If you have experience telling your employer about your diagnosis of kidney disease, what was it like? What do you wish you’d known beforehand and what really helped?
In reply to experiences telling your employer about Kidney Disease, I had the most horrendous experiences with my previous employer of just over 10 years service.
I started my employment with my employer in 2013 on a part time basis, with a high street retail, supermarket chain. I was diagnosed with CKD in 2015 with 36% egfr. I rarely had many symptons in my first 3 years, work had been informed and kept updated. In my lead up to dialysis, when my egfr kidney function had fallen to 4%, I began to have more time off due to chronic fatigue and lack of concentration. More hospital visits and checks were required, although I always managed to arrange them around my two days off.
I had spent 3 years on overnight peritoneal dialysis at home, this helped me to continue working. Finally having to reduce my hours from 24hrs a week down to 18 hours. The problem was my sickness absence was always increasing. The statuory sick days off for each colleague was 3 absences a year. I was regularly being hauled into disciplinary meetings. I did not feel my absence was excessive, it was normally around 5/6 absences per year. I managed to challenge them on their policy for colleagues living with a long term health condition, indicating the statuory days for sickness should be more than three absences. They agreed to increase it to five. After regular disciplinary meetings I began to feel it was challenging, and started using a Union representative, unfortunately they were pretty clueless and were no help at all. During 2020 and Covid with the stay at home period, living with CKD and being on dialysis was stressfull. Then as things started to open back up and we were back at work, things did not become any easier. Still the disciplinary meetings kept coming and the work refferred me to Occupational Health. By this time I was so stressed and tired from the constant meetings, I decided to ask for early retirement on grounds of long term health condition ( I was 56 at the time). My empoyer refused this request, stating the company did not do this. In the meantime O.H. had replied and were 100% behind me, with eveything I was going through. They only advise the employer, but unfortunately they did not take heed. I remember one of the requests was the employer was advised to do an individual Health risk assessment with me, every 3 months for the forseable futire. It was never complied with.
Moving forward to March 2021 when I was fortunate enough to have a BDD donor transplant. I had a great first 8 months, with a few niggles along the way for example adjusting medication etc.
Twelve weeks after the transplant I was back at work, with reducing my hours to 16hrs per week, still cautious as Covid was still around, and I had weekly outpatients which again I arranged for my day off. All the usual comments started with “ You’re looking well” to “ it’s all fixed now” and “ how does it feel to be cured”.
8 months post and CMV virus raised it’s ugly head. I had a very high dose of CMV virus in my blood and was taken into hospital for about two weeks. I was given antiviral medication but the CMV resisted and I had it continous for 16 months. My sickness absences started to increase again, along with the discipline meetings, each time having to explain my symptoms and medication routine to department managers who did not understand, or showed little interest. Late in 2022 I was once again refferred to Occupational Health, once again their support was greatly appreciated.
Other problems followed throughout 2023 with breathing issues, CMV had returned but not as viral as last time, and off course the disciplinary meetings continued.
In March 2024 I was feeling not so great, very fatigued and nauseous. In April 2024 I was in Hospital again, diagnosed with stage 2 transplant rejection. Cut a long story short, I had a two week treatment plan, given 10 treatments of ATG.
I was later informed the treatment didn’t work and that the rejection would return in 12 months time. June 2024 I had a short brief spell back at work, but was not coping very well. Disciplinary meetings continued, I was very weak, tired and almost giving up. A bit more time off was verified by my GP as he said I wasn’t ready to return.
I received an email in October 2024 from my employer stating I was being dismissed due to capability.
Apologies for the length of this story, but thanks for reading and I hope no one ever has to go through such an emotional journey with their employer. 
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Hello Doug, I am sorry to read of your woes. The reaction to your health problems by your employer appear very harsh and unreasonable. Have you taken any legal advice regarding unfair dismissal. It may be worthwhile . Meanwhile, i hope you recover and are employed again. You do not mention your age , not that this is relevant to your employment situation. All the best B
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Thank you @Beanbag
I had considered employment tribunal for unfair dismissal, as I had kept all the exact dates and copies of letters, but I had lost all enthusiasm and fight I had left in me.
I have not returned to work ( advice of my GP) incase having to go throught it all again. My rejection treatment must have done something as my egfr has been stable between 28/31% for the past 24 months. But still experiencing problems such as fatigue, osteoporosis due to steroid intake has taken it’s toll. I am 62 years of age, and involved in lots of volunteering keeping me busy.
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Fully understand . I am EGFr 21 and also suffer from fatigue and sometimes dizziness.Today I have been leaf raking in the garden and am now completely knackered .I am nearly 80, so perhaps I expect too much , but better too aim high ? The volunteering sounds good, anything that keeps the mind active is great. Keep it up. Good luck B
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I’m only 60, egfr 30ish & it completely exhausts me just to sweep the patio!
I do think we have to give ourselves a little extra grace 
living with this issue.
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That is what I think as well. Best wishes B
Just noted your communication Doug, you did not name the company??
- Obvious case of harassment.
- There are three levels of Disciplinary. Setting the number you identified is not a disciplinary system by any reputable company.
- This is constructive dismissal.
- You indicated O.H. but not a Person Risk Assessment as assessed against your full Job Description.
- Attending specialist medical appointments is legally permissible in company time. GP / dentist etc. should be in your own time as they are more flexible.
- Your union let you down badly - should be chasing them for support as you, I guess, had paid your Union Dues.
- Can organise all your information in date order, chat to a No Win No Fee solicitor and sit back to watch what happens - this is a good case.
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Thank you for the advice, this was all happening 2 years ago now, as I stated U was dismissed in October 2024 ‘ Due to Capability’ I was preparing to go to tribunal with all the info, date records etc.
Unfortunately I was exhuasted at the time, still getting over my period of rejection.
I was chatting to a friend last week about it, who was retired from a lengthy spell in HR and according to them, my previous employer can dismiss you by email, stating capability without having to issue the necessary warnings beforehand. It was a horrendous experiences that I would not like to repeat. 
Hi. I sympathise with you.
I’m the father of a life long kidney sufferer. Who fortunately has the most understanding boss in the world. My son is about to go on the “list” for the fourth time.
And work has already set up a plan for him.
In my past employement I was also a union rep for disabled employees. Your story was replicated with a union member. But fortunately his dismissal was stopped.
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Thank you, good luck to your son and best of luck. There is a mojority of sympathetic employers out there, unfortunately in retail most employees are just a number regardless of service and achievments.