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Posted by Rebecca Ashmore on Monday, September 18, 2017

In Conversation with Barbara Wilson


CK: Barbara, we have met a few times now and talked from both a personal and professional angle about the work that you do and recently you very kindly invited me to attend one of your workshops, which was extremely insightful. So many people are touched by cancer, but there isn’t a huge amount out there in terms of real advice when it comes to the gritty fact that an illness like cancer has a massive impact on the day-to-day lives of people coping with it, on their work and on their ability to move forwards in their lives. Could you tell me about the origins of your organisation and how Working With Cancer (WWC) came to be?

BW: WWC is a social enterprise, which means its main purpose is a social one. Although I charge to cover my costs, making a profit is not the main purpose of WWC; its main purpose is to support people in their successful return to work and to life after cancer. I set it up in 2013 but at that stage then I was operating as a sole trader, but it became a social enterprise in June 2014.I set it up WWC because my own experience of cancer, when I was diagnosed with breast cancer in 2005, showed me that there was very little support available once people had been treated for cancer and were going back to work. There was usually a ‘phased return,’ so for a few weeks you might be able to come in late and leave early, or work flexibly, but there wasn’t any more support than that to help you recover energy and motivation for life, as well as for work.

In 2006 I started a campaign with a charity, Cancerbackup, to provide information to employers and HR professionals about the kind of issues that people recovering from cancer faced and what employers could do to support them. This was then taken up as a campaign by Macmillan (who took over Cancerbackup) and by the Department of Health. For a couple of years I chaired the National Cancer Survivorship initiative which was fundamentally a part of the government’s five year cancer strategy. I chaired a group of about 30 people and we looked at the issue of returning to work after cancer and explored how people were managing financially after a diagnosis of cancer. I did this and then after leaving Caitlin in 2012 I realised there was still a lot more that could be done, so I set up WWC.

CK: And are you, in your knowledge, unique in offering these services?

BW: Pretty much – Macmillan offer training for employers on how they can manage employees returning to work. I helped design their training and I run some of their training for employers for them. But in additional through my own company, WWC, I provide support for cancer patients and run workshops for them. I also provide one-to-one coaching for employees to help them return to work and integrate cancer into their lives so they can move on. This is a unique service and as far as I know nobody else provides it.

CK: Cancer is a topic that affects so many people, whether because they are diagnosed themselves, or are close to someone who is diagnosed. However, it’s not something that is broadly spoken about. This can easily translate into a ‘grey area’ in the workplace between how people would feel on their own behalf if they were personally affected by a serious illness, and their ability to empathise with people they work with. Do you find there is genuine appetite to integrate a discussion surrounding how cancer affects employees, and any associated policies designed to help them, into the workplace?

BW: Well it depends! I think a company’s response is as much to do with their culture as their policies regarding health and well-being.I do recall talking to one company whose Head of Health and Wellbeing said ‘well, we did cancer last year, this year we’re doing mental health…’That was shocking. Health issues cannot be tackled as if they were ‘flavour of the month’. I think one of the problems is that people don’t know what they don’t know. One of the principal issues with cancer is that most employers don’t really understand the real impact of cancer treatment on patients.The employer normally has two or three ways of supporting someone which, as far as they are concerned, are perfectly adequate.One might be an employee assistance programme but of course very few people use them in the way they are meant to be used.

They might have occupational health, and some practitioners are very good, but most won’t have a specific knowledge of cancer, which my associates and I have, and they don’t provide the length and depth of support that we do.

The fundamental issue is that most employers as well as people with cancer think that within a couple of months someone will be feeling better and will be back on their feet, whereas in reality it normally takes over twelve months and it can be real roller coaster – there will be good weeks and bad weeks. Often what happens is that people will get through their phased return and suddenly they will hit a brick wall, their energy won’t have come back, they will be feeling tired and stressed, thinking there must be more to life than this. A whole number of feelings arise – they lose confidence, their employer loses confidence and there is a vicious circle which results in the employee thinking I’m not up to this anymore and the employer thinking maybe the employee just can’t do the job and should leave. This is when things can go wrong. So there are really two issues which need to be tackled by employers – knowing more about cancer and how its treatment affects people, and becoming better at communicating with those of their employees affected by cancer.

CK: There were a couple of issues that arose on the workshop – one thing was the fact that people have to take medication to control the side effects of the original cancer treatment, which can then go on for many years. They then often experience knock-on side-effects as a result of taking these medications and have to manage this on an on-going basis. The other key topic seemed to revolve around tough conversations. These are actually some of the most important to have but of course it is very easy to be wise after the event, and someone who is fighting cancer, and going through chemotherapy might not have the energy to initiate these tough discussions. What typically do you suggest or implement if you are working with an organisation that wants provide more robust frameworks around dealing with this?

BW: We provide training for line managers or HR professionals – which can be half an hour or half a day long, covering legal issues (cancer survivors are covered by the equality act) through to how to manage the most difficult but important conversations at key stages of someone’s treatment. These are at point of diagnosis, when somebody is starting treatment, when somebody finishes treatment and when they come back to work. There are various things that employers should be saying or doing which can help the process immensely: training is one, and signposting resources and reading materials. The other area is coaching, one-to-one support for individuals. WWC run coaching on a session-by-session basis. Some people only need one or two to feel better, others might need more. In doing this WWC also provides advice and will help organisations to look at their policies and processes to see if they can be improved.

I think one of the issues that many big organisations have is that when it comes to dealing with long term absence, very often the procedure is quite punitive so all those policies are based on people not working because they are avoiding work.Therefore the long-term absence policy is geared towards some form of performance management. Often there is nothing in place to deal with people who are coping with a long-term chronic illness. They need to put in place a culture where employees who have had a satisfactory career but who have had the misfortune of getting cancer should have access to the support they need.

CK: Often, from diagnosis to treatment, the whole life-changing event of cancer can happen so quickly to people.Additionally, as we have touched upon before a lot of the time it’s not cancer that makes people feel ill, it’s their treatment.

BW: Yes, treatment can be debilitating in a number of ways and yet when people come back to work they often feel that have to act as if there is nothing wrong with them.

CK: There is a lot of comment at the moment about a change of culture away from the old City shoulder-pad mentality; and a greater acceptance that work isn’t the be all and end all. Have you seen evidence of a general change of attitude in the organisations you come into contact with that is helpful in the context of your work?

BW: There is definitely a growing awareness about health issues. Some companies are developing a more supportive culture and recognise that people have lives to live outside of work. Maybe to an extent some organisations are getting better. But it is a long road, and there are many instances I come across where people act with ignorance and unfeelingly towards others. Sometimes big companies aren’t great at dealing with people as individuals – they are sometimes seen and dealt with as part of a bigger ‘process.’

CK: You have spent many years in HR, you are now running WWC and of course you have been treated for cancer yourself so you really understand all viewpoints here. Do you have a goal for your organisation over the next few years?

BW: I would like to think we can form a network of associates, across the UK, of people providing services like those we provide now.Most of our clients are in the South East, but my goal is to encourage and develop wider recognition throughout the UK that helping people to return to work and lead a full life after cancer is a valid issue and an important service.In future we might extend our services to include other chronic illnesses but our focus is on cancer at present because so many of us are and will be affected by it.

CK: Thank you, Barbara.

More information about Barbara and Working With Cancer can be found at:

www.workingwithcancer.co.uk

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