In the 1980s and 90s, the HIV-AIDS crisis was an extreme public health emergency, and while it hit so many people and families hard, it’s fair to say gay men took the brunt of it. People living with HIV faced stigma, discrimination and medical uncertainty, all the while fighting to stay alive in a world that too often turned its back on them.
But amidst the fear and loss, there was also extraordinary resilience. Communities formed, caregiving became an act of defiance, and food, something so fundamental, became a source of comfort, control and even rebellion. If we fast forward to today, while HIV is now a manageable condition for many, the echoes of that era remain.
The way we think about illness, food and caregiving has evolved, yet some of the same questions persist. Who gets to decide what’s right to eat when someone is seriously ill? How do we balance medical advice with the need for dignity, pleasure and personal choice? And what can we learn from those who are on the frontline of care when little else was available?
In this conversation, I speak with Nicola Miller, today an award-winning food writer, but back in the 1980s and 90s, a frontline HIV and AIDS healthcare worker, helping people with AIDS as the epidemic worsened in those terrible early years. The people that Nicola worked with were mainly gay men and their carers, families and friends.
Joining us is David Whitehouse, my husband, who in the late 1980s left a career in the city to run his own cafe in Richmond and to care for his partner Ian, who was living with HIV and who died at the end of 1993. In 1994, David went on to cook at the HIV service hub, the Globe Centre, located in Mile End Road in London. Today, Nicola and share their deeply personal insights into how food shaped the lives of people living with AIDS in the 1980s and 90s.
Not just the role of food nutritionally, but emotionally and socially. From hospital meals to home cooking, alternative diets to fast food, these are their memories and the role of food at that time as they saw it. There are so many other perspectives on this from different groups of people in different caring situations and I know I will revisit this subject with them on a later podcast. But for now, this is a start.
Dan: David, Nicola, thank you both for this moment to talk. Nicola, let me first ask you, how did you find yourself working in the field of HIV and AIDS?
Nicola: Well, I kind of fell into it. I had my daughter quite young. She was born when I was not quite 22 and my relationship with her father broke up and I moved to London with her. I started – well it was a continuance of some work I’d been doing with drugs advisory services – working with people with substance misuse problems.
Now, once I’d moved to London, the service that I worked for, we were seeing more and more gay men coming for help and we started to see that they were testing positive for HIV. So over time, this aspect of the service obviously developed and I developed along with it, but it was all completely unplanned and very ad hoc, which pretty much represented what it was like working in the field of HIV and AIDS at the time, because we were having to kind of make it up as we go along and design our own job descriptions and work from a very small amount of evidence base.
Dan: David, tell me about your situation in the mid to late 1980s. How did you and your friends respond to this terrifying AIDS epidemic?
David: Yes, thank you, Dan. I think to begin with, there was a huge amount of fear and uncertainty because so little was known. I remember that for Ian and I, it was quite early in 1984 when a very close friend of ours was taken ill and rushed into hospital and I don’t think I have ever gotten over the fear on this poor guy’s face, because nobody really had any answers as to what could be done for him and it was just this hideous situation that so many gay men in particular found themselves in.
Dan: I remember that time so well, David. It was frightening. Tell me, Nicola, what were the challenges you were facing?
Nicola: The biggest challenge, I think, was we didn’t know for certain how it was going to pan out but we had an awful idea what might happen and at that time sort of government interventions and funding was in its infancy so again we were having to rely on a lot of volunteers and family and carers and friends to sort of fill in the gaps and we weren’t able to do very much in a sort of an organised and statutory way. That came in the sort of mid-90s really but it was really hard.
The fear was overwhelming at times. Nobody knew what to do. The age of consent was, as you know, still 21 until 1994 which isolated young men who couldn’t come to us for fear of being prosecuted or being found out by the authorities.
There was a very short period of time between the decriminalisation of 1967 of what they called private gay sexual acts, only a few years of freedom, then along came HIV and homophobia surged and we watched as these brightly alive men who were coming to London to embrace freedom or, you know, a better version of it and then AIDS hit. Vast sections of society laughed at them and blamed them for their misfortune as they died and I just, I still feel furious. I rarely talk about it.
This is probably the first time I’ve formally spoken about it to anybody and, you know, it makes me so angry and sad.
Dan: Absolutely feel that anger with you, Nicola. Tell me, David, it was in 1984 that your late partner Ian was diagnosed as HIV positive. With his diet, did he need to avoid any particular foods or did you both keep things as normal as possible?
