Return to work any advice welcome!

Im 5 weeks on from my laparotomy and doing great. I have a diagnosis of Pseudomyxoma peritonei and will need another big op. I mentioned to my boss that I would like to get back to work 'when I recover' so she arranged an occupational health appointment for me for tomorrow. Does anyone have any advice about what I have a right to request regarding my working conditions? I work in a very physically demanding job with adults with learning difficulties (some of whom have challenging behaviour) its NHS run.

28 Replies

  • Hi Jane

    This is amazing! A few weeks ago I'd never heard of this disease and I understand it's very rare. But, if my memory serves me right, a girl who was in hospital at the same time as me was diagnosed with it. She's not on this site but I stayed in touch with her and could enquire whether she'd be interested in contacting you.

    As far as work is concerned I'd only advise that you don't rush things. The Ulster Cancer Foundation, now Cancer Focus, might be a good source of advice on your rights.

    Very best wishes as always


  • Thanks linda, because PMP is so rare and every case is so individual its hard to know what to expect. It would be great to be able to talk to someone from NI who has the same disease and gone through the sugarbaker procedure in England. I have loads of questions! I will message u my email address if she is interested in talking to me :-)

    I will check out Cancer Focus for information.

    Jane x

  • Hi

    I picked up a Macmillian brochure and cancer, it is very good and has loads of brilliant advice. You can order them for free on line. In general through, you are protected by law and your employer has to make 'reasonable adjustments' to the workplace/your role to help you back to work. I would say (also in the advice - and a requirement of your employer) to go back in stages, gradually returning to full time and full responsibility.

    Good luck,

    Diane x

  • Thanks Diane, I will order the brochure.

    Jane x

  • Hi Jane

    I went back to work after my initial diagnosis, after surgery and chemo . I was an NHS nursing sister.

    My consultant didn't want me to work with the public while on chemo. So i was off for 5months.

    My work organised a phased return, starting with 2 shortened days per week and gradually increasing up to full time. This worked well and i loved being back at work.

    Your work does sound strenuous, I think 3 months is the very least time they will allow you to take off and you may need more. Have you looked at your sick pay entitlement? Make sure you know what you are entitled to, my wages got messed up a couple of times (underpaid never overpaid LOL)

    If you need it, you can ask them to give you a less strenuous role , they are not allowed to downgrade you though.

    My work were actually very good to me(except the wages dept).

    Best wishes,


  • Thanks Julie, I have been off sick since the middle of April (my tumour was so big I could hardly breathe never mind work). I have about 5 and a half months full pay then 6 months half pay, so i have a couple of months left on full pay. I was going to suggest that I go back and do paperwork for a month or so as we have alot of it! I cant wait to get back as I really enjoy my work and miss everyone terribly but I dont want to make myself ill by overdoing it. Do you use your annual leave for a phased return?

    Jane x

  • Hello Jane

    You are right to be careful about overdoing it. Your idea about doing paperwork is a good one.I had to choose between using A/L or using more sick time for the phased return, but they also just 'gave ' me a couple of weeks on a goodwill basis. In my case I had loads of annual leave that built up while I was off sick, so I used some of that (still had plenty left).

    If you are having more surgery, you may end up on half pay. When that happened to me( the cancer recurred and I had more chemo) I got SSP and became entitled to tax credits, I was a bit worse off but not that much.Hope this is helpful.


  • Thanks Julie, its hard because I am a single parent and my daughters father does not help financially so I am a bit concerned about going to half pay. However my mum and dad are a great support and I will manage, maybe I will win the lottery!

    Jane x

  • Hi Jane.

    My situation is similar.You get family tax credit for kids under 18 in full time education if you are on low income. Only 1 of my daughters was under 18 but if both of yours are thats going to mean you get more. I wasn't much worse off.


  • Under the Equality Act 2010 anyone with cancer is classed as disabled, which basically means your employer shouldn't be able to dismiss you because of your condition and has to make reasonable adjustments. However only 5 weeks after your laparotomy its a bit soon to be thinking about going back to work?

