Q&A about working when you have cancer or returning to work after cancer and other long-term illnesses - ANSWERS BACK

[RachelMumsnet]

We're running a Q&A this week about working with and after cancer and other long-term illnesses.

Joy Reymond, head of rehabilitation services at Unum, and Lesley Howells, centre head and consultant clinical psychologist for Maggie's Cancer Care, will answer your questions about help and support in the workplace - whether for yourself, a relative or a colleague with cancer.
Please post your questions before midday on 10 September and we'll post the answers on 23 September.

Unum Financial Protection Insurers commissioned research with Oxford Economics which shows there are over half a million people in the workforce who either have cancer or are recovering from it. This is set to rise to over 1 million employees by 2030, making it a major issue for both companies and their staff. If an employee has difficulty communicating effectively with their employer when they're off sick, they can feel isolated and rejected at a time when they're already feeling vulnerable. To help employees through this difficult time, Unum - in conjunction with Maggie's - has produced a couple of handy guides around communication and returning to work that will hopefully make this transition easier. For more details, help and advice, see unum.co.uk/

This Q&A is sponsored by Unum

This is interesting. I have a rare form of lymphoma and it is almost impossible for me to work in a conventional manner - because of the unreliability of the illness, great levels of exhaustion and often the various treatments I have to do. But if I did apply for a part-time job - how much would they judge me on my medical history? I am not ready for that step yet, but I have worried that I am never going to be employable...

Also interested as am currently having chemotherapy although my work is being very supportive at present (allowing me to work from home when well and employing an assistant in the office).
Also concerned about my DS2 who has CML and will be graduating next summer - what implications might that have for him in the job market? Apart from a few weeks in hospital when initially diagnosed he has led a completely normal student life since then and is extremely fit and otherwise healthy. However, I wonder whether he would have to disclose he has leukaemia and whether that would be considered a disability under the law.

I genuinely hope this conversation is of help to many people and I don't wish to hijack it but Unum is at the same level as Atos to me. Sorry. I am highly sceptical that Unum wishes to be of help to anyone. (unlike Maggie's)

From their wikipedia page, 'Advising the United Kingdom government on claims since 1994, Unum has been involved with the UK's controversial Welfare Reform Bill.[7][8] Unum was investigated by the BBC in England[9] and were described by critics as a 'rogue firm''

And more recently their chief medical officer's report of 2007 ( here ) was pretty horrifying.

But as I said I hope that the conversation proves very useful to those with cancer who would like to work again. It's clearly something which affects a lot of people and there should be a dialogue about how disabled people who want to work can be helped to do so. I just think people should know this company has an agenda when discussing such things. I.e encouraging very unwell people back to work so it doesn't have to pay out insurance claims.

A question for Lesley please: my DH is in remission from DLBCL (Non Hodgkins lymphoma) and has been back at work since April following chemo. He hates it. In the space of 10 months he has had the cancer dx, six months of chemo and both of his parents have died, both suddenly and unexpectedly. Unsurprisingly he now is struggling and his employers are about to make his role redundant. (employers who incidentally have no sick pay scheme, so it was ssp throughout his chemo, no contact from them and no support whatsoever, no phased return, utter rubbish!) It would be a blessing (hardly in disguise) if he were to take the redundancy and run, but he appears to have agreed to stay on for lower pay in the grade below his current one, the same grade as those staff who he currently manages. I can't see this working out for him at all. I think it's going to put him in an even worse place emotionally. Any pointers for me to support or advise him through this?

Cancer's covered under the DDA (I've just rewritten a handbook for women who're working with cancer...)

Cancer used to be under the DDA, it has been replaced by the Equality Act 2010 which amalgamates all previous anti discrimination legislation.

sorry, was talking rubbish, of course it's under the Equality Act, I apologise. But it, and other degenerative conditions, are there.

I would love to work when I can but my health is unpredictable. I could work for one week of the month probably. How could the benefits system cope with that? I can't even volunteer as I can't commit to anything as I would constantly be letting people down. It sucks.

The Q&A is now closed. We've sent the questions over to Joy and Lesley and we'll be posting their answers up next week.

@Itstartshere

I genuinely hope this conversation is of help to many people and I don't wish to hijack it but Unum is at the same level as Atos to me. Sorry. I am highly sceptical that Unum wishes to be of help to anyone. (unlike Maggie's)

From their wikipedia page, 'Advising the United Kingdom government on claims since 1994, Unum has been involved with the UK's controversial Welfare Reform Bill.[7][8] Unum was investigated by the BBC in England[9] and were described by critics as a 'rogue firm''

And more recently their chief medical officer's report of 2007 ( here ) was pretty horrifying.

But as I said I hope that the conversation proves very useful to those with cancer who would like to work again. It's clearly something which affects a lot of people and there should be a dialogue about how disabled people who want to work can be helped to do so. I just think people should know this company has an agenda when discussing such things. I.e encouraging very unwell people back to work so it doesn't have to pay out insurance claims.

