Director of Alternative Health Services CIC 30 June 2022

Alternative Care Services is a LGBTQI+ adult care provider. They allow everyone they serve to be supported without the fear of judgment, transphobia, biphobia, discrimination, homophobia or stigma.

Notes from the interview:

Ray Johannsen-Chapman (RJC) discussion with Ramses Underhill-Smith (RUS) views on community based palliative care in relation to LGBTQI+ people. Following on from an outline about the engagement review, Ramses was asked to introduce himself and his organisation.

RUS: So I am Ramses Underhill-Smith, and my organisation is Alternative Care Services. We are CIC called ACS Plus and we do domiciliary care, which includes end of life care and we do supportive housing. Although we support everyone, we have a special focus on the LGBTQI+ communities.

RJC: How are individuals referred to your service?

RUS: Well, we are in Lambeth, what will happen is that you will get an individual who is from the LGB community and will ask for our service. This generally happens because they might receive care from people who are against their lifestyle and so they will come and find me on the Internet.

And then they' go back to their funders and say I want use this service. Generally, the local authority will say no we have a service who can provide you with care, and then they will say but can they offer me LGTBQ specific care?  The providers will come back and say no and then and then they're able to use us.

RJC: Is that how it works? So, could some of our service users, be referred to service, by going through their commissioning body or local authority and asking the same questions.

RUS: Yes, often it is through direct payments.

RJC; OK. So in terms of the name of your organization, alternative care services, what makes it alternative?

RUS: Because we offer specifically focused services. The alternative is that you can have a transgender carer who you know, you can have a gay carer. So we have, so we have in our support workers a broad range, who properly understand the LGBTQI+ community and we have a lot of people from the LGBTQI+ community working for us and that's why they come because they feel safe being able come to work.

A lot of people have worked in in organizations where managers in the office of are openly homophobic, or something like that, becomes a joke. And so you hear that and you just don’t reveal, and then obviously it's not a safe space and they start to worry if someone finds out.

And so that's how a lot of our carers come to us. Similar feedback, I've worked here and this is what happened. I don't feel safe. Can I work for you?  We get calls from all over the country, from people wanting to use our service.

RJC: So you wouldn’t provide palliative care?

RUS: We don't provide palliative care per se, but we do provide end of life care. We have people who don't want to go into any kind of establishment Hospice or anything like, they often say, I prefer to pass away with your service.

RJC: Sorry to interrupt you, but what would say someone from an LGBTQ receive from your service that they may not receive from the NHS service?

RUS: Lack of understanding, you don’t know who's going to be there. I remember we had a service user and he's a senior person and lived alone. His partner, passed away, they had lived in the house for over 60 years, and there was a digital camera, conversations with the carer and the health team were being had about the use of the camera. These conversations shouldn’t be taking place but it was down to the fact that they were gay men.

RJC: Someone coming to you for employment. What sort of training would you provide? How do you deliver that training?

RUS: I think it's really important for us to understand, the little things about people's cultures, the nuances, that make people realise. So, you know, if I'm dealing with someone who's Jewish, what do I need to consider. It’s the insider conversations as opposed to just the general things that make people understand better.

A person’s name could have been chosen by the whole family of particular time of the month. But it's something that could be really important to the community, so it's slowly eking out all of those fine details to show people that we know you are not just a Jewish person.

And so before I do anything or say I have to question, I continually ask ‘is this OK’? And then people tell us what they want. So we don't go in with any assumptions, even about someone's name.

RJC: I got stumped the other day, I was talking to a Sikh man about palliative care and he said, well, it's not down to me where I die. It's down to God’.  I'm saying but where would you prefer to end your life’. He replied, ‘that's down to God’, your questions do not come into my thinking’.

RUS: Yeah and his response is perfectly fine. So the question would be, if you got ill, how would you like to be cared for?

RJC:  You make it sound so simple?

RUS: Well it can be. it's just how would you like to be care for if you got seriously ill. He may say, right, if I got seriously ill, what I would like you to do is to care for me.

RJC: So let’s go back to my introduction, why do you think that people from different faiths, cultures and from LGBTQI+Q communities, do not access community based palliative care, or when they do in low numbers?

RUS: When you're passing, that is a difficult enough situation. You might accept it. You may not accept it. But you don't want to be anywhere that's going to cause you more trauma I tell you, just a simple story.

My sister had terminal cancer, she was stage four, in a Hospice and the person of faith, who knew our family, knew me before I transitioned. And I came in to see my sister, they were praying. And when I walked in she said, we need to stop. She started praying for me because she felt that I needed to be prayed for, even though my sister had a few weeks left.

So could you imagine if I was the one that was passing away and she'd come to pray for me? What it would be like? And if you believe in heaven and hell, then I would think, my God. I'm going to hell.

So she stopped the prayers, no one asked her to. She just felt this was her duty as a Christian. From some communities being gay is still frowned upon and all the stigma that goes with that.

So at a time of trauma people want peace, so if you've always experienced negativity from those health and social areas, you're just not going to use them.

RUS: When people hear good stories and that takes time, it changes things. But what they often hear is the screaming and shouting and the labelling.

RJC: Have you experienced negativity as a black trans person when using NHS services?

RUS: You experience any service differently when you are black trans. There is a difference between being black and white trans, particularly around cultural judgements.

RJC: That must be very tiring?