  • I think so but I think my boss misses me! Dont worry I wont be going back until I feel up to it. I have a sick line for another 3 weeks and hopefully I will be allowed a phased return. I didnt realise that I will be classed as disabled! My manager did tell me that because I work for the NHS I am well protected but she didnt tell me how. Hopefully the doctor I see today will have more information for me.


  • If you belong to a union, they will tell you how long your sick pay can continue on full pay level, then it drops to 50%. I had 4 months off on full pay and was well enough for a phased return then. I worked in teaching and I think NHS regulations may be similar. Macmillan will probably be able to tell you too.

    Take the time you need to get over this, it' often more tiring than we expect, even if we get over the initial op really well.

    Love Wendy xx

  • The Shaw trust can also work with your employer on your behalf advising on what reasonable adjustments can be made. Macmillian fund a post at my hospital and I went to see him a while ago but I've not been ready to start looking for work yet. I had my surgery a year ago

  • Hi just to add as per above . McMillan local contact can you give a list benefits you mube entitled to . Cancer is covered by disability act automatically and work has to make reasonable adjustments for you . Occupational Health should arrange a phased return for you . Make sure you are not doing to much


  • The occupational health doctor was very nice and we negotiated another six weeks off and then a phased return for another six weeks. She was surprised that I wanted to go back before my next op and said I would be entitled to take early retirement on medical grounds (Im not that sick... am I?). Hopefully I will be fighting fit by then and get back to the daily grind for a few months before the next (and hopefully last) hurdle! Thank you all for your advice :-)

    Jane x

  • Jane, if you have any more questions feel free to ask. I actually ended up going through all the stages, then took early retirement 3 1/2 years after diagnosis, as I kept needing more chemo . Managed to avoid the ' zero pay' stage , fortunately.

    Hope all goes well for you , I hear that the sugarbaker op has really good success rates.


  • Thanks Julie, the op does seem to do the job in alot of cases and although ordinary chemo doesnt work for my disease at least the op is usually a one off (if very drastic) treatment. Im youngish and fit and otherwise very healthy so I have a good chance of a successful outcome. Hopefully within the year (depending on when and if I am referred for the op) I will be cancer free and back to normal :-)

    Jane x

  • Dear Jane

    I would think very carefully about taking early retirement on the grounds of ill-health. As others have explained you will have accrued back-dated holiday pay which will enable you to make a staggered return to work. It's worth seeing how you get on over the few months. At least if you try returning to work you can decide at a moment's notice to retire if things dont work out - but it's a different matter to change your mind if you want to go back to work after accepting retirement. It's worth, however, checking with your Pensions Advisor how much you will be entitled to. I was pleasantly surprised to find out that if I'm considered unable to work at all my pension is made up as though I worked to 65 years of age, and my scheme made the provision of a lump sum as well as monthly income. xx Annie

  • Dear JBobDot

    I'm sorry I didn't see your question till this evening and I'm assuming by now you've had your meeting with Occupational Health. Hopefully they've been thoroughly helpful and supportive of you.

    The first thing is that you have protected characteristics due to having a disability under the provision of the Equality Act 2010. Your employer has a Public Sector Equality Duty to make reasonable adjustments for you to continue your job. These have to be reasonable in terms of cost to the employer, but might include part-time hours, regular planned breaks, additional assistance to perform various tasks, etc. I'm aware the provision under the Equality Act is slightly eroded in England compared to Wales but you nonetheless have these rights. Cancer is one of three degenerative medical conditions listed formerly as a disability in the 2005 Disability Discrimination Act.

    Usually the Occupational Health Nurse will draft report that is sent to you first for approval and then forwarded to your department/line manager. You should then discuss in detail with your management what can be put in place to support you. Your leave is also Disability Leave rather than sick leave so if your NHS operates anything like the Bradford Scale to monitor the amount of sick leave you take you should not be penalised for taking time off as a result of being disabled.

