Beyond Assumptions: The Power of Asking the Right Questions in Healthcare

This week’s guest is Ellen Edenbrow, Co- founder of Inclusive Health. I’ve invited Ellen to talk with me about equality within the healthcare profession and the power of encouraging communication by asking questions.

I’m looking forward to this conversation because I have worked in healthcare technology. I worked for an American healthcare IT company, implementing software in hospitals. As well as professional interactions within healthcare, I also have my own personal lived experience from being a patient born with a rare neuromuscular disability. I’ve interacted with lots of doctors, nurses and healthcare professionals which has given me firsthand experience along the way. So I think it’s going to be an interesting conversation today with Ellen about equality within healthcare.

To get the dialogue started, I asked Ellen to tell us a little bit more about themselves and Inclusive Health.

‘Inclusive Health is my new baby. We only launched on the 31st of January so are relatively new. However, I’ve been doing inclusion and diversity work for around nine years now. I started doing inclusion work when it didn’t really exist as a career and there were only a handful of jobs. I remember trying to apply for a role up in Leeds pre-COVID, and there were only two jobs in the whole of Yorkshire for me to apply to. Now, there’s a wealth of them. Maybe budgets have changed this year, but I feel fortunate that I’ve landed in this career during the early stages of its development.

I’ve done a variety of in-house inclusion roles: every sector, charity, public, private. Then, I became a consultant within another company and spoke to different charities, global tech, recruitment firms, you name it. My work has varied globally all around the world. I noticed gaps in my journey when introducing specific sectors to I&D training. One of those was medicine and healthcare professionals.

I stupidly married a doctor. We started dating just before she graduated and I thought, “That’s it. Quids in, I can stay at home and put my feet up.” However, it’s a very different story for junior doctors. I was fooled into it, but you can imagine the things I’ve heard. When you’re married to someone who’s unbelievably passionate about people and holistic healthcare, you hear some absolute horror stories of exclusionary things that get said in the staff room.

For example, patient bedside interactions where you make assumptions about them which leads to exclusion and leaves them in a vulnerable position. Health is vulnerable. You are putting your health and your life in someone’s hands and hoping they’re going to do a good job with it. As a result, you can feel out of your depth by asking them certain questions.

We wanted to create inclusion and diversity training that was bespoke for healthcare professionals. This is where Anna, the other half of Inclusive Health, comes in. She understands the profession, barriers, the jargon, and the acronyms which go over my head.

Remember that the NHS is the biggest employer in the country. There’s lots of staff behind the scenes that are not healthcare professionals but are in the healthcare setting and give them bespoke training. The resources currently available often leave them thinking, “Okay, here’s this theory, here’s this thinking and here’s this model, but how do I actually translate this into my job?”

We hope that with both of our brains and experience together, we can give them real, tangible learning that they can relate tomorrow or can relate in a week in the surgery room. They can apply it into their space, or that bedside conversation with a patient’s family to include them and remove that vulnerability. That’s our aim six months into Inclusive Health so far.’

My next question for Ellen was, ‘Can you elaborate on why you are specialising in inclusion within healthcare?’

Ellen said there are a few reasons, ‘Starting off with personal experience, I’ve realised we only have two things in life: time and health. Health can be a lottery which is why there’s a vulnerability to it. Anna and I are also patients. Anna has some invisible disabilities; she has cluster headaches which are rarely known. They are nicknamed suicide headaches because of the pain that comes with them. Unfortunately, those that experience them often do take that path because of the agonising pain. There’s so little research behind them.

The NHS have announced that they are one of the most painful conditions to experience, but they are hardly known about. The condition is common in white, middle-aged men and smokers. Anna’s the opposite of all those experiences. Healthcare professionals aren’t sympathetic and understanding to Anna. What chance have we got when we can’t advocate for ourselves?

At the start of the year, I lost my Aunty who had a learning disability, from a young age. People with a learning disability die 20 years younger than the average population. She died in her 60s. It’s going through an inquest because she absolutely died as a result of ableism. She had gone to maybe six hospitals in two weeks. The paramedics didn’t want to take her. Her oxygen levels were at 60%, which is dangerously low. We arrived at the hospital around Boxing Day, and she was screaming in pain. It was 2:00 PM, she still hadn’t been seen.