David: Well, I think for a lot of people who were living with HIV at that time, there were some regularly seen or talked about concerns, particularly extreme weight loss and diarrhoea. And whether it was the virus that was causing this, or in some cases, I suspect the early forms of medication that were being experimented with that were responsible, a lot of gay men at that time who were HIV positive had awful problems.
So I think a lot of gay men just wanted something that wouldn’t upset their digestion, that was comforting and warm and gave them a sense of pleasure, but maybe didn’t have a lot of spiciness or ingredients like a lot of fibre that might just, they feared, make things worse. And certainly at home, I think we ate a fairly normal diet in that we kind of had a roast on a Sunday if the housekeeping would stretch to it and we’d have pasta and things like that. But we probably steered away from things we’d really enjoyed earlier on, such as hot, hot curries or doner kebabs with chilli sauce on. I think things like that were sort of beyond the pale.
Dan: Ah, David, I can well imagine that. Nicola, during that time, how did you witness food playing a role in the care and emotional well-being of people living with AIDS?
Nicola: It was central. Before effective treatment existed, we couldn’t save lives. We could barely prolong them, but we could help make life as meaningful and pleasurable as possible.
And food was a very powerful and fundamental way of doing that, not just for me and the people I worked with and also the men that I worked with, but for other staff, carers, family and friends. It was something that you could do together. You could eat together.
Sometimes you’d prepare food together. You’d go out shopping for food together. You would arrange for food to be delivered and cooked.
And we were less formal back then, so we would do whatever worked and we would go to extraordinary lengths to meet somebody’s wishes. You know, there weren’t many frameworks in place, so we had no choice. But it was an incredibly sociable thing, eating, and we did our best to sort of protect that aspect of it and not to medicalise it too much.
Dan: Absolutely. I think there’s still a fear with hospital food we’ll be disconnected from that satisfaction that makes us feel comforted. David, going back to what you were saying previously, was food also feeding and protecting yours and Ian’s sanity even, caring for your emotional health?
David: Well, I think there’s a very obvious connection between foods you eat which fill you up and that sense of some sort of emotional or even physical satisfaction. And it’s very understandable that if you’re feeling really wretched because of your health, eating something that makes you feel comforted is a very basic human response and human need.
Dan: Yes, sure, David, especially during that time. Nicola, what about food for special occasions like Christmas and birthdays?
Nicola: Yes, I mean, you know, we would celebrate birthdays and Christmases outrageously. I mean, you know, sort of rooms would be decorated and we couldn’t order food online. So, you know, sort of, we would have to go shopping and we’d go around every store that we could imagine to find sort of speciality foods and to prepare foods beautifully to make sure that meal trays looked attractive, that we had nice plates.
We would bring in plates from home if somebody was in hospital or in a residential unit. We would try and use their own china, their own crockery. We would put flowers on their trays. So many different things that we tried to do.
Dan: Avoiding monotony when you’re having to eat carefully is so hard. And I’m sure, Nicola, in a hospital setting, really tricky to manage for everybody involved. Thinking back, I remember eating with friends who were ill in the days when Café España in Old Compton Street was, despite the name, a pretty traditional British fry-up place and going there with friends who were ill for a hot meal.
It really helped us warm up physically and mentally. David, what meals did you and Ian find warming?
David: Oh, well, I mean, often just the very comforting things like a cottage pie or a shepherd’s pie or something like that, or a lovely pasta dish, you know, a pasta bake or lasagna, whatever would make Ian feel kind of happy. Yeah, when Ian’s parents would visit from Yorkshire, which they didn’t do as often as parents might have done, we would always, of course, have to have fish and chips at least once during their visit. And even that, the sort of comforting traditional nature of it and perhaps the memories it brought up of happy times in childhood, I think all contributed.
Dan: Oh, gosh, yes. Nicola, back then, you mentioned you went to extraordinary lengths to help patients with their eating and food. Can you expand upon that a little?
Nicola: Yes, yes. I mean, there was huge, huge, huge challenges. First of all, we had to know the social and cultural context of how and what people eat.
You know, not everybody has the same religion, is from the same cultural background. And often we had men who had become sort of estranged from their families, and not by choice. I mean, one guy, he was a black Muslim man. He said, “you know, any other disease and I’d have aunties surrounding me pushing food into my mouth“. I remember crying and crying at the time because all of us did our best to be that connection for the people we cared for. These men hoped to find a new connection that was like “family”, but you know, it’s never the same.