    Having said all this, I haven't had much luck returning to my job. I'm still 'in discussions'. If your employer isn't supportive in discussing all the options with you you should contact your Union Rep or join a union as they will provide support and expertise. It's also worth bearing in mind that any change to your job contract or job description has to be agreed by both parties unless there's a major reorganisational, economical or business case for a unilaterial change to your job contract. If your management do suggest changing your job the Public Sector Equality Duty requires them to explain to you what the problem is and include you in any discussions as to how to resolve this taking full account of your suggestions. You should not in any way be discriminated against in terms of your career options for having taken time off and perhaps needing 'reasonable adjustments' to continue working at the same grade/level.

    I do hope today went well. Please don't hesitate to get back to me if you feel you need some feedback, support or practical advice. I'm just hoping all has gone well for you and you can spend the weekend looking forward to returning to work. I'm sure your colleagues will be delighted to have you back looking strong and well.

    lots of love xx Annie

  • Thanks Annie, your advice is very helpful, especially the planned breaks bit. This is something I am worried about as due to my workplace being very short staffed on an ongoing basis we often dont get our breaks and have to eat our lunches on the hoof. I find this difficult and due to the often highly stressful situations we have to deal with I end up going home like a wound up spring! I will contact my union rep and discuss my rights in detail with him. My work colleagues have been a fantastic source of support with loads of visits and prezzies (they might want their prezzies back when they see how well I am though!). I am due to return to work in early August and I am hoping to negotiate a three day week for 3 weeks then a four day week for 3 weeks then back full time. I will see how I get on and then consider whether i need to reduce my hours although I feel so well at the moment I don't think I will need to.

    Jane x

  • Dear Jane

    I'm delighted you're feeling so well. I had the same good fortune and expected to return to my own job which I can do with no adjustments for the time being. My union has been wonderful - as have my colleagues. I've recently become a Union Rep and Caseworker and have just had a 3-day training which was helpful to understand employee rights. I've also had 20 years working in disability and equality related jobs and disability advocacy so I'm aware from both sides some of the issues of making provision, the cost to the work place of doing so and the worry for the individual involved.

    If you feel you would like to share anything - either here or on the personal messages please do keep in touch. I'm sure we can be a good support for one another. There are many more ideas relating to 'reasonable adjustments' to support you at work. You must ensure regular breaks are taken and that you have a proper lunch break - even if only for 30 minutes. It sounds as though this will impact on the other members of staff as I guess they will have to make up the time - but it makes me question whether you should all collectively meet with your union rep to explain you've all been expected to work without lunch breaks and this has caused unecessary stress. Collective action doesn't have to be confrontational and it can have very positive outcomes to highlight aspects of the working environment that could be improved.

    I wish you luck with all this. One hardly needs the worry of disability-related issues on top of everything else going on. Your continued well-being is the most important thing here.

    Love Annie xx

  • Thanks Annie, you seem to really know your stuff and I will not hesitate to ask for your advice if I run into problems when I go back to work. We have contacted the union about the lunch break issue but apparently we are paid for our lunch break and therefore are 'on call' therefore only legally entitled to 15 minutes break (which often doesnt happen). I dont mind missing my break when unforeseen problems arise but it now seems to be the norm and built into the rota rather than happening now and again. I will see how things go when I get back and contact my union rep if it doesnt improve. My colleagues are great and we usually try and work together to ensure we get breaks but its often difficult due to our work load and the unpredictable nature of our clients. Enough of my moaning! :-) Anyone would think I didnt enjoy my work and I love it!

    Jane x

  • Dear Jane

    I'm a bit taken aback by your conditions of work. Didn't you say it's NHS related - or is it that you work for a small private company. If it's a Government institution you may have better conditions of work than the private sector.

