I sat back down, the woman next to me on her phone said in Portuguese, “the guy next to me has a problem with me”. I assume she was referring to the fact I had gone to the reception desk and then made an inquiry. I took the bold opportunity to say “Eu nao tenho problema” (I do not have a problem). I wasn’t sure if I had got my Portuguese words in the right order and refrained from including the word ‘you’ as I had forgotten which was the female and masculine variant of the word and to innocently state the wrong one not being native Portuguese speaker could see me being accused of transphobia. But I thought it might highlight that I might, just might understand all that she is saying. She looked stunned so I politely spoke in English “your call is rather long and loud; I can only speak for myself but it’s giving me a headache maybe it would be more appropriate if you take it outside”?

I didn’t think my suggestion was unreasonable, I think had I been her I would have taken it outside after a few minutes. Actually, I am being disingenuous as I wouldn’t have made/taken a call in a quiet HIV waiting room in the first instance, especially a video call with a two-way speech as though I was sitting in a Starbucks. In 2022 I think we are all aware we speak a lot louder when on the phone than we do in person, well, those of us with enough self-awareness and not up our own arse.

She replied in a sassy manner “darling I don’t speak English”. I didn’t believe this statement entirely; a non-English speaker does not have the confidence to start a sentence with “darling”. I, therefore, repeated the same and the guy to my right said “exactly” in agreement with me, to which I turned to acknowledge him but didn’t engage as I didn’t want to start a riot. “I am waiting for my friend, if you don’t like it then ‘you’ leave,” she said, in fluent English. Then she pointed her mobile phone at me by turning 90-degree. Filming me, to which I felt this was outrageous!

SCARY MOVIE: Brenda in 56DS

She is on the floor in a clinic dedicated to HIV care and deliberately pointing a camera that is either recording and/or broadcasting my image is, in my view a serious breach of my basic rights. If this had of been me, a gay man doing the same to this trans individual I guarantee, I’d have been taken down instantly, no questions asked! And no doubt she would have screamed the house down!

What if I was wanting to keep my HIV status private? Talk about a breach of rights in terms of my confidentiality! I thought ‘this is not cool’ and as I stood up to walk out of view of her filming, she followed me with her camera and I heard another service user saying “here, don’t be filming me” as he no doubt fell into view of her camera. I asked her “are you a patient here” and she replied arrogantly “no I am waiting for my friend”, again in fluent English. I kid you not, it was Brenda from the cinema scene in the film, Scary Movie!

I approached the receptionist who looked concerned as I approached and he asked, “is everything ok William”. I said, “no, that lady over there is filming me without my consent. She said to her caller that I apparently had a problem with her for merely speaking to you a moment ago. I merely highlighted her talking loudly for over half an hour on a video call was giving me a headache. And that she should maybe take her call outside”.

The receptionist grimaced and sucked his teeth as he contemplated if it was worth approaching her. As he did, I further stated “she says she is not even a patient here, just waiting for a friend” to which the receptionist said nothing and continued staring at her. His colleague entering the office door to the reception desk paused to listen in and then look at the female still shouting into her video call.

Given his lack of willingness to intervene to resolve the issue no doubt in fear of being accused of ‘discrimination’ I merely said “I cannot stay any longer if it’s not a ‘safe space’” a reference to 56DS stating it offers a ‘safe space’ for the transgender community to access its services. And quite rightly so, but do PLWHIV including those of the LGB acronym not have the same right to a ‘safe space’? The receptionist merely replied “ok” and I took that as confirmation that my concern would not be treated seriously and it was preferable that I left, abandoning my appointment given I only had 2 biktarvy tablets, my HIV medication remaining.

WEBSITE: 56DS

I emailed 56DS while outside on Dean Street outlining what had happened and that I had only 2 tablets (2 days of medication) remaining. I requested a prescription be made for me to collect to ensure I retained 100% adherence and my HIV remained U=U. The response was conciliatory, a ‘squeeze you in’ appointment was offered for later that day, but I was working at the time offered. My request for a prescription, emergency, or otherwise was denied by email.