It’s not the same.
Dan: I can imagine, Nicola. I wanted to ask you, David, it was in 1993 when your partner, Ian, died of AIDS at home with you by his side. Honestly, I don’t know how you coped.
What was that time like for you before and after? There must have been so many brutal events happening in succession.
David: Well, yeah, I mean, the order in which things happened were that Ian’s health had declined to a point where he really needed a lot more care. And so I closed my business down first, so that I could then spend, it actually turned out to be just short of a year, at home all the time looking after him, and with him. And in fact, in lots of ways, it was a very personal and intimate time because it gave us that sort of pause and freedom to talk about any issues which had remained outstanding.
Though after the years we’d been together, I think we’d probably talked about everything we’d ever wanted to, but it certainly meant that there was nothing left unsaid between us. And the real problem was that when you’re looking after someone who isn’t well, it can become quite overwhelming for the carer in that everything you do is related to them. And the only purpose you really have is to look after this person that needs love and care, which you’re so pleased and happy to be able to give them.
But when that person dies, you’re left with a huge void. And so you’re then sort of at home, there’s no one to make a meal for, there’s no one to clean up after, there’s nobody to take to hospital appointments, there’s no pills or other things to collect from the chemist or to have delivered. And you suddenly have this big piece of empty time.
And I felt that the thing I would like to do, because we had been able to call on some organisations to help us while Ian had been alive, I rather wanted to put something back into the pot. And so volunteering at the Globe Centre, for me, was a way of doing that. It wasn’t in my immediate neighbourhood, which actually made it easier to go and do it, rather than necessarily being faced with local friends in that setting.
And so there was that. And I actually went there initially to be their volunteer receptionist, which was a new thing for me. And I had to learn how to use a little switchboard and put calls through.
And it was kind of funny and amusing and sweet and touching and all of those things. And then after I’d been there a fairly short time, the manager of the place came and said, David, I’ve been looking at your personnel file and you have these food things on your experience list. And I said, yes, that’s true.
And he said, well, would you like to actually work here and take over running the cafe? Because when they’d developed the centre, they’d put a reasonably well-equipped kitchen in with space for a big fridge and a big freezer and a commercial oven and things like that. Because he said, sweet though the people running the cafe at the moment might be, nobody likes their food.
And I thought, well, given that for the length of Ian’s illness, food had been one of our pleasures and cooking for him had been a joy for me. And given that I did have the background, I kind of leapt at the opportunity. And so I took over running the kitchen.
I decided from the outset I would do it all my way, that I would ask the mostly local white young men from the East End of London, who were the main group of people that used the centre, what things that they would like to eat; or things that I knew had given me huge happiness when I’d cooked and eaten them, and that that’s what we were going to do. And it was going to be a kind of home-spun, home-cooked, everything fresh on the menu every day.
Dan: Nicola, what role did you see food play in the emotional well-being of people with HIV and AIDS?
Nicola: Well, first of all, it’s a way of showing that you’ve invested time and love, and that includes staff as well as family and carers and friends. You know, love is a big part of nursing care, and you can do this professionally, although there’s always the risk of becoming over-involved. It happens.
But, you know, you’re looking at something that we all do. We all eat in one way or the other. So, you know, you’re sort of having to provide not just nutrition, which is an incredibly sort of cold way of describing what’s actually going on, which is nourishing, nourishing people.
You know, these are people who are, you know, were often quite sophisticated in their tastes, certainly more sophisticated than I was. They travelled, they dined out, they enjoyed cooking for themselves and for other people, and helping them sort of retain these joys was really, really important. You know, we’re talking about trying to find out as much as possible about a person and what they like to eat and how they like to eat, and then trying to replicate that in a really unnatural setting, which is, let’s face it, you know, a hospital or a residential unit is.
Dan: Oh gosh, yes, Nicola. Tell me, David, did you bring recipes and memories from cooking for Ian at home into your work at the Globe Centre?
David: Well, yes, in that I wanted it to be comforting, homely food, and that was what the guys who were there primarily asked for. I think there was a big overlap between things I’d be making at home for the two of us or, you know, for four if we’d had a couple of friends round for lunch one day, that kind of thing, to a much larger number of people. And mercifully, I had the ability to adapt to doing that.
And so, yes, we went from when I took over, the people prior to me had, I think, been doing on average lunch for 10 people a day. And within a matter of two or three weeks, I was doing lunch for 70 people a day, most days of the week, Monday to Friday. We weren’t there at weekends, but Monday to Friday.
