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Talking to Employers about blood cancer

Just wanted to say huge thank you for Blood Cancer UK for very clear and simple guide for employers and colleagues about our situation after 19th July.

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Yes, I agree - I just read that and it’s really good!

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Hi @MoMo yes, I agree I really wish that I had had it when I needed it. I was in such a state of shock that I could not explain to my employers what I did not understand myself.
Thanks to Blood Cancer UK.

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@Erica I was thinking about same wish had had that when I initially told my seniors about my diagnosis. It’s So simply and clearly written!

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This fact sheet is excellent how I wish it had been available when I was first diagnosed. I was a union rep and knew my employment law but I found it much harder to present the case for myself than for other union members. Having a leaflet like this which explains the situation in a supportive way would have been so helpful. The update on Coronavirus is most welcome and I’d encourage anyone who has to have the difficult conversation with their employer to ask them to have a look at this.

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This is very good. A great explanation to keep for work and colleagues. I wish I had known this for work for my manager to read. It is still hard for others to understand blood cancer. Is there anyway we could get this received printed out by post please so I can keep this? Many thanks.

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Yes thank you . It is very good information and I for one am hoping it will get me out of this prison cell and back into my workplace :grinning:x

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Hi @Maria.G63 it sounds as if you have really struggled with shielding in your ‘prison cell’,
tell us about it.

Where do you work @Maria.G63?

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I work for the NHS and yes to be fair they are doing their utmost to keep clinically vulnerable staff safe however they have not factored in the impact on our mental health. I have not been in work now since January 6th and am finding both my mental and physical health have suffered greatly. There has been no support for sheilding staff and I do understand that they are very busy with Covid but some support should of been put in place as for me ive found its been a very lonely time. I do have family who give support but they are busy working. Obviously this new diagnosis has thrown a spanner in the works especially as my CLL has been behaving well for the past 8months. I’m awaiting another risk assessment to see when I can return to work and am so yearning for some sort of normality to return. Here’s hoping :crossed_fingers::crossed_fingers:

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Hi @Maria.G63. I really understand that sense of loneliness and I don’t think anybody understands that unless they have been shielding themselves or have had to return to work after shielding. I retuned at the end of April but my mental health has really suffered. I’m working through it with support. Hopefully you will be able to return to work on some level soon. Keep us updated.

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I probably only shielded properly the first time around and for other occasions just had a careful approach to getting on with my life but it didn’t make it any less lonely as I’ve had to make all of my decisions on my own. Clear guidance like this helps but ultimately I have to make my own decisions. I’ve been lucky that my bosses have been understanding and have never forced me to go into work.

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Oh @Maria.G63 it really sounds as if you have had a tough, lonely, very isolated time.
Yes, I do think so many people’s mental health has suffered, it is missing that human interaction, on whatever level, and as you say that feeling of some sort of normality.
I actually found that counselling helped me, I actually got it through my work, but sometimes GP’s can help. Alternatively it is possible to go privately, at a larger cost, and the BACP (British Association of Counselling and Psychotherapy) might be a starting point.
We are also here to support you as we really understand your feelings and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Please do let us know how the next risk assessment goes?

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@Maria.G63 ask your medical team to refer you to counselling services, they should ask this automatically or maybe not, so please ask. My work hasn’t offered anything else except one free session to all so not specifically for me but because of my cancer charity counsellor I’ve been having specialist support.

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I agree with asking for counselling I thought I could cope on my own back in 2018 I found I couldn’t
I was referred almost immediately to a clinical psychologist and was diagnosed with a form of PTSD after having a life threatening diagnosis
I was constantly wanting to feel safe and was paranoid about germs only visiting a couple of places that I felt safe
We explored the words that I was using and changed them I was also given coping strategies (although at the height of a panic attack you can’t remember them)
We explored all sorts eventually I felt able to talk about past issues too which helped me to understand why I was feeling some thoughts
Best thing I ever did was to ask for help

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That is a great Employers fact sheet
I work for a big retail supermarket and my brother who understands employment law has helped to secure a safe covid work environment.
I had an adjustment that due to my disability (myeloma) he could be my advocate
It took 6 months to get to the point of returning in Jan this year
We found out that there was a well being meeting we could attend with a head of stores who was very sympathetic and via teams listened to my concerns
I wanted to return to work but was being stopped by my store management team.
Health and safety and OH were involved and I have a case worker.
Between us all I have a WRAP (work related adjustment plan) that enabled me to return to work when sheilding ended in March
I have a cleaning plan in place a small bubble of 3 colleagues I start at 7 and I’m in the petrol station (the safest place for me)
My WRAP has just been extended for 8 weeks while the delta variant is high and all adjustments stay in place.
I’m contacted one a week by phone to see how I’m doing by my manager.
After this next 8 weeks my WRAP will be myeloma based instead of covid and apart from my bubble everything else will remain as it is
My colleagues are supporting me by wearing masks

19th July this week has been very stressful feeling vulnerable to customers with no masks
I have now had a work badge saying I’m an extremely clinically vulnerable colleague and I also wear Blood cancer Uk badge saying stand back I’m sheilding
Both of these have enabled me to have a conversation that has highlighted that all though I look well I have blood cancer and asked customers to stay well behind the screens rather that trying to look around them

Hopefully this will inspire those of you who need it

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Hi @2DB I am really impressed with how you have asked for help in both your posts with such positive results.
I think a real determination and positive attitude have got you to where you are today.
I am sure that your posts will help so many so please keep posting and I look forward to hearing more about you…

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Thank you @Erica
While I’m finding my way around the forum I will try to encourage inspire where I can
Is there a newbie section :slight_smile:

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Hi @2DB if you go to the top of this page and click on the 3 red lines you will see ‘categories’, click on that and you will see the main categories down the left hand side.
‘Welcome to the Blood Cancer UK community’ is when people often post, but you might find one of the other categories more apt.
It is more important that you do post, than where, we are very easy going on here !!!

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It’s taken me ages to realise how to find my replies :nerd_face:

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