[EJBonesParticipant]

Hi,

I am 30 years old and I have had myeloma for two years. In this time, I have had two courses of treatment and and autograft last year. I relapsed at the end of June and I am now undergoing my third round of treatment before I have an allograft. That’s the plan at the moment anyway.

Until my recent relapse, I would say that I felt reasonable supported by my employer, less so perhaps by my fellow colleagues who did not understand some of the concessions made to me (flexible working hours, special chair and time off for appointments). Unfortunately, now, my employer has referred me to the ATOS doctor and in doing so, have requested that I consider medical retirement. I was advised that the appointment with the doctor could result in a capability hearing regarding my long term employment.

I currently have every intention of returning to work when I am able to do so. I am not working at present but did work during previous treatments.

I just wondered what employment issues, if any, anybody else has experienced and if you have any advice for me based on that? My gut feeling on the subject is that because of the way myeloma is, it is too soon (and too pessimistic) to say that I am ill enough to never work again. Something backed up by my doctors. I am concerned however that because I am going to transplant, the length of time I will be off work is murky at best and this could go against me during a capability hearing.

I am trying to cling to my faith, that people can live reasonable and balanced lives with myeloma and if they choose to, include work in that scenario. Not least because myeloma or no myeloma, there are still bills to pay.

Thanks,
Emma

[petesilverParticipant]

Hi Emma

Sorry to hear you have myeloma in someone so young, however I think it would help you to contact the Macmillan nurses and/or your local CAB they are a mine of information and are very helpful in giving advice and help when you have personal problems of all types.

Regards Peter

 

[EJBonesParticipant]

Thanks Peter. Macmillan were my first port of call, and they have given standard advice about my rights under the DDA and I am obviously going through the usual channels via my work. The support centre in my hospital is very good, but it was specifically myeloma work related issues I was interested in. I believe, given my age, that it should be treated as a chronic illness, it may lead to reduced working hours, but it does not necessarily mean that work is an impossible feat. I just wondered how others who have been diagnosed pre-pensionable age have managed employment. A family friend also has myeloma, but he is self employed, and I know until recently, he continued to work full time after two autos and various treatments. For people with an employer, I guess it is slightly more difficult to be as flexible with hours for example, but I am interested in knowing how (or if) people have managed it.

Thanks,
Emma

[alicenorthParticipant]

Hi Emma

I’m not as young as you – I’m in my mid-forties. Before diagnosis 3.5 years ago, I was working full-time. I was subsequently signed off by my GP and have not returned to work since. I haven’t had an SCT because of other complications, but I managed to achieve remission on frontline treatment. Although physically I’m okay (am fortunate not to have bone issues)this diagnosis has taken its toll on my cognitive abilities and my mental health. I also have an 8 year old daughter to care for. I remember being very keen to get back to work as soon as possible after my treatment ended because I wanted to regain a sense of normality. Maybe it was also a form of denial in having myeloma. However, I found that once I’d achieved remission, the anxiety about when it would come back kicked in massively and set off a whole new set of problems.

Financially, I’ve been very fortunate. I received full pay for the first six months before moving on to permanent health insurance, which was a benefit within my terms of employment. This is received in conjunction with ESA which together, make up a certain percentage of my former salary. Therefore, I’ve experienced the claims process in both the private and public sector. My experience with ATOS has been, on the whole, without issues. They reassess me every six months. There is a now a section specifically related to cancer, which can be signed off by the GP, avoiding the lengthy form filling from previous times.

My employer, like yours, has largely been supportive. But they no longer pay me. A major insurance company reimburses them. Therefore, I have to deal with the insurance company as they regularly reassess me, which involves more form filling and telephone interviews which are often quite stressful. Obviously, they are very keen to get me back into work so they don’t have to pay. I’m not saying I’ll never work again, but currently, I’m in a limbo position. The plan is for me to have an SCT on relapse (I also have amyloidosis so there are further risks on an early SCT) and I feel that I can’t really focus on work until I’ve reached that stage.

I know my situation is different to yours, but my experiences so far, have been that outside agencies are very keen to get me back into work. However, I don’t know what my employer’s stance would be if I wasn’t being paid by the insurance company and I was still effectively within their head count. I would be surprised if ATOS found you incapable of never being able to return to work, particularly if this stance wasn’t backed up by your doctors. Good luck to you Emma and apologies for the rambling response! X

[CarolsymonsParticipant]

Hi Emma

Hi Emma

3 months after SCT I was able to return to work (inner London high school…NOT classroom based) on a phased return with the expectation stated clearly by the Head that I was to be full time (6 1/2 hours daily) within 6 weeks. Fortunately I was able to manage that within the time scale. Through the initial treatment I was off work (dissolved collarbone) but returned on a phased return also while waiting for transplant. Over the 18 months since diagnosis I have used 10 1/2 months of sick pay (9 months full and rest half pay. I have to say my Head was co-operative during this time. I did check with the union about the 6 week deadline for the phased return, but they said there were no clear guidelines. Surely at your young age your employer could be accused of disability discrimination? Fight this cruel decision with whatever strength you have left during your battle with the “myeloma” gremlins. As you say you will probable be around for many more years. Would they begin this process with someone who was absent with diabetes? I don’t think so.

[finnParticipant]

Hi Emma

I was in my early forties and in full time employment when I was diagnosed with myeloma. During the first induction therapy I took 6 months off work as the chemo made me feel so bad. After that I needed a different drug to continue with the therapy and during that time I went back to work. That was mainly because my boss repeatedly asked me to, I was able to work on a phased return three days a week, and the second drug combo Rev and Dex did not make me feel too unwell. 6 months of this and then I had an SCT and so I was off work another 5 months. All this time I was on full pay and I was never asked to do more than I felt capable of doing. My workplace was amazing. It is a big place though so they can afford to be generous. After another phased return I am now back in full time work. Hope you will be able to continue with yours, it does make me at least feel more normal. Good luck

[MothasParticipant]

Emma do you mind me asking what kind of work you do? You are legally protected and as a myeloma patient you would qualify as being described as disabled. Was an HR person present when your boss suggested you consider medical retirement and what were their reasons.

I had my SCT just over a year ago, was allowed sick pay and a phased and supported return. The Macmillan site has some useful information sheets on this and you might want to drop them a line to talk through your situation. Edit, I’ve just seen you’ve already done this.

• This reply was modified 10 years, 2 months ago by  Mothas.
• This reply was modified 10 years, 2 months ago by  Mothas.

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