It was a traumatising experience. I don’t know what would’ve happened if it wasn’t for Anna. She had to take on the responsibility of managing her as a patient because the other doctors weren’t believing in her. She was grunting, she never grunts, but they assumed because of her learning disability, that was who and how she was. They didn’t pick up the phone and ring family, or the care home who’ve known her for 40 years and say, “How is Gail? Can Gail ask for lunch? Can Gail feed herself?”

Usually, she can feed herself, but she couldn’t there and then, so they just assumed that’s how and what she was because she couldn’t advocate for herself. It was complete ableism that she lost her life the way she did. We were very fortunate that with Anna’s help, we got her the right care, so she died with dignity and peace. There was no additional training in terms of the medicalisation of the experiences my Aunty was having. There just needed to be some humanity, empathy, care and consideration.

We’re finding Inclusive Health is getting people to ask the right question with empathy and care and not assuming. People frequently are missing information about others because they don’t ask. It means that they’re missing whole chunks of their identity and something that could be important to their health because they made those assumptions.

As a non-binary person, I’m scared to go to the doctors. I’m married to a doctor who’s a trainee GP, but I’m scared to go to my own GP. I’m someone with knowledge, my only language is English, born and bred, and I’m scared to go to the doctors. I can’t begin to imagine how you’d feel when you have those intersectional identities of vulnerability and language.

57% of trans people avoid going to the doctor when they’re unwell. White patients are far more likely to be referred to talking therapies than people of colour. 30% of trans people don’t go for perinatal care during pregnancy because of fear and worry. We’re putting lives at risk. I’ve always said this with inclusion.

When I’ve worked within finance, university education or even charity sectors, I’ve always said in my job interviews, if I can help one colleague internally feel welcome, included and like they are appreciated, then I’ve done my job. If we upskill one medical professional through Inclusive Healthcare who is able to have an important conversation with a patient, when that patient feels unwell or when they notice a lump or bump, then they think, “Oh, I can go back to them.” That’s a massive positive.

Alternatively, if they feel excluded or looked over and they don’t go for that appointment, who knows what will happen. Their condition may progress, cost even more with treatment and cost more time. It’s then an individual who’s no longer in that community. You’ve then got grief. Inclusion saves lives and it saves money.

I wholeheartedly agree with the power of inclusion. I asked if Ellen was comfortable sharing what worries or scares them about going to see their GP.

‘Everything. I have to come out every day. There are certain identities which are visual, and different boundaries and challenges come with that. I am stereotypically queer appearing. I’m aware of that. There will always be assumptions that I’m a masculine woman and I’m not non-binary. I have to out myself all day, every day. For example, I don’t know if it’s safe to say that I have a wife. Doctors don’t know what non-binary is.

I had surgery to remove my breasts. I paid £9,000 privately. I appreciate my privilege to be able to do that, but it wasn’t easy. It was difficult. I did it because it was going to be 8 to 10 years for that to happen on the NHS. My mental health was terrible. Ever since October the 4th, 2022, the day that I had surgery, my mental health has been nowhere near as low as it was pre-surgery.

I specifically said to the private hospital, “Do not send a letter to my GP saying I’m having the surgery. I don’t want them to know because they won’t understand it. I don’t know what interactions I’ll have in the future.” I want to avoid the assumptions of, “Are you sexually active?” Then the follow up of, “Could you be pregnant?” Why is that the second question? Why aren’t you asking me who with?

Anna’s worked in sexual health and been a GP, so she’s come across many things. She’s highlighted the assumptions made when asking people sexuality questions or not asking the question at all and then making assumptions about what they’ve physically done. It means that they are missing important information about a patient’s health because they’re too scared or embarrassed to ask.

So, my fear is that I’m going to be looked at in a different way and not be taken seriously. Especially since a lot of people assume that if an LGBTQ+ individual is having issues with their mental health, then it’s because they’re LGBTQ+. That can be part of it, but there are additional worries, fears and stress.

It’s the vulnerability of being in that room with someone who might look across the table to you and think that you’re not real. Our government are telling us that we don’t exist. I’m legally not recognised. I can’t die as non-binary. I couldn’t get married as non-binary. I had to get married as a female. A lot of people don’t think I should exist on this planet. What if my doctor doesn’t take me as seriously because of how I identify? What if my doctor doesn’t refer me as quickly because they don’t think I deserve it? That’s the vulnerability that I’m putting myself in.’

I agree with what Ellen is describing. I feel the same way sometimes. However, I’ve never felt like I wasn’t able to come out to my GP or any healthcare professional about being a member of the LGBTQ+ community. I’m quite open about that. I came out later in life, when I was 29. It was after a near death experience where I was in a coma for a couple of months due to pneumonia. When I came out, I had this new euphoria with life. A big part of that was having to be my true self. I needed to stop hiding the fact that I’m a gay man.

