Interview with Spectra CEO 21 June 2022

Specialist community-based palliative care interview with Karen Skipper CEO of Spectra CIC

Spectra offers a range of services to marginalised groups, including trans, non-binary and gender diverse people.

Notes from the interview

Ray Johannsen-Chapman (RJC) discussion with Karen Skipper (KS) about her views on community based palliative care in relation to LGBTQ+ people.

RJC: The evidence tells us that there are low numbers of patients refer to community based palliative care from LGBTQ+ communities. Why do you think that is the case?

KS: I think the obvious one is that they don't want to out themselves or be outed later in life. LGBTQI+ people may not feel comfortable with healthcare professionals, worrying that they are judged based on their sexuality or gender and don't necessarily feel that they will get a non-biased service. Particularly when you are vulnerable and at the mercy of other people's care.  And with palliative care stage, they may choose not therefore to access that but instead to rely on friends or family.

If LGBTQI+ people are ‘out’ and have been ‘out’ a long time and are confident with that, they still might not be confident that they will get a service that is respectful of their sexuality or gender identity.

RJC: Really good points you make. I remember and I digress slightly, I worked for a mental health trust in South London.  Following an inpatient experience survey, we found that satisfaction was fairly consistent across most cultures, apart from LGBTQ service users, they considered that they consistently judged and bullied because of their sexuality.

KS: Yeah. And when you consider we're living in transphobic Britain at the moment. There is so much hostility, particularly on people with different gender identities. I think there is a very real and genuine concern about respect and sensitivity - being placed in the correct ward, or in a room or in an area, that is not compatible with their gender. All of this stuff, that their trans status or sexuality might be disclosed, even though that would go against the Equalities Act. This this happens all the time.

RJC: Obviously my next question, is how should we take these issues into account? In other words, what would make LGBTQ people feel more comfortable to access the service?

KS: One of the main things we know, is that LGBTQI+ people would prefer to see people who are like themselves. So that you have staff who are from those communities. Visibility and identity, is so important if, possible. There needs to be a welcoming environment, so having small things like, a sign up saying ‘everybody is welcome here’ or and having the LGBTQ colours visible. That sort of visible sign saying that all are welcomed.  But, I think the key is there's got to be genuine understanding by staff and service managers to underpin that, because if someone is brave enough to access the services and then gets a service that is discriminatory in some way, or they feel has prejudices, that is down to the organisational policy of staff training. The staff have to be confident and competent with gender identity and sexuality.

And what often happens is that when there isn't enough training or there's partial training, then staff are emboldened to start asking questions about people. For example, ‘so what does that mean that you are?’ or ‘what about this? And what about that?’ Nobody should have to answer questions about their sexuality or religion or disability or identity or, you know, anything actually, unless they want to. And particularly trans people. It’s totally inappropriate, crossing a line that shouldn't be crossed.

RJC: So obviously when I've spoken to people of different faiths and cultures, they would say similar things that they would want to see staff that resemble them.  There are so many different cultures within NW London, in all likelihood you're not going to be able to cover, which is not to say you don’t try to recruit. But it probably takes us to training. How would we ensure a better training and who would deliver that training?  We have organisation LGBTQ and BAME networks, but would it be appropriate for them to be part of training delivery?

KS: We at Spectra, just had training, for example, organisation wide around neurodiversity because we have lots of staff and service users who are Neuro-diverse and we commissioned an organisation called NeuroTribe UK a group with lived experience of neurodiversity, and, the training was great, it worked so much better coming from external source.

We paid for them to deliver the training for us, even though we have lots of Neuro-diverse staff and we have lots of trainers that could have probably delivered it internally. But we are respectful of that. Wwouldn't actually ask our Trans staff to deliver the training. We wouldn’t just say ‘you're employed to deliver counselling, but we want you to do this training for staff on a separate matter’.  When you are from a minoritised community you are frequently asked to deliver things that are actually not within your scope or job description, and it just gets exhausting.

Transpeople are being questioned every day about their very validity, their right to exist. So what we don't want is to add to that, when that is your lived reality, there is no escape, so you don’t want to have to keep dealing with it at work. And you don’t want to deal with it when accessing health services.

RJC: And if we were able respond to the main areas of inclusivity that you have nicely outlined, would that be seen to have a positive effect with LGBTQ people?

KS: Well, I think it's not necessarily seen to be doing it, although that is also important. I think it's the actual service that serves patients and service users will receive, as a result of having done that training. I understand that some jobs have a transient workforce and that can mean quite frequent training. So, obviously there's a logistic issue there about the frequency of the training. But it definitely needs to be part of the induction process. It's the promotion of it. This is what we embrace.

It will take time and I think it depends, you know, on the culture of the organization as well.  It should be in job descriptions. Spectra have a clause, which is, ‘Able unequivocally to respect, support, promote and work within LGBTQ+ and other diverse communities’. Then, you know, that means something.

So it starts with the recruitment, where anyone is applying for a job, they have signed up to non-judgemental inclusion. And then as part of our induction, there is an awareness raising.

But there's always that balance, isn't there? Between, we need to do this versus have we got the time, the scope and the resources to commit?

RJC: I think that is the perfect place to end the interview and thank you for your time and fantastic insight.

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