We spoke to Ian Dixon, engineering manager for the Addenbrooke’s Treatment Centre (ATC), working for estates and facilities. He told us his story as part of Disability History Month 2022.
Hi Ian! Tell us about your CUH journey…
I’m an electrician by trade, I did that for 30-40 years. I came to CUH in November 2017, originally working as an assistant hospital engineer on the operations side of things in estates.
There was a possibility of moving up to the engineering side, which is more techy, so I moved over in 2019.
What does a ‘normal’ day look like in your role?
I plan my day as best as I can. So normally I go down and visit the ATC, which is the place I look after, to see if there’s any issues down there - first thing in the morning and in the afternoon.
I speak to the end users, the university down there, that sort of thing.
What’s your favourite part about your role?
No two days the same, ever. You come in, you plan your days. You can never really say it’s going to be this kind of day, or that kind of day - It’s always different, which is good because it keeps you on your toes.
Tell us a bit about your experience with your disability or long-term health condition…
I was diagnosed with long covid in December 2021. I didn’t know what long covid was, so did a bit of research but until I had my meeting I didn't understand what the background to it was.
I didn't realise how many different symptoms there were with long covid.
My main symptoms are fatigue, breathlessness, brain fog, muscle and joint pain.
So what I try and do in my day now is I plan, pace and prioritise - to try and keep my energy levels up. My energy levels are about 50% of what they used to be. I get tired, quite easily, so I’ve got to make sure I’ve got something left at the end of the day.
The pacing bit is what I found really difficult at the beginning. So I’ll plan my day, I'll go down to the ATC twice a day usually - but some days my legs just won’t let me go down there because I’m in that much pain. The pain affects the fatigue, the fatigue affects the brain fog - it's a bit like dominoes tumbling, but I've had some really good support from the Trust and my clinician.
Long covid is a bit of a new thing that seemed to hit a lot of people. About 2.3 million people are suffering from long covid and no two people are alike.
You can’t pigeonhole one person and say ‘this is going to fix you' because what works for one person may not work for another.
Can you tell us a bit about how you’re working to support your colleagues with long covid?
I initially went to the CUH staff Facebook page and someone mentioned about the Purple Network, so I had a delve in to see what it was and saw it was concerning hidden disabilities and long-term health conditions.
A lot of people with long covid wouldn’t consider themselves to have a disability, possibly due to the stigma around it, but in the UK you can be considered disabled under the Equality Act if you have a ‘physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities.’
So I set up a closed staff Facebook group with help from the communications team, but we weren’t capturing enough people. We then approached the Purple Network and I was invited to a network meeting to discuss long covid and became their long covid champion for the Trust.
I have also started a long covid staff support network for those who are not on social media, to access peer support and signposting. We're looking at trying to get people to have that first conversation who maybe can't get into the system.
Those who have been told ‘it’s all in your head’, getting them to understand they’re not alone.
When you first have long covid, you think you’re the only person who has got it, but when I learnt there are other people who have it and they all have different issues or symptoms to me.
With a hospital this size, I thought, there must be a lot of people experiencing symptoms of long covid, it's just a matter of getting more people involved and raising awareness of the support available.
Do you have any advice for someone experiencing a long-term health condition or disability at our hospitals?
Speak to your line manager, or a peer you trust. I’ve had two line managers since I was diagnosed, but from day one, I had a chat with them and said: ‘this is what I’ve got’.
I was given a rehabilitation booklet, so we sat down and discussed it. With my new manager, I’ve filled in my Purple Passport - so I’ve added some more details and we’re going to discuss that.
Quite a few people that I work with do know as well. I explained during meetings that on days where I’m really fatigued, I can start a sentence and not know where I’m going!
It can be embarrassing, but I just made light of it - and that’s all you can do really.