I really like what Ellen is saying about assumptions and presumptions, because that’s been my experience as well in healthcare. For example, lots of healthcare professionals assume that because I have a physical disability, I don’t work, I don’t have a profession or run my own business.

When I reflect on my early years, particularly when I was growing up and seeing doctors all the time, I don’t think I was ever asked about my sexual, relationship, or even mental health. All of the focus was on my physical health. Should I, or should I not have spinal surgery? Very little attention was paid to mental health, wellbeing and things like that.

I wanted to know more about how they’ve gone about creating training that is specific for the medical profession.

‘Well, we bought the website a year and a half before we set up the business. We knew that there was a space here and we’ve both got unique brains with lived and professional experience. It’d be a waste to not utilise that. I guess what we can offer in that bespokeness, is the understanding that some other inclusion areas don’t have. With Anna’s medical experience, we understand the professional struggle of working 16 hour shifts and the pressures and the experiences they have due to the spaces they’re in. The things that our junior doctors and medical professionals are seeing and experiencing are worse than the news will ever tell you. It’s the acronyms, it’s the jargon, it’s the bureaucracy. It’s having that nuance behind it all.

We always relate the training back to their space. Sometimes it lands in a way such that we’re bringing it into their world. Sometimes when we surround ourselves in our own little bubbles and have friends that have different challenges and barriers, we can easily forget this stuff is brand new to them. Sometimes you probably even doubt yourself, right. Then you speak to people that know nothing about it and you realise, “Oh, I do know quite a lot.” Sometimes we expect people to listen to this and then translate it into their job and their world, though they might not have the skills or knowledge to lift and shift it. We try and lift and shift it for them, so they get the real benefits there and then, straight away.

There are a multitude of challenges that come from working in healthcare. For example, how do you get people off of wards when they’re already understaffed? These struggles, challenges and barriers create a maze. Even having a doctor at home, I still question where to start and who to speak to.

We’ve spoken to private health, charities, public health, NHS England, individual trusts and each individual hospice. They’re all doing things differently. That’s a little bit scary. Every GP practice is its own business. One GP down the road can work drastically differently to your GP. They all have different policies and different procedures.

We’re Leeds based, so we’re starting locally. We’re bringing that northern charm to our training although we do travel further afield. Patients can get really different experiences from speaking to a variety of different trusts and healthcare professionals, but we think that there should be a consistency. When you up and move location, you should be able to have the same interaction, although I know that’s not the case.

For example, I know a trans individual on Instagram, and they’ve had every letter under the sun written about them getting the right hormones. They used to live in London but recently moved an hour out and their GP is refusing to give them those hormones. Their colleagues have said they should have them as they’ve been on those hormones for years. However, now one person’s saying, “No,” and they have the power and influence to put up a brick wall. That’s alarming and leaves people feeling very vulnerable and unsafe.

The environment created by GPs and in hospitals is drastically different to those created in hospices. Medical professionals love palliative care, end of life care. You wonder, “Why would you like that?” It is such a strange thing, but it’s holistic healthcare. It’s giving people dignity and care and respect over their healthcare. Hospices are beautiful settings. They’re calm. You can get your nails done, you can bring picnics in, llamas come and see patients. They can get married there. It’s clear that they’re treated as the human that they are.’

I thought Ellen’s point about the differing environments was important to emphasise. My partner works in inclusive design, and we’ve had a conversation about how hospitals aren’t designed to make you feel better. Think about the disgusting colours, loud noises, horrible textures, awful lighting, no nice outdoor spaces or greenery. They’re clinical, awful environments but the hospital is the place you’re supposed to go to feel better.

For the last year I’ve had a health problem which meant I had to have a surgery. I was banging my head against a brick wall with the NHS, so I ended up going to see a doctor privately. I went to this private hospital, and it was such a beautiful building. I know the NHS have budget constraints and they have to serve the whole nation, but I couldn’t stop thinking about how the overall atmosphere of the private hospital was so much nicer. It was an environment where you could feel good about yourself and focus on feeling better.

Another example is the process I have to go through in order to get a conversation with my GP. If I want anything done, I have to fill out an online form. You can’t just like ring them up and speak to somebody. So, I fill out my online form and two weeks later I get a response saying, “We’ve received your form, we will call you in a week’s time on a specific day but within this period of time.”