I logged into the KLICK app where I am to make all my appointments and booked the next available which was 21 November 2022 at 9am. Resolved with just getting on with life with no medication I sat at work and did some maths. I realised I could have only consumed 5 months of 6 months of medication and was therefore missing a bottle of meds that could only be at home. Turns out after several hours searching my home that I had perhaps taken the bottle from its usual place for a social media photo and done the ‘quick tidy up’. Perhaps firing the bottle of meds into a kitchen drawer where I found them the next day.

CONFIRMED: 3 days prior still 21 November at 9am

I arrived at 8:55am on 21 November 2022 for my 9am appointment. I witnessed the receptionist being short with someone ahead of me who didn’t speak English. I thought ‘oh here we go’ in a bid to prepare myself for the usual surly attitude when my turn came. I gave my name and the time of the appointment. He asked me to repeat my name, then give my mobile number before declaring: “you don’t have an appointment, let me see if you are on the right floor”. I resisted saying anything in a bid to be helpful and just allowed him to get on with his search.

MYSTERY: Appointment date amended

He then said I didn’t have an appointment and could I show him my appointment confirmation on the Klick app. As I showed him, he pointed out the appointment was for the next day, 22 November 2022. I said that is “impossible” I booked the 21 November 2022. Thankfully when I did make the booking, I screenshot it at the time as I previously experienced a ‘confirmed’ appointment vanish a month before my actual appointment on the app. Even with another screenshot I’d taken days earlier after receiving a ‘reminder’ of my upcoming appointment on 21 November, he argued I was wrong. I couldn’t be arsed arguing so asked “do you have any appointments today”? To which he replied “No”. I asked, “can you organise a prescription as I took my last tablet this morning” and he advised “no”. I waited awkwardly and as nothing more followed, I turned and left.

Where this alleged ‘mix up’ occurred I don’t know. Whether it was technical or human I don’t know. I’m not that invested if I am honest, but I hear 56DS is overstretched and I wonder if the staff amended my appointment to suit them. As I say, twice before I have gone into the app to verify an upcoming appointment date when organising my life around my HIV review. And previously ‘confirmed’ appointments merely gone, vanished, deleted, hence why I screenshot them, tad paranoid I know. I am just pleased I had an impulsive urge to capture a screenshot to demonstrate I didn’t make a mistake and am not going insane. But in reality, this tangible proof only makes me furious that 56DS denies it.

So, I hardly slept last night with worry! Worry that I’d be told I don’t have an appointment and the fact I would be met by a hostile receptionist. I was awake when my alarm went off at 7am and I literally said out loud “for fucks sake”. Exhausted and ready to sleep I even contemplated just not bothering and going to sleep. But resolved in getting this sorted I got up.

The walk from my home to Soho is 20 minutes, but it took me short of an hour. Indicating I was unintentionally walking slower than usual, literally dragging my feet. And this was odd because my clinic is the only ‘ally’ in whether I live a long and normal life or death of HIV/AIDS or an AIDS-related illness. Sounds dramatic, but it’s true.

I stepped out of the 56DS lift on the 3rd floor at 8:51am with my facemask (covid-19) on as this is still being implemented at 56DS, and my heart sank. The receptionist from my visit in May, is sat behind the desk attempting to quickly pull up his facemask to cover his mouth and nose. I had to laugh to myself as back in May he barked at everyone who came in without a facemask or had collected one from the ground floor on entry but not put it on.

“Yes” he barked at me. “Hi, Hampson, 9 o’clock” I replied. “Take a seat” he said. ‘Phew,’ I made it without any added extras. I could see the sample pots for STI testing along the desk, but he didn’t hand me any and still not having tested since my last review (May 2022), I didn’t bother to ask as I’m sure he’d say the same as last time “it’s not mandatory”. I sat down in the silent waiting area with 4 other guys sat waiting.

Lo and behold, drama!

