Working through treatment

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Hi everyone, this is my first post so bear with me!

I'm in my early twenties, diagnosed with endometrial cancer currently having oral chemo and hormone treatment to shrink.

At the moment- I'm feeling ok. Not too many nasty side effects, just a sore mouth, tiredness and no appetite. It's early days but so far very manageable and I feel lucky.

I work in a school and it's my whole world. I love my job and it's such a positive distraction for me at the moment. I think it contributes massively to my positive mindset. My medical team have said that working is my decision ultimately and is fine as long as I feel able to do so. I totally recognise that there may be a time where I need to take time off and am reassessing this every day. If I wake up feeling rubbish, I'll call in sick. Totally aware that I need to come first, not work.

Disclosed my diagnosis to management who have been very supportive and want to refer me to occupational health for an assessment. I appreciate that they are trying to support me, find out if I need any adjustments in the workplace and that they have a duty of care to me but as it stands, I've had no time off and am fit and able to do my job. If I hadn't had told them, they'd have no idea I was poorly. At work I appear fine.

I am not keen on the OH assessment for many reasons but the main one being my crippling anxiety when talking to people I do not know. Years of medical trauma means that I find talking to others about my medical problems very hard. I find the thought of a stranger (although a professional stranger!) probing into the details of my illness upsetting. I have also experienced things medically in the past few years that I'd rather not disclose to my workplace, or anyone to be honest. Just thinking about this assessment has caused me massive anxiety and I am struggling more with my mental health than my physical health. I know that OH is a supportive measure and there to help. But at the moment, I just don't want this. There is not much on this journey or in my life that I can control at the moment and my decision to continue working is one thing I can control.

Management are pushing for me to fill in the referral. I have spoken to Macmillan who are going to provide me with an email to pass onto my employer explaining that I'm ok to work. I'm also going to speak to my GP/consultant for a letter stating that I'm fit to work and that I don't need any reasonable adjustments right now. I hope that this will be enough to mean that I do not need an assessment.

My question is, can I actually say no to an OH assessment, if I have the backing of medical professionals saying I am ok to work?

Thank you everyone Slight smile

  • Hi Sparkkly

    I'm sorry you are going through this, and at such a young age too. It's great you still feel able to work as normal but also great you realise this may change and you will respond accordingly.

    Im ny experience (I work in the nhs) you are referred to OH if your line manager feels anything health related is impacting on your work or or your health and you need an assessment to sse if anything needs to change. In many cases the worker asks for the referral themselves.

    In your case it seems they have heard the word 'cancer'  and assumed you must have some sort of struggle, either mental or physical in coping with your diagnosis and treatment. If they feel yourr work is being done as usual and you clearly don't want an assessment, then you shouldn't have to have one.

    Perhaps you could clearly ask whoever is your manager to explain if they have any concerns about your work, and if not  explain that an assessment with OH would actually make uou feel worse and impact negatively on your mental health. Also explain if circumstances change and you need work adjustments to be made, then you will accept an OH assessment.

    If you do ever need one, ask for it to be carried out in a way that is most comfortable for you- e g on the phone, via zoom/skype or , if face to face adk to take a friend or colleague with you.

    I wish you well for your treatment and keep us posted on here.

  • Thank you so much for your reply. 

    I spoke to my employer today and explained that I can provide medical advice and evidence stating that I am fit to work. Employer wants to put a risk assessment in place so they are not liable- I totally understand this and agree. However, she says that medical evidence I am providing alone is not enough to inform this risk assessment and that I do not have a choice in being referred as I have disclosed my diagnosis.

    Unfortunately, the OH referral has been sent off without my consent. I feel so depressed and out of control as this is not what I wanted. I am now struggling with my mental health as a result of this and totally lost.

  • Hi Sparkkly,

    Are you in a Union through your school job? I wonder if they could advise.

    I understand the need to put a risk assessment in place and that they probably have their own policies and procedures they have to put in place.

    They may have done a referral to OH but through experience (in my previous job) this is actually a basic form that says something along the lines of they as the employer would like OH dept to contact you, the employee to carry out an assessment. However unless you give consent, then your doctor can not give any information/details of your medical records. I would expect you to get a letter from the OH department asking you to give consent and to be offered an appointment. No one can make you consent and no one can make you go to a medical appointment. 

    I do not know what is in your contract of employment, which is where your union rep could advise- to see if there is a clause that you need to participate. However you do have some control. Normally if someone does not agree to OH then they would need to make any decisions based on what they actually know, So for you - it is what you have told them and what your doctor tells them.

    I would suggest that maybe contact your GP to talk through your feelings about the OH and you can see whether there is a way around this. It maybe that your GP could provide only the information related to them being able to do the risk assessment. In a previous role, I did do risk assessments- and they can be quite basic and would not need a huge amount of medical information. 