RUS; Completely, because you experience racism from one side and you get homophobia from the other side, just feel like you're in no man's land.

RJC: So what could good positive stories look like that the community believes. As we develop a new service, what should it include?

RUS: Clearly, training that should be ongoing. And I tell why I know it can work in the NHS. I broke my leg some years ago, my ankle in three places in Leeds, I went to Leeds Royal Infirmary. When I went in I said, you know, I'm trans and automatically they knew. And that's the best experience I've ever had.

They y put me in my own room. There were different types of urinals. So not a question of we don’t, or what do we need to be aware of, nothing embarrassing. It's like the choices are there. You can make your choice. But you know, they just treated me in a way, where they didn't assume anything. They asked me how I wanted to be. You know, they just asked all the right questions. And I realized that actually people can be trained well, because they were trained very well.

RJC: I thought you were going to give me a totally negative different response.

RUS: No, it was fantastic and I was in there for three days, everybody was fantastic, they knew how to look after me. It was so well orchestrated and throughout the staff.

So all of the staff are on board and they there was no probing conversations, at least, I didn't overhear anything. There were no raised eyebrows. I just knew they all knew and I just thought, wow, this is amazing. If they can do this in Leeds, I don't know what kind of training they had, but other people can do it. Because I've been to another hospital in NW London and the experience was awful, like, what are doing in this section.

RUS: Training is the main thing. In Leeds, they didn't assume they allowed me to lead. I never forgot that experience and that’s a positive story.

So it's not just a sitting in a training room for half an hour, it is owned from the top down. This is how we're going deal with you and support you. It can be done.

So when you are marginalised you look for little tell-tale signs. You do that first of all, and if you see nothing, you feel that you're safe. And if you hear or see something you avoid that place.

RJC: Karen spoke to me about visibility, as one small step. For example, displaying the Pride colours.

RUS: I saw them in Leeds, volunteers had them on their lanyards. You can wear the colours and the service can still be poor, so visibility and training.

In terms of Pride colours, and this is the small thing, do the colours incorporate the black and brown for black and brown people and the blue, yellow, blue, pink and white for trans people. And now they have a circle for intersects. Small details.

But I think times are changing, we should expect more positive responses. And with continual training, you know conversation should be had, whether in staff meetings because I think that is the way you are change things quicker.

Remember there are some religions which doesn't allow them to believe in the LGBTQI+ community, if privately hold their beliefs, they can’t bring that into the workplace.

RJC: Do you think one of the answers may well could be with organisations like yours are commissioned more often?

RUS: I think that my organization is an option, but I think every service should be able to provide quality care to everyone. Because otherwise what will then happen is, ‘I don't have to deal with it, anything that sounds tricky we send to them. There's things that organisations can learn from us.
Yes, people want our services, but I think that everybody should be able to go anywhere and get good service.

RJC: Could your training be commissioned?

RUS: I am happy to provide training.  But as I said, the younger generation are changing. The reason I think my company works so well is that we aim to embrace every culture.

RJC: Do you have a do you have a multi diverse workforce? If there's a culture that you can't represent, obviously you can’t represent every culture?

RUS: I think that most people who want to use our service, it doesn’t matter necessarily you have to be Nigerian or Irish. What you have to do is come in with the understanding that whatever your culture, or sexuality, you are going to be respected.

So if that means when we come in, we have to take our shoes off, we have to wash our hands. So we take into account cultural aspects within the care plan. If we are unaware, we ask and we do our research.

RJC: You're making it sound so simple?

RUS: It is easier then we fear, you just ask in a respectful way, but you have to be trained to know what respectful sounds like.

RJC: How do work with dementia patients?

RUS: So if we have a transgender person with dementia, and you know, some older trans people may have been around when your identity was against the law. So if they look at themselves in the mirror and they see something that alarms them because they are somewhere else in the past. You have to assure them that they are comfort.

You know, we were supporting an elderly gentleman who had dementia and when he went into hospital, we took his pictures of his husband, we introduced ourselves to the nurses, it helped him have an understanding of where he was.

RJC: Do you receive complaints?

RUS: Generally, we don't. You know, we had a man to care for his elderly mother.  He came sought us out. His mother was very difficult but he didn’t want her to go into a care home. I said to say him why did you choose us? He said, because I knew you would be more compassionate. He looked on the website and found us. And because his mother was very difficult, he considered that because we are the LGBTQI+ company you will be more compassionate. So we cared for his mother until she passed away.

RUS: Overall, people want to do a good job, we're all human beings and in our case it might mean a bit more research and paperwork, but we know we provide an inclusive, caring service. In other words, when we do our care plans, we just ask exactly what do you need?

Sometimes you might ask a question and people get upset and you just explain yourself. Look, I'm not being offensive and say this is why I'm doing it. Then people know that you come from a good place.

If you make a mistake or you all you do is apologise. We are presently supporting a non-binary young person with autism. And so when the social worker came and assessed, they mis-gendered them, no apology because they didn’t think it really mattered and you see, it does matter and that’s where the problem is.

So positive visibility, ongoing training, not just a one off introduction, ask questions, explain why you are asking questions, wanting to get it right. If ongoing training, some of answers you will know, and you know how to ask questions in a non-judgemental way. To log the personal, cultural needs in the care plan, to review the care plan with the user and the loved ones.  That is how you become more caringly inclusive and generate good positive stories, just like in Leeds.

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