In conversation with Tribunal Member Dr Tom Wells MBE
Dr Tom Wells MBE spoke with Employment Judge Tamara Lewis on his experiences as a paraplegic oncologist and tribunal member.
Tom’s main job is as a consultant medical oncologist at a hospital in South West England. He has been sitting as a medical member of the Social Entitlement Chamber since 2009. He sits around 20 days per year in the South West region, including South Wales. Tom has been permanently paralysed from the chest down due to a spinal cord injury in an accident in 1992.
Can you tell us a bit about your disability?
I was in my fourth year doing my medical school training in London at St. Bartholomews Hospital and I went on a skiing holiday to France. They provide these mats for you to go down the slope and the mats were big enough for two or three people. I lay on the left-hand side, a friend lay on the right-hand side of it, and another friend sat on the back. We went down the slope and there was a hut at the bottom which had protection around it; but the protection had been vandalised or damaged in one area and I hit the hut. My friend hit the protection and was just winded. I had several fractured bones, like a collarbone, a few ribs, two punctured lungs, lung contusions, brain contusions, a fractured jaw on both sides, as well as a fractured vertebrae at T6 at the mid thoracic levels, so mid back level. And that led to a spinal cord injury, which meant that I am permanently paralysed from the chest down. I was very lucky to survive.
I did have a temporary impairment as well. When I was in my recovery, they kept me alive in France and I was there for a week. They wired my jaws and a couple of days after the accident, they put the tracheostomy in. I then flew back to Frenchay near Bristol where they plated my jaws. And then gradually over a period of a few days, I found it harder and harder to breathe, until I really felt I was about to die. Luckily they found out where the tracheostomy had come out. It had scarred over, so that windpipe was about two millimetres in aperture when they found out. They put a tracheotomy in below that level, so I could breathe. So I was unable to speak for over half a year. And then I had the operation so I could speak, but I only got rid of the tracheotomy about a year later. I did certainly learn a lot from having that, and being able to compare it with a long term impairment and how different psychologically that is.
What would you say is the psychological impact?
I think it is knowing you will have to learn to live with it. Disability, particularly long-term disability, is physically and mentally tiring and time consuming, because it always takes so much longer to do so many things. It’s financially more costly, and also it is socially more costly.
I used to supervise projects for medical students who had spinal cord injury as one of their choices. And one of the students came up with a really good way of describing the adaptation to a long-term disability, how you have to adapt, and then accept the problem – it’s a really long process, whether it be a grief process, or whatever one wants to call it. I hate that phrase ‘come to terms with’, because actually, it’s a continual adaptation and acceptance.
How do you cope with your disability?
I can move my arms; I’m paralysed from the chest down. So, I don’t have any abdominal muscle controls. I can manage to self-propel a wheelchair, I can get in and out of the car, lifting myself over with my arms. And I then have a wheelchair where I have to take the wheels off and then lift a frame across me. So I’m able to get around independently from that perspective. I don’t have to rely on somebody else for me to go from A to B, which means that I have more autonomy than otherwise.
And you do have to look after your shoulders, stretching and getting your arms in the positions. I used to go swimming quite a lot. Although it would literally be as much exercise changing – what would normally take someone five minutes, would take me 30 minutes to do.
How do you find travelling with a disability?
I think flying is massively disabling. You get put in a particular place and have to wait there for ages to be called. Then when you get to the aircraft, you have to get onto an aisle chair. And then you have to say bye to your wheelchair, hoping it will be there when you get to the destination and not be damaged. That’s a stress that other people wouldn’t have to worry about.
For trains, if you go first class, it’s nice and roomy, a bit more expensive. But often in first class, they didn’t used to have accessible toilets. So you are having to do these things that otherwise people wouldn’t even have to think about. So that goes back to tiring, time consuming and costly.
Are there other examples of effects which others might not realise?
It is also another factor, when you’re talking with people, and you’re in a group, your ears are that much lower than everyone else. So you actually don’t even hear half of the conversation, which means you miss out on social factors.
