Sharing your HIV status ought to be a personal choice in every case and our decision not to disclose our status to our two sons survived for nine years until my admission to hospital on 5 November 2018 following a heart attack.
A routine screening test with the Nurse Practitioner that day started with a dramatic 999 call, an ECG (Electrocardiograph), administered by the paramedic confirmed my heart attack in progress and urgent transportation to the Accident and Emergency Department (A&E) that I once managed. On arrival, a male Nurse Practitioner greeted me and chaperoned the trolley into the acute assessment unit. I shuffled from the ambulance stretcher to a hospital trolley and the nurse commenced history taking of my presenting health status, noting my allergies to aspirin and penicillin. I did not hide my HIV status knowing that any medication administered needed to complement my anti-retroviral treatment (ART), but I did inform him that my status was not known and not to be disclosed to my two sons, one of whom worked within the same hospital setting. He wrote this on my record. I noted his double gloving before he inserted a cannula into a vein in my arm. He hooked me up to a heart monitor. I said nothing.
Following this acute intervention, I was transported in to the heart of the A&E department and parked up against a wall awaiting a vacant cubicle. I was alone now as Nigel, my husband who had picked up our car from the GP surgery, was taking our son’s dog home. Minutes later, and now in a cubicle, another male Nurse Practitioner introduced himself as my nurse on this point of the care pathway. He reviewed my patient record, confirmed my allergies, checked my pain level that remained in my back between my shoulder blades. This was increasing and off he went to get a doctor to prescribe some morphine in case it got too bad.
At this stage, a stressed Nigel and our younger son, turned up and came into the cubicle. As they sat there, the Nurse Practitioner came back and asked about what medication I took at home. My son looked anxiously at me. How could I tell the nurse about my ART therapy with my son there? We had chosen to keep it from them for a raft of personal reasons and wanted it to remain our secret. I told a white lie stating that I was not on anything but gave the nurse a knowing look that he managed to pick up. I was to be admitted and had to wait for a bed to come available on the Acute Assessment Ward (AAW). My other son turned up and all sat anxiously looking at me. I felt on tender hooks every time a nurse came to ask me anything in case they asked about my HIV status. I told my boys not to worry that I would be ok and told them to go back to work. The elder son stayed a few moments but my other son was not budging. He wanted to stay and had permission from his manager to stay as long as needed. The nurse practitioner came back and asked to see me on my own, and with the cubicle emptied, he asked again about my medication at home and I confirmed my prescribed ART treatment. At that stage, the pain got so severe that I needed more pain relief. A female nurse came and slowly injected morphine into the cannula in my arm. The pain subsided.
Two hours from admission to A&E, I was on my way to a bed on the 6-bedded AAW. Another nurse greeted me to the ward and I was placed in bed 27. The curtains were pulled round the bed next to me and I became conscious of a nursing sister on the phone to relatives informing them of its occupant’s demise. The elderly lady in the bed at the other side of me was muttering something, fingering the counterpane as she hobbled round the bed. A few minutes later I witnessed her fingering a red foot pump under my bed. A nurse came and moved her back to her own bed and then her rather harassed daughter turned up to get her ready to go home. The blinds were pulled round her bed. Opposite and to the right, I recognised the lady as having been in A&E at the same time as myself. She had very purple legs and was anxiously holding three cigarettes in her hand, whilst trying to attract a nurse to take her downstairs for a ‘smoke’. Directly opposite, an older Scottish lady described by the nurses as ‘off her legs’ was just being admitted. Finally, the last bed opposite to my left contained another very elderly pale lady who desperately kept asking for a commode. It felt so alien to be on the other side of the fence, being a nurse and manager of the unit for many years. I looked at Nigel and my son and they grimaced back having scanned my fellow occupants. ‘Don’t worry Mum, you will be moved soon,’ my son stated reassuringly.