This is a really annoying problem for me because I don’t have the physical strength to pick up the phone and answer it. Unless I can get my carer to get to me in an instant, I won’t be able to answer. The GP called me, it went to voicemail. I tried to call them back, but then I couldn’t get through. They called me again and then sent me an email saying, “We’ve tried calling you twice, we couldn’t get through. We’ve cancelled your request, and you’ll have to fill out the form again.”

To cut a long story short, I ended up having a face-to-face appointment with the doctor. They ended up saying it was pointless filling out the form because they needed to see me in person, and they wouldn’t have been able to do it over the phone anyway. A few weeks later after a conversation with my GP, I said to them, “By the way, I think you need to look at your process because it’s not accessible or inclusive to me as a disabled person.” His response to me was, “Well, that’s just our process. If we change it for you, we’re going to have to change it for everybody else.” They didn’t consider the importance of equity or giving an individual the resources that they need in order to be able to compete on the playing field.

Ellen reiterated my point, adding, ‘Anna was in our GP reception not long ago and someone came in who seemed as though they were going through a lot. You could tell from their physical appearance that they may’ve been struggling. The receptionist and the man kept running in circles, he wanted an appointment, but you had to call to make one. He kept saying he didn’t have a phone, but the receptionist wasn’t listening to him. He didn’t have access to the resources required to make a call or fill out an online form. This creates a massive barrier to healthcare for some people.

Anna waited to complain until after we witnessed the interaction because she didn’t want to make this patient feel even more vulnerable in a public space. He said it was about his mental health and eventually he ended up walking out. Who knows what that individual has now done, the actions they’ve taken and where it could go. All that receptionist had to do was ask them to sit down. Even if it’s a long wait, that person might have waited to see someone as a unique situation and that could’ve been lifesaving. Holisticness is seeing every patient for who they are.

Assumptions are made about different people, different identities and how people think and feel. However, you just have to ask the right questions. Sometimes this means asking difficult questions in healthcare. The patient might feel awkward or slightly embarrassed, but phrasing it as, “I’m sorry, I’ve got to ask this,” can help put the patient at ease.

For example, there’s a cervical screening that some people have to take, and it’s recommended every few years. I didn’t go to my GP this year because I managed to find a specific sexual health charity in Leeds that are LGBTQ+ inclusive. That’s a service that not everyone can access. It was local to me, and I’m aware that not everyone can pay to get there, but it was a good alternative to going to your GP because of the inclusivity they created.

I agreed. I then asked how Ellen thinks Inclusive Health can impact and improve the lives of healthcare professionals.

Ellen said, ‘When I’ve been in-house with inclusion diversity, even if my main focus has been colleague to colleague interactions, I hope people don’t stop their learning there. They need to take it to customers and patients. A lot of the work we do is talking about patient experience, but it’s also translating that messaging. The majority of people that have reached out to us have wanted the patient angle as well as the internal angle, which is encouraging.

We know that we’re losing our healthcare professionals. 20% of new trainees are going to Australia. We’re losing our talent for numerous reasons but that is a whole other 30-minute conversation.

Anna has been in those staff rooms and messes and had a consultant say out loud to a bunch of people who knew Anna was with me and was in a queer relationship, ‘Well, being gay is not normal, is it?’ They’re saying that because they think it’s a safe space and they think they’re not going to get called up on it. Anna was brand new qualified at the time, so felt quite vulnerable with the hierarchy to say anything.

Anna’s very feminine appearing. So, I think a lot of people assume she’s straight. Don’t assume anything. People can look all kind of ways and have all different kinds of lives, and no one needs to say anything. Anna then had to work for four months with a bunch of people that she didn’t feel safe would support or back her up. What’s that doctor going to say in front of a patient who might be at their most vulnerable?

We know psychological safety is vital and if people can’t be themselves it takes a lot of head space away from them. Inclusion makes money and inclusion saves money. Bullying and harassment approximately costs the NHS £2.2 billion every year, but they spend only £40 million on inclusion and diversity annually, which in terms of the NHS is very little. 0.03% of the NHS budget is spent on inclusion. 0.01% of all staff in the NHS work on inclusion.

A quarter of people of colour have considered leaving the NHS because of racism. If our healthcare professionals with lived experience, an understanding of disabilities, race and faith are leaving the NHS, then they’re not there to support us as patients. They’re not there to bring in their diverse ideas, but if they are there, do they feel safe in sharing those ideas? Consider all that time, energy and the resources that go into replacing those staff and all those hidden costs that will have an impact on patients.’