If people are standing up, and there’s more than two or three in the group – unless there’s a table – it’s unusual for them to be sitting down. Unless they all crouch down to your level, you’ll miss out on a conversation. You’ll just have to try and listen and pick up the odd thing occasionally.
Do you find that people have assumptions that you can’t do certain things that actually you can, even if it might be with effort?
People can come along and try and push you in a wheelchair, but you have to say, ‘No, I can manage’.
I think if they’ve asked, ‘Oh do you need a hand?’, that’s fine. But if they just start pushing you, you have to say, ‘Oi, get off here. You know, I can do this’.
I don’t think there’s any intent in it, and that’s part of the acceptance and understanding when you’ve been in a wheelchair for a while’. So you don’t get annoyed about it afterwards. You’ve only got a certain amount of energy to live with your condition, so – it’s easy to say – but actually you have to choose how to use it.
You have published an article called, ‘Unwise words – ‘Now that wasn’t very clever’. A patient had asked you how you became disabled and when you explained the accident, the patient said, ‘Now that wasn’t very clever’.
I was sort of taken a bit aback by that. And it was just the fact that actually, I’ve mentioned disability – not only being physically tiring, time consuming and financially costly – but it’s also mentally demanding with unwanted comments. They’re rarely maliciously intended.
You said earlier that disability is dynamic. What did you mean by that?
I mean, you start to adapt to an impairment in terms of something, or a loss of function. You might get physically stronger, or you might learn new ways to do things. As you get older, it is harder to manage. And it’s knowing you’ll lose body mass and muscle as you get older, so you have to work hard to maintain that. Is a challenge to keep doing the things that you used to do.
Has your own experience of disability been helpful in your NHS work as an oncology consultant?
I’m probably more aware than I would have been before my accident about patient experience and communicating with people. For example, trying to use words which are unambiguous; trying to engage the patient and let the patient have more of a say in what they do. Not that Oncologists don’t do that. So from that perspective, I do. There are some aspects of the patient experience that I understand. But I don’t know what it’s like to have cancer, or living with the thought that it could return after treatment and having that psychological challenge going forward. So I’m very conscious of what I say. I’d never say, ‘I know how it feels’, because I don’t.
When you sit as a medical member in the Social Entitlement Chamber, what do you feel you are able to bring to cases from your own experience of disability?
Often, there may well be a person with another impairment on the panel. And I think it’s learning from them as well and their perspective. When you’re disabled, you don’t know everything about disability – you just know about your situation. You probably have more of an interest in disability issues than other people may, or than you would have done otherwise. But it doesn’t make you the font of all knowledge or ensure that you’ll say always the right thing.
If you have somebody present who is using a wheelchair, what kind of adjustments would you recommend to enable them to participate comfortably in the tribunal process?
There is saying to them, ‘Are you more comfortable staying in your wheelchair, or would it be more comfortable in a chair? And what sort of chair? And how easy is it for you to get from the wheelchair into the other chair?’.
I would recommend toilet breaks if they needed them, and knowledge on where there is an accessible loo. Obviously that could be something that’s covered by a clerk but it’s not always pointed out. I think it’s just mainly open questions really, saying to people, ‘Are you comfortable? Is there anything that you need?’ Other than that, one doesn’t want to get too specific usually so people are aware of these things, which would take the stress out of it.
Are there any final thoughts you would like to leave us with?
When I had the tracheal narrowing, I can remember finding it harder and harder to breathe. I thought ‘I’m about to die’. And I can remember a voice saying to me – and I don’t know where the voice came from, whether it’s internal or whatever – ‘Do you want to go now or do you want to carry on?’ And I do remember saying ‘No, there are still things I want to do, even though I know it’s going to be a struggle’. After that, moving forward made me think, ‘I’m just here for opportunities that come my way. So rather than getting beaten down by having a challenging long term impairment, actually, I’m glad to be alive. That’s led to me having that attitude of thinking, ‘Okay, I’m just here to make the most of my life, whatever is left. And for however long.’ Because on two occasions, I probably could have not been alive. So the fact that I’m alive and have opportunities, even though I have significant challenges is the hub of what I do, and how I am.