    If I was doing one on your circumstances it would briefly state your diagnosis, your treatment, any adaptions needed and perhaps side effects of you medication. I would then have shown it to you and if you were in agreement, get you to sign and get agreement for you to show senior staff. 

    I am so sorry that you are being put through this when you need to be focussing on your health. Perhaps give the Support Line another call and get some advice. And if you do have a union rep, they could also look for you. 

    Take care

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you so much for your reply. This is really reassuring. I'm going to speak to my union rep tomorrow and see what they advise. Thanks again

  • Well worth doing. Occupational health is supposed to be a supportive measure but it is having such a detrimental effect on you while you are already dealing with the cancer- that it is having the opposite effect to what it is meant to. I do understand the school having procedures but I am sure there will be some way around it- meeting half way perhaps where the GP talks directly to the OH professional to give only the information needed to write up the risk assessment. No one can force you to have any medical appointments. It feels to me like the school is panicking a bit due to your diagnosis and are trying to do the right thing by offering help and also covering themselves for insurance purposes- but that they are going about it in the wrong way. Even if they do something like record it on your staff file- OH offered but declined. GP provided fitness to work documents. 

    There must be a way around this and I am sure that you will not have been the first person to not want OH. I know myself if I had been offered it during treatment- I would have refused -as just coping with the treatment was enough and I would not have been able to get my head around anything else. 

    You should not be feeling pressured in any way and cancer I believe is covered under the disability laws so it would be worth discussing with your union rep. Macmillan would also be able to offer information on your rights but have suggested union rep as they would have specific information re your contract. 

    Try not to worry too much- you are doing great to be able to continue to work during your treatment- so well done

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane,

    Thank you so much for your reply. It's been a difficult few days. My manager sent off the referral form containing my sensitive medical information without my consent. I was told I do not have a choice and that it does not matter what I want. This is just something she has to do. She said I am making things more difficult than they need to be.

    Spoke to the union rep today who was great and listened to everything that's happened and how I'm feeling about things. He has advised that I have to attend the OH assessment otherwise I will be on 'thin ice'. I basically have no choice.

    I feel that the last bit of control in this situation has been taken away from me. I feel so helpless and I have a horrible feeling of anxiety that I can't quite shake. It's so rubbish and I am now wishing I hadn't even told her about my diagnosis and just sucked it up and got on with it! Disappointed

  • Hi  

    I'm sorry to read that the last few days have been very stressful for you. If this is the general attitude in the workplace, I would think very carefully about remaining at work whilst having cancer and undergoing treatment. It may add a lot of mental stress onto a stressed by treatment body. 

    Pre cancer, I was very work focused and cancer was an inconvenience to me then. As my health deteriorated I recognised that my body was trying to tell me something. It couldn't continue being neglected and abused or continue the day to day stress of my job. An interesting book on this subject is When the body says no by Gabor Mate.

    When we are unwell we need to look after ourselves. Will you be able to do that in a work environment? Work roles are easily filled by others that are well. There is no replacement for you as a person.

    A x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Hi – I'm sorry you've had this experience. I do get how annoyed you feel. But, a small point of reassurance is that you do not have to discuss that report. Instead, when you get to your OH appointment you can explain how you feel about the form being sent, your feelings about work etc. You do not have to answer questions! The OH assessment I was forced to have (after just 2 weeks off sick with a visual issue) was very much trying to help me not my manager. In fact, management were furious at the adjustments the OH decided had to be made – he essentially blamed some cuts (staffing reductions) on my visual stress. So management got their "comeuppance". I also had a sibling go through an OH assessment and found the OH very much "on his side". Try to think of them as a support not a hindrance – and if the referral has itself caused upset then that may be something you need to reflect to the OH. Your anxiety is itself relevant to the assessment and any future assessments. Communicating how you feel about the whole referral is as much part of the assessment as talking about anything else. You could just go there and explain that the cancer was one thing, but the way this referral has made you feel ... Why not telephone the helpline on here and ask the nurses how they might approach this? Sending hugs xx

  • Hi A,

    Thank you for this. It's definitely something I'm finding myself considering more carefully especially after the last few days. I am unsure that remaining in a workplace with this attitude towards sensitive issues is sustainable in the long term. For now I am carrying on because I really do love my job but as soon as I start to feel I've 'had enough' I will absolutely listen to my body and slow down.

  • Thank you so much for this reply. It has reassured me. I have also done a little bit of research and am feeling slightly better/more in control in that I am the one choosing what I do and do not disclose to the assessor. Hopefully they will understand how much I would like to stay at work while I am fit and able to and will support me in achieving this. 

    My irrational/anxiety brain is so scared that I will be told I cannot work any more. I know this is unlikely as my medical team has said I am ok to be at work if I feel fit and able. But it's always at the back of my mind.

    Xx