Employment

[SPARKY1]

Hi fellow kidney sufferers, I was wondering if anybody knows what percentage of dialysis patients are unemployed and what percentage are in full time employment? My consultant sometimes asks me if I'm working although I don't feel well enough to hold down regular employment. I also do my own HHD 5 days a week and I feel drained when I'm finished. It also feels like unpaid work as I do the same as the nurses and renal technicians but because I do it voluntary they do not consider it as work! Maybe the NHS should give people who do their own dialysis some remuneration for the work they do or their carers, they would then probably regard it as work then! Just a thought, like to hear your comments on this issue of work.

[Advocacy_NP]

Hi sparky1

Currently approximately 27,000 people receive dialysis in the UK; the median age for haemodialysis patients is 64.4. This information comes form the Renal Registry renalreg.com/Reports/2013.html So we know that the population on dialysis is predominantly retired, while we don't know the exact figures a small percentage of working age dialysis patients do manage to work. These patients generallly undertake home dialysis, or twilight unit-based dialysis which allows them to fit dialysis around their work. If you do HHD there is the potential to explore part-time work or even full-time work; if you've been out of work for a while it's sometimes helpful to see if there is any voluntary work you might want to do for a few hours a week - this can sometimes lead to a job but otherwise looks great on a CV. It's understandable that you feel tired and drained after HHD - do you feel like this all the time? If so you might want to assess what your iron & HB levels are? You identify your HHD as 'unpaid work' another way to look at it is doing something for yourself, providing yourself with treatment that is on your terms, at times that suit, that provides really good outcomes - it could provide you with the opportunity to access employment? Hope this helps - best of health and luck to you.

I speak as a patient that was of working age on satellite-based haemodialysis and worked full-time.

[SPARKY1 in reply to Advocacy_NP]

Thanks for the reply and input Advocacy, very interesting to know most Haemodialysis patients are nearing retirement. Unfortunately I was unemployed when my kidney problems started, if I was employed I think it would have been easier to return to work depending on how physical the work would have been, a lot of lifting and carrying would have been physically impossible with my low energy levels, so a sedentary job would be ideal. Currently our unit aims for Hg levels of 116-125. Most normal men have Hg levels between 130-180 giving them far more oxygen in the blood and more energy therefore feeling less tired doing manual labour. However, thanks for the positive input.

[Goldeneye]

The first time I was on dialysis I went from full time to part time I did this for 2 and a half years but when I had problems after my transplant and had to be on long term sick I did not qualify for sickness benefit as I had not paid enough in stamps in the last 2 years despite working full time for 27 years prior to my kidneys failing ,but had I not worked part time and stayed at home I would have been entitled to all the benefits going. It's not until you are ill that you learn about these things. I am now back after 7 years on home haemo and I am not working,some days I have energy and some not. I'm fortunate enough now at 53 to have my mortgage paid up and my husband is on pension credit so we just manage, I dialyse every day at home although I am only paid by the hospital for 5x2 hour sessions. I receive £90 every 3 months and I think this just about covers the electricity. It's very costly being a renal patient but at least at home we are in control and can get on with a much normal life.

[SPARKY1 in reply to Goldeneye]

Thanks for your reply and input Goldeneye, the benefits system is a minefield and it's best to use a welfare rights worker to help with all the forms and paperwork. I only get £90 for 5x3 hour sessions so your better off than me there. It is rather expensive doing HHD so every penny we can get helps. After all we are saving the NHS money by doing it at home while the save on paying staff wages. I wonder how long did your transplant last?

[Kibibi90]

Hi

I worked fulltime during dialysis because I was 26 when I started with being otherwise fit and healthy and having a very understanding boss. I continued working for 8 years after my transplant but had to give up because of other health issues making work more difficult to cope with. It really does depend on the individual as to whether you can work and dialyse but I knew of many who were just like you.

If I was in your situation I'd firstly check I'm receiving all the benefits and payments you are entitled to, The NKP Advocacy service will help you with this. I'd also question my consultant as to why they keep asking if you work. The main thing to remember is don't let anyone or anything stress you out too much; at all times listen to your body as it's your body that will tell you what you can and can't do.

[SPARKY1 in reply to Kibibi90]

Thanks for your reply Kibibi90, I was 54 when I started dialysis and 58 now. Not a young man any more. Finding work at my age isn't easy especially when you are ill and disabled. You are right it does depend on the individual as to whether they feel fit to work. I also have other medical issues that stress me out. I think I am getting all the benefits I am entitled to so my welfare rights worker assures me. I think my consultant keeps asking me as a hint or prompt for my to get work, but, he wouldn't know how difficult it is to get work at 58 and being disabled. Whether we like it or not sick and disabled people are at a disadvantage in the jobs market. I am determined not to be stressed out by work, dialysis or my consultant, and get as much rest as possible. Thanks for your positive input again.

[Goldeneye]

Hi sparky1 in reply to how long my transplant worked I had it for 7 years unfortunately my iga nephritis attacked it after 2 years and it was gone 5 years later. I had my friend giving me a kidney and some weeks before the transplant day she got divaticulitis so all abdominal surgery was cancelled.I then was having my daughters kidney and on the day going to see the transplant surgeon for a date for surgery she noticed that I had developed an anti body against the kidney so that was called of and now we are on the paired scheme and so far no one matches me,being a renal patient is certainly trying but it's nice to know that we are not alone and that there are a few of us out there. I wouldn't wish kidney failure on my worst enemy but hey we are alive and every day we wake up and get our head of the pillow we have cracked it.

[Hidden]

Apart from voluntary work and keeping busy for my health, I'm 'unemployed'.

[poppydolly]

my employers keep on at me about returning to work despite the fact that my current sicknote does not expire until mid-November but as far as they are concerned because I am now on dialysis I am 100% fit and able to return to work but at 57 and having worked non stop for 42 years I do not feel that I could cope with the pressure of work they put on me

[SPARKY1 in reply to poppydolly]

Hi Poppydolly, I would not let them pressure you poppy, if you don't feel well enough stay on the sick. You should easily get another sick note from your doctor. Good luck.