And I think the important thing was that it was homely, comforting food. It was, again, things like, you know, corned beef hash and some mashed potato, which was made from real potatoes, not dehydrated flakes. Or we made quiches where I would be rolling out and figuring out how to patch together large pieces of shortcrust pastry in a big gastronome tray and fill it with a mixture of eggs and cream and cheese and ham and all of these kind of comforting, homely things.
And so, you see, serving things like that obviously overlapped with a lot of things I’d made at home for many, many years. And I’d always been interested in cooking, which is why after I left my City career, the one thing I then wanted to do was food-related. And so I brought all of that.
And I just wanted to see people eating good, wholesome food. Because as has already been explained, amongst the complications of living with HIV at that time in particular was that you often felt too ill to want to go and shop. You felt too ill to cook.
If you managed to shop and cook, you’d probably run out of energy to the point where you didn’t want to eat. And I just thought, surely we could do one good meal a day for people who are really in a crappy place and for whom some decent food would be a major comfort. And so it was in so many ways a happy and joyful time.
And I would also say that because nearly all of our service users or centre members, were youngish gay white men, I think they felt really happy in having a youngish gay white man cooking for them and serving them their lunch every day. And they could engage in banter. And we had a lot of things in common and, you know, points of reference that we shared.
Dan: You were also very handsome as well. So that must have been appealing to them.
David: Well, it’s very sweet of you to say that. And given that you’ve been my husband for 25 years, I’m remarkably touched that you should still be able to say that without even a hint of sarcasm in your voice. None at all.
I don’t know. I was tall and I was slim and I had cropped hair and a big moustache. So I was kind of Mr. Average gay 1980s male.
Dan: Nicola, you’ve mentioned before that you thought that denial played a part in the health of gay men at that time. Did you see it manifest itself within food issues at all?
Nicola: Well, when you’re dealing with a group of people who are quite young, most of them are quite young, quite a few of them hadn’t been living in London long. They’d come to London to feel free and to live their lives in a more independent manner with other men who were similar to them. And they didn’t want to look or be different.
HIV and AIDS, they affected the way that you looked. Many of the sort of infections that you got were in the skin, they affected how you ate, they affected your hair, they affected your weight. And that was embarrassing and awful.
So they were really desperate to find ways to use food to sort of medicate and mitigate these body changes. But also because most of them were very young, and they were out meeting their friends. They were out enjoying the fact that they could actually have sexual relationships that were no longer criminalised to the degree that they once were.
So, you know, they weren’t necessarily eating healthily. They were using party drugs. They were staying out all night.
They weren’t looking after themselves. And denial can take a lot to work through. Having to accept that this is a permanent state that is going to result in your death.
I mean, I don’t know how you do that at 17, 18, 19, 20, 21. You know, my youngest guy was just 17 when he died.
So I would go as far as saying that denial was understandable and it was an act of survival. Well, you know, I know it’s really hard. I know it’s hard for you to hear as well.
Dan: David, was it also emotionally triggering for you at all seeing the physical condition of people coming into the Globe Centre, knowing the brutal effects AIDS would have on people?
David: I think I was so used to it that in some ways bits of my brain had turned off and there were probably things that anyone else would have seen and been upset by that I just took for granted. You know, I’d had so many of our friends die before Ian had died, I’d seen so many people becoming progressively more and more ill as they did in the 80s and early 90s. And so I was kind of steeled for anything I might see.
There were times of huge sadness when you’d come in on a Monday and before I could get up to the kitchen where I was working, another staff member would perhaps take me aside and say, just so you know, X died over the weekend. And you’d think that nice guy, often only in their early 20s, who had come in and eaten my food. And you’d just think, I shall miss you. Once again, another one that I shall miss.
And there were times like that. And you had to just take a big breath and say, well, there may not be 70 people for lunch today. There may only be 69, but we’re going to make it a bloody good day for them.
Dan: David, that must have been so hard. Tell me, Nicola, another issue must have been financial hardship. How did that manifest itself for you and for the people you’d see in hospital?
Nicola: Yes, it was a massive challenge, eating well or even adequately cost money. And as people become unwell, their ability to shop and plan meals and cook and clean up, which is relentless, it never stops. Well, those abilities are diminished. Or you lost your job and struggled to get benefits…
And if like some of my guys, and I hope you forgive me for referring to them as my guys, I feel quite possessive about them. You know, some of them were banned from their corner shops. And yeah, I mean, that’s not even the worst thing….