A guy comes in and states his appointment was at 8:30am and he had trouble getting there. The receptionist from a sedentary position shouted to a colleague nearby “is it a yes or no”? I assume ‘yes’, he can attend his appointment albeit late, or no he would have to perhaps rebook. “Yes” a female voice said without hesitation and in a tone that perhaps intimated he need not ask and should just accept the patient. “Name”! The receptionist barked.

He tells the guy to take a seat and as the patient walks from the reception desk to take a seat he says “can you make sure I’m next as I have somewhere to be” while pointing at his watch on his arm. Well, I thought ‘you cheeky bastard, where do you get off’. He sat down and I just couldn’t believe it. I wasn’t sure if this was a cultural thing given he wasn’t British, Spanish I think, but still, this is no way to behave.

For a couple of minutes, I was enjoying the silence and only hoped I got someone who could get a vein when taking blood and I’d be able to get on my way. The silence was sliced in two with a meat cleaver by the sound of the receptionist, “I have Mr. XXX here, he was your 8:30 but he has just strolled in, is it a yes”? he said on the phone to the nurse.

It was amazing how quickly I switched sides because I couldn’t believe what I was hearing. Yes, this patient turned out to be one arrogant arse hole! But you can’t tell him to take a seat after telling him his appointment would go ahead to now call the nurse on the sly. Asking if he is to be seen after you already sought clarification from a colleague, I assume in a position to make such a decision.

“Yes, he is here, I just wanted to ask if it was a yes from you as you have others here already”. Having experienced this receptionist before, I was astounded he was going to such lengths to be deliberately difficult and make the experience for the patient difficult. If he had called the nurse and said, ‘the patient has arrived late, so and so here at the desk said it was a ‘yes’ I just wanted to make you aware he is here’. Or ‘so and so said yes here at the desk but before I ask him to take a seat I just wanted to check with you. I mean there are lots of ways this could have been handled differently. But it was clear, this was somewhat malicious if not bitchy behaviour by the receptionist.

In my hotel years, I used to say demanding guests on arrival don’t realise the receptionist has a lot of power should you piss them off. My team used to allocate bad rooms to gobby guests making demands for room types or room views etc. But was this appropriate in a clinical setting? Yes, the patient was a dick by making the statement “can you make sure I’m next as I have somewhere to be” but surely in a clinical setting you just take it on the chin and be professional. Anyhow, a bit of whispering went on between the receptionist and the nurse on the phone and I knew he was hatching something. But I told myself I can’t see this receptionist making the effort to come out from behind his desk to speak to the patient, but he did.

“Just to let you know, the nurse has other patients to see before you because you were late. So, it may be 9:30, 9:45 before you are seen” he took great pleasure in stating. The patient’s face said it all, ‘it was at that point he knew he’d fucked up’. The receptionist wasn’t being helpful nor trying to elevate the service he or 56DS provided to patients. The call I heard him make to the nurse initially was on the basis he was hoping the nurse refused to see the patient and he’d be able to deliver the bad news to the patient as a means of revenge. There is no other explanation.

I was called just after 9am, the nurse said hello and introduced himself, he turned out to be the nurse the receptionist was talking to on the phone and the nurse I had seen in May. He said he had a colleague joining us to observe. Turns out his colleague was taking my bloods which I was not pleased about but thought it best not to say anything. He put the band on my arm to get a vein and I merely stated, “it needs to be tighter than that” and nobody responded. I thought ‘I’ve had tighter arm bands on as a kid, than this’. He repeatedly slapped my arm to find a vein to which I said “yeah, they are hard to find you need to tighten this strap”.

He replied, “give me your other arm”. I looked down and could see a blue vein, it was there but the strap needed to be tighter. But I complied although not happy and struggled to pull my other arm out of my coat and then a sweater while seated with a pillow on my lap. He put the strap on the other arm, and I said, “it needs to be tighter”. I wasn’t being a dick, it wasn’t a case of me stating they needed to go beyond normal, the strap was simply not tight. He’s again slapping my arm, asking me to form a fist and this went on for a short while. I said, “the strap needs to be tighter” and I will concede by this point I am getting irritated that I am being ignored although remained polite. The nurse took his eyes off the computer to look at my arm and then directly at me. I got the shittiest of looks. I thought ‘ok, remain silent Will’.

