Can you explain a bit about what your organisation offers?
We offer people who have been off work, due to ill health, the support to get back to work again. Return to work is really important as part of the recovery process.
We help people with all sorts of different chronic illnesses (but cancer particularly) to help them get back on the road to recovery and get back to the world they want to be in. So if it’s work, then we will help them with that.
So if it’s not work, do you help people to get back to daily activities?
Yes, definitely. I think it’s sometimes useful to broaden the word ‘work’ out to ‘occupation’.
It’s useful to think about any sort of occupation the individual might want to engage with: be it hobbies, housework, voluntary work, part-time or full time work…
Or sometimes, this can even mean changing what the individual was doing prior to their illness; it’s an opportunity for a life change. People often see it as a chance to think about who they want to be, and what they want to do. Our company is work-focused, as we do believe that enabling people to get back to work is good for their physical health, their mental health, and it’s good for a sense of normality.
Work also offers people a social support network; the opportunity to interact with colleagues. Work really is so much more than being paid.
So your organisation offers a dialogue to help people better understand how they might get themselves back to work?
Yes; and there aren’t many services out there to enable people to have this dialogue about work. There’s lots of research suggesting that it’s something people want and need, but there aren’t many services.
People need help to understand what the actual process might be. ‘What do I actually physically do day to day?’ ‘What is a phased return?’ ‘What does it mean to have reasonable adjustments to my role?’ ‘What is the Equality Act?’ These things aren’t covered generally, which is why we exist!
What practical support do you offer people through coaching?
We offer them the opportunity to talk through things that are of concern to them. Essentially, we help people to identify what their main concerns are, and sometimes that can take some teasing out. Then we help people to problem-solve; to think through all their options, from the sublime to the ridiculous, and then choose where to start. We’re asking people to think about their valued goals and helping them work towards them.
What was your motivation to start up this company? For getting involved in this work?
We’ve been working for a really long time in the persistent pain field, and in mental health, and we’ve spent many years helping people who experience a lot of different symptoms to functionally rehabilitate; how to get strong again, living with their symptoms and getting back to work.
In 2012, we set up Working Towards Wellbeing, as there was a real gap for people surviving cancer who wanted to return to work but no services were available. We were able to pull together all of our experience and design a service that would meet this group of people’s needs.
Since then, we have had very positive feedback from people we have helped, saying things like 'the service has been a life-line.'
What advice do you give employers to support people with chronic health conditions?
Firstly, we encourage communication. So you’re asking, ‘What sort of communication does the employee want to have with their employer?’
I think there are a lot of misperceptions around that. I think that people can sometimes feel quite isolated and left and they find themselves thinking, ‘My employer hasn’t called me in months.’ We hear stories of people working for companies for 15 years and saying, ‘I’ve not heard from my employer; don’t they care? What’s going on?’
But from the employer’s side of the fence, they might be thinking, ‘This person is very sick, we need to let them focus on their appointments, treatment and recovery. They don’t want hear from work and we don’t want to be seen to be interfering.’
So there can be a mismatch of perception. And if we can get people to actually talk it’s good!
Employers can say, ‘How much would you like to be contacted?’ And people can say, ‘I’d actually really like it if you call me once a month,’ or ‘I’d really like to be emailed the minutes from the monthly meetings, that way I can keep my hand in.’ Or ‘I’d like to come to the work Christmas do if that’s OK, as it would be good to see my colleagues.’
It’s really important, when people are diagnosed, not to brush work under the carpet but to talk about it. They can still keep in touch.
We talk to employers about phased return to work, and help them to understand that there is rarely a standard with chronic illnesses. They could be looking at months or sometimes years; and that’s not due to unwillingness from the individual, it’s because they are managing and coping with some very difficult side effects and symptoms.
Employers need to mindful of things like fatigue, pain, neuropathy, nausea, concentration issues – that their employee might be living with. We help employers to think that through, work out how it’s going to impact their job capability, and what adjustments have to be made in order for them to transition back into the workplace.
We encourage employers to enable a flexible approach. We can plan the most amazing return-to-work programme for someone, but when it comes to it, all sorts of adjustments might have to be made in reality.
We also focus on the philosophy of a sustained return to work. There is nothing worse than going in all guns blazing, planning to go back full-time, and finding it too hard and having to go off work again.
That can have all sorts of ramifications for their confidence.
I would imagine confidence plays an important part for people. Do you find that with coaching?
Definitely. In terms of confidence, there are really close similarities to that of people returning to work after maternity leave. You’ve been out of work for sometimes over a year, and coming back is really daunting.
It can also be like starting a new job; sometimes in the time people have been away from work, the company has rebranded or moved offices, or they’ve been given a new line manager. People lack confidence about whether they will remember their IT skills or the minutiae of their role.
Confidence is a big issue. We often suggest that people go into work just to have a cup of tea with their colleagues, to physically put their foot in the door, to acclimatise again. Organisations do move along at a pace, a year is a long time, and so this keeps a connection going.
What other factors might affect their confidence in their return?
Their physical capability. People wonder, ‘Am I going to have the strength to do this?’
‘What if’also comes up quite a lot. ‘What if I fall asleep, because I am really tired?’ ‘What if I have a really important meeting and my concentration goes and I can’t get my words out?’ ‘What if I can’t think as quickly as I used to have to?’
These are big issues to cope with, which is why we do a lot of signposting to help people build their physical strength, too; directing people to programmes that can get them moving again and help with their fatigue. There’s lots of research around the benefits of exercise for fatigue and mental health, so it’s not to be underestimated.
Can you tell me a bit about the work you’re going to be doing with Anthony Nolan?
At the moment we are working with Anthony Nolan on a pilot project, to help people who are post transplant to get back to work. We are going to be having an initial hour-long conversation with people who are referred to us: to help understand their current situation, their symptoms, and what their return-to-work hopes are. Really focusing on what’s important to them in terms of where they want to go next and thinking about some goals they want to achieve.
Then, we will have up to four sessions with them to help them achieve their goals, to plan their return to work, and address concerns. These support sessions would also cover enabling dialogue with their employer, if that’s what they are ready for.
If you are a transplant recipient and you think you might benefit from these services, please contact the Patient team on email@example.com so that we can assess your eligibility.