I mean, there are, as you know, it was just relentless discrimination and hatred, you know. Yeah. So when you’re feeling really tired and your immune system is starting to fail, you can’t necessarily walk to the nearest shop, most people at that age in London didn’t have cars, couldn’t afford to run cars or chose not to run cars.
Yeah, we couldn’t have food delivered, couldn’t order it. We relied on payphones. I mean, I never had any kind of mobile phone or, I mean, you know, most of my client base was organised around payphones, you know, and conveying, relaying messages.
And they had to live like that too, as well. You know, you would have landlines, of course, but they’re expensive to run. And when you’re young and free and living in the city, you’re not necessarily in the kind of accommodation where you have a landline.
Dan: David, do you think for many of the people living with AIDS that were using the Globe Centre that they also felt a degree of safety within that space? You know, this was a time when homophobic abuse on the streets was pretty common for all of us, let alone for gay men with visible signs of illness. Say, like Kaposi’s sarcoma, it might be visible, and if they had severe muscle loss and weight loss, you know, that combination would make you feel like a target, literally, when out walking.
David: Yeah, yeah, absolutely. I mean, the one thing about being there was the sense that you were with your peer group, as it were, and that it didn’t matter if you looked ghastly. I mean, you could never say you looked like death warmed up because, for God’s sake, half of them were like death warmed up half of the time.
You know, this is the sad truth of where we were sometimes. But you’d equally have people who are absolutely, you know, bursting with life. I mean, the joyful thing about the Globe Centre in its prime was that it was such a comprehensive hub because you could go there for lunch, you could go there in the morning just to kind of hot coffee and hanging out with other people.
And we always had sort of snacks and chocolate bars and tea and coffee and soft drinks and things available throughout the day. So if you just wanted a kind of carton of one of those nourishing drinks like Ensure and to sit quietly in the corner with a copy of The Guardian, you could do that. If you wanted to do something else, there was everything from art therapy to counselling to benefits advice for people who were trying to negotiate the awful hurdles of not being able to work and needing to claim benefits to survive.
We had a gym that was also popular with some guys. It wasn’t like today where it seems the whole world is taken over by gym culture, but certainly there was a little group of people who loved coming in because they could use the gym and all of the other people there were, as I said, their peer group. They weren’t going to a regular gym where they might be stared at, shunned, ostracized, asked not to go, told they couldn’t use certain items.
There was none of that. So it gave people this opportunity to just do all of these things and get all of these forms of support and community. You know, it wasn’t that it was so much about learning how to claim social security to meet your rent or having a subsidized gym facility.
Sometimes it was just you wanted to be around other people who you knew would just be entirely accepting of you and never critical and just make you feel that there was a little bit of somewhere that was home.
Dan: And I imagine, too, that with some of the symptoms that HIV showed, certain foods were difficult to eat?
Nicola: Yes, a lot of food was difficult to eat. You need small, regular, high-calorie meals. We used to say they need to go down, stay down and come out as painlessly as possible.
And that meant high-fibre diets could be problematic. Nuts could be problematic. Sour, sharp foods could be problematic.
Milky foods could be problematic because of conditions like Candida, which would go through the entire digestive tract, and in some people, dairy products, aggravated that. The actual physical act of eating is tiring. You can end up using more calories eating and digesting than you actually manage to absorb.
So you have to balance that as well. I mean, even drinking through a straw is actually very painful and or very tiring for some people. If you’ve got a sore mouth, or your muscles are wasted.
It’s a lot of effort. So we relied on sort of low-residue, high-calorie foods like rice pudding, ice cream, liquid meal replacements. Food had to be blenderised, which is just hideous.
I mean, it was impossible to make it look pleasant. Nowadays, you can actually buy low-residue, pureed foods that actually are shaped to resemble the food in their natural form. But even so, it’s not ideal.
Dan: David, Did centre users ever come in with other people? Could they come in with their family or friends?
David: Remember, this was the early 90s, and there was still quite a lot of discrimination and hatred towards gay men generally. We were all seen as potential spreaders of HIV. So we definitely had a policy of security and anonymity for people. So, for example, in the times when I was on reception, if a call came in and said, oh, can I, to pull a name out of the air, can I talk to Terry, please?
We would never go and find a centre member called Terry and say, there’s a phone call for you. We’d have to say to the caller, I’m not sure there’s anyone with that name here. Can I take your number? And if I can find them, can I get them to call you back?