A nurse came, attached my monitor to the wall and took recordings of my blood pressure, temperature and pulse on a chart at the end of my bed. The curtains were drawn around my bed as the trolley came to remove the dead lady in the bed next to me. I heard the familiar sound of its lid being pulled back and a groan from a member of the porter team as they lifted her into the trolley box. Nigel had gone to check on payment for the car in the carpark leaving my son to sit with me. A young woman came through the curtains and asked if my name was Jacqueline. Although no-one calls me that, I confirmed it was me. She wanted to know about my medication at home. This was uncomfortable as my son was sat there and I tried to give her a ‘deflective look’. But she did not ‘clock’ the look and asked again if I was on any medication at home. This time my son answered for me ‘stating no, Mum’s not on anything’. I felt guilty not telling her about my ART but how could I tell her about it when trying to keep my status confidential from my son and why was this not already in my patient record?
But two minutes later, the issue was taken out of my hands when a junior doctor barged through the curtains. ‘Hello Jacqueline. I’m Doctor ****** and I have just come to check on your medication at home’. This time, I stated that I was not on anything, trying to give him a look that said, ‘go away and come back later.’
It did not work and he blurted out loudly ‘well you are HIV positive, aren’t you and I know you must be on medication at home?’ I remember seeing the back of my son as he vanished through the curtain and my heart went cold. In shock, I whispered ‘oh my god do you know what you have just done?’ The junior doctor looked in horror when I told him my son does not know I am HIV positive, and he sat down apologising profusely.
‘F**k! Oh, my god. I’m sorry’ he muttered as I stared at the curtain and wondered if any of the other patients registered what he had just said. I had just had a heart attack and now my son had to deal with hearing about my HIV status. Two minutes passed with the junior doctor looking aghast at me stating he did not know, nobody had told him my status was confidential.
The curtains opened and a very pale Nigel and an even paler son entered and I could tell Nigel had been confronted by my son as he returned to the ward. The junior doctor vanished and my son stated he had to go back to work. Nigel sat down confirming he was greeted on entering the ward with the words, ‘Is Mum HIV positive?’ and Nigel having to confirm it was true and his own HIV status.
The junior doctor’s consultant came to see us to apologise for his misdemeanour stating what a bright, intelligent young man he is. I asked why the junior doctor had not been informed that our status was not to be disclosed to our son. He apologised stating that it was in my patient records but you really had to search for it. He sat with us for about 30 minutes telling us how excellent this junior doctor was and how he had learnt from this exposure of our status. But for us there was no way back, the damage had been done.
That evening Nigel had to go to our other son to shatter his image of us as the perfect parents. The issue festered in Nigel’s head in the days that followed. And once discharged from hospital, I wrote to the cardiology consultant to highlight how our now exposed status affected our family unit. The boys had stopped speaking to their dad. I requested a meeting with the junior doctor, the consultant, Nigel and myself which took place on the 13 November.
The junior doctor looked pale and worried when we arrived on the cardiology unit. His hand was cold and wet when he shook ours. We did not seek to damage this young man’s career but for him to reflect and learn on his approach to me that day. What would he do differently in the future? His remorse was obvious. The frightened look on his face spoke volumes. He apologised profusely speaking about how he wishes he could take back his error. He talked about going off to the library to learn more about HIV before this meeting, as we were the first people he had ever met with the virus. We reminded him that every patient he sees is a person behind their condition and our message is not just for someone with HIV but any condition with any personal information that the person wishes to keep secret from family members. The meeting took an hour and we left feeling vindicated, that he had learned a very hard lesson on how not to approach patients.
The next day I received an email from the consultant inviting Nigel and myself to speak to all the junior doctors on HIV as part of their training programme. This will take place at the end of January 2019. This is a positive to come out of this negative situation.
As for our sons, this non-consensual and inappropriate disclosure of our HIV status has really disrupted our family relations. There is no way back, we cannot change what happened and only time will heal the pain they are now experiencing. But time is a great healer and we are at least starting to talk to each other, so I’m optimistic for the future…
17 November 2018