Those statistics Ellen shared are shocking. I think it’s important to consider the effect on people’s lives. I did an interview on this podcast a while ago with somebody called Tracy who was head of HR in an NHS trust. A doctor went to her with a safeguarding concern, and he didn’t feel able to speak up. She supported him in going to the hospital board to raise the concern. They tried to brush their concern under the carpet and made Tracy a scape goat for it.

The doctor ended up taking his own life because he wasn’t taken seriously or supported. The management team ended up blaming him for the particular issue. It’s devastating. That’s the reason why Tracy then left that particular trust and she set up a company with speak up software where healthcare professionals can anonymously report concerns, issues and bad behavior.

The former government rhetoric was that the NHS was spending too much money on wasteful inclusion and diversity work. Employee networks needed to be scrapped. Thankfully, we’ve got a new government. However, the rhetoric that the former government created around inclusion in public services and the public sector was ridiculous.

Ellen added, ‘Health isn’t just something that pops up out of nowhere. Anna meets asylum seekers on £8 a week. She meets people that have gone through horrendous things. Often because of those life experiences, their health is now getting impacted. It becomes a cycle of healthcare, physical health, mental health and they all impact each other.

Not only would investing in inclusion save that £2.2 billion with discrimination, but it would also save lives and save money on treatments that aren’t needed because things are seen sooner. Conditions are nipped in the bud sooner because the right questions are being asked, therefore the right referrals happen at the right time. The NHS and the work they do for us is remarkable, but there are some people that have lost a lot of trust and have a lot of fear and worry when it comes to healthcare. I worry about their health as a result.’

The penultimate question that I ask everybody is, ‘What does inclusive growth mean to you?’

‘It means to not assume. We’re all guilty of it. Me too. Ask yourself, “Why did I think that? Why did I assume that? Can I ask that question instead?” We make assumptions which can feel very degrading to people. We could miss out on important information, which can be lifesaving. With that, growth will happen. There are so many more things that connect us than divide us. Everyone would like to tell you otherwise at the moment with the rhetoric of so many years of it, but I think we’ll grow with that. Talk to people about differences, talk to people about similarities, and ask questions.

With me being non-binary, I’ve met many people who say, “No, I feel like I shouldn’t be able to ask about pronouns” because they’ve never met anyone and they’ve just heard the newspapers say, “If you dare ask someone, they’ll bite your head off.” We won’t. I can tell if you’re being nice to me or not from body language and tone.

Whilst you’re queuing at Costa Coffee, it’s not okay for someone to go and ask you about your experiences. However, if you’ve got a new colleague joining your team, it’s good to ask so you know how you can best work with them. It’s asking in a way of getting to know each other. There are some things you need to know, and there’s some things you don’t.

If you’re curious, use Google. It has a lot of wonderful things and there’s a lot of people like yourselves, like me, that do put things out on LinkedIn and share our stories. Don’t assume. Ask with empathy and ask with care. Often, the other person is happy to chat about it or they’ll say, “I don’t fancy chatting about that today, but here’s a great resource”.’

Ellen’s point reminded me of a great product called the Manual of Me. It’s free to a point, but if you want the bells and whistles, you’ve got to pay for it. It’s online and you create a personal operation manual of you. It’s great for Teams. You can get each team member to fill out the Manual of Me. You can select the questions as well. For example, ‘What’s the best way of communicating with me? What time of the day am I most productive? How do I like to work? Where do I get my best ideas?’ You have all that information in there, as well as I&D related questions. It’s a useful tool.

Ellen said they found this interesting, adding ‘They also have a similar concept in hospice care. People’s position at the end of their life can be very different. Some are no longer verbal, and some are still very aware. It’s a note that says, ‘This is what I like listening to… I like this song in the background. I like this kind of lighting. I like this kind of food. This was me and this is what I did.’

It tells their story. I think that would be great to have in hospitals because it gives humanity. It reminds you that there is a person behind this. Yes, they’re in a difficult position right now, but they’re a working professional with thousands of people who follow them on LinkedIn. That’s who they are, but people are assuming that they aren’t. They’re forgetting there’s a human being behind their illness.

You can find more at inclusivehealth.co.uk. You can also find them on LinkedIn under that name, or you can find Ellen Edenbrow on LinkedIn and all social media platforms where they post a variety of inclusion-based information, but also from health angle as well.