Dan: Nicola, Tell me about high-calorie foods too, because I absolutely remember seeing friends lose a huge amount of body weight.
Nicola: Yes. You know, we would use meal replacements like Ensure or Complan. We would literally squeeze every sort of calorie we could into a meal.
So you would sort of enrich them. You would add extra sugar. It was really difficult because that, for want of a better word, it perverts what was a really lovely meal into something that looks medicinal, you know, and that further causes loss of appetite.
And what we called cachexia, which is a wasting away, the muscle wasting that went on was very specific to AIDS. And it was very noticeable. People noticed.
So we’d look at ways of helping them dress as well, you know, padded lumberjack shirts were really popular because they added bulk.
Dan: Yes, yes. I knew the director, Derek Jarman, a little bit, and probably in about 1986, 1987, I remember we’d have meals at Presto, which was the other cafe that was the other end of Old Compton Street.
We’d eat together there or at his house. And he looked, you know, slim, but pretty well. And then in about 1991, maybe I remember seeing him out in Soho.
It was a bright sunny day. He was with his partner, Keith, and we bumped into each other in the street and he was being helped to walk by Keith. And he, gosh, looked so frail. The weight loss was noticeable. I remember it so clearly.
Nicola: Yes, it happened very fast, it would just melt from them. And no matter how much food we managed to get in, because of the metabolic effects of their condition, they could not put weight on, they could not maintain muscle. And then, of course, you would have the digestive complications, which, you know, all I will say about those is imagine doing 20 washing machine loads a day, which was, I think, you know, a record one of my former guys was kind of oddly proud of.
This must surely be a record. And I said, yeah, a very, very dark record. But yeah, I mean that says it all really, doesn’t it? And also, you know, we’re going back to cultural diets and preferences. A lot of the lentil, you know, the dal based foods that some guys liked were completely out of the question because they were just too harsh on their bellies. And that was hard for relatives and carers when they came in, because, you know, a lot of the guys who were still in contact with their families, well their families had kind of magical beliefs about food that, you know, “they need mama’s food or auntie’s food.”
And it was heartbreaking when it didn’t work or the person could not eat it because it caused too much gastric chaos or it was too painful, too crunchy, too sharp in the mouth.
Dan: And even eating in bed or eating when you’re lying down, that must have been difficult.
Nicola: Yes. You know, try eating lying flat. I mean, it’s bad even for a healthy person. Food does not move through your digestive tract properly. And then if you compound that with the kind of sort of oral symptoms that these guys had, then, you know, it’s just not ideal. But you could be too weak to sit up.
These were things that the men had to navigate all the time. And it was a kind of a trade-off. If you do one thing, then another thing will suffer and vice versa.
Dan: Tell me, David, did you cook for people with different diets? What did you offer, say, centre users who had intolerances or things they just didn’t want to eat?
David: Because I had very limited support, there were not a lot of other people from outside who would volunteer to come in and help. And so I didn’t really have the capacity to deal for those things. But then there wasn’t really the obvious demand for it.
I suspect that in the early 90s, if you were macrobiotic, you probably had quite sort of specialised shopping and eating plans of your own that you stuck to. Could I actually, while we’re talking about volunteers and people that came in to help, just to say that we did ask for volunteers, and I kind of put it around, and various friends of mine came in and did the occasional stint helping or washing up or whatever. The one person who did more than anything else was my mum, who was, I certainly think, 74 or 75 at the time.
And she would be there several days a week. And of course, having raised two gay sons or two sons who turned out to be gay, she had absolutely no qualms whatsoever about meeting gay people. And she was just very concerned that people should look after themselves and be in a happy place.
And so she actually became something of a huge favourite with a lot of the guys that were regularly in there who got to meet her and know her. And it was an absolute joy to see that, I suppose in some cases, they’d probably not had very happy relationships with their own parents who had perhaps reacted very badly to them coming out as gay. And I think it also gave a lot of these guys a sense of having this secure place, that there was this kindly old lady who was there helping to get their lunch ready and who they could talk to and who was apparently quite unshockable, whatever these guys came out with.
Dan: David, did you think some of the users viewed your mother almost like a surrogate auntie of sorts?
David: Oh, I hope they did. I’m sure some of them did. And my mum was very fond of some of the boys as well, because they were really, on the whole, a lovely bunch of guys.