Hi there

Unum have responded directly to your post and wanted us to post this up immediately to dispel any myths and explain how and why they are working with charities such as Maggie's. Here's their post:

In response to your post, we wanted to reassure you that Unum has never worked directly with the UK Government, although Unum was invited - alongside a number of other companies - to join a working group due to our expertise in supporting return to work for people with disabilities.

Unum is an expert in providing rehabilitation advice, and every day their industry-leading rehabilitation team play a vital role in helping people with cancer and other long-term illnesses build their self-esteem and provide normality, a sense of purpose and a focus outside of their illness. Last year, Unum and Maggie’s came together to pool their expertise to provide tailored support for people with cancer and their employers. Together they’ve developed materials aimed at helping people adjust to life after cancer, and have facilitated free workshops to educate and up-skill employers on how best to support their employees with knowledge, empathy and understanding.

We hope that helps explain why Unum and Maggie’s are working in partnership and the support that they are able to offer together.
For more information, you can visit www.unum.co.uk/workingaftercancer

Thank you Rachel, that's interesting.

We now have Joy Reymond and Lesley Howell's answers back and are going to post them on the thread. Thanks to everyone who joined the Q&A.

@Punkatheart

This is interesting. I have a rare form of lymphoma and it is almost impossible for me to work in a conventional manner - because of the unreliability of the illness, great levels of exhaustion and often the various treatments I have to do. But if I did apply for a part-time job - how much would they judge me on my medical history? I am not ready for that step yet, but I have worried that I am never going to be employable...

Your concerns are very valid. Many people feel that they may never be employable as a result of their diagnosis. Although you may feel that you may be judged by future employers, you are protected by the Equality Act.
If your thoughts are more about your ability to work because of your fatigue it would be good to speak to your medical team about how to best manage this. Looking at your blood levels, using relaxation techniques and pacing yourself as best you can all help to manage fatigue levels.

Often people find their confidence is rocked by a cancer experience and it is a good idea to plan how you might return to work and what you might want and be able to do. It’s good to do this with someone who can be a clear and objective resource helping you think it through whilst also talking through your concerns and fears.
You may be right about conventional work, but don’t give up! The workplace is changing rapidly and there may be unconventional work in your future, which doesn’t require a consistent level of energy and participation, and allows you to contribute as and when you can. This may be worth exploring with a trusted ‘other’; they may also be able to help you identify opportunities to contribute outside the conventional workplace – for instance on blogs like this. Doing this may help restore your confidence in what you can do.

@Lilymaid

Also interested as am currently having chemotherapy although my work is being very supportive at present (allowing me to work from home when well and employing an assistant in the office). Also concerned about my DS2 who has CML and will be graduating next summer - what implications might that have for him in the job market? Apart from a few weeks in hospital when initially diagnosed he has led a completely normal student life since then and is extremely fit and otherwise healthy. However, I wonder whether he would have to disclose he has leukaemia and whether that would be considered a disability under the law.

CML (Chronic Myelogenous Leukaemia) is covered in the Disability Act and therefore comes with the protection that offers. I’m glad to hear that your DS2’s CML has been well controlled and that it doesn’t seem to have adversely affected his student life. Hopefully this will continue to be the case and therefore should not have to feature in any application for jobs. Employers generally aren’t able to ask questions about health or disability before they offer a job and if he has no reason to see his diagnosis affecting his ability to fulfil the role then he should apply. Good luck.

@MrsShrek3

A question for Lesley please: my DH is in remission from DLBCL (Non Hodgkins lymphoma) and has been back at work since April following chemo. He hates it. In the space of 10 months he has had the cancer dx, six months of chemo and both of his parents have died, both suddenly and unexpectedly. Unsurprisingly he now is struggling and his employers are about to make his role redundant. (employers who incidentally have no sick pay scheme, so it was ssp throughout his chemo, no contact from them and no support whatsoever, no phased return, utter rubbish!) It would be a blessing (hardly in disguise) if he were to take the redundancy and run, but he appears to have agreed to stay on for lower pay in the grade below his current one, the same grade as those staff who he currently manages. I can't see this working out for him at all. I think it's going to put him in an even worse place emotionally. Any pointers for me to support or advise him through this?

Many thanks for your question. When reading your post I was struck by just how much loss you and your husband have had to endure in such a short time. You must be reeling! Such an emotional rollercoaster is not unusual for a couple going through cancer and then trying to rebuild their lives. Though the emotions (e.g. anger, anxiety, sadness) are a natural consequence of the trauma they are still really hard work to manage...and you have had to cope with such significant bereavements as well.

I can see why you think the redundancy would be a blessing - I know another wife in a similar situation with a similar view. But often, as I suspect you have observed in your husband, when someone has been through such a life changing experience as cancer they desperately want to cling to everything they think made them the person they were before the cancer and work is something many cling to the most! Work is such a huge source of self worth, it gives us a ‘sense of who we are’ or identity, it is a source of security, routine and provides a sense of purpose. It is also a means of providing for and protecting the people we love. So, although work is a difficult place for your husband to be right now, it may well be providing him some really important positives as well, and this may make it worthwhile for him to take the lesser job – at least for the time being.

