iloprost infusions and work

[Rp321]

hi all, those on regular iloprost infusions how is this managed by your employer ?

ie is it taken as sick, work from home or some sort of special leave arrangement?

[Winfield1]

My old employer used to let me take it off as sick but my new I have to take holidays 😟

[Deby177]

It's a medical I took it under sick leave, infusion didn't work for me won't be having it again,

[OldTed60]

I now get Iloprost one day a month due to veins not coping with for longer periods. I am self employed so not sure if this option would help you - but I’m assuming you have HR and OH perhaps or not that kind of work place?

[Choc73]

Hi I have it recorded as sick but each day upon my return home after treatment I would work. Not that it gets appreciated. They don't like me taking the time off that's made very clear!

[GlasgowHen]

I have the infusions for 3 days every 4 weeks. The three days are recorded as working from home. My employer gave me an extra project to do to account for those days.. i am not capable of doing much during the infusions so the extra project is just done at a different time.

[Jacko37]

I take it as sick leave, once I was given paid special leave.

[Lyndabickley]

Hi

I’ve had several iloprost infusions. They have reduced the incidence of digital ulcers for 6-12 weeks. I have needed less since starting sildenafil. They are time consuming. I had5 days x 6 hours a day at least twice a year, which is not a problem as I am retired. The difficulties are having a cannula inserted at least 2-3 times during the week and iloprost can cause headaches and nausea but good management can help with this.

[Midgebite21]

I think this will very much depend on your individual employer. Hopefully you have good understanding HR and OH departments.

[ruablue]

hi Rp321

I hope you are doing ok. Raynauds can be considered a disability and therefore having this time off could be considered a reasonable adjustment - however this may mean unpaid. As recommended in other posts maybe speaking to HR - they may suggest alternatives such as using your sick pay system. Best of luck

[Petalpeople]

I work in a care home and we don’t get sick pay. For the last 12 years I’ve only had iloprost once a year so save up holiday. Doesn’t seem fair but that’s the caring sector!

[ChocolateMonster123]

Are you in the UK? Your employer should let you take your time in hospital and any recovery time as sick days. As your treatment is part of an underlying long-term illness you are covered by disability laws so any time of sick should ALSO not go towards any sickness triggers etc. I have contacted 'Disability Action' here in Northern Ireland who have confirmed this for me to but SRUK are good at giving advice about employment rights too. If they do not let you get your treatment and take it as sick leave they are discriminating against you....