I mean, like any place, we would have some people who took more thoughtful and careful handling, shall we say. But given that it was a time when there were no effective drugs for treating HIV, there was a lot of happiness in that place. And we generated it from the things that we did.
You know, there was one amazing Christmas where we did a proper Christmas roast turkey lunch with absolutely all of the trimmings for a huge number of people. I think everyone who had been to the centre in the previous two years probably turned up for one of our Christmas lunches. And it was just fun.
And it gave these people a kind of fun and a thing they could hold on to that quite possibly, when they went back to wherever they were living, or, you know, families that might not be entirely accepting of them, was perhaps missing. And we put back something that maybe had been missing. That’s what I hope.
Dan: That’s what I hope too, David. Tell me Nicola, did you encounter patients exploring alternative diets, say like macrobiotics or treatments like Chinese herbal medicine? I can remember an artist friend, Andrew Heard, who started getting herbal prescriptions from a medical centre in Chinatown that we’d boil up in a saucepan in his studio. Or we’d do this for him when he was frailer. Did you encounter anything like this?
Nicola: Oh, all the time, all the time. I mean, you know, alternative medicine was attractive, because it did centre agency more than the sort of existing medical traditional nursing and medical models did. But I mean, I remember guys sharing stories about medical trials involving Chinese cucumber root.
And there was literally this mass exodus to Chinatown, you know, to get hold of it. Other things, egg yolks, there was deep frustration with how slow pharmaceutical companies were moving and men begging to participate in trials. And even after you’d explained the strict criterion that they wouldn’t qualify, it was the bitter disappointment and the frustration and the fear left them really vulnerable to charlatans.
And I mean, there was one guy who was, I think he was selling a cure based on an industrial solvent in South Africa. There was bizarre claims around cranberry juice, high dose vitamin C, which is just appalling. Yeah.
And that causes diarrhoea, which is the last thing you need. You know, the Atkins diet, if you’ve got reduced kidney function, bad idea. Gyms were, you know, popular places for the swapping of information and all sorts of fads and exercise regimes.
And yeah, it was really, it was really, really hard to kind of negotiate that because you don’t want to destroy people’s hope. But you also have to help people understand that they might be being preyed on but we had to listen to them.
We had to listen to somebody saying, I found this out because actually, as we were talking about earlier, the evidence base was small. And one of the ways that we grew it was by sharing information. And the guys were at the heart of that. You know, they had to be
Dan: Tell me about how familiar foods, say, home cooked foods or even junk foods, played into caregiving for people living with HIV and AIDS. I imagine they would have provided comfort beyond a notional nutritional value.
Nicola: Absolutely. Palliative care isn’t just about quality of life. It’s also about the value we place on life itself, on what patients place- the value they place on life and understanding what they value is really essential, even if it’s something we don’t see or value the same way.
And I think this very much applies to what we see a lot in the food media, criticism of patients being given fast food or processed food in hospitals. These kind of meals, if that’s what you’re used to and that’s what feels like a treat and it’s something you default to when you don’t know what else you want to eat, they’re emotional bridges and they connect you with the life that you have beyond your illness. And they’re also a way of relating to normal life as well.
I mean, you know, a 3am kebab, or McDonald’s, these are young people and that’s how many of them ate, they came out of the club at 3, 4, 5, 6, 7, 8am and they wanted a fry up or a McDonald’s, an egg muffin. And this was normal. You don’t want every meal in front of you to remind you that you’re ill, that you’re dying, that you’re going to die.
You really don’t. You just want to be normal. And I don’t have a lot of truck with the sort of, you know, the argument that every food, every meal you eat in hospital has to be this nutritionally perfect, you know, farm to fork meal.
Yes, that should be available. Hospital food is absolutely terrible in this country. I’m not denying that.
But there is a difference, there’s a cultural difference between the food we want to eat and the food we’re told we should eat a lot of the time. And when a patient is really sick and the commentary, especially in the food media about what ill people should be fed, misses the critical point that in a crisis, you have to get calories into a patient. And if they can’t eat, or they won’t eat, or they will only eat familiar fast food, that’s what you give them.
And then you deal with any malnutrition or deficit later. The most important point is to get them eating because appetite stimulates appetite- eating something successfully and keeping it down because you’re accustomed to it. That breeds more success in that field.
You know, and I think the debate ignores that point. The heart wants what it wants, especially when you’re ill.
Dan: And I imagine if families were bringing in home cooked meals to the hospital, that might even boost the patient’s morale or health.