It doesn’t sound like his employers are in the position to assist him find the fulfilment his job gave him pre-cancer. It may be that he starts to find purpose in his demoted role but I suspect your husband will, in his own time, begin to realise being with his pre-cancer employers now no longer provides the self-worth and sense of purpose he needs. Try not to get caught up in the crossfire of natural anger and fear that will come with this realisation by being quietly and patiently alongside and plant seeds of different ways of seeing the redundancy, for example, as an opportunity rather than yet another loss.

We all have values that guide how we live our lives (e.g. “looking after those I love”, “ being dependable”, “making a contribution to the world”). Cancer often forces us to find new routes to fulfil such values. Your role now is to help him find new routes. Be curious and creative as you make suggestions but also know that he will potentially shun your ideas initially. Nudging is good. If you are able to visit your local Maggie’s Centre (www.maggiescentres.org) or use the Maggie’s Online Centre, immediately you will find a team of professionals (e.g. cancer support specialists, financial advisors and psychologists) who are familiar with helping people in your situation. Also within a Maggie’s Centre you will have the opportunity to speak with other couples and wives who know ‘...just where you are coming from...!” . I recommend you get a copy of a book by Ray Owen, ‘Facing the Storm: Using CBT, Mindfulness and Acceptance to Build Resilience When Your World’s Falling Apart’ (2011).

I wish you well.
Lesley

@lisad123everybodydancenow

My husband has cancer and was dx 4 years ago. His work are now saying his 3 monthly appointments HAVE to go down on his sick record as it has to recorded. Is this even legal?

Having 4 doctor’s appointments a year on your sickness absence record is not in any way remarkable, as most UK workers take between 6 and 9 days a year anyway. But I sensed from your note that there might be more to this story, and that the recording of these doctor’s appointments are just the last straw. If that’s the case, and it is impacting on your husband’s pay and employment, then he might value a discussion about the bigger picture with some helpful organisations such as ACAS and CAB.

www.acas.org.uk
www.adviceguide.org.uk

To answer your specific question, however, there are best practice guides for absence management but each company has significant latitude as to how they manage things such as doctors’ appointments.

Here’s some great information from the Citizen’s Advice Bureau:
“The law automatically gives you rights to take time off work in certain circumstances. This time off will not always be paid….. Your contract of employment may give you extra rights - check it to see what extra rights you have. If you do not have a written contract of employment, you may still have extra rights which have been verbally agreed with your employer, or which have come about because of the way things are usually done in your workplace...Your employer may allow you time off work to visit the doctor or dentist but they are not legally required to do so unless your contract of employment says they are. Your employer can, for example, insist that you make these visits outside work hours, that you take holiday leave or that you make the time up later on. You should check your contract of employment to see what rights you have to take time off for doctors or dental appointments.”

I hope this helps and good luck!

@trice

I would love to work when I can but my health is unpredictable. I could work for one week of the month probably. How could the benefits system cope with that? I can't even volunteer as I can't commit to anything as I would constantly be letting people down. It sucks.

Thank you so much for your question Trice! You remind me of so many people I meet through my work. I’m not able to comment on the benefit system BUT I can definitely comment on the trapped feeling that can come when you live with unpredictable health and have a desperate wish not to let people down.

It does suck. Your ability to commit to a regular pattern of work is beyond your control but it doesn’t mean you can’t contribute and make a meaningful difference...full stop! Reading between the lines of your post you sound like a resilient character...I may be wrong but I suspect you have a determined streak. Many people in your position, quite reasonably, become very down and even depressed. A feeling of pleasure and a sense of accomplishment are the basic daily essentials for keeping our moods buoyant. When you are living with unpredictable health it can feel like opportunities to achieve a sense of pleasure and accomplishment are gradually disappearing – many people describe that it feels like their world is shrinking.

I would like you to think about the values you use to guide your life (I know I have spoken about values in another post but this is important for you too). Your illness may have blocked many of the routes by which you have fulfilled your values in the past. Now is the time to consider other routes. It helps if you have someone alongside whom you trust and respect to bounce off ideas; a partner, friend or therapist.

For example, your values may be ‘helping those in need’, ‘promoting justice/fairness’. Your route to fulfilling such values is going to have to be more creative than the norm but they are possible. Also lay to one side the idea of ‘letting people down’. When we are frustrated and feeling trapped we frequently lock ourselves into unhelpful thought patterns like “All or nothing thinking”, “Predicting the future” and “Taking things personally”. Such thought patterns often mean we don’t try something new ‘just in case’ it doesn’t work or we disappoint people. Catch yourself when you find yourself thinking in such ways and talk to yourself with compassion. Imagine your best friend is suffering in the way you are…what loving, supportive, encouraging things would you say to her?

Thank you for such an insightful and thought provoking reply. I've read it twice just now but will be back to read many more times to pick out all the nuggets of gold in there; also thank you for the book ref - will definitely get hold of a copy.