He eventually got a vein and I could feel he was shaking taking the blood before he told me to hold the gauze to stem the bleeding before saying “there, that’s a good boy”. I knew instantly to remain absolutely silent and not respond, but I couldn’t believe he had the gall to make such a condescending remark. Thinking this over on the way home, I again for the first time in almost 3 years found myself using my HIV to self-stigmatise. Wondering if these trainees are here to practice their blood drawing on PLWHIV like we are lab rats. Not caring who or what is stuck into us given, if we had cared we wouldn’t have contracted HIV in the first instance. I didn’t even get a say in the matter this time, I was merely told he’d be taking the blood.

My mind wondered deeper and deeper before I told myself I was being absolutely ridiculous. But when you try to rationalise why you’d be treated in this way whether it be attitude, tone or even looks. My HIV was the only reasonable explanation as I had not acted, behaved nor spoken to anyone in a manner for them to reciprocate such negative behaviour.

I then went to the pharmacy and there was nobody there, so I took a seat. For the 10 minutes, I was there the nurse remained in his room with his colleague seemingly making the patient that arrived late, wait! The pharmacist/dispenser offers no apology for waiting or a bit of banter if I’d been waiting long, etc when she eventually showed up. Not that it bothered me, just showed she didn’t give a shit. I gave her my details and she looked at her computer. “You collected your medication in October”!

To avoid a long drawn-out saga I resisted the temptation to say, ‘did I’ and merely stated, “I had an appointment in October, but someone kicked off in the waiting room and I left before being seen”. Looking over her computer from the back of the pharmacy she asked, “if you didn’t collect your medication in October, when did you”. I said “17 May” given this was the last time I collected my medication. A few tuts and sighs she dragged herself out of her chair and she fumbled around in a cardboard box before opening a bag with 6 bottles of Biktarvy labelled 21 October 2022. She asked me if I had any allergies before slamming the bag on the counter and walking off. It really pained me to bite my tongue, not because I had the urge to say something sassy or cutting, but to say ‘thank you’ or ‘thanks for your help’ as I usually would to be polite and in recognition of basic service.

It is hard not to start thinking that because you live with HIV that you deserve to be treated in this way. And of course, this is absurd, I think. You’d perhaps expect to be accessing a service that is aware of your diagnosis and offers a friendly and welcoming service that treats everybody with dignity and respect. I am not a believer in this trend to diagnose everything as ‘mental health’. And I certainly heard this at every corner when diagnosed with HIV. I think in life sometimes, people just need a good slap. But surely to provide a service in this way only serves to damage mental health and in my case push me towards using my HIV to self-stigmatise as a rational explanation. It is a little like this cohesive behaviour we are starting to hear more about. In that over a prolonged period of time, if you are treated or spoken to in a negative way you start to believe you deserve it.

Even myself, albeit I am gobby in terms that if I see a ‘wrong’ I generally call it out although in a diplomatic manner. But on a whole, I am often the voice that tells myself and/or friends when something is really not worth raising. That if doing so will only create ‘drama’ with no prospect of a resolution then that process itself could impact them more than if they just let it go. I too, while I can stand up for myelf and others, do like a quiet, stress and drama-free life. And in this instance, I have had glancing thoughts of removing myself from being on the receiving end of these negative experiences when attending my reviews. And that means withdrawing from HIV treatment altogether. But the pragmatic side of me will spend the next six months looking for and researching other service providers to access HIV care. Of course, making sure I don’t jump from the frying pan and into the fire.

This also means while listening to my peers both from the trans and gay community who have called me to ‘rethink’ where I lay my support and to quietly “tap out” by revoking my support.