Nicola: Yes, yes. You know, it’s, it’s a sign that somebody’s thought about you. It’s food in a form that you recognise, that requires no sort of extra emotional effort to eat.
You haven’t got to think about, oh, is this going to upset my stomach? You know, am I going to find this painful to eat? Will my friends like to share it?
You know, is it recognisable? I mean, I had one guy, you know, and relatives would, they would come in sort of bearing food as talisman, you know, and I remember one guy saying that if Irish stew was so healing, why was Northern Ireland still in a mess?
And I mean, we’d just laugh around. Well, every time I think about it, I laugh because he was so sick of Irish stew. And he said, I didn’t even eat it that much when I was young, you know, but it became this, this is what his mother could do for him.
Dan: Oh my. That, that hits me. Got me crying there.
Nicola: I know, Dan. I know. I know.
Dan: Don’t ask, stop. Deep breaths. I guess that’s it. You know, we can do, we want to do what we can do, what we’re, what we have the power to do. And sometimes cooking, you know, I know when I was with my father, with my mother, that, you know, when I’d go and visit my mother in Australia, she’ll want to cook me the food that she remembers me enjoying when I was young. And I can imagine this must have happened a hundredfold for the mothers looking after their sons.
Nicola: Absolutely. Absolutely. And, and, oh God, I’m going to take a deep breath.
So many, so many of my guys were rejected by their families. And so you were really frightened of doing anything to discourage the families that were involved. It’s why, in a care setting, we have to really, really assess a patient, anybody in your care, how do they like to eat? Would they like the family to take on more of a role? How do they eat at home? What helps them enjoy meals? What food related rituals and spiritual things are important to them?
You know, food is, is personal and we do have to fight against systems that reduce people to categories. And bringing in home cooked food, you know, I’m a white woman, that is my background and, and bringing food to hospital is not in my culture.
It’s, it’s, it’s really not. But whenever I witnessed it, I’ve been part of it. I’ve stood back from how, you know, sort of appropriate this food is, you know, if from, from a kind of a nursing point of view, from a, from a cold kind of medicalised point of view, I’ve had to stand back from that.
And it is, it is a balancing act. You’ve got comfort versus practicalities and, and, you know, smells can cause distress. You know, I’ve said before, we had an open door policy in many of the units.
So food would come in and out and, you know, a lot of people felt quite nauseated and unwell. So we had to balance that. You know, and I’m going to make you cry again, but there’s one really poignant memory on the subject of bringing in home cooked food.
Sometimes it would be rejected. And, you know, for all the reasons that I’ve said, discomfort, lack of appetite, they simply don’t like that food anymore. And I can remember comforting one mum, because, you know, her son didn’t want the meal that she’d brought in and, and it sort of triggered memories of when, when he’d reject her food as a baby, which is normal.
We all do that. And then I started thinking about my daughter, who was very particular and she rejected, I don’t know, 70% of what I cooked and it was just the most awful feeling. So we were both kind of wailing together over that.
But yeah, it was, it was devastating for her. It really was. And we came up with other solutions.
You know, we, we found things that she could feed him with but I won’t forget that because it brought about all of these sort of personal memories of having, you know, my heart, my expressions of love through food sort of rejected. And it brought those feelings back for her as well.
Dan: That must have been so complicated for you, Nicola.
Nicola: Yeah. I think, you know, far more complicated for the guys and the people that loved them. But yeah, it was, it was really hard. It was really hard. I had to stand back a lot. You can’t fight people’s battles for them.
You have to, another thing was, you know, if arguments happened, if you’re going to try and preserve a homely, as normal as possible environment, now you can’t go in firefighting if people are having a normal family argument over, you know, over food, for example. So, you know, it’s very complicated.
Dan: Yes. And I guess it’s all about something beyond nourishment going into, I know you don’t like this phrase, the notion that offering food is love.
Nicola: Yes. You know, as I said, nourishment is a really complex, rich concept. It goes beyond cold clinical nutritional protocols.
And it’s universal because one way or another, we all eat, don’t we? Even if we’re tube fed, we can still make that a sensual- a multi-sensory experience. So, yeah, I cringe a bit at the phrase food is love because, you know, love can be messy and unpredictable.
Some people find it challenging, alienating or reject it completely. But if you accept feeding yourself and others as all of those things, then yeah, I’m happy to take that.
Dan: Oh, that’s a lovely thought to end on. Thank you, Nicola. Thank you David.