    You are entitled to a 20 minute paid break if you have a contract and work 6 hours or more per day and this is expected to be a break where you're not 'on call'. It's worth looking at which sets out the Working Time Regulations. Your employer also has a duty with regard to Health and Safety and if the nature of your work means that a 20 minute break is a H & S risk they are advised they may increase the minimum length of break.

    I would suggest the issue of the paid lunch break is an issue your Union should be looking at collectively. It's just about impossible to negotiate fair practice on an individual level. It's simply good practice for the employer to treat the employee with respect and with regard to their health and safety but in fact many individual managers fail to do this and view any single person who complains as a 'troublemaker'.

    The alternative is for you to keep in regular contact with your Occupational Health Nurse when you return to work and they can request specific adjustments in order that you can continue to work. I should imagine the minimum 'adjustment' would be a proper 20 minute break for lunch.

    What is good is that you love your work and you have a good relationship with your colleagues. So long as you enjoy work and you find it manageable keep on with it. Might be worth promising your partner or close colleague that you will keep this under review and take notice of their opinion if they feel you are struggling.

    Let's keep in touch. I've been back at work on full pay for 4 months but using back-dated leave so I've only actually worked 3 days a week. I'll have to revert to a full week in October. I've had to accept new duties which I don't enjoy and don't feel particularly well-equipped to complete. We have a new management coming in and a complete restructuring in the next year so I'll probably give some very deep consideration as to whether I want to continue though I am planning to continue my union activities by volunteering to help with admin work, etc. once I retire.

    Loads of love xxx Anni

  • Thanks Annie, it is Nhs run and its a big unit. We are given a 15 minute tea break in the morning (if we can get it) and then 15 minutes for lunch (again if we can get it). So we theoretically get 30 minutes altogether over the day. However we are always on call. We are told in the morning whether we are getting a break or not and as you can imagine it does affect morale. I will be making it clear to my manager that I will be getting my breaks (barring unforseen events) as planned and not accept being told in advance that I will not be getting a break. I know from experience that there is always scope for staff breaks throughout the day if we are prepared to be flexible and work between departments. I want to be able to stay in work until my next operation and remain well, hopefully my manager will work with me and the rest of the staff team are understanding (they are a great bunch and Im sure they will).

    I have a very close friend who also happens to be a work colleague, she is very good at telling me when I am close to cracking up and also will bend over backwards to make sure I get my breaks! Needless to say I do the same for her :-) I hope the changes in your workplace do not affect you too negatively and you are able to continue in work.

    Jane x

  • Dear Jane

    What you say about breaks is very interesting. Another way of looking at things is to ask whether any efficiencies can be made to the wards in order that they can operate smoothly whilst staff have their 2 x 15 minutes breaks.

    One of the things that fascinated me when I was in hospital and couldn't sleep were the various efficiency models posted on the wall to improve the working of the wards. The hospital had brought in a team to trace staffs' steps and had monitored the equipment used. They'd invested in additional items for each 6 bed unit, e.g. those blood pressure stands and this had saved staff time collecting them from another bay or going to another bay and then waiting for the equipment to become free for use.

    Perhaps it was propaganda ... but I was very impressed by the efficiency and smooth operation of the wards. I recall lunch and tea breaks being an issue with about 12 staff crammed in a tiny office with only standing room so perhaps the lunch/tea break system is bad across the NHS.

    I can't help thinking if Matron was in charge again things would run more smoothly!!

    love annie xx

  • Hi there..

    The Government site states that under the The Disability and Equality Act 2010

    'Progressive conditions considered to be a disability

    'People with HIV, cancer or multiple sclerosis are protected by the Act from the point of diagnosis. People with some visual impairments are automatically deemed to be disabled.'

    There is some other information which might be useful to you. I'll mail you. Take care....

  • Thanks Tina X

  • Looking through all these threads I would say, take all the advice on this that you can ....go back to work if you feel you really want to and can cope with it, but bear in mind that stress is one thing that can really undermine your health.

    Take care of yourself first at this time in your life

    Love Wendy xx

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